Last Modified: 21 October 2017, 11:05:37.

What is Down syndrome?

Down syndrome (Trisomy 21) is a disorder in which a person has an extra 21st chromosome. One in every eight hundred children has Down syndrome. Children with Down syndrome experience delays in physical and intellectual development. Their average height is often less than other children of their age. They might have a lower than average thinking ability, poor muscle tone, and joint weakness. They often crawl, stand, and walk later than many other children of their age. Just like other children, they will look like you or other members of your family. However, in addition, children with Down syndrome often have slanted eyes, a flat nose, and a small chin. They may also have a tongue that appears to stick out, a single line in their palm, and an extra space between their first and second toe. Children with the Syndrome are known to be very happy, loving, and playful. Although Down syndrome is an extra challenge that your child may have, it is important to remember that still like other children, he/she has his/her own strengths. Down syndrome cannot be cured. However, many children with Down syndrome go on to learn how to be independent in many life skills. Our job, as parents and caregivers, is to provide them with the support to do exactly that.

What causes Down syndrome?

Down syndrome is a genetic condition – this means it is something your child is born with. It is s chromosomal condition. Chromosomes are present in all cells of your body. While the normal chromosome number in all of us is 46 (23 pairs), people with Down syndrome have 47 (an extra 21st chromosome), so nothing you did or did not do as parents caused this condition. Certain blood tests done during pregnancy (Triple Marker Test) can help your doctor to suspect Down syndrome. However, it is not 100% accurate. The risks of having a baby with Down syndrome increase with the mother’s age. About 75% of children with Down syndrome, however, are born to young mothers.

What kind of therapy does my child need?

Although Down syndrome cannot be cured, the child with Down syndrome can make good progress in all areas of development with good therapy and support from you. Therapies often include Speech Therapy, Physiotherapy, Occupational Therapy, Special education, and special attention in school.

Speech Therapy: Children with Down syndrome often speak late. When they start speaking, they often seem to understand more than what they are able to express (expressive speech delays). They may also have difficulties in clarity. A speech therapist will help your child to communicate clearly and speak more fluently. Therapists often teach additional ways like signs to children with Down syndrome to help them communicate.

Physiotherapy: Children with Down syndrome have hypotonia, which means that their muscle tone is less, making them appear loose or floppy. . This affects the ability of children with Down syndrome to support themselves and acquire motor skills like crawling, standing and walking. In physiotherapy, the emphasis is on overcoming weakness and learning gross motor skills.

Occupational Therapy: An occupational therapist will help your child develop basic skills needed for daily living such as holding a toothbrush, getting dressed, feeding, etc. In addition, they help children with working on developing fine motor and visuo-perceptual skills like those needed for playing, reading and writing.
Ask your child’s doctor about what kind of treatments will help your child the most. Playing with your child can be very effective therapy as well!
Choosing the right therapist – Pick a therapist who is willing to help you work with your child at home. Remember, you are your child’s best therapist because you know her the best. Ask your child’s therapist to teach you strategies that you can use in your own home to help your child. A good therapist will recognize that children learn best through play, and your child should enjoy the therapy

What other health problems can Down syndrome cause?

Children with Down syndrome are more likely to have certain health problems. When your child is first diagnosed with Down syndrome the doctor may ask you to get some tests done to look for heart problems, thyroid problems, hearing loss and vision problems. Some tests such as the blood tests for thyroid problems may need to be done on a yearly basis. Check in with your doctor regularly. Children with Down syndrome can have problems such as low weight and poor height when they are young. They are more likely to develop obesity when they are older. However, if you make sure your child is active and eats healthy food, this can be prevented. Children with Down syndrome may also be prone to problems like constipation, and allergies, both of which can be easily treated.

What kind of school can my child attend?

Choosing the right school depends on your child’s skills, strengths, and level of need. There are two types of schools that your child can attend: regular, inclusive school (school is supportive of children with varying needs) or special school (school specifically for special needs children). Both have their pluses and minuses, but children with DS are often able to learn well in an inclusive school. Availability of an inclusive school is often a problem in India. As children with Down syndrome often have intellectual limitations, direct instruction in short periods of time along with smaller chunks of activities will help to support learning. It will help to introduce new material slowly, sequentially and in a step-by-step fashion. Encouraging your child by praising and rewarding his efforts is the best way to get her to learn.

How can I help my child?

Helping your child grow up feeling positive about herself is the most important thing that you can do as a parent to help your child. Playing and interacting with your baby, and encouraging everyone in the family to do the same, will help develop her mind and body. The most important thing to do is to make your baby feel that she has a loving family.

Sometimes the demands of your child’s medical or developmental needs may be overwhelming. It is important that you and your spouse take care of yourself. Parental depression can be a major hurdle in the development of a child. Talking to other families and making sure you take time of to do things for yourself are very important. Seek support from your family and friends. If you feel you need professional support do not hesitate to ask your doctor for a referral to a counselor or mental health professional.

© Institute of Paediatric Neurodisorder & Autism (IPNA), 2017
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