SPECIAL BABIES

SPECIAL BABIES Handbook For Parents Of Children With

DOWN SYNDROME

Revised Edition

P. O. Box 394 – 00200, NAIROBI Tel: +254 20 6761386, Cell: 0720 555 287 / 0722 527 041 Email: [email protected] or [email protected]

SPECIAL BABIES

1st Edition - 2006 Revised Edition - 2010

SPECIAL BABIES

“Weweretraumatizedatfirst, but he is a gift from God” Parents of baby Bhavik



Dear Parents

I understand you have recently had a baby with Down Syndrome. I can appreciate that at present you will be feeling a whole mixture of emotions; grief, fear, anxiety for your baby’s future, loneliness at having a baby with special needs, etc. What should be a joyful time for you will probably be a time of confused feelings. My daughter is now thirteen years old. She has Down syndrome. I remember what a difficult time it was when she was born. When she was six weeks old, it was discovered that she had a hole in the heart. This was particularly difficult for me because I had developed a strong protective love for her and I could not bear the thought of losing her. When she was born, I asked God to give me a strong love for her which He did in great measure. When we discovered that she was sick I was distraught and God said to me, “Your tears are waste. She is going to be fine.” She had the operation to close up the hole and she has had no problems since. Children with Down syndrome are individuals just like any other children. They have their individual personalities but they share some similarities like a special love for people. They are very trusting and because of this they need special protection. She now goes to school and has a full active life going to girl guides, dancing school, swimming, and of course Church. Congratulations! God bless you and your baby. God loves you both very much. (Excerpt from a letter, written to a new mother)

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Introduction

Down’s syndrome is still a relatively unknown condition by most people including professionals such as doctors and teachers in Kenya. Currently diagnosing children is based on observable physical features this can be inaccurate since the same features are found in some of the people in the general populace. The lack of knowledge and awareness of the condition leads to late diagnosis and thus poor access to early intervention programs for the child such as speech, physiotherapy and occupational therapy. This manual attempts to provide answers to frequently asked questions especially by parents of children who have just been diagnosed with Down syndrome. It is compiled by Down syndrome Society of Kenya (DSSK) and is intended only as a basic introduction to Down syndrome.



What is Down Syndrome?

Down Syndrome (DS) is a chromosomal disorder. Chromosomes are tiny threads found inside each cell in our bodies. They carry the instructions that tell cells how to live, grow and work. These instructions are called genes. They determine the way we look and how we act. There are usually 46 chromosomes in a cell arranged in pairs – 23 sets of two. They are numbered 1 to 23. Nobody knows how or why it happens but babies born with Down syndrome have an extra chromosome making a total of 47. The genes in the extra chromosome slightly alter the way a person develops. That is why Down syndrome is not an illness or a disease rather it is a condition. DS can lead to development delays, learning disabilities and physical defects such as hearing difficulties, eye problems and heart conditions. There are an estimated 40,000 people who have Down syndrome in Kenya. They come from all parts of the country and are represented in all races, religion and socioeconomic strata. Further this number is increasing, going by the global average, at the rate of one in every 800 births.

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Key Facts About Down Syndrome • • • • • • • • •

Down syndrome is a chromosomal disorder. Anyone can have a baby with Down’s Syndrome People with Down syndrome can have long productive lives Children with Down syndrome exhibit different learning and functional abilities. These challenges range from mild, moderate to profound Either parent can have defective chromosome the egg (female) or the sperm (male) There is a wide range of individual needs and abilities Development continues throughout life Down syndrome is not a degenerative disorder. It does not get worse with time, however, early intervention will help in maximising their potential • There are effective interventions but no known treatment or cure for Down Syndrome

