Before my daughter was diagnosed with autism two years ago at the age of three, I hadn’t really given special needs and disability much thought. After all, that was something that affected other people. My best friend’s daughter has Down’s Syndrome, but, sadly, I don’t see her often as they live a couple of hours away. My husband’s nephew has a couple of conditions too, but other than them, I didn’t know anyone who I would have classed as having special needs or being ‘disabled’.
How wrong I was. Without being aware of it, I actually knew of quite a few people – both children and adults – who fell into this category by having conditions such as autism and ADHD. Including my own child.
Receiving a diagnosis for my daughter has changed who I am in several ways[bctt tweet=”Receiving a diagnosis for my daughter has changed who I am in several ways” via=”no”]
I am way less judgemental. I used to be that person in the supermarket. You know, the one who rolls their eyes and ‘tuts’ at the child who appears to be screaming uncontrollably while their parent seems oblivious to the upset they are causing to other shoppers. Now, I am that parent. It’s my child wreaking havoc by running through the store while I stand still, not chasing after her, because I know this is the best thing to do. I know this through experience. I know that chasing after her, shouting at her to “stop!” makes it even more fun for her, and less likely she’ll cooperate. So now, if I hear a child screaming, or see them lying on the floor immobile, or I see a parent who seems indifferent to their behaviour, I don’t jump to those conclusions anymore. Of course, it may just be a stroppy child throwing the mother of all tantrums, but it could well be a child in the midst of a real meltdown. A child who is unable to cope with the harsh lights, the incessant sounds, the smells, the strange people everywhere and who knows no other way to communicate this that to scream and cry. Perhaps his parent seems uncaring as he or she continues to push the trolley around, but they know the best thing to do is to get out. Fast. Only they have to get bread, and milk and something for tea or the whole family will go hungry. They keep their eyes front, ignoring the stares and whispers, grab what they need and get out as fast as they can. Out, to a place their child feels safe again, although it may take hours for them to truly be calm. Out, away from the judgement of those strangers who know nothing of what it’s like to have to put your child through something that makes them so anxious they may physically shut down, but you have no other option.
I am turning into Mama Bear. Pre-autism, I was the kind of person who wouldn’t say “boo” to a goose. I still am, to some extent. But, I’m learning. I’m learning that having autism in our lives means having to fight for things that really shouldn’t have to be fought for – a place in a school that meets my child’s needs and can give her a good standard of education, for example. It means having to defend your child to those who no nothing about her condition and how it affects her or makes her behave. It means trying to raise awareness and, therefore, acceptance of a neurology that is, quite simply, different, so that attitudes change and there is less battling to be done. Since autism crashed into our lives, I’m becoming less afraid of what people think, and don’t think this mama bear won’t growl if poked.
It has made me bone-achingly tired. I wouldn’t have thought it possible; I have felt ‘tired’ ever since becoming a mum almost ten years ago (before, actually, thanks to a painful pregnancy condition). But autism has meant a whole new level of tired. My tired is tired. Autism means my child’s sleep is very hit and miss. Sometimes she’s great, sleeping pretty soundly for ten or eleven hours a night. Other times she’ll wake up in the very early hours and it can take a long time to settle her back to sleep. Mostly, she’ll wake somewhere between 4 and 5.30am and that’s it for the night. Then there’s the insomnia. Mine, not hers. Years of poor, broken sleep have left me unable to sleep soundly, all night. I tend to wake at around 3am, regardless of what how my child is sleeping. Once I’m awake, autism means I struggle to go back to sleep. My mind starts to tick over, thinking and worrying about different things. How is she really doing in school? What will happen if we don’t get the special school place we need for her in time? Will she learn to read and write? Will she ever have a job? A home of her own, a family? You can see how this escalates, at three in the morning. Some of my best blog posts have been written before dawn breaks!
It’s changed the way I parent. With my eldest, I was very keen to be the very best mother I could be (and why not, right?). Even post-natal depression couldn’t stand in my way. I fed him organic, homemade food. I took him to groups and classes. I bought educational toys and games. I talked and sang to him all the time. I took him out to fun and interesting places often. Mealtimes were a family event, as mine were in my own childhood, all sitting together to eat a common meal. “No dessert unless you eat it all,” I’d say. Junk food kept to a minimum, bedtime kept to a routine, order kept in the household. And then, my daughter came along. And all those virtuous rules that had worked so well with my son flew out of the window without so much as a “see ya!” Since autism, anything goes in our house. Chocolate biscuits before school? Sure, if it means she’s not going there with an empty stomach. Dessert half way through the meal? Yep, because I know that she’s likely to continue with her dinner afterwards, but if I refuse, it’s game over. Same meals several times a week and all eating something different? Why not? She will only eat certain foods, so why fight it? It can be worked on in time. Bedtime routine? What’s that? She goes to bed when she’s ready, or else she will be up for hours. We don’t do as much or go out as often as I would like because it now depends on so many factors; her mood, how much sleep she’s had, her safety, a good adult : child ratio… She’s a mini dictator, but that’s the way it has to be at the moment, until we really figure out what we’re doing. On one hand, autism has made me more uptight as I have to have my wits about me at all times, and on the other hand I’m more laid back: “Mom, she’s eating sand again!” “Meh, at least she’s trying new textures!”
I’m sure there are many other ways in which autism has changed me. I know that I am more cautious, and yet, more relaxed. I am more outgoing, but I am more anxious. I am crushed by moments of weakness, and yet I am stronger. I hope I am a better person now that autism is a part of my life.