Gavin Bollard – The Special-ism Posts – Volume 1 and 2
Special-ism: Professional Blogs addressing the ISMs of your children http://special-ism.com/
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Gavin Bollard – The Special-ism Posts – Volume 1 and 2
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Gavin Bollard: The Special-Ism Posts – Volume 1 and 2 Version 2.0, January 2018
Contents Introduction ................................................................................................................................. 6 About Gavin Bollard................................................................................................................. 6 Special-Ism ............................................................................................................................. 6 A Door to Advocacy and Leadership for Asperger’s and a Special Kind of Fame.........................7 Finding Alternative Activities .................................................................................................... 8 Resisting the Urge to Rewrite Your Child’s Future .......................................................................9 Using Visual Aids to Take Advantage of Your Child’s Visual Learning Style ..............................11 Computers can do lots of things. ...........................................................................................11 TV is your friend. ................................................................................................................... 11 Real Life is a Great Classroom ..............................................................................................12 Home experimentation and demonstration is a good way to teach Science ...........................12 Teaching Basic Life Skills to your Special Needs Children ........................................................13 The Dangers of (S)mothering your Children...........................................................................13 Getting down to the Detail ..................................................................................................... 13 Beyond the Detail .................................................................................................................. 14 Discipline and Kids with Special Needs .....................................................................................15 Is There a Place for this Behaviour? ......................................................................................15 Punish for Danger, not for Behaviour .....................................................................................15 Making Mistakes....................................................................................................................16 You Still Need to be Strict ...................................................................................................... 16 How do I Discipline? .............................................................................................................. 16 Helping Your Special Needs Child to See Past Their Own Point-of-View ...................................18 Understanding Individuality.................................................................................................... 18 Understanding Different Values and Expectations .................................................................19 Understanding Differences in Sensitivities .............................................................................19 Learning by Example .............................................................................................................19 What is “Stimming” and Why is it Important? .............................................................................20 Providing Feedback to Our Senses .......................................................................................20 Sensory Overload.................................................................................................................. 20 Stimming as a Stress-Reducer ..............................................................................................20 Stimming Because it Feels Good...........................................................................................21 Reducing Stimming ...............................................................................................................21 Teaching Your Special Needs Child to Swim .............................................................................22 Initial Problems with Learning to Swim ..................................................................................22 Trying Again .......................................................................................................................... 22 The Third Attempt..................................................................................................................23 Lessons Learned................................................................................................................... 23 Recognizing Sensory Overload ................................................................................................. 24 Unnoticed Sensory Pain ........................................................................................................ 24 Increased Stimuli on the Senses ...........................................................................................24 Consequences to Sensory Overload......................................................................................24 Behind Sensory Overload ...................................................................................................... 25 Managing Expectations and Reactions During Visits and Gift Exchange ...................................26 Coaching and Preparing ........................................................................................................ 26 Knowing When Enough is Enough ........................................................................................27 Emotional Interpretation of Children with Special Needs ..........................................................28 Looking for Emotions............................................................................................................. 28 Where to Look for Emotions .................................................................................................. 28 Improving Your Bond with Your Child ....................................................................................29 Make Shopping a More “Kid-Friendly” Experience for Special Needs Children ..........................30 Special-ism: Professional Blogs addressing the ISMs of your children http://special-ism.com/
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Wider Effects of Intolerance................................................................................................... 30 Positive Approaches .............................................................................................................. 30 Environmental and Social Factors .........................................................................................31 Take a look at your child’s behaviour too. ..............................................................................31 Planning Breaks .................................................................................................................... 31 How Shopping Centres Can Help ..........................................................................................31 Why We Need to Advocate Against Our Children’s Labels ........................................................32 Labels and Children............................................................................................................... 32 Labels for Invisible Differences ..............................................................................................33 Some Ways to Promote the Individual ...................................................................................33 Summary............................................................................................................................... 34 How Can Scouting Help Children with Special Needs?..............................................................35 Choosing a Group .................................................................................................................35 How Exactly does Scouts Develop Critical Skills? ..................................................................36 Kids with Isms Can Benefit by Using Lists .................................................................................38 The Pleasure of Lists............................................................................................................. 38 The Value of Using Lists........................................................................................................ 39 Tools for Lists ........................................................................................................................ 39 Displaying Confidence in Your Special Needs Child ..................................................................40 All Eyes on Your Child .......................................................................................................... 40 Allowing Your Child to Gain Independence ............................................................................40 Learning to Let Go................................................................................................................. 40 Suggestions to Build Confidence ...........................................................................................41 Navigating the Nightmare of Special Needs School Lunches.....................................................42 Uneaten Lunches .................................................................................................................. 42 Changing the Contents of School Lunches ............................................................................43 Changing Your Lunch Routine ............................................................................................... 43 Reducing Computer Overuse Problems in Kids with Special Needs ..........................................44 The Downside of Computer Usage ........................................................................................44 How Computers May Affect Kids with Special Needs.............................................................44 Restricting the Number of “Computer Hours” .........................................................................45 Tips for Combating the Effects of Overuse.............................................................................45 Summary............................................................................................................................... 45 Taking Things Literally – An Issue that Matters .........................................................................46 Here’s a somewhat different example, which really happened. ..............................................46 From Fish to Dogs – Selecting a Therapeutic Pet......................................................................48 Fish – Visually Calming ........................................................................................................ 48 Dogs – Man’s Best Friend ....................................................................................................48 Service & Therapy Dogs ........................................................................................................ 49 Other Pets ............................................................................................................................. 49 Detect and Deal with Anxiety.....................................................................................................51 The Impact of Anxiety ............................................................................................................ 51 Detecting Anxiety .................................................................................................................. 51 Open and Closed Spaces ...................................................................................................... 52 Social and Confrontational.....................................................................................................52 OCD ...................................................................................................................................... 52 Object (including Food) Related ............................................................................................52 Dealing with Anxiety .............................................................................................................. 53 Discipline Tips for Age 10 and Up ............................................................................................. 54 Keep Discipline in Mind ......................................................................................................... 54 Ensure Discipline is about Teaching ......................................................................................54 Use Deterrents ...................................................................................................................... 55 Take Things Away ................................................................................................................. 55 Escalating Discipline Results in Failure..................................................................................56 “Probability Goals” Keep your Perfectionist Child from Giving Up ..............................................57 Probability Goals ................................................................................................................... 57 Using Probability Goals in Real Life .......................................................................................58 Special-ism: Professional Blogs addressing the ISMs of your children http://special-ism.com/
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Using Probability Goals in Homework ....................................................................................58 Using Probability Goals in Sports...........................................................................................58 Is Your Child a “Class Clown” to Gain Acceptance? ..................................................................60 Bullying and the Class Clown................................................................................................. 60 When Clowning Backfires...................................................................................................... 61 Non-Harmful Clowning .......................................................................................................... 61 Change Your Child’s Behavior to Attract Less Attention ............................................................62 When “Being Yourself” Causes Social Problems ...................................................................62 A Stuffed Toy Example .......................................................................................................... 62 Correcting Behaviors .............................................................................................................63 A Food Example ....................................................................................................................63 A Dressing Example .............................................................................................................. 63 Meltdown? Reduce Sensory Input, Reduce the Intensity ...........................................................64 What is a Meltdown? .............................................................................................................64 Avoid the Meltdown ...............................................................................................................64 Meltdown Triggers and the Fuel............................................................................................. 65 Reduce Stimulation ...............................................................................................................65 When Parents Disagree – Focus on Treatment.........................................................................67 Noticing the Dissimilarities .....................................................................................................67 A Simple Look at Genetics ....................................................................................................68 Focus on Treatment, Forget the Labels .................................................................................68 How to Develop Realistic Goals With Children ..........................................................................70 Why Set Goals?..................................................................................................................... 70 Setting Goals......................................................................................................................... 70 Setting Measurable Goals ..................................................................................................... 71 Scoring Anxiety? Choose Non-Competitive Sports ....................................................................73 A Move to Scouts .................................................................................................................. 73 A Quest for Activities .............................................................................................................74 Want Kids to Respond Positively? Don’t Mince Your Words ......................................................75 Get Attention First .................................................................................................................75 Avoid Complexity................................................................................................................... 76 Give Clear & Precise Direction .............................................................................................. 76 Soften Chores with Sweetness ..............................................................................................76 How Does Your School’s Rewards Program Fair?.....................................................................77 Why Should Any Child Be Left Out? ......................................................................................77 Kids with Isms Left Empty Handed ........................................................................................77 Every Child Deserves Recognition.........................................................................................78 Advocating for All Kids........................................................................................................... 78 Rewards Mean So Much More to Families and Kids with Isms ..............................................78 Kids Can’t Work Together? Separate Them ..............................................................................80 Look After “Number One”.......................................................................................................80 The Production Line .............................................................................................................. 81 When Things Go Wrong ........................................................................................................ 81 When Things Can’t be Resolved ...........................................................................................81 Detect & Harness Your Child’s Special Interests .......................................................................82 What are Special Interests?................................................................................................... 82 How do Special Interests Develop? .......................................................................................82 Detecting the Special Interest ................................................................................................83 Problematic Special Interests ................................................................................................83 Harnessing the Special Interests ...........................................................................................83 Plan Ahead to Reduce Anxiety .................................................................................................. 84 When Fight is Triggered ........................................................................................................ 84 When Flight is Activated ........................................................................................................ 84 Reduce the Everyday Anxiety ................................................................................................84 Social Stories to Reduce Anxiety ...........................................................................................85 Plan for the Unexpected Anxiety ............................................................................................85 Roll with Unexpected Anxiety................................................................................................. 86 Special-ism: Professional Blogs addressing the ISMs of your children http://special-ism.com/
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Discover How to Become More Effective Parents......................................................................87 Watch Out for the Negative Spiral..........................................................................................87 Adjust Your Living Hours ....................................................................................................... 88 Adjust Your TV Viewing ......................................................................................................... 88 Consider Medications ............................................................................................................ 88 Remember, You are Number One .........................................................................................88 Nap Time = Time Out ............................................................................................................ 88 Divide and Conquer ............................................................................................................... 88 Exercise for Endorphins......................................................................................................... 89 Wake Up Earlier .................................................................................................................... 89 Respect the Need for Breaks................................................................................................. 89 Move into Homework Routine................................................................................................ 89 Uncover Anxiety with a Simple Game........................................................................................91 Anxiety – Beyond Harmless Fears .........................................................................................91 Get a Handle on your Child’s Anxiety.....................................................................................91 Discipline: End the Cycle of Yelling ...........................................................................................93 Get a Handle on Your Yelling................................................................................................. 93 Actions and Consequences are Teaching Tools ....................................................................95 Give Your Brain the Downtime it Needs – Set Devices Aside ....................................................96 High Risk of Overuse Injuries ................................................................................................96 The Lack of Downtime ...........................................................................................................97 Lifestyle Impacts....................................................................................................................97 And the Answer is… .............................................................................................................. 97 Higher Education – Choose What Meets Your Child’s Needs ....................................................99 Higher Education isn’t Always Better .....................................................................................99 Trade Schools may be More Suitable ..................................................................................100 Explore Micro Business Opportunities .................................................................................100 Own Your Stress and Live More Peacefully.............................................................................101 Worry Over Job Security...................................................................................................... 101 A Move Out of the Comfort Zone .........................................................................................101 We Create Our Own Stress ................................................................................................. 102 Put Happiness First .............................................................................................................102 Work Through the Logic ...................................................................................................... 102 Computing Technology – Keep it in a Shared Family Space....................................................103 Keep Computing Technology Together................................................................................103 Protect Against Inappropriate Material in Computing Technology ........................................103 Foster Safe Online Play with Computing Technology ...........................................................104 Avoid Addiction of Computing Technology ...........................................................................104 How Deaf People Listen – How You Can Help ........................................................................105 The Clues Deaf People Use.................................................................................................105 Repetition Not Always Key ...................................................................................................106 A Little More Context Please ............................................................................................... 106 Silver Bullets for Deaf People – Not .....................................................................................107 Sign Language .................................................................................................................... 107 Hearing Aids ........................................................................................................................ 107 About Special-Ism ................................................................................................................... 108 What is Special-Ism? .......................................................................................................... 108 What is an “Ism”, you ask? ................................................................................................. 108 Special Online Promotional Platform for Clinical Professionals ............................................108 Supporting Our Amazing Readers .......................................................................................108
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Introduction About Gavin Bollard
Gavin is a dad who discovered that his own differences were due to Aspergers while researching his son’s diagnosis. His blog, Life with Aspergers, delves into the day-to-day details of Asperger's and related conditions while maintaining a focus on the positives. From 2011 to 2017 Gavin participated with a group of bloggers on a site called Special-Ism. With the closure of that site in 2018, he has preserved his posts in this eBook. This is a free ebook dedicated to helping people with Asperger’s syndrome and other Ism’s communicate with those who love and care for them.
Special-Ism Special-Ism was a site which collected the resources of a number of international bloggers relating to the raising of children with special needs. The phrase “Special-Ism” was frequently used in place of autism and any other differences in order to make the material appeal to a broader audience rather than to a specific sub-group of special needs children.
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A Door to Advocacy and Leadership for Asperger’s and a Special Kind of Fame This post is part of the series titled “When One Door Closes, Another Door Opens,” where people reveal how their paths have changed since a child with special needs has entered their lives. ~ Danette Schott (Co-Founder of Special-Ism). We all have closed doors. I grew up being told by supportive grandparents that I’d be something special someday. They bandied around ridiculous job titles such as “Prime Minister” even though I’ve never shown any interest in politics. Gullibly, I believed them. When my good grades and general performance didn’t attract attention, I merely assumed that eventually it would. Eventually my famous destiny would come calling. I’m still waiting. As time went on, I realised that I was getting too old to make major breakthroughs. I began to pin my hopes on my children being famous and then suddenly, out of the blue, special needs slammed that door shut completely. First one son was diagnosed with Aspergers, Attention Deficit Hyperactivity Disorder-I (ADHD-I) and Nonverbal Learning Disorder (NVLD), then the other received high-functioning autism (HFA). The diagnostic process is still continuing and we’re currently pondering the next set of letters. It was difficult coming to terms with the fact that both of my offspring had limitations on them. I’d often cited my own deafness as the target of blame for my mediocre career and now suddenly, my children were having their futures taken away. I could have given up then. I’m sure I considered it for a time. As I began trying to get to the root of my children’s “problem” in my need to understand everything about it, I was unaware of the transformation taking place. The more time I spent Special-ism: Professional Blogs addressing the ISMs of your children http://special-ism.com/
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researching my son’s condition, the more I learnt about myself. Eventually it became clear that I shared my son’s condition (Asperger’s Syndrome) and more importantly, I discovered that I’d thrived with it. Far from being a limiting factor in my life, Asperger’s has made me who I am. I have a right to be proud of my accomplishments. As for fame; well, fame really just isn’t important. I stopped thinking about my failure to achieve impossible things. They were never actually dreams or ambitions of mine after all. Instead I began to look at how I was changing as a person. How I was becoming more accepting, more knowledgeable and more a part of my children’s lives. I began to see that these small successes were far more important than my “greater failures”. As I began to accept myself, so too, I began to accept my children for who they are. These days, I do a lot of things with my children but I also find myself looking out for other unlikely heroes too. I’m trying, via advocacy, to bring a greater understanding of Asperger’s Syndrome to the world – and I think I’m succeeding. This time, I’m not trying to do things alone but in concert with hundreds of bloggers around the world. It’s not about fame, it’s about helping – and it’s about being a part of something great.
Finding Alternative Activities When the door to more traditional extra-curricular activities, such as soccer, was closed to my children, I sought an alternative. It was scouts. Instead of having training nights and Saturdays which are focused on the need to keep running constantly – something my children have problems with. They now have a huge variety of activities. Every night is different. I followed my children through the door which had opened. By becoming a cub scout leader, I was able to help them keep up. I began to see the differences between my children and the group and I began to work on reducing the social impact of those differences. At the same time, I discovered other children in the group who could use a little help. As a cub scout leader, I’m making a difference to the lives of many children. There is always a place for special needs children in my pack. We actually have “differently-abled” nights where my pack gets to learn about how differences can make life difficult for some people – and how their actions can help to make their lives more enjoyable. It’s more than simple understanding and acceptance though. I reward cubs in my pack when I see them helping others and it always brings a tear to my eye when one will jump up and run over to help another who obviously could use some assistance. Acceptance starts with the self and my children accept themselves for who they are. They accept others for themselves too. Their limitations no longer confine them, they simply point the way towards the open doors. One day, maybe one of my kids will become something famous but for the moment, they are all already something great.
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Resisting the Urge to Rewrite Your Child’s Future Life can be tough for children with special needs. As parents we often grieve for losses which were never an option. For example, an athletics-focused parent of a wheelchair-bound child may grieve the loss of an Olympic opportunity. There are a few ways to look at this. First of all, it’s a little selfish for a parent to expect their child to fulfill their dreams. Children are there for their own sake, not to give their parents a second shot at goals they may have missed. While I’m sure that these plans aren’t intended to cause harm, it’s very clear that they do. Secondly, it’s unfair to put expectations on a child at such an early age – and especially unfair to do this when the child is in the womb. I know parents who mercilessly put their children through music or swimming practice with the intention of creating a maestro or champion. It’s rarely successful and often the pressure of having to perform when their friends are out having fun pushes these children away from their parent’s pet subjects – and ultimately away from their parents. Thirdly, why are we writing off the child’s future with the idea that they will never achieve a specific goal? Surely the para-olympics have taught us that even the most physically disabled people are capable of amazing feats. Of course, it’s easy to point out these things when looking at physical disabilities. We can clearly see the impact that science is having on this area in terms of supports such as wheelchairs, prosthetics and even corrective surgery. It’s much harder to understand how parents discriminate against their own children by writing off parts of their future when the child has invisible special needs. I see this all of the time in the autism community. Parents decide that their child will never get married or will never be able to live independently. They worry about the long term future of their children and become depressed and uninspiring parents whose mental state does nothing for their kids. Even worse, their vision of the future may become a self-fulfilling prophecy because they take all of the appropriate action to ensure that their children never stand a chance. A parent who
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decides that their child with autism won’t become a swimming champion may withdraw them from valuable and potentially life-saving swimming lessons. In some cases, the depression even sparks a murderous rampage which terminates the life of a child because of a lack of imagination and acceptance on the part of the parent. I’m sure we’ve all read of stories like that in the newspapers. They all start with the smaller emotions of disappointment and resentment. In the invisible special needs world, we have labels. For some strange reason, many parents think that once their child has a label, all of the symptoms and conditions of that label apply. This is silly – it’s unlikely that anyone has “all” of the symptoms that their label dictates. Don’t get me wrong. I’m not against labels – in fact, I’m very much in favor of them. Labels can be very handy for obtaining funding and for handing your child over to a new teacher without a three hour discussion. It’s just that many parents see labels as a list of limitations rather than guidelines for negotiating their child’s difficulties. A label will tell you what things are likely to be difficult for your child – not what they can’t do. For example; it’s clear that people with Asperger’s Syndrome have social difficulties. Perhaps it’s even implied that many people with Asperger’s Syndrome might have difficulty forming lasting relationships although personally, I know plenty of aspies who have gotten married and stayed that way too. What irks me is when I see a letter from a parent saying; “My twelve year old son has Asperger’s Syndrome and will never marry – what can I do to make sure that he is cared for after I die?” Seriously. How can you write off your child’s future at twelve? The majority of the things which are possible for the general population are also possible for your child with invisible special needs. Concentrate on what they need in the present – not what they might lack in the future.
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Using Visual Aids to Take Advantage of Your Child’s Visual Learning Style Every child with invisible special needs is different. For some, listening, reading and writing develop naturally and to a high level but for others, these things are a struggle. Some children learn best by seeing and doing things. We often refer to these children as “visual learners”. The schools of yesterday weren’t well positioned to educate visual learners, often funneling them into art, woodwork and cooking classes which prepared them for trades careers while ignoring academic development. Modern schools have improved on this considerably but still lack the time and facilities to bring a truly visual approach to academic subjects. As parents however, we have now some excellent opportunities to help our special needs children reach their potential at home. Here’s a few tips to get you thinking:
Computers can do lots of things. Reach beyond the traditional ideas of a computer as a business tool, games machine and research tool and start using it for visual education. Search YouTube for re-enactments of famous speeches, archival footage of events, science experiments and mathematics explanations. Use PowerPoint to make electronic flashcards and use Google translate for foreign languages – did you know that it not only gives written translations, it “speaks” them too.
TV is your friend. Yes, we know that too much TV is bad for you but visual learners will pick up much more via the pervasive power to TV than they will in books. Expose your children to documentaries which complement their school syllabus and movies which match their reading materials. Branch out and find movies with less obvious links. For Special-ism: Professional Blogs addressing the ISMs of your children http://special-ism.com/
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example, ask your history students to make a list of clothing worn and food consumed by various members of social classes in Braveheart. A few prompts will go a long way towards putting the focus where it belongs.
Real Life is a Great Classroom Real life situations can teach a visual child much more effectively than a classroom. Take your child shopping with you and ask them to find the cheapest items or the best value by weight. Give them money to buy things and ask them how much change they should expect. Take a drive and measure your car’s fuel economy. All of these things can help to bring mathematics to life. Museums, art galleries and monuments can bring stories to life. Visit them to talk about animal camouflage, dinosaurs and history. After all, looking at artifacts can often tell you a lot more about a culture than a book. Many museums today offer practical sessions on paleontology and other skills. They may be for younger kids but take your special needs children to them, they’ll learn a great deal.
