Friday, 8 November 2013

Back to the Future

When I was thirteen, I remember it being the start of my rebellious phase. My mum would spend far too much time in school, discussing where I was going wrong with the Headmaster, only to watch me slip further and further away from her protective grasp. I could use the 'wrong crowd' excuse, or I could just come clean and say I was insolent, but however my mum coped back then, I've realised since being the parent of a teenager, that she did remarkably well. She had my older brother and younger sister to deal with also; the former going through his exams and not caring if he passed or failed, whilst the latter being... well... the youngest. Those middle children will understand why I need say no more.

I was very mature for my age, streetwise and advanced in my thinking. I asserted myself where boys were concerned and was never backward in coming forward. I think it was simply being a curious teen, one whose parent had tried hard to shield from harm but had maybe pushed their child into discovering for themselves why boys, sex and relationships was a taboo subject. This was the 1980s. My parents were old-fashioned, but they were the best. I know that now.

These days, however, boys, sex and relationships is not a taboo subject. Parents are expected and encouraged to talk to their kids about it from an early age, mainly because the school curriculum forces the subject on young children anyway. If we parents shied away from it, wouldn't that leave our children curious as to why? Therefore, I have been open with Amy and even though I do admit to being quite prudish, I don't brush the delicate conversations surrounding sex under the carpet.

But then, ten years ago, my life changed. I didn't realise back then just how much it had changed. I had this three year old child, a few months from being four, whom I knew had a condition. When I read the letter to confirm it was autism, I simply hole-punched it and filed it in a red folder. That letter was my gateway to support.

Amy will be fourteen in January. She is most definitely, in many ways, a typical teenager. She reminds me of a mixture between Kevin and Perry, and Lauren Cooper. But these are TV fictional characters; they don't have autism, they just have raging hormones. Yesterday I cried. I don't normally cry because of Amy's autism. But recently she's been having a few issues at school, issues surrounding, I am assuming, growing up. She is finding herself, making discoveries about how far she can go, what she can get away with when speaking to teachers. Naturally, me being me, I am now in the throws of getting to the bottom of these issues for I am not the type of parent who lets things go, just like my own mum wasn't thirty-one years ago when I was Amy's age. I know Amy better than anyone. But that isn't to say I know what she needs. I learn each and every day, and what I am currently learning is that by filing that confirmation letter away ten years ago, I didn't think about Amy's future and what the term 'autism' would mean once she hit her teens. I was just grateful for the diagnosis because I knew it meant access to the appropriate support.

In four years time Amy will be an adult. In between that time I have to help her through exams and prepare her for adulthood. Of course, the school help tremendously, I rarely have a bad word to say about them, but they can't be there twenty-four hours a day. They don't know Amy like I do. What life has in store for an autistic person is very, very different than what it has in store for a neuro-typical person. You think it's hard for young adults to find work? Imagine what it's like for a young adult with autism to find work, one who can't cope in social situations, finds it impossible to speak to strangers, worries about transition, change and independence. Even today, in these times of anti-discrimination acts, so many employers will not entertain even interviewing a person with a condition such as autism.

And I cried because I finally came to realise, after reading some particularly useful information in an autism magazine, that it is possible my three year old who was diagnosed with autism, will never become an adult in our general society. She may never experience independence like I have; she may never find love, like I have; she may need me, or someone, to support her emotionally and financially for the rest of her life.

How many times I have brushed these thoughts under the carpet I cannot say. But what I can say is that I am no longer that parent who files letters away and thinks just about the here and now. Ten years ago, being a teenager and four years away from being an adult seemed like a lifetime ago. It isn't. And I need to be ready. I imagine I will cry many times again, but I will never cry in front of my daughter. She has enough to deal with in her life.

8 comments:

  1. For someone who has a 4 year old with autism, as you know, this is a hard, but good read. At this moment in time, all we know about Caidan is that he is regarded as being fairly high functioning. That does not mean all in the garden is rosy, but it means, we have absolutely no idea at this stage whether he will be able to live an independent life or not. I have to admit, because of that, I try and not even think about the future. Maybe I should. But then, there is not much I can do by worrying. This is what we face with our children. We even have to worry about whether we should be worrying or not!!! I never had this with my NT daughter!! It was a given she was going to grow up and live an independent life. Yes, I worry about her of course, the normal parental things, but NOTHING like the pressure and worry and helplessness that I feel with Caidan. So whilst every parent worries, I can tell you having had the pleasure of seeing it from both sides, the worry that comes with an autistic child is a far heavier burden than with an NT child. No question!

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  2. Comment by Fiona:-
    Sometime I'm going to take you for a coffee and introduce you to a chap with autism who lives up your way. His parents moved there in a time when kids like ours were *put away* or regarded as simple. They found a village community for him where he intergrated well, he's lived there now his whole life and works there too at the local golf club. For his 50th birthday the entire village clubbed together to buy him a present! Everyone watches out for him and checks on him. This is special I know but things can turn out well.
    As for hormones. ..tell me about it both of mine are awful!

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  3. Great post. The future seems so scary for our kids. Amy is very lucky to have you to support and nurture her. Yes, things will be tough but with love, Amy will find her place in the adult world. I spend a lot of time worrying about what the future holds for my daughter. The teenage years are full of new challenges. So glad that I have got the support of lots of lovely friends such as yourself. x

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  4. Being a parent is a difficult job without the problems of bringing up a child with a disability, good luck. xx

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  5. This post really moved me. I wish I had something to say other than you're doing a great job, you are an incredible parent and I really hope that Amy finds her way in this world, a way to independence.

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  6. My daughter & I are going through the same kind of thing with Rick, who seems to have slipped through the net at 17 and doesn't seem to fit in anywhere. His mother has been left very much on her own with him and he seems to enjoy living like a hermit without much help, either practical or financial.
    You are a wonderful support to Amy and I really hope that she can find a niche somewhere in the world and I keep hoping for the same for Rick too.
    Who knows what is round the corner. I find it best to take one day at a time and hope for the best.
    Maggie x

    Nuts in May

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  7. I love your raw honesty in this post CJ. Parenting is hard, full stop, especially parenting a teenager (I have one the same age as Amy) but I cannot imagine the added stresses and strains of having a teenager with autism. Some days I feel like crying with exasperation and that's just the usual stuff but I take my hat off to you, it must be doubly tough your end. You sound like a fabulous and perfect Mum for Amy, keep on keeping on. x

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  8. Hi CJ this is a really moving and honest post. The future can feel really scary, but you and Amy are really lucky to have each other - you are an AMAZING mum, and she a beautiful and amazing daughter xxx

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