DOWN SYNDROME 102: CHANGING THE NARRATIVE

By Sejoro Tonuewa

Having a child with down syndrome can take a toll on a family, in most cases, the mother who is usually the primary caregiver bears most it. It can be draining, both mentally and financially. Inadequate education about the condition makes it worse!
People with the syndrome may have mild symptoms, allowing them to attend and graduate from schools, hold down jobs and be active participants in the society. Others, however, who have other health problems including but not limited to: congenital heart diseases, thyroid dysfunctions, gastrointestinal issues, respiratory problems, hearing and visual defects, as well as some cancers, often require lifelong care and help in carrying out normal life issues.

The manifestations of the syndrome may be devastating. However, with the right approach coupled with advances in science and technology and a better understanding of the syndrome, people with down syndrome can indeed live fulfilling and rewarding lives. This is exemplified by Paul Pineda an actor, educator and the first European with down syndrome to obtain a university degree; Angela Bachiller, a Spanish Politician; Jamie Brewer, an actress, Collette Divitto, an entrepreneur and a host of others.

There is no known cure for the syndrome. Therapy and appropriate care are the way to go. The first step is early detection. Nowadays, it is possible to screen for the syndrome during pregnancy. Various screening tests are available for this and are done at different stages of pregnancy. This helps to prepare parents beforehand.

After birth, it is also important to screen for common problems which could include:

• Screening for congenital heart diseases as this occurs in about 40-50% cases and may require a surgical procedure for correction
• Periodic thyroid function test
• Periodic visual and auditory examinations
• Monitoring for sleep apnea
  Screening for gastroesophageal reflux, difficulties swallowing, coeliac diseases
• Periodic teeth checks
• Test for cognitive functions

It is important to note that early intervention is paramount and may make a large difference in the life of the child. The child may also require therapy for speech as well as for developing other motor skills. Such therapies include physical therapy, language and even occupational therapies. They may require adjustments in learning curriculum and special attention must be paid to them during learning. Alternative learning options such as the use of pictures, objects etc can be adopted.

As a parent, the following are ways you can support yourself and child with down syndrome:

• Healthy lifestyle: Taking care of your health as well as that of your child is important. Eat right, exercise appropriately and learn to manage stress
• Keep learning about the disease and seek help: It is impossible to know all there is to know about the syndrome at once. So keep learning, ask the right people for help.
• Build the right team and support system: It is important to have the right people on board. Depending on your child’s peculiar needs, paediatric specialists in various fields such as cardiology, endocrinology, neurology, ear, nose and throat etc. could make up your team. Also, speech therapists, occupational therapists, and physiotherapists may be required. It may be comforting to link up and join support groups with members who have children with down syndrome. Furthermore, involve willing family members and friends in the care of the child to ease the burden on yourself. Talk about your challenges and seek help when you need it.
• Have leisure activities: Have personal time for yourself. Go out with friends, plan outings. Also, engage your child in social and leisure activities.
• Encourage independence: With practice, your child can carry out some tasks independently. Encourage them to pick their clothes, dress up, pack their lunch etc. Create a daily routine for your child and help them to prepare for adulthood.

Down syndrome is a chromosomal dysfunctional over which no one has influence. One can only make the best of the circumstance. In spite of down syndrome, one can live a fulfilling life, find love and feel great. Changing the narrative of gloom, pity and disability associated with down syndrome is the responsibility of everyone. Be a part of it.