Home experimentation and demonstration is a good way to teach Science Science isn’t just a textbook subject and many of the abstract concepts of science, such as planetary movement, eclipses and phases of the moon can be easily demonstrated with a torch and several pieces of fruit. Chemical concepts can be demonstrated with simple home experiments, as can electronics, magnetism and mechanics. Experiments can make dull academic subjects seem real to your child and can be applied to many other disciplines such as mathematics. Try taking your child to the local park and measuring the distance between points using only footsteps. If lines are marked, such as on a football field, you’ll find it very easy to demonstrate Pythagoras’ theorem. If your child is a visual learner, don’t assume that they will need to learn a trade because academic topics are too difficult for them. Adapt to their learning style. The results may surprise you.
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Teaching Basic Life Skills to your Special Needs Children Lets face it. As a parent, you simply won’t be around for your child’s entire lifetime. Sooner or later your child is going to have to become independent and the earlier you start teaching these skills, the better. Unfortunately, many children with special needs, particularly those with Asperger’s Syndrome, don’t pick these life skills up automatically. Things which are automatic for other kids must be explicitly and repeatedly taught to them.
The Dangers of (S)mothering your Children Many parents of children with special needs become so fixated on fulfilling their child’s needs that they forget to allow them room to do things by themselves – and more importantly to fail. We’ve all heard the expression “to learn from one’s mistakes” but for some reason, we’re afraid to allow our children to do this. This is a perfectly reasonable scenario where danger is involved but in safe situations, it’s simply wrong. Far from protecting our child’s fragile self-esteem, we are actually causing long-term independence and esteem issues by not allowing our kids to feel a sense of achievement when they succeed and we’re not teaching them anything about handling failure gracefully either. It’s tempting to do everything for our special needs child and it’s hard to resist fixing their mistakes. How many mothers straighten or remake the bed after our kids have made them? How many fathers end up building their child’s models because they’re afraid of the poor quality of the finished product? This isn’t being helpful, it’s being overprotective, smothering and a perfectionist- and it’s not helping your children at all.
Getting down to the Detail Neurotypical or “normal” children tend to pick up a lot of life skills simply by watching or interacting with others but many special needs children live in a world of their own. This is especially true of children with Asperger’s Syndrome who devote enormous amounts of mental activity to their special interest. You might think that your child is paying attention but if you could see into their mind, you might find that they’re thinking about Lego Star Wars figures instead. It’s
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little wonder that they don’t pick up much from simply watching you. They have to be taught skills – and taught explicitly. Take brushing ones teeth for example; There’s actually quite a bit to the skill. The child has to make sure that they’ve finished eating and drinking for a while then get their toothbrush, wet it, put toothpaste on and then attempt to follow a pattern around their mouth to make sure that they get everything. Even the act of squeezing the toothpaste out has several components including a judgement of the amount to put out and the need to remember to put the lid back on. Finally, everything related to teeth brushing needs to be cleaned and put away. All of these steps should be put in order on a whiteboard in the bathroom. As a parent, your primary focus should be to guide your child through the steps, ideally without prompting. You need your child to understand why they are brushing their teeth and what can happen if they don’t. It’s not just about teeth falling out or going to the dentist, it’s the social issues of bad breath and poor hygiene that they need to understand, particularly as they approach their teens.
Beyond the Detail Your initial goal should be to get the child doing all of the steps to brush their teeth automatically. 1. Procedure: One way to achieve this is to slowly wipe parts of the sentences off the whiteboard while still leaving enough for them to follow. Hopefully they’ll be following through the steps without the board eventually. 2. Quality: Once you’ve got the steps happening, your next goal needs to be quality. You need to look at the way that their teeth are being cleaned and ensure that they are doing a good enough job. You should not attempt to correct on quality until the initial challenge of the procedure has been dealt with. 3. Speed: Finally, once your child has mastered both the procedure and the quality, the last thing to work on is speed. You need to use a timer to find out how long it takes them to brush their teeth and then reduce the time by one minute every few days until they’re accomplishing the task in the time required. Note that by accomplish, we mean completed – not half done. If it takes your child one minute to put everything away, then you may need to remind them to stop brushing with one minute to spare. There are many more life skills to cover such as bathing, shampooing, packing their school bags, putting on their uniform and buying things at the shops. You should avoid teaching several similar skills at the same time but they should all be taught in similar explicit ways. Every little detail must be covered. This may seem tedious but independence is a quality which simply can’t be undervalued. It’s probably more important to your child than their academic studies and yet very few parents and schools actually teach it.
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Discipline and Kids with Special Needs Current thinking suggests that spanking and shouting are not acceptable forms of discipline but show me a parent who has done neither and I’ll show you one who has either given birth to a saint or is a pathological liar. We’ve all done it and we all feel terrible about it afterwards but that isn’t the reason it’s wrong. Apart from the threat of physical damage, there are psychological issues too. Plus, of course, there’s the fact that children who are hit by their parents tend to grow up believing that violence is an acceptable solution and one day, they’ll be strong enough to hit you back. Unfortunately, this still leaves us with the need to instill discipline in our children.
Is There a Place for this Behaviour? There’s no consensus on this but in my opinion, below a certain age, only simple responses are effective. I feel that a toddler is better off receiving a slap on the wrist or a stern voice than pain from the electrical outlet they’re prodding with a fork. Sure, you can take the fork from your toddler and cover the outlets in your house but what about when you visit others? The sooner your child learns to avoid danger, the better.
Punish for Danger, not for Behaviour It’s a small step from punishing a child for running off toward a dangerous street to punishing them for disobedience. As the parent, you’ll have to determine which are “danger” issues and act accordingly. For example, I used to punish my toddlers for throwing things at people but not for general throwing. You should avoid shouting and spanking punishments for behavioural issues. Sometimes, such as when your child destroys treasured heirlooms, you just have to let it out for your own sake. If that’s the case, try to do it away from your child.
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Some behaviour which seems naughty isn’t actually naughty at all. The sly look that your child gives you when dirtying their nappy isn’t necessarily disobedience and to punish for this can add considerable delays to toilet training.
Making Mistakes We all make mistakes as new parents but there’s no sense in agonizing over them. Move on and try harder next time. If you find yourself losing your temper with the kids, make sure that you take time-out for yourself. Put them into care and if it will help, talk to a counselor. If you think that you’re in a dangerous state around your children, it’s better to have someone collect them for a while – even if you contact a helpline and ask for assistance. Don’t be afraid to ask for help because we all need it from time to time.
You Still Need to be Strict Unfortunately, you can’t go down the path of new age parenting either. I know people who discipline in cutesy baby voices or cuddle during a reprimand. These niceties do nothing for discipline. Instead they give the child power over you. The child feels rewarded with attention and will repeat the behaviour. Far from stopping an activity, you’re actually encouraging it. Strict parenting is a main feature of shows like Supernanny, but unfortunately the “naughty corner” technique won’t necessarily work with a child who has autism – at least, not until they’re much older. As a general rule though, all forms of smacking should be gone by about six years of age in a child on the spectrum. In children with fewer difficulties, smacking should stop much earlier. To extend past this age is to run the risk of instilling violent behaviours into your children. It’s tempting to switch from smacking to shouting and indeed many parents, myself included, do this unintentionally. Shouting isn’t a great method either but it’s a little less harmful than smacking except when used too often. You’ll find however that you can get much better results if you use it sparingly. The other thing to avoid is “put-downs”. Do not tell your child that they are “stupid”, that “they won’t amount to anything” or that “they won’t live past 30 if they keep eating sugar”. Putdowns stay with your child well and truly into adulthood.
How do I Discipline?
Always keep in mind that discipline doesn’t mean punish, it means teach. Whenever you’re in “discipline” mode, try to take a moment to decide what the object of the lesson is. Too often, you’ll find that it’s all about you. It’s your way of taking revenge on the child who knocked over your vase or who dropped rubbish on the floor for you to clean up. Too often we secretly want to see our kids cry because of what they’ve done to us. If that’s the motivation, then stop – don’t use discipline as punishment.
Sometimes you’re too emotional to discipline. If that’s the case, assign a task for later; for example, you can say; “Young man, you will be picking up every piece of that paper that you have just shredded”. At that point, if you need to take some time out to regain control, then do so. You’ve made the requirements clear.When you’re calm, you can return and start your child on their task. Don’t forget that some special needs children won’t be capable of cleaning up their messes without assistance. You may have to help by pointing at each bit of rubbish or get in and actually help.
You’ll find that as your children get older, things like time out corners and food or monetary rewards will become more effective. Don’t be afraid to give these things a try even if you know they haven’t worked in the past.
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Most of all though, avoid correcting your child for every single thing. Remember the mantra; Don’t sweat the small stuff. Some things, they just need to learn on their own.
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Helping Your Special Needs Child to See Past Their Own Pointof-View It has long been thought that people with autism have “no empathy” and it’s really only now that this concept is beginning to be understood. These children certainly feel emotions, arguably more strongly than neurotypical children. They just have a lot of trouble understanding how other people are feeling and they have great difficulty expressing empathy in terms that others can understand. Throw in the immersive “special interests”, a tendency for bluntness and black and white thinking and it’s easy to see where the “no empathy” idea came from. One of the first steps in overcoming this issue is to encourage your child to look past their own point-of-view and to try to understand how other people feel. It’s not an easy concept to teach but it’s certainly a worthwhile one.
Understanding Individuality We often talk about individuality but rarely fully explain the concept to our children. “We’re all different”, we tell them, and then we tend to leave it at that. Our children believe that they understand. Some kids have blonde hair, some black, some brown. There’s a great variation in eye colour and shape and in various other features. Our concept of individuality tends to be primarily external. We need to take extra steps to ensure that our children understand that individuality is very much an internal thing. Everyone thinks differently and our thinking is moulded by our past experiences and by our upbringing. A good way to explain this is to talk about a solid object, such as a car and to ask for the child’s opinion. Once you have the child’s opinion, ask: What would a very rich person, such as a king, think of the car? What would a very poor person think? What would a person who has never seen a car think? Another good example would be to talk about the value of food to various people from different walks of life. Your child might hate carrots but you may find that it’s never occurred to him to think that some people actually love them.
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Understanding Different Values and Expectations Once your child has grasped the concept of individual thinking, the next step is to understand that people have different values.The car example leads into this by demonstrating how the concept of value changes depending upon a person’s wealth. Life values are surprisingly similar. A person who lives among liars may place very little value on the truth because they automatically expect to be lied to, while a person from a very truthful family may always expect the truth. Each is correct in their own world, but when they interact with each other problems will occur. Each will expect a different behaviour from the other. Clashes in values invariably lead to conflict. I’ve always told my children that their ideal lifepartner will be someone who shares the same sorts of values as them. They can come from different religions, different cultures or different economic backgrounds but so long as their values are similar, their relationship will stand a chance. The basic tenet of value is respect. You must be able to identify and respect that which is valued by others. Sadly, I’d argue that more than half of the people in today’s society lack this level of respect. Teaching your children to respect the values of others is difficult. Unfortunately, people don’t generally wear their values on their sleeve for everyone to see and it’s hard to respect that which you don’t understand. I’ve spent many of our car trips explaining different religious points of view to my children, trying to teach them to respect the beliefs and values of others. I believe that I’ve largely succeeded but taking the concept further into “invisible values” isn’t going to be easy.
Understanding Differences in Sensitivities My final point concerns differences in sensitivity. Everyone has different sensitivities and we all carry a lot of emotional baggage. Even worse, those sensitivities shift with time and circumstance. For example, larger people have problems with the word “fat” while slimmer people do not. The exception here is slim pregnant people, who suddenly develop a lot of issues for a brief period of time. This is very difficult concept to explain to children without hurting them to do so. You don’t want to point out your child’s own sensitivities to them but sometimes pointing them out is the only way to get them to understand that others have sensitivities too. Sometimes the direct approach is far more effective than simply telling your child not to make personal observations. After all, sensitivities go well beyond simple appearances.
Learning by Example Learning is not something that is just for the classroom. Learning continues throughout all parts of life. As a parent, the best that you can do is make the most of the examples that life throws in your direction. Whenever the opportunity arises to show your children that others can have a different point-of-view, seize that opportunity and make the very most of it. Remember that the best role model that your child can have, is you.
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What is “Stimming” and Why is it Important? Does your special needs child frequently rock, bob their knee, make annoying humming noises, squint or smell strange things that they shouldn’t? These behaviours are sensory stimulation or stimming and they’re not simply normal. For a child on the autism spectrum, they’re an essential part of coping with life.
Providing Feedback to Our Senses Stimming involves supplying feedback to the senses. There are five commonly discussed senses; sight, hearing, smell, taste and touch. There are also a few extra senses including equilibrioception (balance), interoception, and proprioception (your body’s position). Then of course, there are internal mental registers which seem able to receive stimulation of their own. You’ll find that stimming behaviours address one or more senses, for example humming sends signals to both auditory and tactile senses (hearing and touch).
Sensory Overload People on the autism spectrum often suffer from sensory overload. Note that sensory in this context applies to more than just the five senses. For example, hearing bad news or a sudden change of plan may not seem “sensory” to us but to the person on the spectrum, it’s an internal mental overload – and it causes a lot of stress.
Stimming as a Stress-Reducer Stimming provides feedback which can distract and reassure a person on the autism spectrum. By rocking for instance, a person on the spectrum may engage their mental, proprioception, equilibrioception and tactile senses in other work which prevents them thinking about an issue which is affecting them. This is the reason why you’ll notice an increase in stimming behaviour when your child is under stress.
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Stimming Because it Feels Good Of course, most stimming behaviours occur naturally without any intention on an individual’s behalf to use them to deal with particular stress. A child may stim simply because it feels good. They may also be completely unaware that they are stimming. These behaviours can be quite annoying at times as they draw unwanted attention to your child in the form of bullying and they can can often be damaging too. One of my son’s worst stims involved chewing on his shirts. The behaviour has only recently stopped – and he’s twelve. You can imagine our disappointment at finding every one of his shirts chewed with no possibility of handing them down to his younger brother.
Reducing Stimming
Unfortunately, there’s little you can do to stop stimming, though making the child aware of a stim is a good first step.
Where possible, you can try to encourage your child towards less obvious stims, but be careful. I know parents who just wanted their children to stop nail-biting and when a new stim emerged it was far more obvious and dangerous. Sometimes you just have to accept the small things.
The next time you see your child stimming, try to think about the senses that are being used and the issues which need calming. It could be something that is on your child’s mind or it could simply be that your music in another room is too loud.
Stimming is normal and we all do it. Perhaps we don’t do it to the same extent as people on the autism spectrum but maybe that’s just because we’ve found other, “more civilised” ways to stim. Listening to music, chewing gum, smoking, playing with our pens and tapping our fingers are all forms of stimming and they help to make us feel calm.
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Teaching Your Special Needs Child to Swim I’ve heard it said that it’s best to get your child into swimming lessons as early as possible. In fact, age one was suggested within our mother’s group. As it turned out, this was poor advice within our mostly dysfunctional (obsessed with appearances) group.
Initial Problems with Learning to Swim I’m not saying that the time was entirely wasted, certainly the commitment to one hour per week of holding the baby and learning silly songs did wonders for me as a new parent. The swimming lessons however did nothing for my son. It’s not like we didn’t give it a good go either. We continued the lessons for nearly three years until he was well and truly ready to start swimming on his own–and that was when the problems really started. First, there was massive separation anxiety from my son who had never been in the water with anyone except me. Then there was the fact that there was a new teacher involved. At the time, we didn’t know about Asperger’s syndrome or the well documented “resistance to change”. It didn’t help that he was expected to wait on the step with other children while the instructor took it in turns with his peers. His ADHD meant that being still was usually not an option and his lack of social skills didn’t help him to relate to the other kids on the step either. Furthermore, the environment presented a huge variety of sensory challenges and as it turned out, his ears were particularly susceptible to infection which meant that he missed many more classes than he attended. The final problem was that he began to develop first an interest, then a fear of the pool’s filtration outlets. The teacher had no time to spend on the problem and after a few weeks of him refusing to get into the water at all, we dropped out.
Trying Again Having gone through a similar tough experience with nappies (diapers), my wife and I decided to put swimming lessons off for a year. It also helped that our son had been fitted with grommets (ear tubes) to control his ear infections and he wasn’t allowed to get them wet. When we Special-ism: Professional Blogs addressing the ISMs of your children http://special-ism.com/
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returned to the water, we allowed him the freedom to wade in pools and to ride on his “noodle” but didn’t try to teach him anything despite strong temptation. After a year, we took him to an entirely different swimming centre. It still brought back strong memories for him but I think the change helped. We also engaged a “special needs friendly” swimming instructor. It was hard to see where our money was going at first, because the instructor spent a few lessons simply talking to him from the side of the pool and then moved on to touring the pool and pointing out features. She knew what she was doing though, and after a while he was able to learn to swim without spending every moment thinking about filters–though he was still wary of them. We continued the lessons for a couple of years until we once again hit an impasse. It was always “two steps forward and one step back”. It didn’t help that our instructor moved and we had another take her place–a male this time. After some difficult lessons, particularly watching the instructor trying (and failing) to establish trust with our son, we decided that we were running the risk of upsetting our son’s swimming confidence. We felt that we’d learned enough about special needs swimming and motivation to continue the lessons ourselves and pulled him out of the classes.
The Third Attempt Once again, we had a little break and then we started supervising “fun” in the pool instead of swimming. He quickly learned that there was more fun to be had if you could use more of the pool. Eventually we put a pool in our own backyard and the rest, as they say, is history.
Lessons Learned Swimming is a critical and life-saving skill which your children need to master. Unfortunately there are many barriers to learning in special needs children. There’s no pressing need to get your child into the water early. Good progress in early lessons won’t necessarily mean that your child will learn to swim any sooner than their peers. If you go down the wrong path, stop and wait 6-12 months before resuming. No child will learn under traumatic conditions. If things haven’t gone too far, then a shorter break may be OK. Get a qualified special needs instructor and make sure that the lessons are one-on-one. Don’t be afraid to spend a good deal of time dealing with the sensory issues instead of actually swimming. It seems wasteful, but it isn’t. Nothing which helps your child to relax in the water is wasteful. Keep a close eye out for sensory difficulties and deal with them before they become an issue. If possible, use local facilities for fun (or put in a pool of your own). Today, my son still isn’t the strongest swimmer but he knows enough to keep afloat and to build on that knowledge in his school and scouting activities. The water is no longer a threat and in a country like Australia which averages above 300 water-related deaths per year, that’s really the most important thing.
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Recognizing Sensory Overload Last week, I went to pick up some Chinese food at our local Chinese restaurant. While I was there, I noticed a little girl, probably aged about six, standing next to the lobster tanks near the door. She had her eyes tightly closed, her teeth were clenched and her hands were covering her ears. I have no idea whether or not she had autism but clearly she was in a lot of sensory pain.
Unnoticed Sensory Pain Of course, being a complete stranger, there was nothing I could do. Any interference on my part would simply make matters worse. The last thing an over-stimulated child needs is an approach from a total stranger, particularly a male one. So, I looked around to see if I could see the girl’s family. Perhaps they were noticing and perhaps there was going to be a happy ending after all, but sadly, everyone else at the restaurant was engaged in animated conversation and was totally oblivious to the girl’s plight.
Increased Stimuli on the Senses I picked up my order and left the restaurant as the rest of the night played out like a “train wreck” in my head. In about half an hour, the band would come on, exacerbating an already bad sensory situation. With several senses already overloaded, the girl would be reluctant to engage more and would probably withdraw even further into herself. Note that although the main overload at the time I saw her was probably sound she had her eyes closed too. This is clearly an attempt to reduce the assault on her other senses.
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Now, being a parent, I can relate to the other side too. It’s difficult when you rarely get out and when you do, your kids make the night “hell” for you. Then there’s the cost of the uneaten food and if you’re with company, you have to put up with some nasty stares and snide comments. You dare not leave early because you know that you’ll become the next topic of conversation and that your parenting skills will surely be called into question. Back to the girl; I know how this night will pan out for her too. She won’t eat, won’t socialise and will “ruin” her parent’s evening. In doing so, she’ll provoke their anger and later a punishment, such as the temporary loss of a toy. At some time during the evening, there will be the strong possibility of a meltdown.
Behind Sensory Overload Look at her side of the story, she’s been taken to a place which causes her pain, is cajoled into ordering something that she can’t possibly eat under the circumstances, and then punished when she doesn’t eat. Even worse, the blame for the evening is likely to be put squarely upon her shoulders – it’s enough to make anyone melt down. Of course, this is all speculation, but I’ve seen it so many times before. It could all be avoided too if her parents could learn to recognise the early signs of sensory overload and if they were willing to give it the response it requires. You know that if your child was in a lot of physical pain, you’d quit the restaurant immediately to deal with it. Why is it so hard to accept that dealing with mental pain is just as important?
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Managing Expectations and Reactions During Visits and Gift Exchange There are several occasions when we are expected to give and receive gifts, with Christmas being one of the most obvious. At these times, often parents and children are judged for their “poor” child rearing skills or their child’s “unacceptable” reactions. When a child visits a relative near a Christmas or birthday celebration, that child needs to sit still and listen, show affection, avoid running around the person’s house, chasing animals, breaking antiques and being noisy. They need to resist the urge to ask “where is my present?” and indeed, even suppress any expectations of presents because in some cases, there won’t be one. When the child receives a present, they need to open and act both excited and grateful for the contents… …even if they don’t like it, even if they’ve already received four of the same already and even if it’s not entirely what they “ordered”. It’s a lot to ask and most special needs children won’t manage even the simplest of these tasks, let alone the complex “first reaction” display of emotions when opening a present. One way to improve the odds however is to establish a few ground rules and “coach” them for the event.
