Destination unknown: A parent's perspective

I remember reading a powerful article written by a parent about how it feels when it dawns on you that you have a child with special needs. She drew an analogy with taking a vacation to Paris. Before embarking on your journey you do all your homework on Paris. You learn a bit of the language, brush up on your French culture, check the weather, pack your clothes and head for the airport. But to your utter surprise the pilot announces that for some unavoidable reason the destination has changed to Oslo. You are at a complete loss as you are hopelessly unprepared. Paris here being the perfect neuro-typical child that you were expecting to have; Oslo is someone you have no idea how to deal with.

I had a reasonably healthy pregnancy and the twins came along on March 21, 1995. My son, although a little grumpy, reached his milestones a little ahead of my daughter. He knew a few words and exhibited reasonable social skills. At about 11 months of age, my husband noticed that he was losing eye contact. He also began to lose some of the above skills. We were constantly comparing him with his twin sister who was showing signs of a neuro-typical child. This is the stage I went into denial and sought solace comments like "boys are always slower than girls at this age; he will catch up you will see."

When the twins turned 15 months old it was getting increasingly difficult to engage my son in play activities. The temper tantrums were becoming more frequent and serious. He found it difficult to sleep at night. Only certain musical videos of nursery rhymes seemed to calm him. Then started the trips to doctors, specialists, and our own research. Finally, we took our son to see a neurologist in Mumbai and the verdict of autism was given.

Life took a different turn filled with confusion, panic and self-pity. It did not spare the grandparents and the extended family. Sadly, no one knew how to help. I didn't have a plan. I was learning as I was going.

In 1998 when the twins turned three I got an opportunity to work in London. Initially this was to be a two year assignment and my husband and I were naïve enough to think that our son would be cured in two years making it possible for us to move back to Bangladesh. And so my family split and I moved to London while my husband stayed back in Dhaka to look after his business. I had to split yet another family, that of my parents. My mother decided to accompany me as she realised that it would be impossible for me to settle in a foreign country juggling between a demanding job and my children.

And so began a bumpy life in London. The world of special needs opened up to us with all its intensity. There was so much to take on board, to understand how my little boy could be helped, especially with regard to the educational system and SEND (Special Educational Needs and Disability). One point that was driven home very clearly was that life was never going to be easy with an autistic child. No provisions would be offered to him simply because he deserved them based on his needs.

My aim was to be an active player in all decisions being taken for my son by the authorities. But with each passing day I realised that the only way I could do that was to educate myself on the extremely complicated system made for people with learning difficulties and disabilities. Believing strongly in the adage "knowledge is power" I engaged in various voluntary activities which gave me an insight into policies and policy makers.

Throughout the last 22 years I came into contact with various decision making bodies and experts on education, health, social services, employment and everything in between. I went through two Special Educational Needs tribunals in order to help my son get access to provisions necessary for him. This led to my son getting home based ABA (Applied Behavioural Analysis) for three years. I practically ran a school for him at home. Afterwards he attended a specialist day school where there were children of mixed special needs, which proved to be totally inappropriate for him. This led to a second tribunal as a result of which he moved to a specialist term only residential school with a 24-hour curriculum.

Thereafter, on turning 19, he attended a specialist college and moved to a residential supported living setting. While my son was transitioning to adulthood I was scouting all over the UK looking for a suitable place for him. This turned out to be yet another battle as the local authorities would put up one obstacle or another. Thus started the painful process of building up a case for my son which eventually led to him getting the placement we were looking for after all.

Working with the local council as a volunteer in various capacities gave me a stronger say in the policies. I met many parents whom I tried to help via Parent to Parent Helpline for three years with the National Autistic Society.

The council sponsored programme which I am most proud to be a part of is the Parent Champion programme. This scheme provides WAND disability cards to the person in question and allows certain privileges in public places. A WAND Card is really handy when going to stores, using public transport, amusement parks, cinemas etc. as the holder and his/her carer gets priority when waiting in lines, and saves the family from the embarrassment of having to explain the child's situation, especially when the special need is not obvious. To qualify for WAND card one has to become a member of Disabled Children's register which help local authorities make appropriate provisions for disabled people coming into the system.

I tried my best to help my son in every way that I could and that is all one can do. My son keeps learning slow and steady although he has a long way to go. We are so proud of his achievements over the years given that he has to constantly deal with so many adversities. We could not have asked for a better child, and we thank God for giving him to us.

The writer is actively involved with SEND (Special Educational Needs & Disability) in the UK and raising awareness for autism both in the UK and Bangladesh. She is a mother of a child with ASD.