How Will We Know Our Baby Has Down Syndrome? Babies with Down Syndrome can usually be identified at birth. Some of the typical features include: • Facial profile seems slightly flattened • A slightly open mouth and protruding tongue • Slanted eyes with an epicanthic fold (tiny folds covering the inner corners of the eye) • The bridge of the nose may appear flat • A single crease on the palm of the hand • Small ears • Stubby fingers and • A slightly rounded head • Short neck The muscle tone of babies with Down Syndrome is not very firm rather it is usually floppy. Children with Down Syndrome also tend to be shorter than average and may have quite a stocky body, arms and legs. However not all the traits mentioned are found in every child with Down Syndrome. 3

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How Will Our Baby Develop (Developmental Milestones) ? MILESTONE

RANGE OF CHILD WITH DOWN SYNDROME

TYPICAL RANGE

Gross Motor Sits alone Crawl Stands Walks alone

6 months – 2 years 6 months 8 months – 1 year 10 months One year -3 years 3 months 1 year – 4 years

5-9 months 6 months – 1 year 8- 1 year 5 months 9- 1 year 6 months

Language First word Two Words phrase

1- 4 years 2 years – 7 years 6 months

8 months 1 year 11 months One year 3 months – 2 years 8 months

Personal / Social Responsive smile Finger feeds Drinks from cup Uses spoon Bowel Control Dress self unassisted

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1 and a half months – 5 months 10 months – 1 year One year – 2 years 8 months One year – 3 years 3 months 2 - 7 years 3 years 6 months - 8 years 6 months

1-3 months 7- 1 year 2 months 9- 1 year 5 months One year – 1 year 8 months One year 4 months–3 years 6 months 3 years 3 months -5 years

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What Are The Rates Of Progress For A Child With Down Syndrome? Children with Down syndrome are all individuals and vary in their rates of progress - however, they tend to have a specific profile of strengths and weaknesses: • Social development and social learning are strengths, right from infancy - the children enjoy and learn from social interaction with adults and peers. • The children have strengths in social skills and in developing age-appropriate social behavior, if this is encouraged and expected. However, their good social understanding and empathy leads them to pick up on non-verbal emotional cues, such as those for anxiety or disapproval, very quickly. They are therefore sensitive to failure and may use behavioral strategies (like tantrums, pity parties and other forms of manipulative behavior) to avoid difficult situations. • Motor development (e.g. crawling, walking, grasping, etc) is usually delayed and may hold back progress in self-help skills, handling toys in play and in writing. The use of gesture to communicate is a strength • Speech and language development is usually the children’s area of most significant delay - it is more delayed than non-verbal abilities. Most children understand more than they can say and signing is an important bridge to speaking. • Speech clarity is usually a difficulty due to a heavy tongue, a high cleft, and poor muscle control. • A high incidence of hearing difficulties is contributing to speech and language delay. • The children learn more effectively from visual and tactile information – what they see and touch (concrete), as opposed to listening (abstract). This is because of short term memory.

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What Are The Major Health Challenges? Some babies who have Down syndrome have poor muscle tone which makes it harder for them to learn to roll over, sit up or walk. Physiotherapy can help with these problems. About 40 -50% of babies born with Down syndrome have heart problems. An ultrasound exam of your baby’s heart will show any defects. Surgery may be necessary to fix some of the heart defects. Some babies with Down syndrome have problems with their digestive systems which may lead to stomach and intestinal blockages. Swallowing may also be a challenge to some children due to their heavy tongue and poor muscle tone. In severe cases surgery may be necessary. However once the surgery has taken place the problem normally ceases. Other health problems include, thyroid disorders, respiratory problems, poor eyesight (and in some cases cataracts and crossed eyes) and hearing problems. Most can be corrected through surgery and in the case of eyesight difficulties corrective lenses can be used. Children with Down syndrome are also more susceptible to infections and these infections take a little longer to cure than other children. They also struggle with obesity and may need to observe their diet and engage in physical activities.

