Strength

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.

In relation to the questions, I am not an expert in autism but I am trying to be an expert in my son. I don’t have all the answers and I don’t believe the professionals do either. Despite me posting more and more about autism, you may find it hard to believe that autism does not take over my life. I try to read what I believe is relevant to us and not let it engulf us, despite it being possible. My views around the causes, are my own beliefs and I accept that other people will have different opinions. As it stands, there has been no proven cause of autism that has been documented. There have been various theories presented and I suppose a little like religion, you have to put your faith in something that you cannot see but you have most allegiance with. For now, I am happy to go with a genetic connection and whether that is solely from me, Joseph’s Dad or a combination of both our genes, I’m not sure. It is hard for someone like me not to have a full explanation but I’m learning to live with that each day. I was asked why autism appears to be on the increase; is it though? Or is it just that we have become better at diagnosing the condition and the child behaving a little different in the class no longer has the generic label of ‘learning difficulties’?
I work full time and it’s often difficult to combine that with being a parent, let alone a parent of child with special needs. Not only do I have additional appointments and meetings to attend but more time needs to be devoted to homework and developing social skills. I have a paid job that I conduct during office hours but my career is my unpaid role. I carefully considered this role before taking it on and although I feel like I applied under false pretences, it will be the one that I am sure will give me an incredible amount of fulfilment. I have spoken openly and honestly recently about my views on motherhood versus a career and know that my views will have bra burners letting out a gasp.

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?

Each day can vary so much in our home and without any trigger or warning. We can have really good days and days that I want to write off and sometimes that takes it toll. School holidays can be particularly testing for all parents, trying to find plenty of activities to keep the children occupied. I know that when I reach the point of saying “Enough”, it’s time for a break and shut off from the every day pressures that we all face. That break for me is coming this week and I will look forward to a couple of days alone, hopefully surrounded by peace and tranquility. I’m lucky enough that there are people around who are supportive of me and although it’s selfish, it’s a skill I’ve learned over the last few years and I won’t offer an apology for that.

I have been told that I am a strong and powerful parent but do not underestimate the power of any parent. We are ALL strong, but there are times that some of us need to exercise that inner strength more than others. Strength for me, comes from those I surround myself with.

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