Parent of a Special Needs Child

Louise StoreyMy first child Jack, came to this world against the odds, IVF baby and then born at 24 weeks. Yes and here he is strong and well.

I say well not in the lightest way. When Jack was diagnosed with autism and sensory processing disorder at age 2 and a half, I was thrown into a new world of language and thinking as well as judgment and well meaning.

I have to admit I didn't really know what autism meant and certainly had no idea what sensory processing disorder meant. So I did what I had always done, I researched the web and talked to as many medical professionals and parents / families who also had special needs children as I could. I got myself signed up to parent support blogs (which I now see don't support but fuel the problems)

At that time it was the best thing I could do.

I loved Jack with all my heart and I truly did the best I could for him, but I was flapping around in the unknown with conflicting ideas, suggestions, fixes, feeling very depressed and isolated. In the meantime as he was getting older and started pre-school, he was also wandering around in a strange world. I was so occupied with finding fixes, thinking how unfair life was for him and us, how resentful and guilty I felt, all these years I wanted a child and now I was so unhappy and depressed in this chaotic world of tantrums, screaming, shouting, isolation from other 'normal' families. My relationship with my family and husband was so tense, I was trying to control every second of someones interaction with him.

I would have weeks of depression, a blur of days, totally unconnected to the world, self loathing, drinking, blaming. Anyone who knows me, won't recognise this last sentence as being me. I was so good at putting on a face of coping, happiness and understanding. Underneath I was lost!

My little boy who was already trying to make sense of this strange world, looked so confused when I'd snap at him for not doing something that seemed so obvious to me to do. How lost and untrustful he must have felt... and no wonder, because his feelings were driven by anxious thinking. Thats what he had learned from me. How to be anxious. His challenging behaviour therefore emerged from anxious feelings. He was doing the best he could too in the circumstances.

I had expectations and plans for him, so far removed from what he could understand or comprehend, and of course when I didn't think he would meet them I was distraught and thought how on earth is he going to cope in this world when I'm not here...this terrified me. So that was then.... and I am now smiling as I read this last part.

My little boy is now 7 at a mainstream school with some teacher support.

Every year he has surpassed everyones expectations. Yes he may have to go to a different school with special needs provision at some point, and that will be fine, I'm no longer fighting what I think he should have, when and how. I absolutely know I'll know when the right time comes.

The day came when I realised that he was perfect and he was fine and he would always be fine. He doesn't need fixing.

Just knowing this now has made all the difference to our lives. I can slow down to his pace and really watch him and see whats going on in his world, I was shocked at how little I really understood his needs. When he is in a anxious mood and having challenging behaviour, I know its time to drop what I'm doing and to slow down and see where he is, give him the mental space to calm down and see for himself that there is no need to be anxious. I can't tell him the phone won't hurt him or the dryer noise won't hurt him or that dog in the park won't hurt him, believe me we've tried. He has to eventually know that for himself and with my help he might just one day trust that the phone is actually ok.

Now I'm not dragging him from pillar to post on my timeline or on anyone else's timeline... well maybe school...ah and that reminds me...

I remember the mornings of sheer panic and stress in the house, trying to get everyone in the car with hair done, school shoes on, bags packed, etc... once again I was teaching them stress and boy was I an expert at that... and no life is never perfect and we still have some mornings like that, but they are the exception now...

We have just had the most precious Summer together as a family at home and on holiday. No major tantrums or meltdowns, in fact we were so amazed at how him and his sister played so well together and bonded like we'd never seen before. The calmness in the house and our everyday lives had settled so much they were able to be calm with each other.

Don't get me wrong, there are always times of brother and sister fighting in various forms, but what I see now is a life lesson of finding their way through each others emotions in that moment and that these emotions and moods change... rather than wanting to stop the commotion, because I am tired and want quiet.

My daughter and I have a beautiful book we talk about together (What is a Thought – Jack Pransky) and when I'm in a grumpy mood she knows I'm on a cloudy route and if she's on a sunny route she will ask me if I want to join her on the sunny route... she knows my moods have nothing to do with her behaviour... and it jolts me into being more present...

I want to share my story, this is something everyone has access to. I'd like to help parents stay together and have a loving relationship with their partners and be able to fully enjoy, love, see their children growing up and be part of their education but in a more gentle and understanding trusting way that will last forever.

Louise Storey

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  • published this page in Blog 2016-09-07 23:24:41 -0400