We got told on Anthony's diagnosis day that it was nothing we did wrong, there was no cure and it's likely genetic which means if we had anymore kids they could also be on the autistic spectrum. If it is genetic then there could be a definitive test for it one day. If that day had been eight years ago I might not have my beautiful kids.
There is often mention of ASD being one of the invisible disabilities. True if you see my kids in a photo you might not tell that two of them are on the autistic spectrum but there is little doubt if you see them operating in life that they are different. Life with them is not the same as life with neurotypical kids, but that doesn't mean that it's not life and a great one at that. We have highs and lows just like everyone else. We have joys and sorrows but just because it's different to how it was expected doesn't mean it's not good.
There always seems a pressure on families to live a perfect life. But even that seems to have become stereotyped if you let it. Look up perfect in the dictionary and it doesn't say 'life living in an expensive house, with a big car, expensive toys and two kids performing excellently at school.' It's not that I enjoy the fact that my kids struggle with things like busy places, school and sensory overloads. And we do try to change some behaviours that hurt or make it difficult to function. But actually perfect means 'complete'. Well my life is totally complete with my family and that includes it's autistic elements as much as our family wide brown eyes, my husbands irritating sense of humour and my occasional bad temper.
What's life if it's not living with and loving one another. I can't imagine how empty it might have been if I'd had a 'test'. As our second son, David is also in the autistic spectrum, I suppose it's possible we wouldn't have had kids at all with a genetic test or prenatal screening available. If society had only shown me some of the difficulties we would have with my children or that they would have, instead of the joy. I may have had a 'career' instead although it was only after having kids that I realised I liked teaching.
If the same society was just a bit more accepting of our neurodiversity, a test may only have been about preparing for our kids. Having all those autism training courses whilst pregnant maybe?
I remember being relieved when our Down's Syndrome test came back as a low probability. I don't honestly know how I would have reacted had it been different. Or how I would have reacted had there been a screening for autism.
They say that once you have kids, you can't imagine life without them. Now I have the experience I feel my life would have been incomplete without them, autism and all. If only society was just a bit more accepting of them and us being complete too.
There is often mention of ASD being one of the invisible disabilities. True if you see my kids in a photo you might not tell that two of them are on the autistic spectrum but there is little doubt if you see them operating in life that they are different. Life with them is not the same as life with neurotypical kids, but that doesn't mean that it's not life and a great one at that. We have highs and lows just like everyone else. We have joys and sorrows but just because it's different to how it was expected doesn't mean it's not good.
There always seems a pressure on families to live a perfect life. But even that seems to have become stereotyped if you let it. Look up perfect in the dictionary and it doesn't say 'life living in an expensive house, with a big car, expensive toys and two kids performing excellently at school.' It's not that I enjoy the fact that my kids struggle with things like busy places, school and sensory overloads. And we do try to change some behaviours that hurt or make it difficult to function. But actually perfect means 'complete'. Well my life is totally complete with my family and that includes it's autistic elements as much as our family wide brown eyes, my husbands irritating sense of humour and my occasional bad temper.
What's life if it's not living with and loving one another. I can't imagine how empty it might have been if I'd had a 'test'. As our second son, David is also in the autistic spectrum, I suppose it's possible we wouldn't have had kids at all with a genetic test or prenatal screening available. If society had only shown me some of the difficulties we would have with my children or that they would have, instead of the joy. I may have had a 'career' instead although it was only after having kids that I realised I liked teaching.
If the same society was just a bit more accepting of our neurodiversity, a test may only have been about preparing for our kids. Having all those autism training courses whilst pregnant maybe?
I remember being relieved when our Down's Syndrome test came back as a low probability. I don't honestly know how I would have reacted had it been different. Or how I would have reacted had there been a screening for autism.
They say that once you have kids, you can't imagine life without them. Now I have the experience I feel my life would have been incomplete without them, autism and all. If only society was just a bit more accepting of them and us being complete too.
A really interesting thought. And I am not sure what my answer would be. Before kids, and before diagnosis, I would have been all for every type of pregnancy testing. But I honestly can't say 100% if it would have affected how I felt about my pregnancy. That really frightens me and makes me wonder whether my attitude to other tests is as it should be. Really thought provoking. Thanks.
ReplyDeleteI think there's more in my head on this, but this seemed to at least be the opening of discussion. Thanks for reading... And thinking too
DeleteA really interesting thought. And I am not sure what my answer would be. Before kids, and before diagnosis, I would have been all for every type of pregnancy testing. But I honestly can't say 100% if it would have affected how I felt about my pregnancy. That really frightens me and makes me wonder whether my attitude to other tests is as it should be. Really thought provoking. Thanks.
ReplyDeleteBeautifully put. I can't imagine what it's like to have children with autism but my kids have overexcitabilities (one severely) which impact our lives to a considerable extent. My experience of parenting has turned out quite different from what I might have fantasised about, but (most days!) I wouldn't change a thing.
ReplyDeleteIndeed. I'd never heard of overexcitabities but now have your posts down to visit. You might like http://rainbowsaretoobeautiful.blogspot.com/2015/11/how-autism-is-like-new-courtesy-car.html about how our parenting just isn't quite what was expected but that's not a bad thing. Thanks for your comments xxx
DeleteThis is lovely. Whatever the situation, whatever the challenges, I think every parent would absolutely agree. Thanks for linking this up to #coolmumclub lovely x
ReplyDeleteTalya - http://www.motherhoodtherealdeal.com
Lovely post. I'm an older mother (3rd time round) and I was offered screening for Downs which I declined because the baby would be wanted and loved no matter what. My son has autism and despite the daily challenges, I wouldn't change anything. I'm fairly sure I'm well on the spectrum myself so I'm already equipped to help my son because I understand him. As you say, the only issue is with society and it's ignorance. #SpectrumSunday
ReplyDeleteI guess we weren't put off, we did after all have two other kids after the first one! Love them all xxx
DeleteI don't think I could ever make that choice. But I just don't know. If I was told my child could have downs syndrome I don't know whether I could go through the further tests to find out more and force myself into making a decision. If similar tests were there for autism would I feel the same. Yes probably. I didn't understand autism until it hit me in the face with full force so I would have been making a very uneducated decision. Whilst I would take some of the more challenging parts of autism away. I couldn't imagine my life without Hayden. And too many people struggle to have children, I would feel selfish for choosing whether or not to continue growing that little life because of possible future difficulties. I am waffling now I know! Sorry. I'm glad I was never given the option lets put it that way :) Thank you for joining me on #spectrumsunday lovely. Hope to see you again this week xx
ReplyDeleteThank you for linking up this important post. I do think we are headed in this direction and people will begin to view ASD differently and the fear will rise and soon anyone who is any different will really have to fight to justify their existence.
ReplyDelete#TeamT21