Coaching and Preparing 1. Many special needs children respond well to rules, so perhaps a rule about “not running in grandma’s house” or “not touching the trinkets” may help. Make sure that your child knows that you’re approachable at any time for help but be sure to remind them about interrupting. A good rule could be that your child should come and put their hand on yours. That will be their signal that they need to talk. As a parent, you’ll have to make your best excuses and respond quickly because a child isn’t going to be able to do this without attention for very long. Reward good behaviour with a response. 2. Consider the surroundings ahead of time and think about ways that you can minimise the sensory issues. For example, older houses may “smell funny” which could affect sensitive noses. Going outside for a little play might help. Don’t forget that food will trip your child up too and make sure that you give them good guidelines on how to dispose
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of unwanted food – taking it out with their hands and putting it on the side of the plate – not bending over and spitting it out in front of everyone. 3. Boredom is another thing that you need to consider. I know that it’s unsociable to take a child out only to have them play on their DS or iPhone all day. You want them to socialise with the relatives but at the end of the day, if you bring along a distraction or two, you’ll be able to enjoy yourself for longer. Don’t have them bring their DS. You bring it, secretly. Keep it hidden until it becomes clear that it’s needed. 4. Finally, practice the present opening technique. In particular you need to teach your child how to handle disappointment and how to put on a “brave face”. Make sure that your child knows that you’ll “fix everything afterwards” by exchanging unwanted or broken toys etc, but that no matter how hard they cry, nothing can be fixed on the day. My mother taught me and my sister to say “Ohhh, just what I always wanted…” which was a code-word for “Yuck, that’s awful!”. Unfortunately, over time we got so good at making the phrase sound bad that it became embarrassing for her. If a toy is clearly causing your child distress, remove it and give them something else to play with until later.
Knowing When Enough is Enough You might really want to see grandma but the fact is that your child may not be able to cope with a long visit or a long day. As a parent, you need to be in tune with your child’s senses and know when enough is enough and it’s time to leave. You can always visit again later. Don’t think of this as “giving in to your child”, think of it as anticipating his needs. After all, the aim should be to get out before a meltdown, not because of one. Think about the day in general when planning. Is your Christmas one long party crawl from one noisy relative’s house to another? Is there too much going on? Are you too far out of routine? Are there appropriate sensory break areas in the houses you plan to visit? Avoid trying to do everything on the one day. Keep your visits short and sweet and postpone conflicting visits instead of rushing around madly trying to do everything and be everywhere at once. If necessary, consider holding a Christmas or other celebration at your house so that change is reduced and so that your child is comfortable retreating to a sensory break room when he needs it.
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Emotional Interpretation of Children with Special Needs Parents of children with special needs and particularly parents of children on the autism spectrum, are often led to believe that their child has “no emotions or no empathy”. Unfortunately, this is a stereotype based on the beliefs of unobservant people, and one which has been perpetuated by the media in stories, fictitious films and articles.
Looking for Emotions The real truth is that there is empathy, but that it isn’t displayed in the same way as “neurotypical empathy”. In short, it’s there if you know how to look for it. There’s an experiment which is frequently tried by the mothers of children with severe autism. It involves pretending to be unconscious and watching to see if your child will call for help or at least become upset. The usual reaction, in which the child helps themselves to a toy or food and then sits by their side waiting for them to play is often more upsetting for the parent, who feels unloved. It can lead parents to think that the child doesn’t have emotions or that they simply don’t care for your well-being.
Where to Look for Emotions The best advice I can give is to stop judging in normal terms and to look more closely at what is going on. Your child is giving nonverbal signals of love. Sure, they’re not panicking or running for help, but equally, they’re not leaving your side. It’s an expression of love. The same principles apply to empathy. People on the autism spectrum generally have difficulty interpreting the mood or feelings of others, particularly those who are not on the spectrum. Similarly, neurotypical (normal) people, have difficulty interpreting the feelings and signals of people on the spectrum. There is a lot of research which says that between 60 and 80% of all communication is nonverbal, and I suspect that if we confined that research to only the communication of empathy and emotion, that figure would be much higher. It’s clear then that the problems of interpretation play a very important factor in the emotional bond between parents and children on the spectrum.
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Improving Your Bond with Your Child
To improve this bond, parents of children on the autism spectrum need to work hard on the verbal communication of their feelings. For example, instead of simply collapsing on the lounge chair and expecting peace and quiet, you need to say “Mummy is feeling very tired now and needs to be left alone until three o’clock”. It’s specific, but you’ve communicated both your mood and your needs.
At the same time, parents need to work on the interpretation of their children’s actions. Instead of simply judging actions (or inaction) on its own merits, ask yourself: o o o
Did they understand my needs or my feelings? Are they simply giving me what they would want if they were in the same mood (alone-time for example) Are they communicating any emotions in a different way to the way I would expect.
Bridging this gap is the key to understanding and building relationships with your child.
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Make Shopping a More “Kid-Friendly” Experience for Special Needs Children One of the big news stories in Australia recently, was about a shopping centre which has decided to “ban” badly behaved children. It’s a move which has parenting groups up in arms – and quite rightly so too. The shopping centre in question is making a common mistake. They’re assuming that there is a connection between screaming children and “bad parenting”. Their “knee-jerk” reaction to the complaints demonstrates yet another problem in today’s society; a tendency to address unwanted behaviour by banning it instead of trying to treat the cause. This is also the reason why our prisons, nursing homes and mental institutions are so full.
Wider Effects of Intolerance So let’s take a moment to examine the wider effects of this act of intolerance. All parents worry about their parenting capabilities, but special needs parents worry more than most. Banning these parents from shopping centres doesn’t just add to the inconvenience, it does untold damage to their self esteem. In particular, being asked to leave because of your “noisy child” or worse, being escorted off the premises, demeans that parent in front of the whole community. In theory, this public shaming is supposed to strengthen a parent’s resolve to produce well behaved kids, but it’s far more likely to result in the parents, consciously or otherwise taking it out on their kids. At best, the parents will simply add the shopping centre to a growing list of places where they are not welcome. It reminds me of the social injustices (atrocities) of the 1970s and proves that we still have a long way to go on the road to tolerance.
Positive Approaches No matter what you do there will always be children whose behaviour does not conform to “standards of normality”. While most children respond well to behavioural teaching, some do not.
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Most grow out of bad behaviours, but again, not all do. The best that parents can do, is to do their best. One thing that clearly has been demonstrated time and time again is that negative approaches, particularly shouting and violence do not teach good behaviour. I see this shopping centre as yet another example of the negative approach being used.
Environmental and Social Factors Assuming for a moment, that a child is generally well-behaved at home, we have to ask what it is about shopping centres which drives children to such bad behaviour? Take a good look at your shopping centre. Is it full of flashing lights, neon signs and loud noises? Do the shops you visit like to play music so loud that you can’t hear yourself think? Does the air conditioning keep it feeling like the inside of a refrigerator? Are there glittery, mirrored surfaces everywhere? Smelly perfume counters? Crowds of people? Are the “break areas” for children appropriately stimulating in terms of equipment while still being sensibly located away from the worst of the “bad sensory” areas?
Take a look at your child’s behaviour too.
Do they misbehave immediately? Do you reward misbehaviour with attention, toys or sweets – anything to keep them quiet? Does bad behaviour bring its own reward in the form of “early release”, so they can go home and play with their toys?
Watch out too for signs of over-stimulation. Does your child cover their eyes or ears while shopping?
Planning Breaks It’s not uncommon to see friends at the shops and want to spend time chatting but you need to be aware that while this is a nice little break for you, it does nothing for your child. Instead of stopping and chatting on the spot, why not agree to stop for a coffee near some child friendly facilities in half an hour? That way, everyone gets a break.
How Shopping Centres Can Help Banning does nothing to solve problems, it simply pushes the problem out of sight and allows it to fester and grow. Shopping centres could do a whole lot more to resolve these issue by keeping a careful watch on their sensory environment. After all, this affects adults too. Placing child distractions in areas where children are often bored (the middle of ladies wear for instance) will help as will reminder signs for tired parents to take their kids for a play-break once every hour – more often for younger ones. These are positive approaches to the problem which would benefit both the shoppers and the storekeepers.
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Why We Need to Advocate Against Our Children’s Labels One of the quieter moments in the much maligned Star Wars movie, The Phantom Menace, is the first conversation between Padme and Anakin. Listening to him talking about his past, she suddenly exclaims in shock, “You’re a slave?”, to which Anakin indignantly replies, “I’m a person and my name is Anakin”. That understated moment highlights two very important things about labels. Firstly, that learning about someone’s label can drastically alter one’s perception of the individual – it shouldn’t happen but clearly it does. The second point is that those of us with labels often resent the baggage that comes with it and seek acceptance as an individual, not as a “sufferer of…” or “a victim of…“. Of course, those concepts are hopefully far less relevant to the notion of slavery today, but they fit very neatly into today’s world of labelled children. We all strive to exceed the limitations of our label and as we become older and more experienced, we get to know our own capabilities and limitations better than anyone else. Negotiating the label as an adult isn’t too hard, because we can control the exposure and the expectations – who knows about it and what they think it means.
Labels and Children The labels problem becomes much more difficult when it’s up to other people to make decisions about our suitability for a task. This is usually a childhood issue. People like parents, teachers, sports coaches, extra-curricular activities leaders and employers make decisions about our capabilities all the time. Sometimes these are based on past performance, for example keeping us out of a “tackle” football game based on our issues in previous tackle football games. Sometimes it’s conjecture; assuming that we won’t like soccer either, even though there is far less physical contact in that sport. When I was in school, a sports teacher made some huge mistakes by judging my classmates on appearance. There were two boys in particular who were ignored as candidates for the football team; one because he was “fat” and the other because he was “short”. This was in the eighties Special-ism: Professional Blogs addressing the ISMs of your children http://special-ism.com/
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when teachers used to use those words in front of the entire class. He immediately put them in as “reserves”, a school word for “people we don’t give sporting chances to”. When they finally did get a chance to play, these two boys proved to be the best of our year group. The big guy wasn’t much good at running in “tip” footy, but put him in a “tackle game” and he was virtually unstoppable. The short boy surprised everyone too with his signature move of diving between his opponents legs. In my case, teachers saw that I had hearing aids and upon discovering I was deaf, they automatically assumed I was dumb (ie: mentally challenged). Despite being an A+ student and going to one of the best schools in my region, I would always start each year in “remedial” classes with the kids who were struggling. After 3-6 weeks, I’d be moved back into the advanced classes where I belonged, but then I’d have to catch up. Who knows how much three weeks per year hurt my long-term grades? You can see how judgmental teachers can be when using appearance as a guideline, but labels are much worse.
Labels for Invisible Differences Special needs kids are usually indistinguishable from their peers based on appearance, but many teachers use the label instead, forgetting that there is always an individual behind the label. One of the major problems of using labels to describe invisible conditions is that people automatically assume the worst. The words “attention deficit” automatically mean “can’t pay attention” to most teachers, while “hyperactive” translates as “swings from the ceiling”. Autism too conjures up the worst of Hollywood’s imaginings on the subject. Of course, we can’t simply get rid of those labels because we need them for funding and support, and as many adults on the spectrum will tell you, the label helps them to understand and accept themselves. The labels have to stay but they don’t have to define us. This is why it’s our job as parents and advocates to constantly promote the individual above the label and to teach our kids to rise up against the limitations that others put on them.
Some Ways to Promote the Individual We all read things on the Internet that we don’t agree with, but sadly most of us simply pass by those sites without commenting. If you find a site on which someone says something that is clearly wrong, for example, that people with autism do not have emotions, then comment (nicely) and let them know that this is not the case. There’s no need to pick fights, but there is a need to ensure that your voice is heard. The same goes for teachers in IEP meetings. Never ever allow the word “autistics” to be used as a general phrase. Make sure that they’re talking about your child by name. Remind them, if need be, that your child is an individual and that “when you’ve met one child on the spectrum, you’ve met ONE child on the spectrum“. Finally, when the time comes to discuss the label with your child, make sure that you’re clear that the label is just an easy way of describing things. Point out children with blonde hair, for example, and say that the label is like saying they’re blonde. It doesn’t say everything about them… in fact, it doesn’t even say everything about their hair, doesn’t account for different styles or shades – or the fact that hair can be dyed. Special-ism: Professional Blogs addressing the ISMs of your children http://special-ism.com/
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Summary One day your child will become their own advocate and when that day comes, they need to remember to spread the word that they are so much more than just a label. It eases description, but it doesn’t define them.
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How Can Scouting Help Children with Special Needs? If you’re like I was and have never been involved with scouting, you probably have the impression that scouting is all about camping and testosterone and that there is absolutely no place for children with special needs. I’m here to tell you that this view is completely wrong, that scouting lays much of the crucial groundwork for life skills and that in many respects, it’s probably far more important than school for kids with invisible special needs such as autism, Asperger’s Syndrome, ADHD and general social difficulties. I didn’t arrive at this conclusion on my own and to be honest, never having been involved as a child, I initially had more than a little bias against the scouts. It’s watching my own kids progress and watching their self-esteem and life skills improve that has changed my mind. In fact, I’ve been so impressed by scouting that I became a parent helper, then a leader and finally, the section leader (of cubs) in our local group. Since then, I’ve had the opportunity to help lots of children both with and without special needs through the system. I’m pleased to be doing my bit to help kids pick up the life skills that parenting alone cannot teach and I’m always surprised by how far they progress in such a short time.
Choosing a Group Choosing a scout group is almost as important as choosing a school – except that it’s usually much easier to transfer if you need to. Nevertheless, as with schools, the following rules apply: 1. The Attitude of the highest authority dictates everything. Just as a less effective or disinterested principal can make a school less suitable for kids with special needs, so too can a less effective group leader. The group leader is often your first contact with a scout group. They may be cautious about a new special need but they need to also be accepting. 2. Your Child’s direct teachers are directly responsible for your child’s inclusion and happiness.
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Scouts is a bit like a giant playground with guidance and supervision. Your child will often have two or three leaders who all work in one section. Not all of these leaders will understand your child’s special needs and not all will be able to relate to them, but usually at least one will. Your child should form enough of a bond with a leader to feel that he can talk to him. This is especially important in case bullying or exclusion occurs. If there’s no leader with whom your child can identify, then you’re in the wrong group. Don’t give up on scouts though – either “become” that leader yourself or find a group that works better for you. 3. Disclosure is critical Withholding information about your child’s “invisible” special needs isn’t doing anyone any favours and indeed may even seriously impact your child’s performance within the group. Unlike schools, scouts doesn’t have “individualised education plans” (IEP‘s) and yet their programme which focuses on “doing your best” is far better tailored for individual needs and abilities than anything that even the best schools can offer. Of course, the leaders can’t accommodate needs that they don’t know about, so if you don’t disclose, you are doing your child harm. If all else fails and you just can’t seem to find a suitable group, remember that scouts have a special needs unit which can put you in touch with a suitable group. You should also feel free to talk to the special needs leaders about issues within your own group as often they can help teach local leaders the skills they need for particular children and circumstances.
How Exactly does Scouts Develop Critical Skills? One of the most critical components of the scouting movement is the credo “do your best”. It’s all about doing your personal best. It recognises that some people have more developed skills than others while simply encouraging everyone to try as hard as they can. Scouts isn’t about trying and failing, it’s about supporting your peers as they do their very best. As kids progress through scouts, they are given greater and greater amounts of independence from the adult leaders while still retaining a leadership structure within the ranks. For this reason, it’s quite important that your child starts scouts as young as possible. In the earliest years, the adult leaders are fully in control and they take the scouts through a programme which consists of cooking, general knowledge, safety skills and games. By about age eight or nine, the cubs level of scouting is taking the kids through in-depth life skills such as first aid, housework, looking after pets, camping and bush craft as well as fun skills like photography, computing, collecting, art, acting and science. There’s also some emphasis on physical education and sports such as swimming and athletics but because cubs are simply encouraged to do their best and beat their own scores, it never becomes overly competitive. Cub scouts are encouraged to take more of a leadership role. Leaders are chosen from their ranks on the basis of aptitude and experience. They are also sent off to specific “leader training courses” in which adult leaders put them in unexpected situations and prompt them to figure out the best way to resolve them. Often, assigning leadership roles to special needs cubs who would never be given a chance on the school playground makes a huge difference to their social skills and self-esteem. Youth leaders suggest games, resolve minor problems within their group and help the struggling members of their group to complete specific challenges. In the years after cub scouting (after age 11), the youth leaders take a far more active role and increasingly they design and run the programme according to a general curriculum. Youth members can stay in the scouting movement up to the age of 24 by which time repeated exposure to general life skills will have overcome many of the weaknesses of their special needs and prepared them to face the world as capable and skilled individuals.
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There’s no doubt about it, scouting makes a huge difference.
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Kids with Isms Can Benefit by Using Lists My world is full of lists. I have them on my walls and whiteboards at work, on papers at home and scattered through synchronized computer systems, including my mobile phone, computer, iPad, print outs. My lists are everywhere. Lists serve many functions. They help us to plan and prioritize our tasks and our day. They help us to allocate time, resources, responsibility and dependencies to tasks and they help us to build a sense of achievement. At a baser level, many people on the autism spectrum derive enormous pleasure from lists and categorization.
The Pleasure of Lists This probably seems strange to the neurotypical mind but lists have been a part of my life for as long as I can remember. In fact, lists were a huge part of my daily life long before words and writing. I’m sure that most parents of children with autism have witnessed their child lining up their toys time and time again, often in the same pattern but sometimes differently too. Probably it hasn’t occurred to you that this behavior is simply list-making and categorization without words, but it is. I remember doing this as a child and lining my cars up in order of favorites or colors. I also remember categorizing cars, buses and trucks into different rows. That’s right. Children on the autism spectrum are born list-makers and it feels good. List-making is a form of stimming and for us, it scratches an itch. Even now, I keep constant non-work, lists simply for pleasure. For example, I have all of my DVD collection cataloged in extreme detail in a replicated database which I get great pleasure from updating. My database includes information on the various aspect ratios of the films and their language and subtitle streams even though I only speak English. In fact, given that I have nearly 500 films in this list that I have yet to watch, it’s a fair point that the list itself is probably more important to me than actual items themselves.
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The Value of Using Lists I’ve always used lists in my life for my own collections and I can still recall using an old typewriter in my single-digit years to build a catalog of all of my books. Strangely enough, I never thought about using lists in school or university. I didn’t realize how helpful they would be. In my working life, I’ve struggled for years to find ways to organize myself and after twenty years of failed calendars and “organizers” it has come down, once again, to simple lists. Funnily enough, I noticed recently that my wife has been using lists–not for herself but for the things she needs me to do. It turns out that after all these years of marriage, she has also found that lists are the most effective tool to engage me on. I only wish that I’d started using lists to manage my tasks much sooner, for example, in my school days. This brings me neatly to the point of the article. If you notice that your kids with isms are using list-like behavior then please teach them the value of using lists for school work, for chores and for everyday life in general. Make lists of the things they need to do to get ready for school and teach them how to check off those items as they complete them. Even if your kids are not currently displaying list-like behaviors but they are having difficulty with organization, lists may be the answer. This will not only keep your kids on track but it will also help to foster a sense of achievement as they complete everything on their list.
Tools for Lists In this day and age, technology has made the paper list largely redundant though they are still very effective “on the spot” list makers. I’ve found that whiteboards work very well for me at work but that I need to have different colored pens in order to properly categorize things in my list. I also need to be able to take my whiteboard down regularly and lay it on a chair or table to write or rewrite my list (so a whiteboard fixed to a wall is not necessarily a great idea). On the computer front, there are a few tools that I have found to be invaluable for list making. The first is a text editor (like Notepad). Personally, I use Notepad ++ because among other amazing features, it allows me to keep many separate lists on different tabs open at once. Plus of course, it’s free. On my iPhone, I use PlainText, another free app which allows me to keep multiple lists without worrying about formatting. It synchronizes via dropbox which means that my lists automatically update across my various computing devices. Finally, there’s the king of the list products: Wunderlist. This is an amazing web-based product which runs on the iPhone and android as well as in browsers. It’s free too. The beauty of Wunderlist is that it allows you to easily tick off things that you have completed. It also has alarms too. Of course, I don’t think that it really matters what product you use provided that you can easily and quickly make a list without being forced into putting dates and categories. Whatever works is fine, after all, the list is far more important than the tool.
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Displaying Confidence in Your Special Needs Child There’s a problem in special needs education which I refer to as “the remedial effect”. It is a form of mostly unintentional discrimination which occurs when schools underestimate special needs students and automatically put them into remedial classes. As a child, it happened to me quite regularly even though I’d protest; “I’m deaf, I’m not dumb.” Here’s the clincher though. It’s not just a problem for school. It’s a big problem at home too.
All Eyes on Your Child One of the great things about having a school system (versus homeschooling) is that there are many more pairs of eyes watching your child. On the one hand this can be a problem because any of those teachers can start up a new “remedial effect” but on the other hand, there is a good chance that your child will find appropriate champions from amongst a larger group who will help them to achieve their potential. Home schooling is far more likely to have an “instant champion” in the form of a parent but even then, without all those other sets of eyes, it may become too easy to reduce the hurdles of education rather than encouraging our kids to try harder.
Allowing Your Child to Gain Independence Of course, each style of education has pros and cons which we could debate endlessly but this article isn’t about school. It’s about having the confidence in your children to allow them to be independent. As I write this, my eleven year old has just come home from a four day scout camp. Sure, he didn’t bring everything home but he seems to have gotten most of it. More importantly however, he clearly had a good time. Doing these things by himself has given him a giant confidence boost.
