Sometimes having a child with autism is a bit like being stuck in Groundhog Day. Here I am in another waiting room, biding my time while he receives help again. It took me back to one of my very first posts. A piece that I wrote a long time ago near the beginning of our journey whilst sitting in a similar waiting room and reflecting on our situation. It started me thinking; What if anything has changed since this point? Looking with open eyes...
This is my original post:Today I sat, once again, and waited for my son to finish his physio therapy. I spent the time flicking through a magazine but not really reading. It was simply a mask for my thoughts. Perhaps I should be glad of this time, a much needed spare moment to myself. In the past I have been. But today I felt myself wishing that I could be anywhere else in the world.
During my day dream I was watching him play football, at swimming club, at street dance or at band practice. For most children of this age their world is just beginning to open up and new social horizons are being explored. I would love for my child to experience their world; somewhere he does not feel confusion, anxiety, uncertainty and simply 'unsafe '.
Instead I bring him here in an attempt to help him understand his "busy body" then I take him home and allow him to play for too long on his computer.
What remains the same?
Our big lad still has autism. You may think this is a strange statement, given that Autism is a lifelong condition. But after diagnosis (AD) I did daydream that they'd got it wrong. Wishful thinking perhaps but this was echoed by some family members and then supported by sensationalist journalism with articles claiming a cure had been found or a child had miraculously 'grown out of' their autism at age 9 etc
The big lad is still having therapy. We still sit in waiting rooms whilst these amazing people do their best to help our son.
The big lad remains at 'normal' school. We were advised to move him to a special school but ignored this advice because we felt he was well supported and happy where he was. The special v normal school debate is a difficult and highly individual one which must be based on the needs of the child. This is something that I still worry about. I have got no doubt that we made the right choice but we need to carefully monitor the situation to make sure it remains the correct option.
We are still a happy family. The boys have a great relationship. The little man adores his big brother. I feel having a sibling has been of great benefit to the big lad's social development.
Hubby and I are still together. We had heard that a large proportion of marriages fail. At times it has been tough but we have pulled together and we make a great tag team for each other.
What has changed?
Therapy has changed. There is not as much (no physio or speech therapy) and he doesn't have it all the time, he has it when it is needed. There is more time for him just to be a child.
We have changed. When I read this post I recognise the mother who was doing her very best but who felt overwhelmed and I can feel a hint of sadness and pain in the writing. A sense of loss. But the person who wrote this around 4 years ago no longer exists. Hans Asperger called it 'Looking with open eyes'. Instead of us looking at how we can change our sons behaviour (essentially cure him) we are looking at what we can do to support him, understand him or teach him.
Asperger talked about a need for the teacher to themselves become 'Autistic'. Perhaps that can also apply to parents of autistic children as five years later hubby and I regularly ask the question; Do you think I am autistic too?
I am no longer frightened of what the future will bring. Nothing has turned out as we imagined and whilst we are realistic we are also optimistic. I am inspired by people like Temple Grandin and Steve Silberman who are looking at autism in a more positive, almost revolutionary way. Not as a problem to solve but as a group of people or a person to understand and value! A powerful message.
The big lad has changed. He has grown in confidence and developed into a funny, caring, kind, handsome, crazy, sensitive, computer loving, tenacious young boy who we are extremely proud of.
When I look through open eyes I can see that I was wrong! This isn't Groundhog Day this is Thanks Giving.
It is a time for me to give thanks for my fantastic son, amazing supportive family and the wonderful people who have all helped us to arrive at this place where our future looks so much brighter!