Tuesday, 17 May 2011

A Magic Pill?

We've reached a point where A is changing again. All kids go through these phases, where they are physically, mentally, socially stretching. Outgrowing toys past and developing their sense of self and of others around them. I see it in the children of my friends and I read about it online when other bloggers ponder these changes.

Perhaps I note these changes more perceptibly than my friends because when you have a child with ASD, these changes bring with them new obstacles. My experience of what little support parents are given post-diagnosis is that you can access a bit of help, support and counselling during that interim period but then you're on your own. I didn't find the post-diagnosis period as stressful as I do now. This might sound odd to any parent who is in that post diagnosis period but compared to the stage A is at now, there is a wealth of information, support groups, resources to tap into at that stage. For where he is now, there really isn't a lot out there to help you through the period of 8-12 years. Educationally, this is a crucial period and it is particularly challenging or ASD kids. It's a point where other kids are maturing at an advanced rate, readying themselves for high school and for the increased contact with the outside world that they will experience during high school. These points of change make A's differences more perceivable. It reminds you that he will always lag behind his peers in every aspect. As a parent this lag isn't really that worrying at five where kids are maturing at different rates anyway. At eight, it's not a big deal as you are there to support and assist them at every turn. At 10, when they are not yet ready to be given a huge amount of independence, it's not that worrying yet. At 12 however, their peers are travelling at times by themselves, being allowed to visit friends by themselves. This leads to a progression that culminates in them, at 18 being able to come and go as they please. This natural progression happens unthinkingly most of the time and sometimes even unnoticed by parents until a few years later when you realise that your kids don't need you anymore. I've been wondering how to approach this stage when you are raising a kid whose independence will come much later than his peers, if at all. Within our family, it really is only myself and Oh Daddy who know how much we support A through his daily life.

We adopted this parenting policy unconsciously and I am wondering if we have done the right thing. We cover up the things he cannot do and emphasise the wonderful things he does and can do. At the same time we are strict with him and check that he isn't becoming lazy or neglectful of himself. We secretly push him to be like his peers but out with the house, make very little of those things that he is yet to achieve. We cover up the fact that although his 12th birthday is imminent, he cannot tie his shoelaces. He cannot ride a bike. He cannot dress himself appropriately. He doesn't understand money. He can't remember to remove his underwear before putting a new set on. There are tonnes of little things that we compensate for and we're now at a junction were these little things will become obvious to others. The move from a small class in primary school to s huge year full of kids at high school will throw up and reveal these things. We are still waiting to hear what support he has been given for S1 and so this all looks a bit daunting at the minute. Things like getting changed for PE are a nightmare, he cannot organise himself properly and will do things like wear his school shoes because he has forgotten that for the last seven years his gym shoes are in his gym bag, where they have always been. I'm hoping that we can tackle some of these things in the run up to high school but am slightly pessimistic about him achieving these things in time.

So I thought I would try reaching out to online ASD communities for parents of kids on the spectrum who might have already gone through this. I haven't fully competed my search for advice because during my first experience of dipping my toe into the pool of ASD forums I found an interesting question that stopped me in my tracks. A question that divides the community of ASD parents down the middle, evoking passionate responses from both sides. Now, given my capacity for over thinking every element of parenting, can you imagine what this has done to my head?

The question is this: if you could give your child a pill that would make their autism disappear, would you?

The split in the community is due to in part how parents view their child's disability and to how severe the kids are. I wasn't surprised to find that the majority of parents who said no were parents of aspergers kids. In my experience with aspies kids and please feel free to correct me if you disagree, aspergers is a huge part of their personality. Aspergers brings with it lots of little facets that contribute to the whole person. That without this the kids would be someone completely different. I feel that with kids with AS, this isn't the case and I don't view AS as a part of A's personality. Perhaps this is why I am so stressed and wound up by it. I've really thought hard about how I view AS in conjunction with A's development over the year and A's personality and it seems to me that the two are at odds. The only time we have cause to raise his AS is when it prevents him doing something, when it holds him back from living a NT life. It is not who he is. So I would give him this. The hardest part of being his Mum is watching as other kids pass him by, as opportunities pass him by because his autism holds him back. You want your kids to live a life without obstacles, without pain or suffering and our reality is that this is what AS brings him.


  1. I can't imagine how you feel, I really can't. I have no sage advice, no words of wisdom, and with a 9 month old baby I have no clue of what you're going through at all.
    But just keep being the amazing mum you obviously are.
    And keep blogging too - comments have been thin on the ground for me recently too. xx

  2. Of course- who could blame you? It sounds mega-tough. Interesting to hear about how Asperger's is linked so much to the personality so the parent's would say no.
    I feel that I know a helluva lot more about Autism and Asperger's than I previously did (blogs and ANTM!) and am slowly understanding the differences in kids social interactions slightly more. If other people understand autism more and their kids will, it will be easier for everyone. ie a kid may be trying to be friendly but I read autistic kids don't like to be touched so wouldn't appreciate a pat on the back or would avoid eye contact with people they don't know well and don't understand humour or sarcasm as well as others and don't really know how to finish a conversation so it's useful to know this for someone who will be in his class. WRT high school - Does he feel as nervous as you or not really thinking about it yet? Perhaps he could have a buddy in his PE class that could remind him to take out his shoes? I hope that the ASD community answer your questions.
    Echoing DummyMummy - definitely keep blogging! it's hard to keep up with so many blogs especially if posts are long x

  3. @DummyMummy: Thanks Anna. That means a lot coming from you. xx

  4. @ Maria: Thank you so much for taking the time to comment. We're feeling nervous as his current classmates make concessions for him and understand to the best of their knowledge why he is different. He has a part time classroom assistant who makes sure he does these things like getting dressed for PE but when she's not there, it stresses out the PE teacher.
    I haven't looked at the communities since posting this but must revisit them soon or perhaps post this there.

    Thanks again and I'm looking forward to reading your blog later. xxxx


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