Every parent of an autistic child has, at least once, been on the receiving end of judgemental comments and I think, over time, we all develop a thick skin and some choice responses to those. They don’t hurt any less but we don’t waste time crying over them anymore. No, the comments that bring us to our knees are the sweet, well-meaning ones, the ones from family and friends who are trying to understand, help and support us but just don’t quite ‘get’ it! Those compliments that, to us, just don’t feel like compliments but more like a reminder that we live a different type of reality to them.
“I don’t know how you cope, I could never do what you do” – really, like there’s an option? What do you expect me to do, send him back for a refund??? We cope because we have to, there’s very little help or support out there for autism families as the “criteria” state they aren’t disabled “enough”. So, we soldier on and we cope and do you know what, if you had a child like mine you’d do exactly the same – we weren’t created/born any differently to you, we haven’t had any special training, there is no “How To Be An Exceptional Parent” book that is only given out to the parents of Special Needs children – we’ve muddled through, made mistakes, learnt through trial and error and accepted a ‘new normal’ for our lives.
“It must be so hard, you’re doing an amazing job” – my answer to number 1 also applies here but I’d also add a “No shit, Sherlock” to it – yes it’s hard, we’ve had to completely change our expectations and our view of normal but until you pointed out how hard it must be I’d almost been able to forget that my life isn’t the same as yours! See, that’s what I mean about our ‘new normal’ – it IS normal to us, we don’t think about the fact that nine times out of ten we’re only reasonably functioning human beings thanks to caffeine…..lots and lots of caffeine, we’ve forgotten what it’s like to fall asleep before midnight and wake barely two hours later – it’s amazing how little sleep your body can become accustomed to, it’s become second nature to only leave the house during school hours (school being the only ‘respite’ most of us get).
“It’s great that he can speak” – yes, I get your point but there’s a difference between your version of verbal and ours. He has a vast vocabulary – hell, at four he could explain in great detail about how Doctor Who’s regenerations worked and the name “Raxacoricofallapitorious” rolled off his tongue like your four year old saying “Teletubbies” but hold a reciprocal conversation? Tell me what he’s done at school? Explain how he’s feeling? Then no, in those important ways he’s NOT verbal and have you ever tried watching a film with a child who has to pick apart, examine and question EVERY SINGLE SCENE? Let’s just say cinema visits are now a no-no unless gags are made socially acceptable!
Trust me there are loads more I could bore you with but it’s half-term here and I’ve been summoned for a conversation about Minecraft – this won’t be an actual conversation as you’d recognise it though, it will consist of Whirlwind repeating the names of the Pokemon in his world and listing the attributes and powers of each one, variety may be added with little snippets about when Dan TDM, Stampy or GMob played a similar world – aren’t you just a teeny bit jealous of my exciting life? No? Not just a little bit? Oh, ok then – catch you later Amazons xx