The first professional to identify my son as Autistic was his doctor, when my son was three. And the first piece of advice he gave me about this newly discovered fact was that I should consider not having any more children because the condition was known to have a strong genetic component. I was incredibly upset of course – I’d only just found out my only child had this life-long disability which terrified me, and now I was been told that I shouldn’t try for another child.
Many months later, my son’s pediatrician would confirm the genetic aspect, but gave us some more solid statistics to work with – we were facing between a one in five to one in twelve chance to having another child with Autism. We were lucky – some families who carry a specific known genetic cause of Autism face a 50% likelihood. We decided we liked our odds – an 80% chance of having a “normal” child. Yes we were worse off than the rest of the population, where one in about 150 people have some degree of Autism, but it was still pretty good odds.
We did a lot of research and hard thinking and decided to have a second child, for a huge range of reasons, including the well-being of our existing son – a companion through his childhood, and someone who could help look out for him after we were gone. It turned out better than we ever expected – our ten month old has actually taught our five year old already! The boys adore each other, laugh a lot together, and both constantly learn off the other. It’s a beautiful thing. Plus of course it has had lots of benefits for my husband and I too – especially for our mental health. But it’s damn hard work, which isn’t surprising.
You’d think that after we’d had the second child, and it turned out not to have Autism, that people would stop having the opinion that we shouldn’t have had a second child. You’d be wrong.
There’s an organisation than provides us with funding (provided by the government but administered by them) that is used specifically to give us a couple of hours each week when we don’t have to look after our Autistic son – we’re still in the house when the carer is here with him, but we’re not hands-on the whole time having to deal with his anxieties and constant requests. It’s an important service, that helps keep us sane. We were receiving less hours than we were entitled to, according to various professionals we deal with, and I was told I had to talk to the organisation to tell them how hard things were at home, so we’d receive the funding we were entitled to receive. I was told not to play down how hard life was (which I tend to do); to just be honest.
So I was: I rang them, told them I needed more hours allocated to my son, told them how hard things were, and the reply I received was that it was my fault for having another child. I was told that I can’t legitimately complain about how hard my life is, when I made the (incorrect) decision to have another child, when I already had a special needs child on my hands. How’s that for support? I found this understandably distressing, and ended up laying a complaint. They followed through to the point that we got the extra funding we were meant to have received in the first place, so at least it turned out well in the end. But what a lot of un-necessary drama and heart-ache!
Yes it was our decision to have another child. Yes it makes our lives harder. But it also improves the quality of life for everyone in this little family of mine. It is too simplistic to tell people with special needs kids, that they shouldn’t breed anymore, and that if they do then they shouldn’t receive support since they brought it on themselves. Not just because it’s a game of statistics – there was never certainty that the next child would suffer the same. And not just because there are benefits to having siblings in the family. But also because there is a lot of joy to be had with special needs children – they are not a life-sentence of hardship and horror (even though on the bad days it feels that way!); they are always individuals with hidden talents and potential, and with enough dedication and support, they can find their place in the world and make it better for others too. It’s particularly sad when the people who are paid to support families like mine, don’t understand those simple and important truths.