I’m someone who has a child who is defined in initials. ASD, GDD, SPD and so on. If you don’t know what they mean then that means your child would be termed NT – Neurotypical. My child has Austism Spectrum Disorder, Global Development Delay, Sensory Processing Disorder… and a few other bits and bobs that just can’t be defined.
He’s four and a half… but is 1/2 a centimetre shorter than his (oh so very nearly) six year old sister. He’s also 1.5kg heavier, so he’s not a small kid. He has low muscle tone which means he’s a big kid being pushed around the shops in a pram. And he screams. Oh, how he screams. You hear me coming… sometimes from metres away, sometimes from a block away. There are days where my daughter’s teacher says “Sounds like your Mummy is picking you up today!” because he’s screeched. You see, he’s non verbal. It’s not that he has no voice, it’s just he has no words… and there is a chance that he may never be able to speak.
So there he is, my gorgeous boy who is larger than half my daughters Prep class, he’s in a pram, he’s screaming in frustration and sobbing because nobody understands him… medically he’s considered to be a 16 month old, not a four and a half year old. And there I am, the Mummy just trying to keep it together, to not show I’m upset, to answer any amount of questions that may be considered rude or personal but I’m telling myself to put on my “parent of a special needs child” hat and answer politely.
And there everyone else is… muttering, whispering, approaching me in shops and saying “If that was my child then I’d slap them til they shut up.” There are moments when I can no longer be polite… probably in retaliation to the rudeness I face quite often… not that it makes it better. Those are the days where I actually say to the person in the shop “And which issue will that solve? The autism? The development delay? And where did you get your medical degree anyway?” Yes, it’s rude… but, frankly, the initial comment isn’t polite either. And so there are times when my halo slips (and it shatters with increasing regularity) and I bite back.
And you know what? I don’t have it the worst. There are Mums out there who have children that are battling for a diagnosis because they have a strange combination of issues and it’s not even something “common” like autism. There are Mums out there who are given really horrible news about their children’s life prospects. There are Mums out there who have to sign the paperwork for surgery that is just plain awful. But we do it… because we love these kids. It’s not an easy road we walk, it’s certainly not one we signed up for (the amount of times I said “I don’t care if it’s a boy or girl, as long as it’s healthy” play on my mind) but it’s one we walk because… well, because who else would?
It’s even just the basic stuff like people in shops coming up and saying “Stop your kid screaming.” “You know what? I would… but I also know that you have the option to walk away and, really, I don’t” is the reply I’ve given more than once. Oddly enough, that tends to garner me a nod and a “Fair enough, I guess I’m lucky” as a reply.
Anyway, that’s my ramble. And I am good at rambling. I’m also quite good at guessing (well, at least half the time, I could probably be registered as a psychic for that!) what my son wants at any given moment, at answering rather intrusive questions without blinking and smiling through tears. My inner Pollyanna has been well developed over the past 30 odd years (some more odd than others!) and I never realised that I was actually in training for this… being the Mum to a special needs child who needs a voice and someone to love him. I may guess at what he needs to say… but loving him is the easy bit.