Learning to Let Go One of the problems we have as parents of special needs children, is that we have difficulty letting go. We’ve seen our child hurt by bullies and by their own failings before and we strive to protect them from further disappointment. In doing this, we underestimate our children’s ability to cope and we deny them the chance to develop life skills. Special-ism: Professional Blogs addressing the ISMs of your children http://special-ism.com/
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Suggestions to Build Confidence We display this lack of confidence in our children whenever we decide that they wouldn’t be capable of catching the bus to school, they can’t make their own breakfast because they spill it and they can’t take themselves down to the park because they’d have to cross a quiet street. Even worse, we cement our dissatisfaction when we remake their already made but messy beds, tell them that they can’t pour their own drinks because they spill them, or spy on them when they’re doing things by themselves because we’re not willing to trust them. Here are two suggestions to help build your child’s confidence:
Our children’s self esteem and confidence is closely linked to the confidence and trust that we show them.
Let’s not be remedial parents. It is far better to overestimate and provide support than to underestimate and encourage self-doubting behaviour.
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Navigating the Nightmare of Special Needs School Lunches One of the things that I hate the most about the end of school term is digging out the old mouldy sandwiches from my son’s school bag. Recently however, things have gotten much worse. He started complaining to me that his bag was very heavy and after giving it a moment of thought I decided to investigate. Now, I’ll be the first to admit that with everything going on in a very tough year for my family, we’ve been a little remiss in checking his bag. Asking him to bring various items, such as homework diaries to us rather than searching for them ourselves, but what I found in his bag was shocking, to say the least.
Uneaten Lunches There were more than fifteen complete school lunches in his bag. Yep, that’s 15 tetra pack fruit juice drinks, one or two of which were now leaky, 15 sets of stinky mouldy sandwiches, 15 muesli bars, fruit chews or other recess items. There wasn’t 15 pieces of fruit though, just one smelly, mushy pile at the bottom of his bag. It had me gagging. No wonder his bag was heavy. The things I expected to see–like school work and lunch boxes–were nowhere to be found. Instead, my son was spending his day carrying around a sack full of garbage, and his iPad. He’s twelve, so I thought I should have been able to expect a little more independence from him but clearly this was not the case even though his younger, by three years, brother seemed to be coping mostly fine. Such is the world of special needs, where things like distractability and texture issues can quickly hijack a lunchtime agenda. I spent some time talking to my boys about the issue but really, I’m not one to talk. I barely ate any of my mother’s carefully prepared lunches in primary (elementary) school and I swore off lunches altogether from years seven to twelve. As I related my memories of sitting on the school balcony in a position with the bin one floor directly below me–so I could drop my unwanted lunch into it–I suddenly realised that no matter what I did, I would never be able to get my kids to eat their lunches if they didn’t want to.
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Changing the Contents of School Lunches I decided to instigate some drastic and not necessarily healthy changes. First of all, sandwiches were out. There are way too many competing textures in sandwiches and far too many things that can go wrong.
I decided that my boys would only get food that wouldn’t go off and that could handle being squashed.
We’d get over the fibre issues by having bread and fruit readily available for the kids when they got home from school. There was certainly no way I was ever going to let them take a pear to school again.
So, at the beginning of the week, I packed ten plastic bags (two kids for five schooldays) with: 1 Fruit juice carton 1 package of kiddie biscuits 2 different bars** 1 stringy fruit “lolly” (supposedly healthy but I doubt it) ** Initially I tried muesli bars, then sugary cereal bars and, when everything else kept coming home, I switched to cake-ish bars with mild success and then finally to “space food sticks” with complete success.
Changing Your Lunch Routine My routine changed too. Every morning, I’d go through the kids bags and remove the previous days lunch. There was no need for lunch boxes because everything was “crush tolerant” and in any case, my eldest had already lost three so far this year. Any uneaten food would safely keep for a long time and could be reused if I ran out of prepackaged bags. Pre-packing at the beginning of the week also proved to be a massive time saver. Sure, it’s not 100% healthy but it is getting eaten, the kids are happy and our daily wastage has dropped significantly.
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Reducing Computer Overuse Problems in Kids with Special Needs It’s a fact, the computing use of our children is going to far exceed our own. Computers are being given to children at younger ages than ever and unless you’re living in the Amish community, you’re going to find yourself using computing devices almost constantly in the form of phones, automated teller machines, games, pad devices and even everyday devices such as cooking utensils, refrigerators and washing machines.
The Downside of Computer Usage Does it matter, you ask? Yes, of course it matters. Computing brings with it a whole host of health problems including those related to eyesight, posture and fine motor skills. Where the kids of the past balanced those issues with a healthy doses of outdoor life, today’s kids are far more likely to spend their whole time inside hopping from PC to XBox to iPad and their smartphones. There are mental risks too with experts warning that the abundant availability of technology is removing our brain’s natural downtime. Consider this; in the past you would have coped with a long wait in a queue by thinking about the unsolved problems of the day, processing your feelings or, if you were really tired, simply zoning out. Today’s queue time is far more likely to be taken up by email, Facebook or Candy Crush, leaving your brain with absolutely no time to rest.
How Computers May Affect Kids with Special Needs You might think that these issues will impact all kids equally but that’s not necessarily the case. Children with special needs seem to spend far more time on computers due to their obsessions and their social isolation and they are often far more easily damaged due to low muscle tone, a common problem for special needs kids. The problems of mental fatigue are also more likely to become an issue as many children with special needs turn to computing as a means of winding down from social anxiety but instead find themselves drawn into detailed worlds, such as Minecraft which while calming, generally engage the brain on levels which interferes with rest.
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Restricting the Number of “Computer Hours” So, what can you do to combat this problem? At first it might seem that restricting computer time could help. Certainly adjusting the computer/life balance makes a little difference and in the case of my kids, this has occurred by including scouting in our lives. Unfortunately there is very little that you can do to restrict the number of “computer hours” because your kids are already so far over the limit that taking just a few away is unlikely to make any difference. I spent less than twenty years on computers in much lighter use scenarios than the average person today, before succumbing to an “overuse condition” which has caused discomfort ever since. Even then, my usage started when I was 17, well beyond my childhood years.
Tips for Combating the Effects of Overuse Given that there is little that we can do to reduce computer time down to reasonable levels, we need to concentrate instead on combating the effects of overuse.
To do this, we need to educate our children about the problem. This means teaching our kids to take regular breaks of 5 to 10 minutes every hour and to do stretching and relief exercises during those breaks.
We also need to provide our children with alternative input devices. The best of these is arguably ” Dragon Simply Speaking” a voice dictation application.
Unfortunately as parents of special needs children, this is not the easiest task . Another of the gifts that special needs children, particularly those with autism, often have is ” hyperfocus”, the ability to concentrate on specific tasks or subjects in incredible detail to the exclusion of everything else. It’s a gift because it often allows breakthroughs to be made but it’s a problem too because it can cause people to spend many hours at the computer oblivious to hunger or the pain of improper posture. It can cause a lot of damage. For this reason, it’s not enough to simply educate our children about posture, ergonomics and break management. We have to enforce those breaks too. Fortunately there are many applications which are available for computers today which will pop up reminders when certain character or time limits are reached. Many are free (Wallen, Jack) but the more expensive versions of these applications even suggest appropriate exercises.
Summary In the end though, it’s entirely up to your child. If they keep “managing” their overuse condition, then perhaps they can lessen the impact or even avoid it altogether . If they choose to ignore the warnings it can become a problem that will follow them throughout their working life and perhaps even end their career. It’s best to choose to work smarter, not harder.
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Taking Things Literally – An Issue that Matters One of the big problems of parenting self-help books, particularly those which focus on raising children with special needs, is over simplification. Sure, I get that these books are trying to reach a mass audience who struggle with some of these “new” concepts but even so, there’s a big difference between using trite information for examples and using real world information which shows that a given feature has an impact. One of my pet peeves is the way in which these books describe “taking things literally”, a trait common to Asperger’s, Autism among other isms. The example used in the books is almost invariably; “It’s raining cats and dogs outside” To which our child with autism will react by running outside to see if they can spot any feline or canine companions in descent. This is a cute example. It doesn’t hurt anyone and at worst, everyone is going to have a laugh at the child’s expense. In reality, this doesn’t happen often because either the phrase is first heard in the comfort of home, free from the eyes of bullies – or it is recognized as a scientific impossibility and is readily detected by the child on the spectrum as being a “trite phrase”. More importantly though, this over-used example convinces parents that taking things literally is simply “cute” behavior which is peculiar to the child but warrants no special attention – and that’s where the problems start.
Here’s a somewhat different example, which really happened. A few months ago my family took a trip to Hawaii. For various reasons, we left a few weeks before the school holidays (summer vacation) and returned just as they were about to start. The kids had one or two days of school to attend and then the holidays began. After the summer holiday, when all of the kids returned to school, the usual writing tasks were set. My eldest son, who is often quite lazy with writing tasks apparently got into quite a bit of trouble. Of course, given the problems we face with communication (he doesn’t give us
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his homework diary to sign – and it’s usually so nasty fishing anything out of his school bag that we try not to go there). We had no knowledge of the problem relating to his writing tasks. It wasn’t until very recently when my wife attended a school meeting that the teachers brought the problem to her attention. They asked, “did K go to the beach or do swimming in Hawaii?” My wife answered “yes, of course we did, we went to the beach and to the Pearl Harbor memorial and to many other places as well”. The teachers replied to my wife that our son said he did nothing. They had asked him to write what he did during the school holidays and he wrote nothing. They agreed with my wife, he hates writing and will do anything to get out of it. My wife responded “We’ll see about that. Wait until I get home!“. On arriving home, my wife questioned my son about the issue. As my wife asked our son why he didn’t write about Hawaii, a puzzled look came over his face. Finally he asked tentatively, “did we go to Hawaii during the school holidays?” She was about to respond with a loud “yes!” when she suddenly realized… We actually didn’t. We went before the holidays. Furthermore, she had said to the boys, “don’t expect to be doing anything during the school holidays because we’ve just done an expensive trip to Hawaii”. Clearly, during the school holidays, we had indeed, done “nothing”. It dawned on her that our son had been in trouble on all sides for taking things literally. He wasn’t trying to get out of work, he was simply being honest and was being punished for it. A few hasty explanations later and we had happy teachers and a happy boy. This more detailed example is one that parenting self-help books should be using to best exemplify the concept of taking things literally. Taking things literally isn’t just something to be laughed at. It has real-world impact and in the wrong situations, such as those involving the police, there could be violent or legal repercussions.
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From Fish to Dogs – Selecting a Therapeutic Pet I know a lot of parents of children with various isms who refuse to get a pet because they’re worried that their child will harm it or that it will take too much effort to care for a pet. Unenlightened, they seem to feel that pets could be a bad thing. Pets are one of the best forms of therapy and support that a child with isms can have – let me enlighten you. As a general rule, the more interactive the pet, the better. There’s a bit of a scale per se – fish are the least interactive while dogs are the most interactive with other pet options in between.
Fish – Visually Calming If your child really can’t handle pets at all, then fish are a good choice. You’ll find that if you go somewhere with a large fish tank such as a doctor’s waiting room or a restaurant, your child may be “glued” to the glass watching the fish move about. Gazing upon swimming fish has a very calming effect. In my opinion, caring for fish is not maintenance free. The downside is that the tanks need regular cleaning and the aquarium plus accessories have a lot of up-front costs. If you do go the fish route, consider a larger self-supporting tank with a lid to reduce the risk of your child pushing it over or putting undesirable objects in the tank. If your child has frequent meltdowns which involve throwing heavy objects inside the house, then fish aren’t a good idea. Keep in mind, fish tend to die easily which can cause a bit of trauma for children. If you’re really unsure about fish, a fish screen saver will do just as well with smaller children.
Dogs – Man’s Best Friend I can’t stress enough how valuable and suitable dogs are as pets. Children with various isms often find that friendships are difficult to maintain because of their social challenges. Saying the wrong thing at the wrong time can destroy a relationship. Dogs, however, do not care if you tell them that they smell funny. They don’t care if your sense of fashion is poor, if you have bad habits or constantly rock. Dogs are extremely loyal and can become your child’s best friend, a friendship that will last for years, bringing a great deal of peace and stability to your child’s life.
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If your child is energetic and will be able to play quite a bit with your dog and take it for walks, then I’d suggest a bigger dog, like a Labrador or a Collie. These dogs are full of energy and are very playful. Larger breeds offer certain benefits which a smaller dog simply can’t. I can remember as a child having a bad day, I’d sit on the steps and cry, or simply hang my head. My dog used to come and sit next to me and because of his size, I could put my arm around him and hug him. It calmed me down quite a bit. My dog was my constant companion from the age of four to twenty-two.
Service & Therapy Dogs You may not know this but service dogs exist for people with autism. They’re not just for the blind. Autism service dogs can keep a “runner” from bolting. If your child has a tendency to run off in public places, having his dog on a leash will decrease the likelihood of running off. If your child is overwhelmed and having a meltdown, some autism service dogs are trained to sit or lie on your child. This gives your child a little pressure, like a weighted blanket and can help them to regain control. Autism service dogs can be trained to do all sorts of other things too, like preventing your child from eating the wrong things, redirecting harmful or undesirable selfstimming behaviour and assisting with balance and disorientation issues. If you’re looking for a service dog, a good place to start is Paws with a Cause. If you need a smaller dog, they’ll be able to recommend one which is suitable.
Other Pets There are plenty of other pets which can be kept in smaller houses including birds, rabbits, mice, rats, gerbils and guinea pigs. While these animals are by no means service animals and you can’t wrap your arms around them, they can still provide plenty of redirection and calming input.
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Guinea pigs are especially good as they don’t move about much, can be very cuddly and are relatively low maintenance. “In ancient times cats were worshipped as gods; they have not forgotten this.” – Terry Pratchett I’ve purposely left cats out. It’s not that cat’s can’t make good pets, rather cats by nature are more of a loner type animal and aren’t always suitable for cuddling. Cats also seem to trip more allergy problems than most other types of pets because of their grooming techniques. Finally, cats are too well equipped when it comes to defensive measures and can do quite a bit of damage with their teeth and claws. Similarly, I’ve left out reptilian and amphibious pets (snakes, lizards, turtles and frogs) as they often require a license and aren’t really a “playful” type of pet. With just a little extra effort, a pet offers incredible benefits to children with isms. Whether you are seeking a loyal best friend who does not care about social mishaps or something soft and cuddly to offer tactile sensory input, pets offer tremendous therapeutic value.
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Detect and Deal with Anxiety Anxiety is broadly defined as; “a feeling of worry, nervousness, or unease about something with an uncertain outcome”. It’s a good definition of the feeling but it really doesn’t begin to explain the reasons why anxiety has such a big impact on the lives of children and adults who suffer the effects, nor does it explain how prevalent the isms of anxiety as a co-morbidity with other disorders. Despite the fact that anxiety is not part of the diagnostic criteria for autism spectrum disorders (including Asperger’s syndrome), I believe that it’s present and has a significant impact in nearly all cases. I’d venture to say that in all my interactions with adults and children on the spectrum, I have never yet met anyone who did not show signs of anxiety. Too often though anxiety is not recognized for what it is and is left untreated.
The Impact of Anxiety When left untreated, anxiety causes significant real-world problems in many areas of life. It can impact a person’s ability to function on a day to day level and can significantly boost the negative effects of other co-conditions, such as depression, obsessive compulsive disorder (OCD), social anxiety disorder (SAD), post-traumatic stress disorder (PTSD), generalized anxiety disorder (GAD) and panic disorder. Increased anxiety can worsen negative outbursts, meltdowns and reactions to authority figures, which can result in suspensions, expulsions, arrests and general violence. See Invisible Anxiety: Hiding in the Classroom
Detecting Anxiety I could probably go on all day about the different ways in which anxiety manifests itself in adults and children. Instead, I have chosen just a few examples, not all of which are obvious. Anxiety is everywhere and as a parent, you need to be aware of your child’s normal reactions and be on the lookout for unusually strong ones which could suggest anxiety. In babies and small children, anxiety often manifests as clingyness, called “separation anxiety”. This is typically seen when mothers meet for “mother’s group” meetings and expect their children to play together. Instead, the anxious child will not leave its mother’s side, often clinging to her leg as she talks with other adults. The infant may bury their face in their mother’s chest to Special-ism: Professional Blogs addressing the ISMs of your children http://special-ism.com/
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avoid looking at others. Infants with anxiety issues will often cry to the point where they have difficulty breathing, particularly if a parent leaves the room. It’s important to understand that infants have no concept of “object permanence” at these young ages and that a child with an “ism” may take longer to develop this understanding. What is object permanence? It’s the idea that an object stays where it is left, even when you leave the room. For example, a very young child with no concept of object permanence will not consider that a favorite toy is still in another room where they left it. If it’s not visible, then it’s gone. Once you understand this, it’s fairly easy to understand why some children cry as if you’ve left the country whenever you leave the room. Infants and children all the way up to adulthood with anxiety may suffer from sleep isms too.
Open and Closed Spaces In older children and adults, anxiety is often seen as problems handling enclosed spaces. Many children cannot sleep without their bedroom door being open. Most of the time this is simply a child wanting to keep their parents close but sometimes it’s a sign of anxiety. Some people have the opposite type of anxiety and will panic when taken to open spaces, such a large and busy shopping centres.
Social and Confrontational Most children show a little anxiety when talking to adults they don’t know but only a few display signs of anxiety with every interaction – even interactions with adults and children whom they know very well. Sometimes even adults can handle normal interactions with most people but will show significant anxiety with someone whose body language seems confrontational.
OCD Obsessive Compulsive Disorder can be both the result of anxiety and a contributor to anxiety. For example, a friend of mine with OCD developed an issue with a high water mark in their toilet bowl. It wasn’t an overflow, just a high water mark and it only happened once. This resulted in a “fear” of flushing which meant that once the toilet has been flushed, he had to wait until all noises (including refilling) has stopped. Then he waits a little longer just to be sure. If he is already late for an appointment, particularly if someone is urging him to leave, the anxiety can become overwhelming. Every little household incident adds to the OCD cycle which in turn adds to anxiety – it’s a self-perpetuating problem.
Object (including Food) Related Adults and children can also develop anxiety over objects and food. In my own deep past, there is a long forgotten reason why I dislike sultanas. I started off being unable to eat cakes or biscuits containing them. Presently, I can’t stand the smell of them, I can’t eat foods that have been stored in the same container with them or that have sat in close proximity to them. In fact, I can’t look at them – not even at a picture of them. It makes my skin crawl. I have difficulty with red wines because the taste is too close. Even when foods, such as scones or Christmas cakes are cooked without them, I can sometimes have trouble eating them simply because they’re foods which are “designed” to carry them. Luckily, I’m an adult and I have enough control over my life to ensure that I can walk through it more or less sultana free. Children on the other hand are often “force fed” such foods by their parents who simply think that they have an issue with the taste or that they are refusing to “just try” a particular food. Parents are often oblivious to the stress and anxiety that this puts on their children.
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Dealing with Anxiety Confrontational Exposure Therapy – Some anxiety can be dealt with using simple therapy. Some therapies, such as Confrontational Exposure Therapies might be fine for adults but in my personal opinion, they are not always suitable for children. One of my friends helped me to cure a more or less lifelong fear of spiders which lead to unreasonable reactions whenever there was a spider in the vicinity. He did this by placing plastic spiders everywhere whenever he visited my house. After a couple of years of completely baseless and heart-stopping frights, I had an encounter with a real spider which I had thought was one of his plastic ones. To my surprise, I was able to release it outside. From that day onward, I’ve had normal reactions around spiders. It was a technique that worked well against my phobia and consequent anxiety but I think that if the same technique was used with a child, it would worsen the problem considerably. Cognitive Behavioral Therapy – Another major type of anxiety-reducing therapy is Cognitive Behavioral Therapy. This therapy uses the mind to overcome anxiety. As part of this therapy, you’re encouraged to think about your negative expectations, challenge them and then replace them with more realistic ones. The therapy uses deep thought and knowledge of oneself to adjust your behavior. It’s a fairly in-depth form of therapy which is not useful for sudden encounters with anxiety. In my opinion, it is not the kind of therapy that can be used with a small child, particularly one with special needs who has less developed thought processes. However, there are child psychologists trained to use cognitive behavioral therapy with children. Medication – There are a number of medications which can be used to deal with anxiety. Many of these have significant side-effects, so you need to read up on them before using them. If you’re using these medications with young children, make sure that your recommending physician has experience with prescribing that particular medication to children of similar ages. Don’t simply accept the prescription but ask lots of questions. In particular, ask what changes you should expect, how soon you should expect them and how quickly the medication will enter your child’s system. You should also find out whether or not you need to “taper off” the medication if you decide to discontinue. You’ll need to inform your child’s school that he or she is on the medication but you might also suggest that they limit their disclosure to other teachers so that their feedback can be assessed without any preconceived notions. In small children, medication may be the best way to control anxiety until they develop the cognitive skills to use more advanced therapies. Regardless of the method you choose, dealing with anxiety is a critical step in helping children with various isms to deal with the world around them.
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Discipline Tips for Age 10 and Up Regardless of whether you are a believer in spanking and shouting or if you use tried and proven alternatives like time-out or food/toy bribery, there comes a time, usually not long after your child’s tenth birthday when most of the methods that worked with your toddler have lost their effectiveness. Depending upon your methods and your child’s individual differences, this could happen sooner or later but the rule for violent discipline (spanking) is pretty clear. As soon as your child approaches (not reaches) a point where they could hurt other people by mimicking your behaviour, you need to stop teaching them that this is ok. So, now that you’ve got an unruly ten year old with isms on your hands and you’ve been effectively disarmed, you need to find some new deterrents.
