Over the last week, I have been asked a number of questions around autism from a variety of friends and I was pleased that my openness had allowed those questions to be posed. There would have been a time that I felt it uncomfortable to discuss autism unless it was on my terms. I’m not ready for opening up a 24 hour hotline but there certainly has been a shift in what I am now prepared to speak about. This was emphasised further on Saturday when it was World Autism Awareness Day. I recall the first time I mentioned the word ‘autism’ on my Facebook status a few years ago on the exact same day.
Some of you may have wondered as to why I would be posting about autism and possibly even wanted to ask me, but too polite to probe further. Some of you may have even chosen to disregard it because as a society we don’t like to acknowledge that there may be imperfections in life. I didn’t want to tell people about Joseph’s diagnosis because I feared people would judge me and him. You’re no longer part of the Mum’s Club but part of a new club; a parent of a child with special needs. Of course, I didn’t want Joseph to be treated differently and neither did I. It’s only as the healing process has taken shape, that I do not feel afraid to hold my hand up and say “My child has autism” and not only do I not feel afraid, I want to say it because I am proud of our achievements, in spite of his autism. This should not be confused with me saying that I am glad he has autism, as I certainly am not. I no longer feel that I am being judged and not sure whether I ever was and will tell people when it is appropriate to do so. I don’t wear it as a badge of honour but I’m certainly not ashamed. I now realise that there are times when he needs to be treated differently and that no longer is a problem.
I take a huge amount of pride in the job that I do and have a reasonably high standard of work (some may disagree!!) but I can’t and don’t want to work a ridiculous amount of hours each day with a salary to match. My personal wealth comes from what I am repaid when I see Joseph developing; his improvement in spelling and reading cannot be converted to monetary value. That will be my career for the foreseeable future and I will continue to juggle both roles as best as I possibly can. At present, I think I have got the balance as best as I can; work time, Joseph time, family time, me time (and that’s not in an order of importance either).
I have watched the second episode of The A Word, a little later once again and find it has been portrayed with sensitivity and accuracy but still difficult to watch, mainly because it feels like someone is recording our everyday lives. I am that parent who stops to watch their child in the playground. I am the parent who is pained inside when their child is playing on the cusp of everyone else’s activity, whilst he is oblivious to what is going on. My son is the one who behaves in a repetitious manner taking pleasure from the same video clips over and over and over again until I’m ready to combust. I am the controlling parent who wants everyone to do it my way, because my way is right isn’t it?