Saturday 21 August 2010

Acceptance of your child who has special needs usually takes time.
A few day,months or even years to finally reach the point where you stop thinking you can change them with wishes and prayers, if onlys, and even denial.
I think for J it took me a few months. This was after the official diagnosis, not the hurried one given after a very brief first meeting.
I did have a lot of the 'if onlys' and wasted my emotions on winding myself up over lots of issues that I felt I should have stopped happening (as mentioned in the post about the birth).
I can honestly say that for a long time now I have not had any thoughts of trying to turn back time, think how I could have done it differently, or torturing myself with guilt.
I even look ahead to how J may be as an old man - shuffling along, walking stick as an aid, the odd bit of hand flapping, random shouting out of "cola chips", trying to steal someones beer from their table, and watching Bear in the Big Blue House on DVD (or whatever they have invented then).

With W, J's youngest brother, I have been able to deal and accept his disability a lot easier and quicker.
My only issue really has been as to why we have been chosen to have another child with a disability, and one that is not related to J's condition.
I am sure some will assume it must be something I did or took during pregnancy. But I was tee-total (even though you are allowed small amounts), never smoked, took the pregnancy vitamin and mineral tablets, never touched drugs (legal or illegal, apart from paracetamol which is allowed) and didn't have x rays or any procedures like that.
Because of J, I am set up, prepared and ready to fight for W's rights to make his life amazing, enriched, fulfilling, and never second best.

With W's disability there is so much still to learn and as there is no cure, just like J's autism, the future could bring about amazing new discoveries which could make the symptoms far less, or even bring about a cure.
For W a cure would mean his eyes would stop moving uncontrollably and his sight would become clear and more far reaching.
For J it would mean a whole new world opening up for him.
Quite how J and other autistic people would deal with being cured I do not know. A scene from the Robin Williams film Awakenings always makes me cry. The bit where the drug he has discovered brings the awake but comatose patients out of their silence and into the regular world.
Would J suddenly chat away to me, telling me of what it was like for him to be locked in his own little world? Would he be freaked out by the new sensations and experiences of emotions?
All I do know is this - scientists are always trying to solve illnesses and disabilities, and one day they will either find a cure or a way to prevent it.

For now I am happy to accept J for what and who he is. Yes he is hard work. Yes it is frustrating trying to navigate the endless dead ends and obstacles put up by local authorities. Yes I do worry for his future.
But, I do not wish his life away hoping on a cure.