Keep Discipline in Mind Being a parent is often a thankless job and sometimes we feel like taking a little revenge for the things our kids put us through. As a parent, it’s important to realise that you’re not alone in these feelings but these are urges we have to curb. You have to constantly remind yourself that discipline comes from the word disciple, meaning “teacher”. We’re not here to punish or take revenge on our kids, we’re here to teach them the skills, respect and behaviour that they’ll need throughout their lives.
Ensure Discipline is about Teaching Whenever time permits, talk to your child about what they have done wrong and try to determine, without asking directly, whether they realise that it was wrong. Sometimes things which are obviously wrong to us, are less obvious to our children. This is especially true of children with Asperger’s syndrome. For example, a child may be making noises by clicking a pen after a teacher has asked for the class to be quiet. If the child has Asperger’s syndrome, they may interpret being quiet as not making noises with their mouth, such as talking or humming. The activity with their pen could be Special-ism: Professional Blogs addressing the ISMs of your children http://special-ism.com/
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an unconscious stimming behaviour. A teacher who punishes this behaviour may make a student feel that they are being picked on – and it could cause the student to react to that discipline. Frequently, when children with Asperger’s have meltdowns with authority figures, it’s because they feel that they’re being treated unfairly. This “unfair” treatment is often the result of an authority figure enforcing an “invisible rule” and then upping the ante on punishment. It’s important therefore to ensure that the child fully understands a rule before punishing them. This is also one of the reasons why many parents of children with Asperger’s syndrome preregister their child with the police, to ensure that any approach by authority figures takes into account the high probability of misunderstanding.
Use Deterrents Of course, not all discipline can be talked out and some things need to be taught using deterrents. Whenever possible, it’s much better to use natural deterrents than to create ones which make you out to be the “bad person” who decides the punishments. A natural deterrent for an older child would be that they need to replace or fix what they have broken. For example, if a child breaks another child’s toy, they might have to give one of their toys (of similar emotional value) to the other child. If they break a window, they might need to save up to get it replaced. If costs are steep, they don’t have to save the entire cost of replacement but it should count towards a percentage at least – and they should be told exactly what they have paid for. Understanding that they have only had to pay 10% of the cost and that if it happens again, the percentage will be much higher, will help your child to understand consequences.
Take Things Away One of the most effective deterrents is the removal of privileges. In particular, removing access to electronic devices such as games, iPads, mobile phones, television and the internet works extremely well with kids on the autism spectrum. The trick however is to take care not to take everything away at once because a child with nothing to lose will quickly become a child with no boundaries. Taking things away should be immediate and with a clearly set boundary. A good example of this would be, “No iPad for a week” followed by a quick retrieval of the iPad and placement out of sight of the child. Don’t ban things and then leave them lying in plain sight as temptation. Shorter bans are far more effective than longer bans. For example, removing an iPad until a child cleans his room is far more effective than taking it away for a month.
Kids with Isms – What does not Work As mentioned earlier, any kind of discipline which relies upon fear or hurt, including shouting and abuse is not an effective method of discipline. These methods may actually work to produce results but they also damage the child. They teach the child that violence can solve problems and they can often lead to self-esteem and social issues. It’s no accident that many children who bully their peers are victims of parental abuse at home. The other type of response which fails is grounding. Typical teens have huge issues being grounded but children with Asperger’s syndrome will often see grounding as a reward. After all, it takes away the difficulties of social interaction.
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Escalating Discipline Results in Failure For example, your child refuses to set the table, so you deny them desert/pudding. They respond by trashing their brother’s bedroom and you respond by sending them to bed immediately. They respond by taking their iPad to bed and playing under the covers and you respond again by removing that iPad for a week. It becomes a game of disciplinary tag and the problem is that in this situation, your child clearly thinks that he is your equal in terms of authority. Don’t play this game. In this situation, you need to follow through with your discipline by being present at all times. Deny him dessert if you will but don’t allow him leave the dining room until everyone has finished dinner. If he starts trashing his brother’s room, go up there and talk to him, explain how what he is doing is wrong and then talk him through fixing his brother’s room. If he’s not ready to fix it yet, then don’t drop additional punishments on him, give him time to think it all over and try again tomorrow. Perhaps tomorrow, you can choose a time to withhold the iPad while he cleans up his mess. In the end, discipline is up to you and your child. Things which work in one household or with one child won’t necessarily work in other situations. If you find yourself at loggerheads with your child, try backing off instead of pushing harder. Sometimes you just need to give things a little space.
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“Probability Goals” Keep your Perfectionist Child from Giving Up You may not think of your child as a “perfectionist”, after all, he may have a terribly untidy room or he may take little care in his writing when doing homework but perfectionist children aren’t necessarily “perfect in every way”. Sometimes perfection-ism only affects a small part of their lives. In any case, there are subtle signs to look out for. Perhaps your child gives up easily, or with a tantrum, when his math homework gets too hard. Perhaps he tried to destroy his maths book. Maybe he scribbles out or glues the pages of his work together and starts over when he makes a mistake. Maybe missing the ball once in a ball game or getting out in a game of musical chairs or dodgeball is enough to make him throw up his hands and walk out of there. These things don’t mean that your child is a perfectionist but they can suggest that he has some areas of pefectionist attitude. Perfectionism is a double-edged sword. On the one hand, it’s a great quality to have because it can lead people to do their very best and to have very high standards. On the other hand though, when perfection is not easy to achieve, it can become soul-destroying.
Probability Goals I often used to wonder why so many of the tests at school would offer different options. They would offer questions like, “Choose two out of these five topics and write an essay about them”. I chalked this down to teachers getting bored with reading the same essays over and over again. After all, surely it wouldn’t matter to the students who would either know the work – or not know it. It turns out that this is a form of probability goal. It’s a method of giving a “perfectionist” student a way to dodge a completely unexpected question in an exam. If there was only one choice and it happened to be in an area where a student hadn’t studied, it could affect their mood for the
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remainder of the exam. Providing more than one option encourages them to choose something that they feel more comfortable with. When I was scout leader, I noticed that a lot of the requirements were based around probability goals too. Most of the sections of their books said to “choose any three of the following five activities”. Even within questions, there were probability goals, “throw the ball and catch it on the return five times in a row”. A lot of the goals were also about self-improvement, “over the next few months, run 100 metres three times and beat your previous time”.
Using Probability Goals in Real Life If you have a child who frequently has meltdowns over homework or who gives up if they don’t get a perfect 10, then you could benefit from using probability goals. Instead of expecting perfection from them, try to get them to reach a certain target or to improve on their past work. For example; suppose that your child simply won’t eat vegetables. You could give them five different veggies and tell them that they had to eat TWO in order to qualify for dessert. This gives them back a measure of control without giving in to them entirely. If they have a problem with a particular food, such as peas, you could tell them that they need to eat half – or you could choose a very small number, say four and very slowly increase that requirement over weeks of meals.
Using Probability Goals in Homework The same goes for homework. Your child’s teacher may set a lot of homework but different children work a very different speeds. At one point, we discovered that while our son was doing less homework than other children in his class it was taking him three times longer. His teachers wanted him to do more but naturally he was unhappy doing several hours of homework each night. Instead of trying to increase his homework, we determined how many hours of homework his teachers expected him to do per night and chose work which enabled him to reach that target while still covering the major areas of learning. Clearly you can’t give your child a choice of subjects to work on, otherwise he’d choose the “fun” subjects like art and music all the time. Instead, give him a choice of work within subjects. For example, if his homework is a page of mathematics containing four sections of work, ask him to choose one or two and then move onto the next subject. You might also find that it helps to cover up the remainder of the page with blank strips of paper as this reduces information overload and makes the page look considerably less scary. Of course, sometimes you’ll need to restrict your child’s choice, particularly if you notice that they’re deliberately avoiding a certain type of work every time. A good example of avoidance could be the child who avoids word or sentence based problems in maths. If these problems are always ignored, your child won’t develop the interpretation and coping skills required to answer them.
Using Probability Goals in Sports Probability goes can also be used for after school and weekend sports. If your child is uncooperative at a sport, don’t push for completion, simply push for a better result than last time. If he is playing a team sport and reserves are available, then you could try to get him to play for 5 minutes longer than last week. If he’s doing something individual, such as indoor rock climbing, you could use his previous height as a goal. Above all, if he somehow smashes his previous record and can’t do it on subsequent tries, don’t try to force your child to repeat the performance. Instead, “lower the bar” and set an easier goal.
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This gives your child a way to work back up to their past achievement without too much pressure. One area where probability goals frequently need to be set back is in swimming. Some children only take lessons in summer. It is unreasonable to expect that after the winter break they will immediately be able to resume swimming at the levels they reached the previous summer. The same goes for children who have a “scare” in the water. Even if you child doesn’t succeed, try to find positives and use words like “good effort” rather than “better luck next time”. After all, it’s so much better for your child to try and “fail” than to fail to try.
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Is Your Child a “Class Clown” to Gain Acceptance? We all want to be accepted and to have friends, particularly at school but sometimes kids with special-isms are so socially different that they stand out from their classmates. Standing out makes it much harder to find acceptance among their peers. One method that these kids use to convert unwanted attention into acceptance is comedy. It’s actually quite common for kids with special needs to become the “class clown”. As parents, we will usually find this concept abhorrent but the important thing is not whether we are witnessing discrimination but whether or not our child is safe and happy. Many children are very happy being the class clown. They feel as if they belong with their group of friends and quite often these fringe friendships evolve into fully fledged and sometimes long term, friendships. Sometimes however, being the class clown can be dangerous.
Bullying and the Class Clown There are bullies everywhere in schools and they will usually target people who are different and people who draw attention to themselves. The class clown by definition does both of these things and will quickly become a prime target. Sometimes being a class clown provides protection from bullies because they don’t want to be seen associating with the “weird kids” and clowns can be quite resilient when insults are hurled. Most of the time however, bullies won’t give up so easily. One unique way in which bullies use class clowns is to set them up for potentially harmful effects. These can include getting caught, blame-taking, causing disagreement and dangerous stunts. As parents, we must be vigilant and need to regularly discuss school with our kids while keeping our ears open for signs of this activity. In particular, if your child frequently says things like, “Daniel told me to do it” or “Claire said we couldn’t tell anyone”, there is probably cause for concern. If the same names keep coming up whenever there is trouble, it’s fairly certain that you child is being bullied via deliberate negative suggestions. It’s important to note that many special needs children who are bullied in this manner don’t realize that they are being bullied. They often see these types of bullies as friends and resist separation. Special-ism: Professional Blogs addressing the ISMs of your children http://special-ism.com/
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When Clowning Backfires It would be wonderful if we could simply blame all of our children’s negative behaviors on external parties, such as bullies but this is usually this is not the case. Class clowns expend a lot of effort to keep their peers amused and it’s hardly surprising that occasionally they overstep the mark. In fact, often, they are their own worst enemies. Special needs kids, particularly those with ADHD, Autism and related issues have a reputation for being impulsive and sometimes their less considered entertainment strategies can cause a lot of damage. Physical injuries are common but the damage can also be reputational and/or emotional. Inappropriate clowning choices can also lead to serious long term issues such as depression. If your child shows signs of significant “clowning” then you need to ensure that they are giving due consideration to actions and words before they do anything “silly”. Signs that this might not be happening could include frequent injuries at social events or significant reactions from others to their verbal, written or photographic submissions. This is a problem which affects both genders and which needs to be addressed at early ages before their potential for damage increases. If your child has frequent access to electronic communication devices, such as iphones, ipads, android and other devices, then you need to make sure that you know how they are interacting with others. For example, they may be “trolling” forums using their real names. Trolling means to go around saying things intended to anger others. It’s a common behaviour and is often done for amusement. Trolling with one’s real name however could leave someone open to a real-world attack. Similarly, taking photos of their own, or other’s body parts for amusement purposes could lead to legal issues. In the real world, clowning behavior can lead older children to alcohol abuse, dangerous driving, recklessness or to attempt to entertain others using “Jackass style” tactics. Youtube is full of examples of youths who have attempted to amuse their friends in this manner. Many of the injuries sustained look painful and permanent. It’s not enough to attempt to block your child’s access to these videos because they’ll get access to them somewhere away from your protective embrace. Your child needs to fully understand the risks of “stunts” intended to amuse others.
Non-Harmful Clowning Of course, if your child manages to remain safe and happy while clowning, then the major areas of impact could be their academic progress. Depending upon the individual child’s capabilities and the circumstances, this may range from minor to severe. You will need to make your own assessment. If the impact is fairly minor, then it’s best to allow your child to be a clown if he wants rather than force a change which could upset the social dynamics of school. Clowning behaviors have positive benefits too and will help your child cope with stress. They don’t last forever and usually disappear quickly once children have left their school years behind.
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Change Your Child’s Behavior to Attract Less Attention When it comes to individuality, our culture is a mess of double-standards. On the one hand, we encourage individuality with slogans like “Just be yourself” and “stand out in a crowd” while on the other, we’re constantly telling our children to “try to fit in” or “not to make waves” or “don’t be such a baby”. While individuality is to be commended, it’s important to ensure that your children have an appropriate level of social acceptance. Sometimes this means you will have to change your child’s behavior to attract less attention. History is filled with stories of people who were individuals and who stood out from the crowd. These people made amazing contributions to our society but at the same time, most of them did not enjoy happy or peaceful lives. Many of these historical figures were punished for their individuality and some even died for their differences. The world of today isn’t quite so harsh but every now and then, our world bares its teeth and when it does, our kids need to be ready to “become invisible”.
When “Being Yourself” Causes Social Problems For the most part, our children are too young to express the types of differences which caused problems for the historical figures I alluded to but regardless of this, their special-ism’s will almost certainly draw attention to them. Since most children with “invisible special needs” look the same as their peers, their differences are usually in the form of unusual behavior.
A Stuffed Toy Example It is not at all uncommon for children on the autism spectrum to need to carry a familiar object, such as a stuffed animal or even a blanket when out shopping. This kind of behavior is cute when your child is little but by the time they get into their middle-school years, it can become problematic, especially if they bump into their school friends. Now if this sort of thing happens to you, it’s tempting to try to give your child’s judgmental friends “a good talking to about respect and individuality”. After all, why should your child have to change simply to fit into the social norms of others? The problem of course is that regardless of what you say or do, there is always the other child’s parents to consider. You might well lecture
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the child on acceptance but almost as soon as you’re out of earshot, the other child’s parents will probably start up a conversation about “finding other friends”. There’s just no winning in this kind of scenario. The best you can do is to prevent it from happening in the first place. If your child is too old to be taking a visible comforter shopping, then either give him an invisible one (such as something that remains in the pocket to be touched) or give them an age-appropriate toy, such as an ipod or hand-held game.
Correcting Behaviors The correction described earlier works very well when it involves objects that your child is physically carrying but sometimes the differences are so ingrained that they become visible on their own. Examples of this include; public meltdowns, very visible stimming behaviors (such as rocking, fidgeting or humming), eating and dressing problems. These behaviors will draw attention to your child and could result in bullying and exclusion by the other children. Clearly this is not right and it’s not your child’s fault that other kids are intolerant but I’ve found that it’s much easier to hide the behavior that attracts bullies than it is to get schools to identify and stop all bullying incidents. One thing is very clear; you can’t simply stop this kind of behavior with a verbal request, You have to constantly monitor and correct your child until the desired behavioral change becomes “natural”.
A Food Example For example, you may have a teenager who still forgets to eat with their knife and fork, who chews with his mouth open and who wipes his hands all over his clothing. While this behavior could be tolerated in the home, it would cause major issues if he were to have dinner with friends. In order to help him to correct his behavior, we need to make a point of ensuring that all meals are eaten properly and that good manners are shown all the time. This means that the wrong behavior must not be tolerated in the home but must be corrected at every opportunity. Furthermore, steps would need to be taken to reduce issues at school until the eating problem has been corrected. These steps might be to reduce the chance of him being served food which could become messy, perhaps by providing a packed lunch without sauces or mayonnaise. It could also mean forbidding your child to purchase “ice cream” at school.
A Dressing Example The same technique applies to clothing. For example, if your child constantly fails to wear underwear to school (or wears their pajamas underneath their school uniform), then you need to make it part of your morning “pre-flight check”. It’s embarrassing and it’s “baby-ing” but if you aren’t persistent, you won’t get the unwanted behavior to change. As your child gets older, you’ll want to apply this same level of attention to other aspects of grooming including the use of deodorant, inappropriate attire and even “sloppy” dressing. It may seem picky but it could mean the difference between having friends or becoming a victim of bullying. Encourage individuality but not at the expense of your child’s social interaction.
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Meltdown? Reduce Sensory Input, Reduce the Intensity Meltdowns! They’re arguably the most feared events for the parents of children with isms but did you know that the child or adult with an ism fears them too? Meltdowns are short periods of little control which can hurt people, damage property and destroy friendships and reputations in seconds. It’s little wonder that they are so feared. Meltdowns can be prevented in good circumstances and with practice but once in effect, they can’t be tamed. There are a few steps to reduce sensory input to help reduce their intensity and longevity.
What is a Meltdown? A meltdown is an out-of-control event which generally starts from a “trigger point” but is usually related to longer term thoughts. From the outside, it looks to the casual observer to be like a very bad temper tantrum but it’s not. Temper tantrums can be stopped. Temper tantrums are generally aimed at elicting a specific response (for example a child may throw a tantrum to get their own way, or a sweet). A meltdown is quite different. It is entirely uncontrolled and once started, it must run its course before it ends. Luckily meltdowns don’t run for very long.
Avoid the Meltdown It is very difficult to avoid meltdowns and it involves a lot of practice, self-knowledge and strategic withdrawal. Most children don’t learn to avoid meltdowns until their mid-teens and even then, it’s not always possible, particularly if the people around you aren’t very understanding. Reduce the Severity and Longevity of Meltdowns Special-ism: Professional Blogs addressing the ISMs of your children http://special-ism.com/
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In the event that meltdown avoidance has failed and a fully-fledged meltdown is under way, there are some things which can be done by parents and friends to reduce the severity. First and foremost is to remove any unnecessary people from the area. If the meltdown happens in public, this may not be possible. Unfortunately it’s not possible to control the behaviour of onlookers and it’s entirely probable that they will stir the meltdown to greater heights with stares, jeers and interference. In particular, if anyone starts attempting to film the event it could be very damaging for the victim of the meltdown.
Meltdown Triggers and the Fuel While meltdowns are usually started by a specific, sudden and obvious trigger, such as a favourite toy breaking, the inability to tie one’s shoelaces or perhaps a computer failure, these are only trigger mechanisms. They are the sparks which start a meltdown but they are usually not the fuel. There are usually other, longer term reasons that a person has been brought close to meltdown state. Quite often these longer-term reasons are completely invisible to us and they could be entirely internal to the victim of the meltdown. They may be the results of long-term depressive thoughts, feelings associated with others such as rejection or bullying or even the results of day-to-day lifestyle issues. Of course, there is also plenty of external fuel which mostly revolves around the senses. It should come as no surprise that meltdowns occur far more frequently in noisy, crowded, smelly or over-lit places. While there’s very little that you can do about the internal factors which fuel meltdowns you should be able to deal with the external factors, specifically the senses.
Reduce Stimulation It has been said that people take in about 2 million bits of sensory information every second of the day. Since sensory over-stimulation places a large role in meltdowns, and since, unlike thoughts, you can exercise a certain amount of control over the sensory environment, sensory reduction is one of the best ways to reduce the intensity of a meltdown.
Sight If you’re in a place with over-stimulating sight, such as a play area with lots of people running about and bright colours, you should consider moving to a “quieter” area. Be mindful that the subtle flicker of fluroescent lighting can also be problematic. Avoid staring at a person in meltdown state and if possible try to prevent people from crowding around them. One thing I’ve often witnessed in the past is adults who grab a child’s face during a meltdown and try to talk to them while looking into their eyes. Maybe that reassures neruo-typical (normal) people but it frightens people with isms and may escalate the meltdown.
Sound If you’re in a noisy place, try to reduce the sound or move to a quieter location. If you have music or TV playing, turn it off. Remember that air conditioners and other household machinery can also be very distracting for a person with sensitivity.
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Smell and Taste If there are any strong smells in the area, such as food, fuel or cleaning fluids, you should try to move to a less disturbing environment. Similarly if your child is having a meltdown while eating something, it’s best to try to encourage them to either swallow it or spit it out – this has less to do with the sense of taste and more to do with minimizing the risk of choking during a meltdown.
Touch Most people with sensory sensitivities don’t respond well to light touches. Avoid touching a person in meltdown state, particularly if your touching involves rubbing their hand, arm or back. If the person is willing, then a tight hug is often ok, but exercise caution and for your safety and theirs, ensure that they know that a hug is coming and are willing to accept it. If the person is in a place where a light breeze, for example – air conditioning, is falling on their skin, try to turn this off as this may be over-stimulating. Quite often the best thing to do is to supply them with a blanket as this will enable them to wrap themselves for the duration of the meltdown and regain a sense of calm.
Vestibular Senses A blanket will also help to dull the vestibular sense (spatial awareness) and it is particularly helpful if the person is in a large open space. Often retreating to a corner, or even better, their own personal space, such as a bedroom, will help. Finally, if the person is in motion under your control, such as a car, pull over and stop until the meltdown has finished, this will reduce the sensory overload and increase safety. It is very dangerous to drive with a person in a meltdown state. You can’t always avoid meltdowns altogether but by reducing the amount of sensory information in the individual’s environment, you can make them more comfortable. The meltdown can be a shorter lived experience for everyone.
