World Down syndrome Day 2022: Caring for Children with Down syndrome

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What is Down syndrome?

Down syndrome is a genetic condition, also called Trisomy 21. Genetically, children inherit 46 chromosomes (threadlike structures that carry hereditary information) from their parents – 23 from their father and 23 from their mother. But Down syndrome occurs when a child has extra chromosomes making it a total of 47 chromosomes. The extra chromosome is associated with delays in the child’s mental and physical development, as well as an increased risk for health problems.

No one has an idea why this Down syndrome occurs, it happens by chance, can’t be prevented, and isn’t caused by anything a parent did or didn’t do. Fortunately, the health problems can be managed well, especially when found early, and many resources are available to help kids and their families.

Common Features of Down syndrome

Children with Down syndrome share physical features with other children with Down syndrome, but they also look like their family members.

All children with Down syndrome have some intellectual disability. It can range from quite mild to more severe. It means some delay in development and some learning difficulties.

People with Down syndrome might also have a range of medical and health conditions, so it’s important to have your child’s health checked regularly by health professionals.

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How Does Down syndrome affect Kids?

For those that are familiar with this condition, kids with Down syndrome do have similar physical characteristics, such as a flat facial profile, an upward slant to the eyes, small ears, and a tongue that tends to stick out. At birth, babies with Down syndrome are often smaller than other newborns, and they tend to grow at a slower rate and remain shorter than their peers. Toddlers and older kids may have delays in speech and self-care skills like feeding, dressing, and using the toilet.

Children will reach developmental milestones, like sitting up, crawling, and walking, though typically later than other kids do. Down syndrome affects kids’ ability to learn in different ways, and most have mild to moderate intellectual disability. Kids can and do learn, and they can develop skills throughout their lives. They just reach goals at a different pace. So it is important to remember that each child with Down syndrome will gain skills in their own time and to not compare them to their typical peers or even kids with the same condition.

Kids with Down syndrome have a wide range of abilities, and there’s no way to tell at birth what they can do as they grow up.

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Other medical conditions children with Down syndrome face:

Not all kids with Down syndrome have serious health problems. But there are others that may have medical conditions that need extra care. Many go to clinics that specialize in caring for people with Down syndrome. If you don’t have a Down syndrome clinic in your area, your primary care doctor can help coordinate care for your child.

  • Almost half of all children born with Down syndrome will have a congenital heart defect.
  • About half of all kids also have problems with hearing and vision. Hearing loss can be related to fluid buildup in the inner ear or to structural problems of the ear itself.
  • Vision problems commonly include strabismus (eyes do not track together), nearsightedness or farsightedness, and cataracts.
  • Vision and hearing problems can affect language and learning. Regular checkups by an otolaryngologist (ear, nose, and throat doctor), audiologist, and an ophthalmologist can find and manage any problems.

Other medical conditions include Seizures, stomach & intestinal problems, asthma, sleep apnea, and obesity.

How Can Parents Help?

Having a child with Down syndrome can set a parent on the path of worry and denial. But rather than having to treat your child like an aberration, it will be helpful talking to other parents of kids with Down syndrome. This will help you deal with your concerns, find ways to look toward the future, and learn as much as you can about the condition while your fear eases.

As said earlier, you can expect delays in their major milestones – like walking, talking, and crawling. But just as it is with any other child, your love and stimulation are the most important influences on your child’s development. Children learn the most from the people who care for them and with whom they spend most of their time, so everyday play and communication with you can help your child a lot.

Children with Down syndrome benefit from getting early intervention services as soon as possible. Physical therapy, occupational therapy, and speech/feeding therapy can help, and early childhood educators can work with your child to encourage and boost development.

One other hard decision is where to send your child to school. The needs of children with Down syndrome are best met in specialized programs like the Individualized Education Program (IEP). However, there are kids with Down syndrome who go to typical schools and enjoy the same activities as other kids their age. Being in a regular classroom (known as inclusion), when appropriate, is good for both the child with Down syndrome and the other kids.

An example of such a school is Marigold Special School (With Boarding), Alagbado, Lagos. The school provides education and therapy for special needs children and young adults with dyslexia, ADHD, cerebral palsy, autism, Down syndrome, non-verbal kids, mental and learning disabilities.

A few kids with Down syndrome go on to universities. Many transitions to semi-independent living or even get married. Others continue to live at home but hold jobs and find their own success in the community. As with all children, raising a child can be very rewarding, but also very challenging. Check into strong support groups and early intervention services around you.

 

Sources:

Down syndrome (for parents), Down syndrome in children, Caring for a child with Down syndrome.

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