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How Do I Care For My Baby Who Has Down Syndrome? Just like any other new born, your baby will need to be fed, dressed, diapered, cuddled, held, talked to, played with and loved. However, your baby may have some health problems that will require some extra care both from you and from a specialist as well. The following tables show the health care guidelines for a person with Down syndrome during the different stages of their lives

Prenatal Period • The health consultant should discuss with the prospective parents the available technical procedures for the prenatal diagnosis, the available treatment, and the options of bringing up a child with Down syndrome

The First Month • • • • • • • • • •

Clinical diagnosis and communication with parents Chromosomal testing Clinical and neurological assessment Clinical investigations for congenital malformations (echocardiography, abdominal echography, etc) Ophthalmologic examinations Auditory screening (otoacustic emissions) Blood tests for polycytemia, leukemoid, leukaemia, etc Routine neonatal screening Encourage breast feeding Parental psychological support

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The First Year • Periodic clinical and neurological assessments every two months • Evaluation of appropriate food intake and of normal growth for Down syndrome every two months • Echo cardiography (if not done at birth) • At 6 and 12 months, visits and screening for visual and hearing defects • Blood tests for thyroid disease, anemia, and any immunological defects • Vaccinations • Refer to DSSK for support • Periodic family psychological support with special emphasis on siblings

1- 6 Years • • • • • • • •

Biannual clinical and neurological assessment Periodic assessment of diet and prevention of obesity Periodic growth assessment Annual Dental examination Annual orthopedic (bones) examination At 3 and 6 years visits and tests for visual and hearing defects Annual blood tests for thyroid disease, anemia, and any autoimmune disorders Annual test for sleep apnoea, otitis, respiratory problems, adenoid and hypertrophic tonsils • Vaccinations • Introduce / continue intervention programs (speech, occupational, and physiotherapies) • Social inclusion (at five years or so can begin kindergarten)

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7-12 Years • • • • • • • • • • •

Annual clinical and neuropsychiatric assessment Annual dental checkups Periodic assessment of diet and prevention of obesity Annual growth assessment Annual sight and hearing assessment Annual Orthopedic examinations Annual blood tests for thyroid disease, anemia, celiac disease, leukemia, and any autoimmune disorders Annual test for sleep apnoea, otitis, respiratory problems, adenoid and hypertrophic tonsils Assessment of sexual development and preparation of the family to cope with this Family psychological support School insertion and recreational activities

Adolescent to Early Adulthood • • • • • • • • • •

Annual clinical assessment Annual neurological and psychiatric assessment (for depression, autism, etc) Periodic assessment of dietary habits and prevention or correction of obesity Annual eye, ears, dental and orthopedic examinations Annual blood tests for thyroid disease, anemia, and any autoimmune disorders Gynecologic examination Monitor school progress Sex education is of paramount importance Encourage sports and recreational activities Evaluate the possibility of active employment and envisage possibilities of independent living • Psychological family and individual support

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• Adulthood to Old Age • Clinical assessment • Assessment of dietary habits and prevention or correction of obesity • Heart examinations (echocardiography for aortic regurgitation or mitral valve prolapsed) • Neurological and psychiatric assessments (early ageing, depression, Alzheimer’s disease and autism) • Gynecologic examinations • Annual eye, ears, dental and orthopedic examinations • Blood tests for thyroid disease, anemia, celiac disease and any autoimmune disorders • Clinical and instrumental tests for oncologic diseases. Specific vaccinations for age like Influenza, pneumococcal, etc where necessary • Programs for enhancement or maintenance of acquired abilities • Stimulate physical activities and encourage recreational activities • Offer individual psychological support • Envisage necessity of living in protected homes or community housing

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Will My Child Be Able To Do The Same Things Other Children Do? In many important ways, children with Down syndrome are similar to other children; they can play, go to school, make friends and communicate. They have the same moods and emotions, like to play and enjoy life. You can help your child by providing as many opportunities as possible for him or her to do these things. Read for your child while they are still young, play with them just as you would any other child and help them have positive experiences with new people and places. Do not segregate your child. You will not help your child by providing them with a life that is different, together with other persons with Down syndrome and separate from the rest of the people. Encourage them to face their own fears and learn from their own mistakes. If you don’t do this, you are impeding their learning to be independent. Early intervention programs will help children who have Down syndrome develop motor, language, and social skills that will give them the best chance for success.