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When Parents Disagree – Focus on Treatment Imagine this scenario >> Your child has fallen off her bike and after the fall, her finger is sticking out at an odd angle. You take her to the hospital where the doctor shows you x-rays and tells you that the finger is broken and that she won’t be able to write for some time. Suddenly your partner speaks up telling everyone that he doesn’t believe that it’s broken and that your child needs to continue writing like everyone else in their class. It’s clearly silly and extremely harmful to the child and to family relationships. In real life, this would never happen because the doctors would probably intervene and sanity would prevail. Sadly though, this situation – when parents disagree – is extremely common when it comes to “invisible” conditions, such as Autism, Asperger’s syndrome, ADHD and others.
Noticing the Dissimilarities The problems usually start somewhere during infancy where one partner, usually the mother, notices a difference in the child. There are a few reasons why it’s usually the mother; In the early years, mothers spend significantly more time with their children than fathers. This is because many parts of the nurturing role, breastfeeding for example, can only be performed by mothers. The breadwinner role of fathers in modern society tends to eat into a father’s time with his children. It’s not just about time spent, mothers at home tend to partake in gatherings of other mothers at parks, in playgroups, in playing areas at shopping centers and at preschool events. They get many more opportunities to see how their child interacts and plays with others – and they have
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more opportunities to compare developmental milestones. Mothers are far more likely to know whether their child is dissimilar to others of the same age.
A Simple Look at Genetics Despite the crazy theories which abound regarding the origin of these invisible conditions; refrigerator mothering, vaccination, environmental toxins and more recently, circumcision, the majority of these differences are simply inherited. Often when talking to parents of newly diagnosed children, I’ll ask about the parent’s jobs, expecting to find common careers, like engineering, computing or science disciplines. Sometimes the connection is less direct and it turns out that the child has an uncle or grandfather who could have had various isms. It’s usually just a matter of asking the right questions. There are also good reasons why these invisible differences tend to follow the male line. If you think back to your high school science class, you’ll probably remember that females have an XX chromosome structure while males have XY. Essentially, this means that a baby girl has a “choice” of three X’s, two from the mother and one from the father. If one of those X’s is less than optimal, there is a spare. Male children however have only one choice for their Y. If it carries a genetic ism, then it’s pretty much a given that they will inherit the trait. It’s not quite as simple as that and there are many other factors to consider but the most important thing to remember is that genetics is the key and that the odds are significantly higher that the traits will come from the father’s side – particularly in boys. What this means is that quite often, behavior which seems out of the ordinary to mothers is considered perfectly normal to fathers. It’s not uncommon for fathers to say, “I was exactly the same when I was little”. Unfortunately this response often leads into a denial of the problem and a failure to allocate appropriate resources.
Focus on Treatment, Forget the Labels I know of families who have struggled for years with acceptance of a diagnosis. In some cases, it has broken up marriages while in others, couples regularly argue on the topic at their child’s expense. These are households under great stress and nobody benefits. If you can’t agree on a label, then at least reach an agreement about your child’s specific needs. For example, look at some of the following in your child, relative to his similar-aged peers;
Speech Does your child speak slowly, enunciate poorly or frequently use incorrect words in context. It could be that he has difficulty with speech, understanding or hearing. It’s best to get these checked out by qualified professionals. You don’t need a diagnosis to do this. If your child needs help, then the answer, regardless of the label is for a professional, such as a speech therapist or an audiologist to work on it.
Coordination and Muscle Control Does your child have an unusual gait (walking or running style) compared to other kids? The unusual gait should be investigated, particularly in cases where it impairs the child’s normal development. Of course, if the gait does not affect the child in any way, then there’s no reason to correct it.
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There are other aspects to coordination and muscle control. You may find that your child appears clumsy or has difficulty kicking or catching a ball. Perhaps they tire more easily than their peers or experience discomfort doing everyday tasks (pencil grip discomfort is a very common complaint). All of these skills can be improved with practice and training. Arranging a session with an occupational therapist can be very helpful in this regard.
Academic Issues If your child appears to be having academic difficulties and needs support with spelling, math or grammar, you can arrange for some one-on-one tutoring. You don’t need to have a label to do this although there’s a good chance that a label will help with funding. Your child’s school will also probably have a special needs tutor. You should certainly arrange a meeting to talk with the special needs teachers as they can direct you to useful resources but you may find that this is one area in which a label is required to enable them to get involved. In the United States, a good place to start is with your school district’s child study team.
Change, Stimming and other Social Issues If your child is having difficulty transitioning between classes, or activities within classes, then there are plenty of easy options, such as making a visual timetable. If there are social issues, then play-acting, flash-cards or social stories may be appropriate. These are all things which can easily be done by parents at home. You don’t need a diagnosis to work on these with your child. There are plenty of good, free resources for these things on the internet. Don’t be afraid to give things a go.
Hakuna Matata There’s no doubt that raising a child with isms without a diagnosis is extremely frustrating and that the full support of both parents is what is really needed. Unfortunately, sometimes these things take longer than expected and while it’s very common for the other partner to change their thinking eventually, it’s not something that you should wait for. What your child needs most is the support of both parents and some useful early intervention. Sometimes that means that you need to swallow your pride and allow your partner to feel that they are right… for the time being. In the meantime, instead of pushing for a label, you need to be pushing for services. In the short term, a label won’t matter, particularly if it stops mom and dad from arguing and makes the home happier and more supportive. Early intervention without the label is still the most effective tool you can apply.
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How to Develop Realistic Goals With Children All children with Isms are different, so it’s important that goals set for them be different as well. Unfortunately, even the best of schools using the best Individualised Education Plans (IEPs) fall into the trap of providing a singular stream of education. It’s not laziness on their part, simply the difficulty of maintaining a classroom, even a smaller, special needs focused one, at multiple levels of need. That’s why the real work of goal setting and goal achievement needs to happen at home. Let’s take a look at how to develop realistic goals with children.
Why Set Goals? Goals not only provide a great way to measure progress but they also give your child something to strive for. Kids with goals generally achieve more than kids without. For example, compare the difference between these two scenarios. A child is constantly harassed at the dinner table about eating with his mouth shut while eating. A child is given a first goal of eating a meal with his mouth shut and then later goals of doing this for three, then five meals in a row. Which of these techniques is more likely to succeed?
Setting Goals When setting goals, keep in mind that they need to be realistic and achievable but not so easy that no work is required to achieve them. It’s best to have a small mix of goals at multiple levels with at least one being very easily achievable and one requiring considerably more effort. Short
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term goals are also better than long term goals as children tend to work better with more frequent recognition of their achievements. Goals do not need to be academic in nature. They can be social or physical depending upon the child’s areas of weakness or need. It’s best to discuss goals with your child in an open family setting (unless the goal is personal and/or embarrassing). This helps to ensure that the rest of the family is on the same page and can commit to helping the child to achieve their goal. This is particularly important when goals are behavioural. Sometimes it helps to give other members of the family goals too. This is particularly important if the child feels like they are being singled out. It’s also very important that the child agrees with the goal. There’s not going to be a lot of motivation to achieve a goal if the child does not consider it to be important, or worthwhile. With older children, the goal should be treated as a form of “contract” where the child agrees to the goal in exchange for a specific reward if it is achieved. It’s a good idea to put the goal somewhere prominently visible, such as on a kitchen or family room notice board as a reminder of the commitment. You should probably also write the agreed upon “prize” next to the goal. Again, if the reward is personal or embarrassing, resist the temptation to do this. Your child does not need to be embarrassed during play dates.
Setting Measurable Goals Goals need to be closed-ended and very specific in nature, for example; “three nights in a row without wetting the bed” rather than “no more wetting the bed”. When setting the goal, you need to think carefully;
How will I measure it? How will I know when the goal has been achieved? In the case of “no more wetting the bed” how would you know when to give the reward? If you’re trying to change a behaviour, start small and work your way up to larger/longer goals. For example if your child has an issue with reversing letters, you might set goals such as “complete today’s homework with no reversed b’s and d’s”. This puts the emphasis on a specific reversal and caps it at a single day’s homework. From there you could add letters, S for example or you could add days, two days homework for example.
Keep Setting New Goals Once a goal has been achieved, you’ll want to set another. Make sure that if the new goal is in the same area as the old one, that it is an increase in challenge. For example, don’t set a daily goal to simply get homework completed. This makes the goal boring and also stops challenging your child to do better. Include Prior Goals in Next Goals where Appropriate Remember that you’re trying to change overall behaviours, not simply hit a specific target. For this reason, you need to continue including old goals in your new goals. If your old goal was to have the bedroom tidied once per week and your new goal is to have your child bring their dirty wash to the laundry each week, then phrase it as; “Tidy your room each week including bringing your washing to the laundry”. Unless you do this, your child may drop an old achievement in favour of a new one with a reward. Special-ism: Professional Blogs addressing the ISMs of your children http://special-ism.com/
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Be Forgiving of Slip-ups Everyone has moments where they slip up and children with Isms will often “beat themselves up about it”. It’s important not to focus on failure but to move onward with goal achievement. Don’t give in and reward failure but if you believe that your child has genuinely been trying you might consider half of the promised reward. It’s important to treat goal-failure conversations lightly. Don’t shout at or punish your child for lack of achievement. They’re already being “punished” by missing out on their promised reward and it’s likely that they’re even more upset by the failure than you are.
Be Aware of Limitations Sometimes a goal that seems simple to you will be completely beyond your child’s ability. Some children have actual physical difficulty controlling their bladders at night, some have dyslexia which may make letter correction impossible. If you find that you’ve set a very difficult goal, revise it down, for example from “all letters correct” in their homework to no more than three mistakes. In fact, you might want to set an increasing scale of reward such as one jelly bean for each line that is written without any letter reversals. If you lower the goal considerably and your child is still unable to achieve it, then you may have set “an impossible goal”. In this case you need to make a note of this to discuss with your child’s doctor and teachers and change to a different goal entirely. Most of all, make sure that the goals are your own. They need to be “personal goals between you and your child”, not the goals of the classroom. They need to be individual, regular, achievable, measurable and fun.
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Scoring Anxiety? Choose Non-Competitive Sports As a child, I played soccer at my father’s insistence and I hated every minute of it. I had very poor coordination and it was all I could do to “not fall over” when kicking the ball. It didn’t really matter all that much because I could never run fast enough to keep up with the ball. I quickly lost all interest in the game. Of course, my dad got really into it and I ended up playing for about six years mainly because it made him happy. Unlike some children, I never developed scoring anxiety because I never considered that I might actually be able to score. I eventually became friends with another boy who had a similar disinterest in the game. I remember that he would become quite anxious when our team members and coaches said that we’d let them down. It did not upset me – one of the big advantages to being deaf is that you don’t hear a lot of the bad things being said about you. When I had kids of my own, I took my five year old to soccer and we played one painful-to-watch season. Clearly, he’d inherited my lack of skill as he did not kick the ball once during a match. While the soul-crushing accusations of “letting the side down” never materialized, I could see some parents taking it too seriously with their own kids. Concerned that it was only a matter of time before they would start pointing the finger elsewhere – we decided to get out of soccer.
A Move to Scouts I moved my son to scouts and immediately noticed a huge difference. Instead of competing with each other, scouts were encouraged to work together towards common goals. They were taught to support the less able members of their troops and to delegate tasks depending upon skill and interest. There were also lots of neutral activities such as crafts, drama, group songs and games. Having found this to be such a good fit for my kids, I asked my parents why they hadn’t sent me to scouts. They told me that they “just didn’t think that I would like it”. It was such a missed opportunity. They had mistaken my lack of interest in competitive sports for a lack of interest in any social activities.
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Once we decided that scouting was the way to go, I became a scout leader and I learned how to run games. Some of these games had clear winners but some did not. I would always choose the games carefully, often depending upon the makeup of my troop. When I had scouts with clear failure or scoring anxiety, I would either run “neutral games” or I would give them a job outside the game, such as score-keeper. Of course there were still times when I did run competitive games because it’s still important for children to learn about winning and losing but when I did, I was always watchful for anxiety.
A Quest for Activities As my kids got older, we left scouts and I made it clear to them that I wouldn’t accept “sitting on the computer, iPad, smartphone, gamepad or console” as a sport. Seeking physical activity, we looked at non-competitive sports, such as bike riding and ice skating. For us, the learning curve and the falls and failures proved to be too much. I’m still hopeful that they’ll improve in these areas but I’m not prepared to keep pushing their anxiety buttons. I’ve noticed that recently, there’s been a trend towards “not counting the scores” in competitive games at school. The problem with this is that somewhere, someone is always keeping score and that as they grow older, my children will eventually have to face the competition. I’m not a believer in non-scored competitive sports. Since I still need to protect my kids from scoring anxiety as they have significant problems with failure, I’ve chosen activities which are fairly cheap to do and easy to learn. I’ve deliberately avoided sports which include the kind of nasty falls you can have in surfing, skating or skateboarding. It also helps if improvement in the sport is measured not against others but against one’s past achievements. For us, that means walking, karate and indoor rock climbing. So far, these are working very well. Of course, there are plenty of other alternatives; fishing, canoeing, sailing, flying or driving remote controlled vehicles and general fitness work. It’s important for kids to get out and be physical but if your child reacts badly to losing, then it’s best to choose things that won’t set off their anxieties.
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Want Kids to Respond Positively? Don’t Mince Your Words My wife is always complaining that she has to repeat things several times over for me. Of course, I’m deaf, so I have a good excuse. The thing is though that I’ve known for a long time that there’s more to this problem than meets the eye. My wife has a similar complaint with regards to my kids. She will tell them to do something only to be ignored or misheard. Quite often a simple task will require several attempts before it is completed. She can be much louder than I can and I know that my kids don’t have a hearing problem because they can hear a candy wrapper at 50 paces. I’ve also found that I have significantly greater success when I ask them to perform the same task using my own choice of words. It’s interesting that I found the same pattern with the special needs kids in my Cub Scout pack. I have to conclude that there is a non-hearing related auditory listening problem in individuals with various Isms. The good news is that there is also a more effective way to communicate. “Speech Clipping” It’s very interesting to note that Temple Grandin has also picked up on this problem. She refers to it in her writings as “speech clipping”. Speech clipping seems to work in two ways. First, any speech prior to getting a person’s attention is lost and second, any speech involving any complexity, such as tasks and directions is lost. I’ve noticed a third issue. Providing insufficient information does not galvanise children into action – particularly if the caller’s intentions are negative — and I’m particularly talking about teenagers here.
Get Attention First From an early age, we try to teach our children to “look at us when we talk”. This isn’t always possible, particularly with kids who have eye contact issues but remember, looking doesn’t necessarily mean eye contact.
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If you can see your kids, then you need to make sure that you’ve got their attention before talking. Ideally they should be at least looking in your general direction. A child holding a toy is less likely to be listening than one who isn’t, so sometimes you need to say “put your toys down until I’ve finished talking”. If your children are out of sight, you should get acknowledgement before shouting at an empty space. I will usually tell my kids that I want to see their faces before I talk — and I’m rewarded with cute faces looking down from the top of the stairs. If nothing else, at least ask, “can you hear me?” before continuing. Note, don’t ask “are you listening?”.
Avoid Complexity I have a rule regarding shopping lists with my wife. She can ask for five things but after that, they must be written down. I’m quite often found in the shops counting my fingers and looking worried — it’s when I know there are five things and I’ve only remembered four. The important thing here is that I know that something is missing and I keep going over conversations in my head until I remember what it is. Teenagers and children have trouble remembering more than three things, particularly if they’re complicated. It’s like when you ask someone for road directions and they give you a long verbal list of turns. Very soon, you find yourself forgetting even the first few turns. If it’s complicated, make a written list or give your child one task at a time with an instruction to come back for the next task once it’s done. Kids and adults also respond better to closed lists and you’ll find that a numbered list works better than randomly assigned tasks. If you need to give verbal tasks, set a limit, say “I need you to do these TEN things”. Each time you assign a task, give it a number, “For the first thing, I need you to put all the shoes away – then come back for your next task”. When your child returns, praise them and remind them of the numbering before assigning the next task, “great work, now you have 9 tasks left”.
Give Clear & Precise Direction Getting your kids to come to you is not too dissimilar to training dogs. If coming to you is generally a positive experience for them, then they’ll react immediately to your voice. If quite often you call them only to give them chores or homework or to berate them for some oversight, then obviously they’ll be less likely to respond to your voice. I make a point of explaining myself when calling my kids downstairs. For example, I won’t simply yell out “John!” but will say “John, your dinner is on the table, come and eat it”. It’s longer but it conveys a message. In this case, John knows exactly why he’s coming downstairs and even if he missed the first part of the sentence, he’s certainly got the second.
Soften Chores with Sweetness If I’m calling the kids down to do chores, I’ll often distract them first by calling them down for a treat, perhaps a drink. Once I have them in the room and preferably sitting down with their drink, then I’ll go over their chores. Doing this ensures that distracting thoughts like toys and iPads are kept to a minimum because their hands and mouths are otherwise engaged in the snack. If possible, try to have something positive planned for once the chores are done and let your kids know upfront what they can expect once the chores are done. Rewarding for chores done is much more positive, both for them and for you, than punishing for chores which aren’t done.
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How Does Your School’s Rewards Program Fair? Most primary schools (or elementary schools, as they are called in the U.S.) have some form of “rewards program”. There’s usually a “student of the week” reward where students get to take home a small trophy or a stuffed animal in younger classes. Sometimes the reward is “looking after the class mascot”.
Why Should Any Child Be Left Out? With school years running for upwards of 30 weeks and class sizes in between 15-35 students, your child should be eligible for this honour at least once per year. Most teachers are pretty good at making sure that every student gets a turn but some are either very poor record keepers or are blissfully unaware of the consequences of their choices. Then there are the bigger awards; student of the term and citizen of the term. At the school my sons went to for the seven years from kindergarten through to year six, there were two such awards per class, four times a year. That’s eight awards per year and a total of fifty-six awards over the entire school period. There is no reason why any child should miss out – and yet they do.
Kids with Isms Left Empty Handed While we had friends who seemed to get these awards over and over again, my eldest child missed out entirely and my youngest would have too had my wife not had words (on several occasions) with the teachers and principal. Discussions with other parents of kids with Isms made it clear to us that we were not alone in this regard.
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In my younger days, I probably would have argued against the idea that all kids deserve rewards, suggesting instead that rewards needed to be reserved for particular achievements. My experience as a special needs dad has changed me. I now have a much better understanding of the purpose of these rewards and the impact that they can have, not only on your child’s self-esteem but also on the general emotional well-being of their families. These are not rewards, they are “encouragement” – and to deny them to the students and families who need them the most is simply “bullying”.
Every Child Deserves Recognition Every single child needs to be recognised for their contributions, struggles, achievements and perseverance. A few years ago, my wife and I sat in a hall full of graduating kids and watched in horror as they gave out, not just the final awards but also a whole swag of unexpected new ones. Our son had never received a single high-level award in his entire seven years of school but this sudden influx of awards had our attention. Could this finally be the day? Over the years at that school, we had been through hell and back, lost some close family members, gone through the whole special needs diagnostic process hand in hand with the school and used more than our fair share of tissues in some of those parent-teacher meetings. My wife and I had helped out at the school more consistently than many parents; enough that most of the teachers knew us all by name. My wife had gone to great pains to ensure that the teaching staff knew that our son hadn’t received any awards. We were hopeful that he would receive something but my heart was breaking for him as my wife cried her tears of pain in the chair beside me and we saw that while he still sat sadly in an increasingly vacant group of seats, half of his classmates had been rewarded – and that they were the same kids who “always” received the awards. The principal announced that a “farewell mass” would follow and my wife jumped up and led our boy out. She made it clear that we weren’t going to stay for more torture. We took him to McDonald’s to celebrate the end of his primary school years and to reassure him that he was “student of the year” to us.
Advocating for All Kids We sent a letter to the principal, who responded with excuses but also a promise to try to do better in future and we started dropping gentle reminders to the education team about our youngest son. One year later, with a new team involved, the teacher told my wife to stop asking and that “it will happen”. I don’t think that we believed him but we gave him the benefit of doubt. We decided that if it didn’t happen by the end of term, we would lobby like crazy. Finally, last week (on the second-last opportunity for such awards) we got a call to say that our son was receiving an award. It was such a momentous event for us that I took some time off work.
Rewards Mean So Much More to Families and Kids with Isms As we sat there and looked at the other proud parents, I noticed something rather sad. Many of the kids receiving awards were the same ones I kept reading about in the newsletters. Their
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parents were present but were pretty blasé about the whole thing. My wife and I however, had great difficulty holding our tears back throughout the awards ceremony. This was a very big deal for us. When we saw our boy get his reward, there were tears in his eyes too. Clearly it was a big deal to him as well. As a parent, it’s sadly your job to ensure that your school is keeping adequate records and to lobby for your child and any other “forgotten children” if they reach the last couple of years of their school lives and still haven’t got the recognition that they deserve. Remember; these awards aren’t for academic prowess, they’re for recognition and encouragement and as parents of kids with isms, we know that our kids have to work much harder than their peers simply to keep up. Surely they deserve a little recognition and encouragement for that.
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Kids Can’t Work Together? Separate Them All around the world, getting the kids ready for school is arguably the toughest daily chore for parents of school aged kids. If you’ve had lots of problems in this area, you’re certainly not alone. There are two factors that can make this task much harder – Kids with Special-Isms and siblings, particularly siblings with Special-Isms. Siblings can quickly turn any routine into a pushing and shoving match, fighting to get changed in front of the heater, turning teeth brushing into a water fight, spilling or spoiling breakfast and generally talking, teasing and otherwise distracting their siblings. The solution is simple- if your kids can’t work together, separate them. Of course, separation is much easier said than done. Telling them to stay apart is just not going to work. Especially if you disappear for a while, heaven forbid, to get yourself ready for the day. Obviously a strategy in needed.
