HEALTH AND WELLNESS
Raising a child with Down syndrome
hildren with Down syndrome can be very creative, resilient, communicative, smart, funny, joyful and bring a special kind of happiness to their families. They also have their own dreams, hopes and plans. Many children with Down syndrome surprise others, including their own parents, with what they can achieve. All they need is a little extra time to get things done. Rewarding and role-playing can work like magic on a Down syndrome child. Motivation and fun can be highly effective. Find out what your child is interested in. For example, completing a maths problem may be less challenging with a picture of his favourite cartoon character on the page. Use specific, clear and positive feedback, always providing a rationale. Instead of focusing on what your child cannot do, approach the child with encouragement, exploring his or her distinctive personality and strengths. This is known as responsive teaching. Parents, care-givers and teachers should respond to the specific areas of interest and strength that the child exhibits leading to positive growth and development of the child. When the child is engaged in such a positive and encouraging feedback loop, it increases the child’s cognitive and communication skills. Being moderately directive with the child allows the child to be more responsive, expressive, and interactive.
Causes for Down syndrome It is not known why those with Down syndrome get an extra copy of chromosome 21. We are not able to establish any environmental, or other, cause for this change. Out of three types, most common one is known as trisomy 21 in which every cell in 8
NAARI - THE WOMAN
the body has three copies of chromosome 21, instead of two. Second, translocation has part of an extra chromosome 21 attached to another chromosome. Third, mosaicism, is the rarest type whereby only some cells have an extra chromosome 21. However, it is known that women over 35 have a higher chance of having a baby with Down syndrome. Moreover, there is a higher possibility of having a child with Down syndrome if you have already had a child with the syndrome.
Issues having Down syndrome Remember that each case will be different and not every individual will have serious health issues. Depending on the type of Down syndrome, there may be more, or fewer, presentations, signs and symptoms. Remember that your baby with Down syndrome is a child first and foremost. Viewing your child from the perspective of someone with special needs rather than a medical diagnosis helps in connecting with his or her common humanity. A child with Down syndrome can be challenged with several health issues ranging from vision or hearing problems, poor muscle tone, possible heart defects, hypothyroidism, certain blood disorders and also issues with the upper part of the spine. Due to their poor muscle tone, people with Down syndrome may have difficulties with feeding properly and have digestive tract issues. Many of these conditions can be treated with medication, surgery, and other interventions and therapies. In addition to the above, children with Down syndrome have intellectual and developmental disabilities. With regard to psychological issues,
children with Down syndrome may experience anxiety, depression, attention deficit hyperactive disorder, social withdrawal and, in some cases, aggression, autism or psychosis. Treatment would entail pharmacotherapy, behavioural therapy as well as an integrated and holistic approach. Some have difficulty with articulation and delayed speech due to a low muscle tone and various other factors. Speech therapists that are engaged within the first year of the child’s life can strengthen the child’s communication. Seeking the help of a developmental paediatrician who specialises in Down syndrome cases can be extremely beneficial instead of consulting a general paediatrician.
Handling a child with Down syndrome Many parents struggle with coming to terms with the fact that their child has Down syndrome. However, raising a child with Down syndrome can be an incredibly enriching journey. Despite all the challenges and struggles with the health issues, many parents of Down syndrome children feel deeply blessed to have
these children who teach them to cultivate positive qualities such as patience, positivity, acceptance and celebrate uniqueness and diversity in life. Nevertheless, according to one six-year study of individuals with Down syndrome and their families, published in the American Journal of Medical Genetics, it was found that having a family member with Down syndrome was an eye-opening and enriching experience. Siblings in the family learned to cultivate more patience and acceptance of their sibling with Down syndrome. These families were able to cultivate compassion, shared responsibility as well as a positive attitude of gratitude and cherishing life’s blessings and small victories despite their struggles. Encourage your child to communicate using devices to augment communication. There are various adaptive programs that are designed for children with special needs for their development at appropriate ages. As a parent or a primary caregiver, remember to enrol yourself in support groups. Pamper yourself to live in positive possibilities.
Nivedita is a clinical psychotherapist, hypnotherapist, founder and CEO of Inner Compass and has over 22 years of clinical experience with anxiety, panic attacks, couples issues, behavioural change issues, critical incident and helps use beliefs to shift biology through PNI techniques. https://zen-compass.com