THE SPECIAL NEEDS CHILD

 

The transition from person to parent is among the most beautiful milestones. For some folks it is surrounded by pregnancy and birth complications and the outcome is a child with special needs. The special needs of this child are in the realms of medical, therapeutic, emotional, educational and vocational. Special needs children have diagnoses of ‘high risk births’, neurological disorders, cerebral palsy, autism, sensory disorders, muscle and bone disorders, mental retardation and metabolic conditions. The first few years are spent only getting the diagnosis, prognosis and treatments streamlined. While every kind of professional expert is now available in India, the process is never easy. First- no matter what the condition parents spend years looking for a cure. The professional who is honest enough to declare the condition incurable (but treatable) is promptly dropped and parents usually hunt far and wide for anybody who is non- committal about the prognosis (let’s see what happens, we can try, start this and see) or straightway promises the moon (of course, I will cure him/ her, nothing is wrong with him/ her).

Its important that parents accept the diagnosis and get to work on helping their child as soon as possible. Parents should do a thorough search and find a professional who is known to be an expert in the field. Find two- no problem. Preferably they must be from institutions of repute. Pay attention to the process of assessment- it should be thorough, unhurried and by a team of experts in particular domains. This may take some resources of time and money- but believe me- its completely worth. Once the expert/s have given you their opinion, tell them to give a clear plan for the coming years and suggest professionals nearer to your area to implement these plans. Collect all reports, prescriptions and file them properly. Upon coming back home- coordinate with a pediatrician who has time and inclination to be a ‘çase manager’ to support you and monitor outcomes. And put your head down and get to work. Connect with other parents with similar difficulties and be alert to new trends in management- take time to discuss with your pediatrician about it. Every few years you can approach the institutional expert for a review.

Bringing up a child with special needs is definitely challenging. But a lot of the challenges are similar to bringing up someone without these needs- like it’s a 24/7 job with no holidays. It has good days and bad. You have to worry about the health, safety, happiness and long term stability of your child. The major difference is that the world is not adapted to provide the special needs- so you are going to spend lot of time doing research, being an advocate of your child, spending money, worrying if you are doing right. There are all kinds of facilities- but parents you are literally left HOLDING THE BABY and the BUCK STOPS AT YOU. Your effort makes all the difference.

So while you are at it- also remember that you need to remain alive, healthy and in a mindset to be able to complete your responsibilities ably. Pay attention to your health, maintain fitness and learn stress management.