Look After “Number One” Here is the bad news. You probably need to get get up earlier. You don’t get to sleep in so long. On the plus side though, you’ll be able to take some time out for yourself- and you’ll feel so much better for it. You would be surprised how much looking after “number one” can get your day off to a good start. So, set your alarm clock to 30 minutes earlier and get up to have a shower and get yourself ready. Maybe even have a stress-free breakfast before the mayhem starts. Now that there’s nothing else for you to do to get yourself ready, you can spend quality time supervising and supporting the kids. Of course, it still pays to be prepared. For example, making sure that the kids clothes are all “found” and laid out ready for them the night before. Special-ism: Professional Blogs addressing the ISMs of your children http://special-ism.com/
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The Production Line Before you begin, if you have any pets in the house, make sure that they’re fed, watered and then either put outside or covered up (or otherwise unable to interfere with the process of getting ready). Next, decide which of your kids is the “fastest dresser” and wake them up. Leave the others asleep. Sleeping kids are peaceful kids. As soon as your “fast dresser” is about halfway dressed, wake up the next kid and repeat the process. By the time the second child is fully awake, the first one should be moving onto breakfast (hopefully in a different room). You now have a production line. As much as possible, keep the production line operating in different rooms. Keep checking on all participants but stay with the slowest and most distracted kids until they’re ready. You’ll be surprised how much less stressful it can be.
When Things Go Wrong Of course sometimes, despite your best efforts, a major meltdown will occur. The rules for meltdowns apply here – most importantly, Don’t engage. If the child is not a danger to themselves, their siblings or your assets, then give them space. Work with their siblings in another room instead- this gives the meltdown time to decrease in intensity. You can try again when your child is calm. If the meltdown is actually a “tantrum” (ie: being staged for a reason) then taking attention away can have very positive effects. If it is getting late and school is really close (and you either have extra supervision or can trust your (older) “meltdown child” at home by themselves, then drop the other kids at school. This ensures that the actions of the unruly child don’t impact their siblings. It also gives the child more time to calm down and reduces the chance of the siblings interfering and prolonging or exacerbating the meltdown. Sure it means two trips but it is often worth the effort.
When Things Can’t be Resolved One more tip – if your child is constantly melting down due to change, for example, non-uniform days, dress-up days or sports carnivals, then sometimes it’s easier to keep the child at home – or send them to work with dad. Children with major change issues will learn more away from school than with their peers on “disruptive days”.
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Detect & Harness Your Child’s Special Interests Some Isms, particularly Autism and Asperger’s syndrome, come with “Special Interests”. While you usually have very little influence over the choice and development of a special interest, once you recognise it for what it is, you have access to the most powerful learning and motivation tool available.
What are Special Interests? A special interest is an extreme focus on a specific topic. It can last for a few months or years, or it could last a lifetime. Not so long ago, people with disabilities used to be credited with “savant” abilities or the development of new or heightened “senses” to replace other senses affected by their disabilities. While these things can happen, they’re actually quite rare. Most of the amazing people with Isms are using pretty similar abilities to everyone else – the difference often comes down to focus, and in particular, focus on areas of interest.
How do Special Interests Develop? There’s usually no conscious decision to follow or develop a special interest. It seems to occur because of a unique set of coincidences which include – exposure, age, initial interest and accessibility. Some interests, such as Star Wars have a much higher chance of selection due to repeated exposure. Three huge films over a ten year period, with a ton of merchandising in between offers repeated exposure. There’s a reason why it’s the special interest of nearly an entire generation. Others, like “Dinosaurs” or “Ancient Egypt” or “Trains” appear because they’re recurring topics in our mass media or popular children’s books. Sadly, the sorts of topics that parents dream about, like mathematics or sciences tend to be much rarer.
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Detecting the Special Interest I can remember when my eldest was first diagnosed with Asperger’s syndrome. My wife and I were eagerly trying to identify our son’s special interest. We were looking everywhere for signs that our son was fixated upon a topic without realising that at five, the boundaries of any topic in our sense of the word were invisible to him. We thought it was cars, then transformers or perhaps wheels until it started to dawn on us that seemed to be any kind of machine- even those like hand-dryers which he was terrified of. Now that he’s in his mid-teens, the special interests no longer hold any mystery. Whenever we are seated at the dining table, we can be sure that certain topics will always find their way into the conversation, no matter how much we try to avoid them.
Problematic Special Interests Most parents have issues with their children’s special interests. My parents had problems with my focus on “Doctor Who” from the tender age of four and they tried to dissuade me from the topic, getting the school library to stop me from borrowing the novels. I ended up buying them, hundreds of them. Forty-three years later, it’s still an obsession. As parents, you probably won’t be entirely satisfied with your child’s interests but unless they’re actively and severely damaging, you should leave them alone. It’s okay for an adult to still like SpongeBob or Lego. These don’t count as damaging but an addiction to porn or guns probably needs intervention. Some kids develop an interest in socially unacceptable things, including body odours, excessive gore and even feces. Next to these, an obsession with stuffed bears is fine. If an interest is damaging, the best you can do as a parent is to make the bad interest harder to pursue while making other good interests more readily available. You can’t force a change of interest but you can reduce support of it.
Harnessing the Special Interests As your child develops interests, the best thing that you can do is to ensure that you at least have a working knowledge of it. This will mean that you always have a way to engage your child in conversation. Beyond that, a knowledge of the interest will greatly assist you in motivation. There are many methods for motivation via special interests starting with simple bribery where you promise something related to the the interest to your child such as a toy, a token, computer or TV time. From there, you’re only limited by your imagination. Tie fighters docking can substitute for spoon feeding or spaceships can substitute for anything in math homework. Do you have a quiet child who won’t talk about their school day? The opportunity to do it in Darth Vader’s voice could be too tempting to resist. Don’t stop at simple school work though. Chances are that if you have discovered your child’s special interest, they’re thinking about it almost constantly. It’s amazing how many people follow their childhood special interests into adulthood and sometimes, into fulfilling and lifelong careers. The special interest really is the key to everything and a wonderful tool for motivation!
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Plan Ahead to Reduce Anxiety One of the most common problems associated with the various isms that children may have is – anxiety. Sure, a little anxiety is normal, most kids can be anxious about things. The difference is that in kids with Isms, that anxiety can quickly become lethal. It is optimal to have a plan in place ahead of time to reduce anxiety. I’m not exaggerating here either, anxiety fills kids up with adrenaline and triggers their “fight or flight” reactions.
When Fight is Triggered When the kids choose to fight, someone gets hurt, usually a parent or grandparent but just as often, the child with the Ism hurts themselves. Kids who often choose to fight in reaction to anxiety get into physical struggles with teachers, parents, doctors and police. Their sudden movements at inopportune times can cause damage too. Think about what happens if your child makes sudden movements with a mouth full of dentistry tools, or during a haircut – or when confronted by a particularly jumpy policeman.
When Flight is Activated When the choice is “flight”, matters are worse. Kids who choose flight often run out of the school gates, into oncoming traffic or into any number of other dangerous situations. If nothing else, they can become “lost” for hours, often in dangerous environments.
Reduce the Everyday Anxiety The key to reducing anxiety is “preparation”. If you know that something “different” is about to happen, then you need to get your child prepared. With verbal kids, this is done by talking about the day ahead and discussing the unusual event in the middle of a “normal day”. Sometimes you need to tell your child, several times over, what to do if they feel overwhelmed or if they get lost. Sometimes you have to write it down for them.
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If your child is non-verbal, these concepts need to be conveyed by pictures and/or by “social stories”.
Social Stories to Reduce Anxiety You can find lots of good resources for social stories on the Internet. Some parents create a social story “keychain” so that they can create a social story “on the fly” anywhere, others use an iPad or android tablet, photos and slideshow software. The best method is “whatever method works best for you and your child”. The best social stories take the form “this event first, and then…. This event”. It’s important to visually demonstrate the rewards after tough events, such as a dentist, but most importantly, the fact that life goes on and that “normality returns”.
Plan for the Unexpected Anxiety Sometimes events spiral out of control, become unpredictable or occur without warning. When these happen, the key is still to be prepared. In these cases, you can’t prepare for specific events but you can prepare your child for moments when they are overwhelmed. Make sure that they have “words to say” or a card to show someone when they are overwhelmed.
Plan for School to Reduce Anxiety Ensure that the child has a place to go such as a safe meeting point at school. For example: Instruct the child to show a card to a teacher which allows for the child to go to the school office and show the card to them. This lets the teacher know that the child needs to leave the class while ensuring that they remain in the school grounds, a safe environment. It also helps if you’ve talked to the school and teachers and office staff in advance. Practice the technique at home and at school with your child and they’ll remember it when they need it.
Plan for Shopping to Reduce Anxiety Different places will need different techniques and sometimes you’ll need to plan for vague concepts. In my youth, I was always getting lost in shopping centres. Partially because I was so easily distracted and partially because, being deaf meant that I never heard my mother calling for me. Eventually we agreed that if I ever got lost in a big shopping centre, I would head down to their centre stage – all shops had them back then. It quickly became a rule and neither my mother or I ever had to panic about my being lost again.
Plan for Police Interaction One of the other things to practice is interactions with the police and strangers. If your child’s reactions aren’t “typical”, you should consider taking them to the local police station to have their Ism recorded. This can really affect how the police treat your child – once they’re identified of course. If you have an older child, for example a late teen, then socialising them directly with the police may be a very good plan. Special-ism: Professional Blogs addressing the ISMs of your children http://special-ism.com/
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Roll with Unexpected Anxiety Sometimes, no matter how much planning you do, there’s just no getting around a major anxiety-inducing event. This is particularly common at the dentist or when undergoing surgery.
Advocate to Reduce Anxiety In that case, you need to make sure that all of the professionals involved understand that they’re not dealing with simple childhood anxiety. This is anxiety related to an ISM. It can’t be reasoned with and it can’t be bargained with. As a professional, they have to understand that the usual methods won’t work and find another way to get past the anxiety.
When Normal Won’t Work A good practitioner will be able to gauge the level of anxiety in a child by their reactions to words and concepts. For example: If a child is having major anxiety about a needle, repeated (constant) discussion of the needle by the child would indicate a fixation. If the fixated child is over reactive to touch, pre-swabbing the area or applying a “test band-aid” most likely won’t work for this child. It’s a good bet that normal procedures will fail because the anxiety levels are too high.
Ward Off the “Barge Through” Approach Parents need to keep a close watch on these things too because while an empathetic doctor will try to find a way to perform a procedure without elevating a patient’s anxiety beyond tolerance, a “bad” doctor will not. Less thoughtful doctors will simply try to “barge through” the barriers. If your doctor seems “hell-bent” on getting a non-emergency procedure done in their own particular manner and timing, then you may have to prompt with some suggestions. Suggest using “laughing gas” to reduce the anxiety before going ahead with the needle. Don’t worry if your suggestion sounds silly. It could be a good one or it might be enough of a prompt to get the health care providers to think of some workable alternatives. No matter what, as a parent, you are the key to reducing your child’s anxiety and making their world safer for them. Set up a plan to reduce anxiety and lower the fight or flight response. Plan in advance for potential situations and have a plan to roll with anxiety when all the planning in the world doesn’t prepare you or your child for an experience.
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Discover How to Become More Effective Parents As new parents, we mostly start out with a fairly positive parenting style. Everybody knows that babies cry a lot, so we’re more or less prepared for the initial onslaught. When it threatens to overtake us, there’s often someone willing to help out, after all, babies are cute. As time goes on, and the crying continues and the nappies get larger, it gets harder and harder to get support. It’s hardly surprising that so many couples break up when their kids are in the “terrible two’s”. It’s a very hard time for the whole family. Luckily, just past the terrible two’s things start to get better rapidly. The worst is over… unless you have a child with an ism. Then it could continue for several more years, or even indefinitely.
Watch Out for the Negative Spiral Suddenly attitudes around you change. Your child’s defiance is no longer cute and their outbursts actually do quite a bit of damage. Almost overnight, your child-minding options disappear because suddenly your child is too much for anyone else to handle. It’s these circumstances that cause family friction which can eventually devolve our parenting styles into negative self-depreciating behaviour that helps nobody and simply increases stress in the family. If you’re already in that spiral then the good news is that with a few changes, you can take charge of your life once again.
Fatigue – Inhibits Effective Parents First of all, it’s important to remember that we are all tired, whether it is because of a long day at work, lack of sleep or general all-round irritation. Nobody functions well when they are tired, parents don’t and neither do kids.
Consider Over-Stimulated Kids In particular, don’t forget that if your child has an ism, there’s a good chance that their environment is overstimulating them. Kids with isms may become overstimulated from lots of
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things including classroom noise, smells and even fluorescent lighting. It’s no wonder that they’re tired and grumpy when they arrive home from school.
Avoid the Blame Game It’s easy to blame the kids, your spouse, yourself or your wider family who won’t help out. Assigning blame might make you feel better in the short term but it won’t resolve the problems or improve your circumstances. As the parent, you need to be the change that you need in your life.
Adjust Your Living Hours If you’re tired, you need to try to align your “living hours” more closely with those of your kids. Sure, maybe you used to be a night owl. You have to accept that those days are over – for the next sixteen years at least.
Adjust Your TV Viewing You might love television but now you’re going to have to pick and choose what you watch because your viewing hours are going to have to shorten. Spending time sitting in or near your child’s room while they fall asleep is more likely to help you (and them) relax, than watching TV. Perhaps you could sit outside their room with a book or a magazine instead? If your child goes to sleep, you’ll get time to yourself, so it’s worth investing an hour to make sure that it happens. Leave your child alone at night and the hidden toys will come out – or they’ll start to keep their siblings awake.
Consider Medications You also have to remember that one of the most common side-effects of common medications for kids with various isms is loss of sleep.
Remember, You are Number One As parents, you need to look after yourself if you want to be the best parent that you can be for your child – even if that means taking regular breaks from them.
Nap Time = Time Out If you are a stay-at-home parent, you can use your child’s nap time to get some time-out for yourself. This only lasts up to a certain age so after that, you need to find more creative ways to get some time out.
Divide and Conquer If you have a partner, then you, the primary caregiver, have a lot of opportunities that single parents don’t have. In particular, you will either have time in the morning before your partner goes to work or if they’re an “early worker”, you’ll have time in the afternoon when they get home. Either way, you need to grab that time and make it your own.
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Exercise for Endorphins If your partner leaves at 7am, you may be tempted to sleep in (after all, you are tired). Don’t. Instead use the time when your partner is home to do a morning walk or some other, preferably out of the house, exercise. You’d think that exercise would make you more tired but the truth is that once those endorphins kick in, you’ll feel a whole lot better. After exercise, have a shower and spend a little time getting yourself ready for the day.
Wake Up Earlier I know parents who say that they struggle to get a 5 minute shower because as soon as they are out of sight, their children are running amok. The solution for people with partners is usually to get up earlier. In fact, there’s no reason why your partner can’t get your child breakfasted and ready superearly – it’s far better than being late – and it might just help your child get to sleep at night.
Respect the Need for Breaks If you’re a stay-at-home parent, then there’s a good chance that your main tasks are complete once your kids are at school. All that is left is the plethora of house maintenance chores.
Break for Parents Take a break before you engage the house. Do something that you enjoy. If you choose something addictive like TV or computing, set a cap of 30 minutes, otherwise the whole day can pass before you realise that you have other things to do. Schedule an additional break 30 minutes before the kids are due home. That way you’ll feel rested and more able to take on the challenges that come home with them.
Break for Kids When the kids do get home, respect their need for a break. About 10-30 minutes should be enough time for them to get changed and grab some food. Do not let them engage with computers, tablets or television in this time, you need them to be focused – and those things are addictive, particularly for kids with various isms.
Move into Homework Routine Once the kids are settled, it’s homework time. If you struggle with homework, you might consider splitting the homework time into two halves; one half for now and the other half for when the other parent gets home. Make the homework last a set period of time and be available for your kids during that time. This reduces problems with kids rushing through their homework without trying – if they finish before time, they have to “study”. The cap also stops academically slower kids from having to spend hours doing their homework. Just sign their homework at the point where they ran out of time and let the teachers know that you capped it there.
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If your kids routinely disturb each-other during homework, you may have to put them in separate rooms – or at worst, have them do their homework in separate stages.
Prepare the Evening Wind Down After homework, you’ll probably want to give your kids some free time before and after dinner. Unless they use that time for fighting, this is good as it will give you all a chance to relax.
Shut Down Electronics Be sure to shut everything down just before bed and in particular, to collect all portable gaming devices such as mobile phones, iPads, androids and gaming devices. Do not let your children charge these devices in their rooms. Not only will they prevent them from sleeping but they are also a major fire hazard when stored under pillows.
Quiet Reading Finish the day with quiet reading for the last half hour before sleep. Doing this may help your child to switch their focus from the problems of their day to fictional characters (which helps sleep) and it may also reduce the amount of “gaming thinking” that goes on once they try to sleep. Computer games are so addictive for kids with isms that they often go to bed thinking about gaming problems and can’t sleep as a result. You won’t necessarily have a perfect day by following these steps but you may find that it makes things a whole lot easier.
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Uncover Anxiety with a Simple Game All children are nervous, particularly on tougher days like the first day of school or a dentist appointment. This is fairly normal but sometimes that nervousness spills over into abject terror. It is not healthy for a child, indeed for anyone to be exposed to frequent “moments of terror”, this can cause these moments to solidify from nervousness to anxiety
Anxiety – Beyond Harmless Fears To the uninitiated, anxiety might seem to be a relatively “harmless” set of irrational fears which you may presume that a child will eventually grow out of. However, that’s not necessarily the case. Anxiety is pervasive and if unchecked, it slowly spreads across other areas of your child’s development. Anxious children can find it hard to maintain concentration at school. It affects not only their grades but also their general levels of happiness at school. In worse cases, anxiety causes kids to “escape” from the playground and either head home or somewhere else to feel safe.
Get a Handle on your Child’s Anxiety Asking kids directly about their anxieties usually doesn’t achieve a great deal. Kids generally don’t want to talk about “their day” and particularly don’t like talking about the bits they dislike. As a general rule, if anxiety is present, as a parent you’ll know- or at least suspect the areas impacted by anxiety. You just need to ask some carefully worded questions to get the details.
Play for Answers to Anxiety One of the best ways to to get a handle on your child’s anxiety is to make it a game. To make it a game, ask each other questions about “What are you afraid of?”.
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Younger Children For younger children, it’s best to get them to give a score out of three. For example, 1 is Not Scared 2 is I don’t know 3 is I am scared
Older Children For older children, you can widen the scoring range to be out of five by including “a little bit scary” and “very scary”.
How to Play To play the game, take turns and ask the other person a question. For each question you get a score, 1-3 or 1-5. Start by asking your child some “fun” questions and move to more serious questions as the game goes on. Remember to keep adding “fun” questions whenever your child is looking disinterested. You can end the game at any time. Establish an end point such as the first person to score 15 or 30 points ends the game. 15 to 30 points is the equivalent of choosing 5-10 “very scary” items. Don’t drag the game out for too long because if it’s still fun when it ends, your child will be keen to play it again another time.
Ideas for Fun Questions to Ask How scary is….. For you?
Sully from Monsters Inc Cookie Monster Movies you may have watched together Going down the slide at the park Tigers Harry Potter Movie Accidentally going to school in your PJs
Ideas for Serious Questions to Ask How scary is….. For you? People looking at you Water going down the plug hole in the bath tub Writing on blackboard/whiteboard in school Catching the bus for school Buying a doughnut by yourself Speaking in front of the class at school Making a mistake in front of the whole class at school Be sure to mix things up a little to switch between serious and fun questions. By mixing it up often, it will make it less obvious that you’re homing in on a particular topic. Once you have a handle on the specific issues, you’ll be better placed to address them. Special-ism: Professional Blogs addressing the ISMs of your children http://special-ism.com/
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Discipline: End the Cycle of Yelling Some days, it seems as if yelling is just another tool in the endless arsenal of parenting techniques for discipline, up there with spanking, bribery and sanctions. We’ve all used these tools at one point or another and we’ve all had varying levels of success with them. Unfortunately, while negative feedback (punishment) is easy to deliver, it’s not actually very effective in the long run. Negative feedback can hurt you and your child physically and mentally – and it can affect your relationship with your child, especially when, as is frequently the case, one parent has a much lighter approach to discipline than the other.
Get a Handle on Your Yelling In order to reduce your yelling and progress to more positive behaviours to achieve good discipline, you first need to know what makes you yell. To do this, try to keep a log, or at least recall the times when you are yelling. Think about why you are doing it.
because the kids won’t acknowledge you? because you think they can’t hear you? to get the kids to hurry up? to get the kids off video games? because it makes you feel like they’ve “been punished”?
Yelling for Acknowledgement Two of the most common reasons for yelling are to get your kids attention and “because you don’t think that your kids can hear you.”
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Ultimately, you’re yelling for “acknowledgement” but if your kids have isms, there’s a pretty good chance that they won’t know that – or they won’t know how to “acknowledge”. It’s pretty common to see a parent yelling their kid’s name and see only a minimal reaction, perhaps merely a glance, from the child. In these cases, it’s clear that the child has heard their name being called but the adults automatically assume that they are being ignored. Shouting out a name is not an instruction any more than a tug on mother’s skirt in a crowded shopping mall – and most parents have already taught their kids via their own dismissive behaviour, that this kind of attention seeking behaviour won’t yield results. So why then are we surprised when our kids ignore us?
