It's the small things

I was reminded recently of the small ways in which parenting a child with a special needs differs from parenting a typical child – because for the most part it’s really not that different if you take away the initial shock of the diagnosis, the weekly therapies and other developmental challenges.

            But I would like this blog to act as a kind of a window into another world – a map if you will to a road less travelled (although that’s kind of an understatement because there are so many parents out there who are raising, loving and truly enjoying their children with special needs).

            But as I mentioned, I came across another small difference the other day that I wanted to share. I read a story of a mother of a child with autism in the USA who was arrested for attempting a murder-suicide (herself and her child). Now, I cannot for a minute profess to know why she did it, or even contemplate how this decision could be condoned in any way, shape or form – it’s just profoundly unacceptable.

            However, this was a woman who was an active advocate for her child, who had a massive support network in the special needs community, who was outspoken and blogged about her experiences. And yet, she got to a point where she burnt out (I have read somewhere that raising a child with profound special needs is not unlike being in combat for weeks, months and years – and that these parents can succumb to a condition that’s very much like combat fatigue).

            The point of the matter is she had enough and felt she couldn’t continue, and yet she didn’t choose to end only her own life, she wanted to end her child’s life as well… and this is where I noticed the difference.

            I have never been at a point where I wanted everything to end, not by a long shot, but I sort of understand the feeling that I cannot leave my son behind. Unlike other parents who wish and pray for their children to have long lives, and I feel that way about Harlan – I simply don’t feel that way about Malakai.

            Of course I want Malakai to have a long and fulfilling life, but I don’t ever want to leave him – I don’t want die before him. I feel totally responsible for him for the rest of his life – and in order to do that I need to outlive him. Now, whether or not I will outlive Malakai is another story altogether because I know better than anyone that life has its own ideas – but I start to breathe a little faster, my heart gets a dull ache, and I begin to worry at the thought of what will happen to my son if I am not there to care for him personally.

            There are places for people like Malakai – called ‘homes’ – but they’re not that. They cannot offer Malakai the love and attention that I can (that only a parent can). And so the thought of Malakai’s life after I die is a scary and worrisome prospect for me.

            As a parent of a child with special needs I do not wish my son a life without me. I simply don’t. Maybe I’m selfish, but I don’t think it’s that – rather I think it’s a deep question of whether a world that so happily wants to terminate babies with Down syndrome take proper care of the child I know and love and truly believe is worthy of this world and his life? If being different from the rest of the world is so undesirable then surely he’s safest in my care? And there isn’t a mother alive (of a child with special needs or not) that doesn’t burn with the desire to keep her children are safe at all times?

 

So while I don’t condone a murder-suicide on any level, I can understand how that mother was unable to leave her child behind. For whatever reason (perhaps reasons that echo my own) she couldn’t imagine her child’s life without her, and yet she couldn’t imagine her life at all.