Stories From the Heart: My Very Special Need

Imran, better known as Imi is my wonderful 21 year old son.  He also happens to be Autistic.   He also happens to be plenty of other things too, smart, funny, cheeky and delightful…..although sometimes he can also try the patience of a saint…!  I am reluctant to label him as my Autistic son, because Autism does not define him, he is a tapestry of many things and titles, as are we all.

Firstly I cannot comprehend that I have a 21 year old child, in my heart I am not even 16! He arrived in this world on an October morning and the sun shone every time I looked at him.  He was absolute perfection in my eyes and I could not glance away from him in case I missed an expression, a sneeze or a yawn.

For the first year he was pretty much strapped on to my body most of the time and that was comforting for both of us.  Somebody told me shortly after Imi’s birth that the world would not exist for the first 6 months, but I can tell you it was a year before I read a newspaper or listened to any current events, the aliens could have landed and taken over and I would have been oblivious.

Life was quite idyllic, I was fortunate enough to be a stay at home mom and I truly valued every moment. Imi passed all the milestones, and until 18 months there was not a flicker or trace that there was anything wrong, neither by us, or any professional that he came into contact with. He began to babble and we felt that speech was round the corner.  When it did not come we entered the secret world of Special Needs.  It is not really visible but when you search it out – it can overwhelm you.

Our life took on a different beat to the one we had imagined.  As parents we visualise all the milestones that our children will pass and as each milestone  slowly slides away from your fingertips, a different feeling emerges, one of grieving, a loss, but you are really grieving for yourself, the parent you wanted to be.  The child has not lost anything, the child does not know that you were looking forward to taking him to his first party – but he enjoyed playing with the swing doors more than with the other children.

He will never understand the pain it caused when he was being oblivious to you when you returned home from a long trip, and he was more interested in the toy car or a paper clip, never smiling at you spontaneously, never really showing pleasure or need.

These are all needs within us that we deem make us good parents, but they are really conditions.  The most beautiful thing about having a child with Autism is that you learn the meaning of unconditional love.

A whole new language emerged in our vocabulary, Speech Therapists, Educational Psychologists, Psychiatrists, Behavioural Therapist. Most of our new words and job titles ended with therapist. Auditory Integration Therapy, Stem Cell Therapy, Hyperbaric Therapy even Hormone Therapy (Secretin),- a weird and wonderful cocktail of words and promises of a better future for you and your child… the truth is that there is only one therapy guaranteed of a result – and it is plain and simple LOVE.

In all his twenty years, I truly believe that each therapy has a well deserved place in Imi’s improvement and enhancement but the one thing that has truly made a difference is one on one therapy. This can be achieved in any situation, with the parents, teachers, therapists, siblings, friends, and even chatting to a stranger at a bus stop or in a restaurant.  The concentration of one human being on another human being, listening to every word and inflection of sound and most importantly eye contact and expression can only be successfully achieved one on one.

When Imi was four, I began to fear my child and doubt myself believing that “professionals” knew best.  Then suddenly during one of those moments of darkness, I had an epiphany, I realised that no one, however well qualified could know my child better than me.

With that nugget of strength we moved on in leaps and bounds, Imi felt my inner confidence and began to progress. The confidence that brings is reflected in the child, Imi could no longer sense my insecurity so he began to flourish. I realised that I was the expert on Imi and the best that the professionals could do was assist, advise and facilitate his progress with my guidance.

Imi said “Mommy” for the first time at 4 years old.  He is now 21 years old, a verbal, kind, mischievous, routine led, funny, happy and sometimes complicated young man. He is also one of the most humorous, interesting and unusual people that you would have the good fortune to meet.

The biggest part of his story is not the Autism but Epilepsy, at 14 he was struck down with his first seizure and unhappily for us, it was very serious and life threatening, he  was in intensive care for 5 days and has been on a selection of anti seizure drugs ever since.  I have often wondered what lesson God was trying to teach us about this. Recently I found my answer.

Living with a child who is so utterly innocent and so vulnerable means that we are very mindful (as a family) to be very respectful of Imi and his wishes.  Every moment with him is something that we try to cherish and we all hold him gently in the palm of our hands and hearts because we are very lucky for every moment we have with him.  Our wake up call happens every time he has a seizure and because of him we have learnt to appreciate and value the goodness that he has instilled in our hearts.

To sum Imi up would be: impossible, each new day brings a new gift, a new reason to smile, new hope that the future will have as many possibilities for him as it does for his two brothers.

Please look further than the inappropriate behaviours that our children sometimes display.  Surely it is our differences which make us interesting and worth knowing.

By Sev Mawany

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.

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