Shout Instructions, Not Names The other thing to remember is that kids with isms generally do not learn about behaviour desired by others in the normal way. They don’t tend to rely on generalisations of past experience to set current behaviour. Often they need to be told exactly what is needed. They also tend to have their own patterns of behaviour which include reduced contact, particularly in the area of eye contact. Instead of simply shouting your child’s name over and over, give further instructions; Instead of: “John… Johny! John!!! JOHN!!!” Try: “John, I need you to put that game on pause and look at me” In our house, when we call up to our kids upstairs, we say “I want to see your faces”. This works surprisingly well. Don’t assume that your child isn’t listening just because they’re not giving you the type of attention you’re looking for. Ask your child to repeat what you just said – you may be surprised to find that they’re listening.
Getting More Speed If you’re finding that you need to shout to “hurry up” your kids then it’s worth considering whether you’ve allowed enough time to get ready. Remember that kids take longer than adults to get ready, kids with isms in particular. Getting a shirt and pants on is easy for you if you’ve had thirty years of experience but for kids with fine motor skill issues, things like buttons and ties in particular present their own special problems.
Punishing Kids Sometimes our sense of justice gets the better of us. Sometimes we don’t feel satisfied unless we’ve served out justice.
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Punishing kids with shouting or violence might feel good at the time but it achieves very little One thing that I frequently remind myself of is that the word “discipline” comes from the word “disciple” which means teacher. If I’m applying “discipline”, I want to be sure that I’m teaching my child better behaviour. Shouting and hitting is very much the opposite. It’s teaching your child that people with power can use negative persuasion to get others to do what they want. In other words, this type of punishment teaches your kids that bullying is okay. Of course, allowing your child to be “naughty” without consequences will teach bad behaviours too. The best course of action is to tie the consequences to the actions as much as possible.
Actions and Consequences are Teaching Tools For example, if your child refuses to do their homework, reschedule it for later; “when dad gets home” or tomorrow, if possible. If the refusal continues, you need to remove leisure time activities as a form of discipline, such as computer games, access to wifi, etc. If they have a sibling who is doing their homework, then one of the worst “punishments” is to allow the siblings to have access to leisure time facilities (your child can “know” or “hear” but don’t allow them to watch). As soon as their work is done, you can allow them back to the devices immediately. Remember, this isn’t about punishment, this is simply showing that the time needs to be used for chores or schoolwork until their obligations are met. Remind them that next time, they might be able to save themselves more leisure time by doing their work at the earliest possible opportunity. It’s a great behaviour to learn and one that will help them throughout life.
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Give Your Brain the Downtime it Needs – Set Devices Aside Over the last ten or so years, there’s been a trend where the increasing mobility of devices has led to greater dependence and constant communication. However, our brains are not getting the downtime they need. As someone who loves technology, I’ve always been a big supporter of this trend and it’s really only been in the past few years that I’ve understood how destructive this really is. Technology holds a lot of appeal for kids and adults with Isms for many reasons but particularly because it allows conversations with reduced stress. Many people with Isms handle texting and email far more effectively than they do “real-life” conversation. Modern technology allows people to participate in group discussions without the stress of sticking to all the social rules. It’s therefore not unexpected that people with Isms are among the highest users of mobile technology. There are three really significant ways that technology affects us negatively.
High Risk of Overuse Injuries These used to be called Repetitive Strain Injuries (RSI). In technology circles, they’re caused by constant use of the keyboard, mouse, joysticks/gamepads and thumb. The resulting injuries can be quite painful and damaging in both short and long term – especially if they’re ignored. People with Isms often have a higher pain threshold than those without. They can ignore certain types of pain and may completely fail to notice others, particularly if they’re engaged in activities related to a special interest. This puts people with Isms in a high risk category for overuse injuries.
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The Lack of Downtime Our minds and bodies need regular periods of “downtime” in order to function effectively. In the past, mental downtime was more or less automatic simply because there was nothing to do while waiting. People used to “zone out” waiting for the bus, while walking or at the very least, when they were “taking care of business”. These days, there is no respite and mobile devices have moved into all of these areas. Your mind can’t rest because it is always being exposed to the onslaught of communications, status updates, questions, games, media and general information overload. With so much to occupy us, it’s little wonder that our attention spans are growing shorter and, I suspect, there’s more than a casual link to the rise in mental disorders. Once again, given that people with Isms frequently develop special interests around devices and that they often favour systems which allow them to reduce their dependence upon interpersonal communication, they are in the high risk group for device overuse. Many Isms, and many medications associated with Isms, also have side effects which make sleep difficult. When people with Isms can’t sleep, they often turn to their devices.
Lifestyle Impacts You’d think that the general lifestyle effects are fairly obvious. Most people understand the risks associated with obesity after all. These effects are far wider-ranging. There are are a lot more general lifestyle effects beyond the obvious one.
Addiction Fixations on devices often cause addiction problems, the results of which are extended device usage, a “disengagement from life”, poor eating and hygiene, mental issues and increased incidence of meltdowns. For example, meltdowns occur when games do unexpected things or when external factors, such as family, intrude on game time. People with Isms are especially susceptible to device addiction, and meltdowns.
Self Isolation Other lifestyle effects include increased self-isolation, and reduced social abilities, something that people with Isms struggle with even without device issues. Withdrawal from physical activity has effects on core and general strength resulting in poor posture and the increased likelihood of injury. Given that many people with Isms suffer from “low muscle tone” and general “floppiness”, this again puts them in the high risk category.
And the Answer is… There’s no perfect answer to these issues but if you or your children have Isms, you need to be keeping tabs on the amount of time you spend on your devices and the amount of alternative activities you schedule. In particular, to give your brain the downtime it needs, set devices aside and…
Move About Give your brain the downtime it needs and exercise! As simple as stand up and sit
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down at your desks, go for a walk or go to the gym.
Schedule Breaks Schedule regular breaks to give your brain the downtime it needs. Take mental breaks away from the devices, meditate or leave the devices at home sometimes.
Watch Your Posture Watch your posture. Set alarms on your devices to remind you to check your posture.
Manage Mealtime A perfect way to give the brain downtime is to take a time out and have proper meals at the table and away from tech.
Get Social Give your brain downtime from tech and spend time with people. Be sure to keep working on your communication skills.
Reduce Stress Be mindful of your mood and stress levels as they will signal when your brain needs downtime. Try to be aware of when the devices are “stressing you out” and take a break when you’re feeling frustrated by the device.
Get Your Zzz’s Get decent amount of sleep. Don’t charge the devices in your bedroom where you’ll be tempted.
In today’s society, you can’t fight devices. They’ve become an important part of our society and they’re here to stay. You can, however, make sure that you make healthy choices related to your use of them.
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Higher Education – Choose What Meets Your Child’s Needs It seems today, that higher education values prestige over practicality. Only a generation ago, kids who were performing poorly in academic settings were encouraged to leave school and find a job. Believe it or not, this “harsh” policy had some benefits. In the eighties, early leavers were in the minority. The leavers had the lowest wages in business so employers were keen to take them on. Of course, these jobs were fairly temporary. They usually lasted for a couple of years until they were old enough to warrant a wage increase, at which point they were usually “let go” in favour of new (and cheaper) blood. The effect of this was that there was a constant flow of early leavers from school. These leavers would gain a couple of years of apprenticeship, or at least good quality “on the job” training and experience. This training was something they could take with them as they moved on. The government also had some good cash incentives for employers to take on people with special needs.
Higher Education isn’t Always Better These days there’s a school of thought that says that everyone needs to have a degree and often more than one. If nothing else, kids are at the very least, encouraged to complete their highschool education. This holds true even if they’re not receiving any real academic benefits from their extended stay at school. As parents, we really need to question whether these are the right choices for our kids. Sure, leaving early closes a few doors. However, it does opens others. Because of this overall mentality, employers will “cherry pick” the highschool leavers with the highest scores. After all, the wages are the same, so why not make sure that you get the best Special-ism: Professional Blogs addressing the ISMs of your children http://special-ism.com/
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value for your money? However, this cherry picking means that the less academically inclined young adults will miss out on job opportunities even if that academic knowledge is not a key requirement for the job.
Trade Schools may be More Suitable It’s not just a matter of securing low-income on the job experience. Sometimes the kids who are “better with their hands” will find that external specialist educational institutions such as technical colleges, trade schools and “night school” are much better suited to their individual needs that higher education such as college. For example, a teenager who has a keen interest in cars but struggles with writing essays or doing arithmetic will find that a mechanic trade course will be a better use of their time than school subjects such as history, mathematics and art. As a bonus, trade institutions usually work closely with workplaces and employment agencies to provide job-specific training and in many cases, placement. Some schools will even work with external institutions to provide partial training, with the external subjects replacing parts of the school curriculum. This is a particularly good option if your teen has friends at school that they don’t want to leave – and as a bonus, it gives them a good chance to get their school leavers certificates.
Explore Micro Business Opportunities As a parent, you need to weigh all the higher education options for your young adults. Encourage them to make the choices which most closely align with their needs, interests and abilities. The emphasis should not be on just those educational options which bring the greatest “prestige”.
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Own Your Stress and Live More Peacefully Over the years, I’ve read quite a few books on stress and I’ve heard the same phrase over and over again – “we create our own stress”. I don’t think that I really appreciated what that meant until recently. At my workplace, we had a new position created. The newly created position had exactly the same wording as my current title with a slight rearrangement of those words. My workplace completely fumbled the timing of the release of the information. It was accidentally released while I was out of the office dealing with a family medical issue. When I returned, I was assured that my job was safe and that this was indeed a new position. Unfortunately the circumstances surrounding the timing of the release and the similarity of the names of the position, combined with the groundswell of political opinion at work, suggested otherwise.
Worry Over Job Security From there, I started to worry about my job security. I then began to worry about my ability to provide for my family. In addition, I also started to worry that there was some kind of hidden agenda. I then worried about how to ensure that I sent the right message back to my workplace. The newly created position title made me feel like I was entitled to the job. I also felt that my employers were keeping that position from me. I considered the frequent money issues at home and my length of service at the company. I considered the several years of my wife’s prompting to request a raise. I began to feel entitled to receive a raise.
A Move Out of the Comfort Zone I’ve been working at this company for 16 years. I was quite comfortable there. However, suddenly, I found myself applying for a another job. This job was under a boss I couldn’t relate to. This job included some socially confronting duties that I wasn’t comfortable with.
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As a person with Asperger’s syndrome (and deafness which makes boardroom interactions very difficult), I found myself trying to move out of my “comfort zone”. It put a huge amount of stress on me, my family and my team at work. I found that I couldn’t sleep. I began to hate work. All of my conversations felt tinged with negativity and depression. As is common with Asperger’s, I’m prone to strong internal emotions which aren’t always visible to those around me. I began having dark thoughts. Every time I crossed the road I found myself thinking how much easier life would be if a car came along at just the right time.
We Create Our Own Stress Fortunately at that time, I happened to be reviewing a book on stress. This book was pushing the whole idea that “we create our own stress”. In reading this book, I suddenly realised that I didn’t actually want the new position! I did not want the added responsibility that came with it! I could continue to live without a pay increase. I just needed to be a bit more frugal with expenditure.
Put Happiness First At home, I had quite a bit of trouble explaining my choice but eventually my wife understood my desire to put happiness first. I contacted the job agency and thanked them for interviewing me. I told them that I wanted to withdraw my application. They were more than a little surprised.
Work Through the Logic Within hours, I began to feel better. I calmly worked through the logic of the situation. If my workplace decided to make me redundant, I knew they’d have to pay me out. I now knew that I was employable elsewhere. My recent experience had caused me to update the resume and brush up on my interview skills. I’d also clarified, in my mind, the kind of job I’d like to do. If my workplace decided to let me go, it would be their loss. If they decided to keep me, that’s good too. It’s true. I really was the master of my own stress and I was amazed at how one small decision, could release so much anxiety. I’ve explained all of this to my children on the spectrum. It’s a life lesson that I think they could benefit from too.
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Computing Technology – Keep it in a Shared Family Space One of the stories I often amuse people with is the time that my, then seven year old with autism, booked and paid for a wedding in another country. The whole package included flights, accommodation and cars. The first we knew about it was when we received an invite! This is when computing technology and kids can go awry! Panicking, we asked him whose credit card had been used. He said that he started out just using our phone number and kept changing digits until it got accepted. It was then that I decided it was time to move the computers all into the one room. I told the kids that it was to help with games and networking but really, security was my primary concern.
Keep Computing Technology Together There’s a lot to be said for having all the computers in one room. For a start, home-grade wi-fi tends to be flaky. Cabling the family computers together speeds things up considerably while avoiding dropouts. It also reduces wi-fi bandwidth that is needed for fully wireless devices like phones and iPads. Best of all though, it keeps the computers and the family close where you, the parent, can keep an eye or an ear on what is going on. It also ensures that your child can’t retreat to their bedroom to play and must maintain a bit of family social presence even when they want to spend hours on the computer. Within hours of moving the computers together, I’d caught my son filling out an online application for credit! He was trying to buy Lego on eBay. I’d also answered more questions about tough topics than ever before – many of which I had to look up answers to. Moving the computers together is a decision I’ve never regretted.
Protect Against Inappropriate Material in Computing Technology As a parent, I’ve always tried to be open about things. The internet is so full of objectionable material and ideas. I’ve always known that no matter how well I “net-nanny” things, the kids are going to stumble across certain undesirable materials. It doesn’t help that my youngest, now 13,
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has become something of an expert at knocking over firewalls, cracking passwords and social engineering. The best that I can do is be open and approachable. Willing to explain whatever they discover and to talk calmly about the reason that it is bad, inappropriate, downright impossible or at least debatable. Quite often, kids with isms don’t understand why certain things are inappropriate They may think that they’re funny or they may bring these topics up in casual conversation. Acting shocked about it simply encourages them to do it more. I also have to be sure to educate my kids on the latest scams, personal digital protection and social engineering tricks to ensure that nobody takes advantage of them. People with isms are often described as naive and I believe that foreknowledge is the best protection.
Foster Safe Online Play with Computing Technology While it’s scary for us adults, online play, particularly “play with chat” can be very useful for kids with isms. These kids usually have difficulty making or keeping friendships “in real life”. Online gaming and chats help to reduce the over-stimulation of real life conversations. Reading faces and tones is less critical online and this tends to level the social playing field. It also helps that many kids with isms seem to have an affinity for technology that is out of reach of those without. Nevertheless, my kids have a habit of leaving cameras or microphones on! Then they get changed in the same room. Yikes! I’m constantly reminding them that they need to shut those things down when they’re not using them.
Avoid Addiction of Computing Technology Computer addiction is very prevalent with kids with isms and bedtime can be a bit of a struggle. If you find that your child is very tired in the mornings, search their room for “electronica” such as iPads, phones and Gameboys. Make it a rule that all devices need to be charged somewhere outside of the bedroom and set up a proper charging station for them. You might need to go so far as to have a checklist to make sure that all devices are charging in the proper assigned space. Make sure that your computer room door is closed at night and that the kids can’t sneak in there once you go to bed. Apart from the sleep problems that addiction causes, it’s also downright dangerous to sleep with computing devices. You only need to think about Samsung’s exploding battery problems to realise that. You might also want to see if your Wi-Fi router allows you to split your Wi-Fi between a public and private Wi-Fi. If it does, you can put your kids on the “public” one and leave the adults on the private one (ie: with a different password). Making this adjustment will allow you to turn off the public Wi-Fi without affecting the rest of the house, or perhaps even schedule a nightly automated “turn off”. Computing technology is very important for kids with isms and the benefits usually outweigh the dangers. As the parent, you will often need to take steps to minimise these dangers. One of the best ways to control it is to concentrate the technology in a shared family space.
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How Deaf People Listen – How You Can Help I was getting breakfast at McDonalds this morning and I started thinking, “Perhaps if I explained how, as a hearing impaired person, I was struggling with a situation, it could help people to better interact with deaf people.” In this particular case, I was sitting at a table with my breakfast, waiting for the barista to finish making my coffee. The screen with order numbers on it was broken. I was too far away to hear anything, so I was carefully watching the barista’s lips for my number; “one one five” or the name of my coffee; “soy mocha”. I knew that my coffee was near because, as a deaf person, I collect as much visual evidence from my surroundings as I can. There was a carton of soy milk on the counter, which to me meant that it was time to watch extra closely. In the end, she put a cup out and nobody claimed it. She said something that wasn’t my number and I asked “soy mocha”? She replied, “yes”. A second or two later, my brain finished processing her earlier words. She’d said “one-fifteen”, which lip-reads entirely differently from “one-one-five”. Add to the challenge is that it was spoken by a person for whom English is a second language. These are additional barriers for deaf people – unusual traits, such as loose skin, partial facial paralysis or a tendency to speak out of the side of their mouth.
The Clues Deaf People Use I got my coffee, so it was a happy ending but it also reminded me that this was a “teachable moment”. People who often interact with deaf people assume that lip reading is a precise
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science but it’s not.
Reading Lips It’s important to realise that a person who is relying heavily on lip-reading has to go through the process of mentally fitting dozens of combinations into your sentences. It takes a bit of time and it means that we’re sometimes slow on the uptake.
Lip Reading Barriers Accents, beards and lisps can significantly change the way that people speak. The vocabulary used has a major impact and so does the context. A small change in the words we use can mean a giant difference to a deaf person.
Finishing the Sentence Siblings and married couples often finish each other’s sentences. For our partners, sometimes it’s funny and sometimes it’s annoying but this is a critically important skill for deaf person. Guessing the second half of a sentence based on the first makes it so much easier to keep up with conversations. Unfortunately, as we become older and more experienced at this, we often fall into the trap of speaking the second half of the sentence before they’ve finished speaking. It can cause relationship issues.
Excuses for Deaf People “What?” Only Goes So Far One of the worst things for a deaf person is dealing with a person who is extremely difficult to understand. You quickly learn as a child that asking “what?” all the time will make people angry, so you start by varying your words; using What? Pardon? Huh? and Sorry? to try to keep things “fresh”.
Limits and “Oh, OK” You also realise that there’s a limit to the number of times that people will repeat things. In my case, I draw the line at three. If I’ve asked someone to repeat something twice already, I’ll generally give up on the third by saying “oh okay” which is often enough to make people go away. Sometimes it backfires. Sometimes people are asking me to do things that never get done. Sometimes they’re telling me about something important, such as a death in the family. When they’re expecting an empathetic response, “oh okay” doesn’t really work.
Repetition Not Always Key One of things I wish we could teach people is that repeating the same phrase over and over simply doesn’t make it any easier to hear. Changing the words will often make it much easier to lip-read.
A Little More Context Please Additionally, sometimes you have to give deaf people a little more context. For example, if someone is in the middle of talking to me about a computer problem at work and then says, “my Special-ism: Professional Blogs addressing the ISMs of your children http://special-ism.com/
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auntie died today”, I’ll struggle to convert those lipread words into something relevant to their computer problem. It’s extremely difficult for deaf people to realise that you’ve “switched gears” in the middle of a conversation.
Silver Bullets for Deaf People – Not The final thing that is frustrating for a deaf person is when people ask me why I don’t just use sign language or why I don’t wear hearing aids. It’s as if they think these things are silver bullets. They’re not.
Sign Language Sign language is only useful if both parties know it. It varies enough from place to place that it’s not in any way “exact”.
Hearing Aids Hearing aids serve to make things louder, not always clearer. If you experience problems with specific frequencies or you can’t hear certain sounds like “S” and “PP, making it louder isn’t going to help. It’s simply going to make all of the other sounds louder which is both annoying to the deaf person and sometimes quite painful. We’re deaf. We’ve lived with it all our lives. Trust us. We’ve tried these things and if we’re not using them, then they’re not applicable to our personal situation.
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About Special-Ism Special-Ism (http://special-ism.com/) was a publishing pioneer among the “invisible” special needs industry from 2011 – 2018.
What is Special-Ism? Special-Ism is an online publishing source chock full of professional blogs addressing the ‘Isms’ impacting children at home and in the classroom. Each and every article we publish features an ‘ism’ accompanied by professionally recommended solutions.
What is an “Ism”, you ask? It is our coined term. It is synonymous with a “challenge”. Many children, with or without a diagnostic label, experience various challenges throughout their developmental years which are impacting them in the classroom and at home. At Special-Ism, the Ism is our focus. We do not look at the diagnostic label, instead, we look at the Isms and offer solutions no matter the diagnosis. Special-Ism boasts an extensive library of practical solutions to help children reach their potential. We strive to provide a variety of insights from clinical professionals to provide our readership with insights to address an “Ism”. At Special-Ism, we are a unique online publishing source that offers content marketing to clinical professionals while supporting the readership seeking solutions to the isms.
Special Online Promotional Platform for Clinical Professionals Special-Ism has grown into a powerful online presence with continued, unprecedented growth each month. We put clinical professionals front and center to their niche market. It is our mission to help increase the online presence of our team of writers. Join our team of writers and tap into our incredible readership to increase your online presence and authority! Special-Ism works for our team of writers to help them develop and maintain a strong social media presence. By offering our writers a high traffic article marketing platform, we help clinicians increase the efficiency of their online efforts. Our high traffic platform helps our writer’s published content to be discovered, leading to increased return of online time investment in the most efficient style.
Supporting Our Amazing Readers Our goal is to help our readership find solutions to the isms children may experience. We proudly boast a wide variety of clinical professionals sharing insights to help children reach their full potential. We showcase products and resources to help support various isms. We are grateful to those who share our insightful articles via social media. As our traffic grows each Special-ism: Professional Blogs addressing the ISMs of your children http://special-ism.com/
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month, our hearts grow a bit bigger because we know that more and more children will reach their potential!
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