Can I tell you a secret?… It’s a really big one. I’m not proud of it.
The thing is, I’ve been breaking some rules lately. In fact I’ve been breaking all the rules. If there was a judge and a jury for the rules, I would be put away for a very long time. I’ve been a terrible autism mum.
There are a few unspoken no-no’s about having a child with ASD. The first and most important rule, is that you never EVER wish your child was different. Because your child is special, regardless of any additional needs they may have. No matter what, you never wish your child was different. In fact, they need even more love and understanding than most, and if they can’t get that from their parents, then what hope is there? What kind of parent does that.
Well, me. I’ve broken this rule. I’ve looked at the Pickle this week, and I’ve cried tears of selfish and miserable sadness, like the world has fallen apart and can never be fixed. I looked at him, and I wished that he was different. That he was ‘normal’. I’ve wished that I could just have a conversation with him. That he would turn around when I called his name, react like he cared when I scold him, come to me for a cuddle, tell me what he likes, what he doesn’t like, tell me that he loves me. I’ve wished that he wouldn’t make those weird noises and dribble all over his hands and face because he’s stimming. I’ve wished he would stop opening and shutting doors over and over until he breaks them. I’ve wished he didn’t have that rash all over his face from stimming, or still wear nappies at 3 and a half years old. I’ve wished that when I spoke to him, he would look me in the eye and give me a coherent answer. I’ve wished that I could send him to school next year without being terrified what will happen to him. That I could take him out for the day without suffering huge anxiety because I’m so scared of what would happen if he ever got lost. I sometimes have panic attacks in crowded places with him, and we have to go home.
It gets worse… I’ve also broken another massive rule…
I’ve become jealous of other people and their lives. I’ve wanted their life, more than I’ve wanted my own. I’ve felt cheated. I’ve felt angry with other parents when they tell me their worries about their own children. I’ve felt isolated in a room full of people, because they hear me, but they don’t understand. I’ve looked at their children, and I’ve silently grieved for what they are, for what my Pickle will never be. For the mother that I thought I would be and the life I assumed I’d have. I’ve distanced and isolated myself from good friends, because being around them and their lives, just makes me feel sad about my own.
And now I’ve broken a third, very important rule. I’ve admitted it. For goodness sake autism mums! If you feel this way, don’t ever admit it! Act like you’re strong, even when you’re not. Well now I’ve gone and done the opposite of everything I am supposed to do, and I will be judged for it. I know I’m letting my son and my family down, and I’m genuinely sorry to everyone who’s relying on me, for being so weak, most of all, my beautiful, unique little boy. But I am wise enough also, to know that this sadness won’t last. I will again, reach a point where things will start to look up, when I can feel the joy of the small of the small and wonderful steps and progress that the Pickle makes. When I can feel empowered and start feeling strong about life again. Like I felt when I told everyone about his diagnosis and I said I would never ever change him. But for now, I’m a terrible autism mum.