“...Iamnodifferentfrom theotherbabies.I’vejust gotanextrachromosome.”

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Will My Child Have Learning Problems?

All children with Down syndrome have difficulty in learning, some more so than others. Intelligence ranges from slightly below normal intelligence to very low. If you can keep your child healthy and provide the therapy or treatment for their impairments, he or she will be able to learn. At birth, it isn’t possible to tell how smart a baby who has Down syndrome will be. Nowadays it is generally accepted that some children with Down syndrome can be integrated into regular schools. Experience shows that children with Down syndrome benefit more from a normal school environment and that they can make much better progress than has been previously accepted. They will however need specialized attention in whichever school or class they may be. Most children with Down syndrome are very good at learning from what they see and do. Because they have trouble remembering and thinking about too many things at once, it is often hard for them to learn from listening to the teacher for a long time. They may be much better at learning from what they can see, such as books or computers. No matter how severe their learning disability, any person with Down syndrome will benefit from basic life skills training that will help them become more self reliant. When teaching life skills remember to be patient and teach slowly, repeat the instructions more often and use verbal cues and visual aids. Whenever possible model the behavior or virtue you are trying to teach and request the student to copy your behavior. This helps the child understand better as abstract concepts are difficult for a person with Down syndrome to understand.

“Every child with DS needs to be provided with appropriate learning opportunities from a very early age so that successful inclusion can take place..........”

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What Kind Of Sex Education Is Appropriate For A Child With Down Syndrome? To be effective, sex education must ensure that the DS child’s understanding of relationships, sexual intercourse and parenting is factual, realistic and socially acceptable. Positive sexual awareness can only develop through self esteem, understanding of social relationships, and personal interaction / communication skills. All these factors influence how intimacy needs are met. It is highly recommended that age appropriate education in protective behavior should begin in child hood and be reinforced throughout the life of the person with Down syndrome. Individuals with Down syndrome must be taught the boundaries of normal physical interactions in the social sphere, as well as the self assertion skills to enlist help if necessary.

What Is My Child’s Prospects For The Future? It is not possible to predict with any accuracy what your child’s future prospects are. The range of functional ability amongst individual children with Down syndrome is very wide (as is with any child). A common mistake made by many parents is to expect too little from children with Down syndrome. Aim high and provide your child with the maximum comfortable simulation. Your child may have Down syndrome but he or she is overwhelmingly unique and must be treated as an individual. Your child strives to accomplish the same goals as everyone else: self-fulfillment, pride in achievement, inclusion in the activities of the community and the opportunity and challenge of reaching one’s full potential. Today, many children with Down syndrome worldwide go to school and enjoy many of the same activities as other kids their age. A few go to college and many transition into independent living. Still others continue to live at home but are able to hold jobs, thus finding their own success in the community. 13

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How Can We Cope With All The Challenges? Remember that you are not alone. Many other parents have shared your shock, pain, anger, disappointment and frustration. Many have found within themselves unexpected reserves of courage and faith to meet the challenge. Most parents benefit greatly by contacting other parents who share similar experiences. Remember that people tend to take your behavior, reactions and attitudes as an indication of how they should react to you. Understand that many people may feel awkward about speaking to you and will sometimes be clumsy in what they say. Correct them gently. Speak openly about your child and your friends will feel more at ease with the situation. Give your family and friends the opportunity to hold your baby and play with him or ask them to baby-sit for you if necessary. A baby with special needs requires substantial amount of time and affection and over time this may make the other siblings resentful. It is important to include them in the care of the child. Make them understand that the baby needs more attention but that does not mean that you love the other children any less. It may even help to give this manual or any other literature to your family and friends to read Finally, visit the Down Syndrome Society of Kenya and become a member. Here you will meet with other parents, specialists and teachers who will offer psychological support, training materials and other useful tips necessary for the journey ahead.

