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Monday, 10 June 2013

Yes, I detest autism sometimes. So sue me!

Autism. It's an integral part of the people who have it. But it's not all of them. They are not only autism.

So why is it so frowned upon for us parents living with autism, to sometimes feel and, heaven forbid, say out loud, that sometimes, we hate autism??
I have read a couple of excellent blogs on this subject  recently so I thought I would get my tuppence worth in.

About 70% of the time, autism and I get along just fine. It's there and I am acutely aware of it, it's a bit noisier and messier than I'd like it to be and it doesn't understand as much as I would like it to, but that's fine, we can work on that. It belongs in our house, with our child and we make it welcome, we embrace it, we accept it as part of Caidan's and our lives. We work with it and we notice all the small and huge steps forward it takes and we celebrate every one!
However, that leaves 30%. Yes, about 30% of the time, I hate autism. I detest it with a passion. I wish it would leave our house and never come back. Those times when my son is in meltdown, kicking, hitting, screaming, hurting himself and unable to tell me why. I detest autism at those times. Those times when he wants to do something, like take his own jacket off and he can't, which gets him upset and frustrated. I detest autism at those times. Those times when he can't join in with other kids even though it is obvious he wants to, but he just doesn't know how to do it, and he gets frustrated and angry. I detest autism at those times. Those times when he is ill but he is unable to tell me what hurts or what is making him feel unwell, which gets him frustrated and angry and upset. I detest autism at those times. All of those times, I am unable to perform my primary function as a mother and help my child. Mainly because he either doesn't want me to or I don't know how to. That makes me detest autism too.

But let me make this clear. I detest AUTISM at those times. I do NOT detest my son. My son is so much more than just autism. It is not all he is. But it is autism that is making those times so hard for him.
No one would judge me if I said I hate my NT daughter's temper. They wouldn't think that meant I hate my daughter. But her temper is just a facet of her personality in the same way as autism is a facet of my son's.
So why shouldn't I detest autism sometimes?? Would you not detest something that makes your child frustrated and angry and upset, regularly?
Don't get me wrong, autism can be amazing and wonderful and downright awe inspiring, but it can also be painful, heartbreaking and isolating. I am blessed and truly thankful that it is 'only' autism Caidan has and that he does not have a life threatening illness, and for the most part, we are hugely positive about his autism, we embrace it, we want him to embrace it and to be proud of who he is, and we accept it. 100%. But that doesn't mean we have to love it all the time. Autism is not all rainbows and butterflies. Sometimes, autism sucks. It sucks big time. It can involve physical pain, both for Caidan and for us. It is horrible and heartbreaking to have to stand by and watch your child having a meltdown, not being able to help him or calm him, watching him kick, hit, scream and hitting his head. Most times, my husband and I still cry when it is over. It is the most helpless we have ever felt as parents. Plus, we have most likely been kicked and punched and we are hurting, both physically and emotionally.

So tell me, am I supposed to do anything else other than love my son and detest autism for what it does to him at those times? Because if I am, then I have failed as a mum.

4 comments:

  1. Beautifully written Laura xx you have captured your emotions and turned them into a poetic explanation, full to the brim with passion xx

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    1. Thank you Linda, I appreciate that x

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  2. You nailed it ! Thank you!

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