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How parents of children with Down syndrome can cope?

Being a parent of a child with Down syndrome teaches you a lot of lessons - from managing your own emotions, managing society and societal expectations, managing familial stressors and on top of all of that - managing your child to help him/her reach their true potential.

Down syndrome is a condition characterized by a set of symptoms that occur due to an abnormality in the 21st chromosome. Your child is a unique individual who will develop in their own unique way. Nobody can predict who or what your child develops into. All you should do is your very best to ensure that he/she gets the best support in the journey. 

1. Managing family, society and your child

The most important axis of your child receiving the best care is between you and your partner. Ensuring that you and your partner stay positive and encourage and help each other in the journey is very important. In society, you should be clear about the fact that you are proud of your child and not shy away. A feeling of isolation in this exercise is normal and taxing to most parents. 

2. Keep your baby stimulated

Stimulation is important, just like any other baby. Your child may not cry and seek attention as much, but it is important that you do not leave him/her alone and let them accompany you so that they stay stimulated and engaged. 

3. Encourage eye contact 

Encouraging eye contact, talking and singing. especially while feeding or playing with you helps your baby develop better. 

4. Tracking the child’s growth

Growth will be different in your child as compared to others. It is important to keep a track of important growth statistics like his/her height, weight and eating habits. Since their stature is limited, they may gain weight faster. So, it makes sense to control the child’s diet accordingly.

5. Health Checkups

It is important to visit your doctor for health checkups regularly. Special attention needs to be given to your child’s heart condition and an ECHO helps with this. Keeping track of hormones through blood tests like TSH and blood sugar is recommended and will be advised by your doctor regularly. A major checkup at 6 months and 12 months of age is very important to rule out and/or correct any birth defects. 

6. Hearing & Vision

Your child’s hearing and vision may be affected and this should be checked with tests conducted at birth, at 6 months and then every year after that. Eye tests and corrections should be done for +, - and cylindrical powers, if they develop. 

7. Intellectual ability

Your child may need accelerated or optimized learning programs which differ from the curriculum of normal schools. It is important to keep track of your child’s development and keep them stimulated so that they chive the best development possible. 

8. Neck stability

Children with Down syndrome are at risk for developing issues with the bone structures that support the neck. This is shown by multiple signs. It's important to watch out for these:

  • Change in the way he/she walks or does activities
  • Change in bowel movement
  • Tilt in the head position
  • Numb arms and legs

9. Sleep, nutrition and mental development

It is a good idea to study the child’s sleep patterns as these can cause further impairment in cognitive development if left unchecked. This is best done at the age of 4. Nutrition should be kept optimal to ensure adequate development, but no weight gain. Since your child’s needs are different, it is a good idea to consult a professional who can advise you on the right amount of calories your child needs. 

10. Infections

Since your child’s immunity may be low, it's good to catch infections early and start treatment. Watch out for common signs of infection like fever and chills. 

11. Adolescent development

As your child reaches adolescence, it becomes necessary to pay attention to the child more and guide them to make the right choices. 

Conclusion/ Treatment Plan:

While it is important to understand the special needs of your child, it is also important to maintain a positive spirit and let your child develop to the best possible extent. 

Dr. Sudhakar Pandey
Neurosciences
Meet The Doctor
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