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What Is The Down Syndrome Society Of Kenya (DSSK)? Down Syndrome Society of Kenya (DSSK) is a non-profit charity organization working for the promotion of the welfare of persons born with the Down syndrome and relies on contributions from supporters, friends and members to run its programs. The Society has a national membership of over 500 individual persons and affiliate groups all over the country. The society was registered under the registrar of society’s Act in December 2003 and its chief objective is to achieve total inclusion of persons with Down syndrome into the society.

Our vision:

To be the Centre of Excellence for individuals with Down syndrome, their families and the community.

Our mission:

•To bring together persons with DS, parents and guardians, caregivers and professionals as well as individuals interested in persons with DS. •To act as a ready reference, refuge, friend and support for all such people.

Key Goals:

•To create awareness among all the sectors of the economy including: the general public, healthcare professionals and education institutions about Down syndrome and how to address it. •To offer support and assistance including: counseling, information and networking to persons with DS in Kenya and to do all within its means to promote their welfare and well being. •To become a visible and vocal advocate for the rights of persons with DS and to influence policies on the same. •To promote and encourage research into causes, manifestation and treatment of Down syndrome •To affiliate and network with local and international organizations with objects and purposes altogether or in part similar to those of the society. •To recognize the innate worth of all people and the value of diversity •To be creative and innovative in pursuit of making the greatest possible impact on the causes of poverty •To be honest and transparent, being accountable at all levels for the effectiveness of our actions and open in our judgments and communications with others DSSK’s work focus is in support and capacity building for those with Down syndrome as well as parents and care-givers of children and persons with Down syndrome. The organization also carries out programs aimed at sensitizing and creating awareness for the communities in which people with Down syndrome live.

References Frohlic, Bonjean, Champeaux, et al. The Person with Down Syndrome: Orientation for Families (Manual). European Down Syndrome Association (EDSA) Mombo, Lucy. The Principles of Managerial Leadership Applied to the Management of the Challenges Faced by Persons with Intellectual and Developmental Disabilities in Kenya Educational System (A Focus on Persons with Down Syndrome) 2009 Newton, Richard Dr. The Down’s Syndrome Handbook: A Practical Guide for Parents and Carers. London, UK: Vermilion, 2004. Rasore – Quartino, Alberto et al. Health Care Guidelines for People with Down Syndrome (Manual). European Down Syndrome Association (EDSA) Spilsbury, Louise. What Does it Mean to Have Down Syndrome. Oxford, UK: Heinemann, 2002.

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I Asked God ... I asked God to take away my pain. God said, No. It is not for me to take it away, But for you to give it up. I asked God to make my handicapped child whole. God said, No. His spirit is whole, his body is only temporary. I asked God to grant me patience. God said, No. Patience is a hyproduct of tribulations; It isn’t granted, it is learned. I asked God to give me happiness. God said, No. I give you blessings, happiness is up to you. I asked God to spare me pain. God said, No. Sufferings draws you apart from worldy cares. And brings you closer to me. I asked God to make my spirit grow. God said, No. You must grow on your own, But I will prune you to make you fruitful. I asked God for all things that I might enjoy life. God said, No. I will give you life, So that you may enjoy all things. I asked God to help me LOVE others, As much as he loves me. God said, “Ah, finally you have the idea”.

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“To the world you might be one person, but to one person you just might be the world”

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P. O. BOX 394 – 00200, NAIROBI TEL: +254 20 6761386, CELL: 0720 555 287 / 0722 527 041 EMAIL: [email protected] or [email protected]

This Project has kindly been supported by Ford Foundation, Good Neighbours Committee