Thursday, 21 March 2019

No, this won't pass.. why parenting my autistic kids is different


Sometimes people say things that mean well. I recently wrote a post about how parents need time to themselves. Parenting can be overwhelming and exhausting in many ways and I need a little (often just a tiny) space to express myself to stay sane.  Many of my readers agreed.  Some added their support, saying "this will pass" but of course the reality for us is that it probably won't.

Being a parent does not pass. I'll be my mother's daughter till the day I die. She will influence me for the rest of my life. I still call her, particularly if I'm upset when she is my first port of call.  But it's true that she doesn't need to parent me the same way she did 30 years ago.

I no longer need teaching right from wrong, I don't need a curfew (unless it's self imposed of course), I don't need to be told to stay in bed, to be taught how to tell the time or tie my shoe laces.  I don't need my Dad to help with my long division or teach me how to iron shirts properly - though I still rely on his DIY skills on a fairly regular basis.

This is how most people picture it right? You teach your kids what they need to know as they grow up.

Because I learned right from wrong before I hit teenage years (just), I understand about coming home, that being in bed means it's time for sleep at 10pm and I tied my shoe laces when I was five. I now help my eldest do his long division and although I don't like it, I can iron my husbands shirts (in record breaking time) usually whilst watching an episode of Grey's Anatomy.

But what if this isn't the case? What if your kid may never acquire these skills? What if you'll be teaching your kid to tie their shoelaces forever.  What if your child will never learn that being in bed means going to sleep? What if they never get the basic concept of time never mind being able to tell it? And what about things like being able to shop for themselves, clean themselves or even feed themselves?

Then this parenting stage may not just "pass".  This may mean I'm doing and feeling things for far longer than most would think "normal", and possibly for the rest of my life... or for as long as I'm able.

It's already apparent that I won't be able to do everything for as long as I live.  A simple example is that I still carry eight year old David around sometimes when he needs it, but that's having an impact on my health.. and he's only going to get bigger.  All of Anthony's class mates walk to travel to school by themselves.  It's not even nearly safe for him to do it.

Autism certainly will not "pass". And I wouldn't want it to.  It is an integral part of who my boys are and I love the whole of them.  But it means some things aren't like the traditional parenting stages in our lives.

Sleepless nights have been in our lives for ten years... not likely to pass any time soon.
Dealing with meltdowns has been happening for seven years ... not likely to pass any time soon.
One of my son's is pre-verbal.. and although he's getting closer to using words he could just be like the 25% of autistic people who are non-verbal so that's... not likely to pass any time soon either.

Perhaps though what has passed is the despair I've felt over certain situations.  The heart ache I've had watching my son have a meltdown or the exasperation as health services don't match up and it's my boys that suffer the consequences. Don't even get me started on their education.

Though I fear these situations will be replaced by others, each scenario that I work my guts out to fix, if it eventually turns out OK, gives me hope for another.  And that's constantly being added to - thankfully.  For some additional needs parents it's not the case.

I suppose at least I can hope that other things too will not "pass";  the joy David holds in a single moment; the way he says 'I love you';  the pride I have in both his and Anthony's efforts to get through tasks, events and days.

The truth is, that if in 20 years, I still have the privilege of tying my son's shoes to enable us to go somewhere we like and we enjoy our time together, then that is time well spent. It's just probably not the future many parents see.

7 comments:

  1. This kind of links to what I posted on my Facebook page last night... I used to think about this a lot more a few years ago, but as time goes on I've just learnt to accept that there is no point thinking about the future too much. Yes, we may have our autistic daughter always living with us, or certainly not far from us if she ever is able to move out, but I like to think of the positives about that now :) It's all a roller coaster ride though. Hang on xx

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    1. Roller coaster for sure. Hanging on with both hands and feet ;-) Thanks for commenting Steph.

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  2. I want to echo Steph's comments, as it really does alter our understanding and what we take from our children's achievements - I love the last line on this post the most, so poignant x

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  3. What a beautiful post. There is so much hope in it while acknowledging that the level of intervention it takes to get our kids up and about and to a specific place on time is, and will continue to be, extreme. Xx

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  4. It also highlights how little others understand our situation. It hurts more when people make comments like 'it will pass' 'they will grow out of it'. It reminds me how people really don't understand autism. #spectrumsunday

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  5. This blog is really great. The information here will surely be of some help to me. Thanks!. Toddlers

    ReplyDelete

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