It affects his every last little thing you can think about.
Outings can be a tough one.
Meet ups with friends, birthday parties etc. Birthday parties are my worst nightmare. First off, they are full of ‘neurologically typical’ children, the same age or younger than my son, doing waaaay more than he can. They’re full of parents, happy parents playfully ‘bragging’ to one and other about how ‘good’ their baby’s have always been, how well they’ve always slept or how ‘advanced’ they are. Then something that always come into conversations between women - labour. Urgh.. I sit back during these conversations, my son’s birth trauma still haunts me everyday, I don’t need to be talking about it to expectant mothers. Then someone will come along, and cheerfully ask, “so, how’s he doing?” I choke.. How do I answer that? Do I go into detail about his latest regressions? Tell them how excited I am that my almost 3 year old has just learnt how to point or bring his hands midline? Tell them about his recent appointments? How he’s getting on at Physio? How his cerebral palsy is affecting his leg muscles more and more every day? No.. I pause, and answer.. “Yeah he’s good”. Eventually when the party games and music starts it’s time for us to make our escape before it all triggers a meltdown. There’s a huge misunderstanding around the whole ‘meltdown’ situation, strangers in shops (oh how we hate shopping..) will stop and say things such as “oh, he’s in a bad mood isn’t he”, “typical boy, doesn’t like shopping!” Or, “someone woke up on the wrong side of the bed”. I know they aren’t intending on being malicious by their comments, so I just force a smile and carry on walking.
The thing is though - my son isn’t being naughty because he doesn’t like shopping, he isn’t just ‘playing up’ because he wants to get to the toy section (that’s actually the worst place for him!), he’s just overwhelmed. Overwhelmed by the noise, the lights, the sheer amount of people around him. It’s actually scary just how lonely you can end up feeling when you are surrounded by so many people. Eventually his cries will attract the attention of just about anyone I push his wheelchair past. They stare. Stare at him, crying and scratching at his face then they’ll divert their stares to me. The embarrassment of strangers staring and knowing that they are subconsciously judging your parenting consumes me. I quickly grab what we need and leave. Family/friends meet ups can be the worst. “Let’s go out for some tea.” Yay, a busy, noisy restaurant. Perfect place, he’ll last around 2 minutes before he blows. I’m lucky that my very close friends understand my son, some of them can even see when he’s starting to get overwhelmed now. I want nothing more than to be able to go out, enjoy dinner with friends, have a peaceful shopping trip or just to go to a children’s party and enjoy it. But the confusion between a ‘naughty child’ and children with autism always makes me think twice about it. There’s a lot more than meets the eye with my son, we’re still piecing his ‘jigsaw’ together. Next time you see a child, young person or even a adult not acting what you would consider to be ‘normal’, please try not to judge or laugh. They could have a lot more going on in their heads than you could ever imagine. Awareness means acceptance.