When my son got his autism diagnosis, my main concern was how he would progress socially. Play dates had been fraught with anxiety on both our parts. What I imagined would be a cup of tea and a chat with a friend would become an exercise in damage control. Before he started school, I enrolled him in a variety of classes. Football was a disaster. He made up his own rules and would go into meltdown if others didn’t follow them despite the fact he hadn’t shared said rules. He went to a Summer camp where he slapped the teacher in the face for asking him to switch places with another kid, “been watching too much Dynasty; bud?”. (I can’t waste the opportunity for a good Lost Boys quote, sorry.)
We were asked to leave Karate as he was “too violent”. Hadn’t they seen Karate Kid? Some of those kids were sociopathic using illegal strikes and whatnots. I cottoned on to the fact that my son, like his fragile momma, did not like sports. I needed to tailor a class to suit him. Together with a couple of other Mammys in the same boat, we set up Ripples Ashbourne. We piggy-backed on to a successful support group on The Northside of Dublin, run by Anne Caulfield, also called Ripples. Our goal was to provide support for parents of kids with special needs and also to provide inclusive extra-curricular activities. The other mothers have run this with great aplomb. My organisational skills are shocking so I’ve probably been more of a hindrance to them.
Extra-curriculars… What would Conall be interested in?
Kids with Asperger’s typically have a special interest. Initially, Conall loved cars and would spend hours lining them up. Then he moved on to the Titanic and every conversation would be manipulated to talk about the captain (Edward J. Smith), the engineering, the chimneys (one was fake you know). Then he met the love of his life, technology and Minecraft. At the moment we’re stuck on Five Nights at Freddy’s, a game that I can’t fathom at all. He will wake up in the morning and his first words will be along the lines of “Do you know there’s a Golden Bonnie?” I have been introduced to a world of YouTubers, some of them with possibly more followers than Elvis. They have become very rich sitting on their asses narrating games. The world’s gone mad. He was watching an Irish guy called Jacksepticeye for awhile until he started swearing (shocking stuff) and saying I’m allowed cos I’m Irish. YouTube has been banned till he’s ten. Meanwhile my two-year-old is watching some woman open hundreds of Kinder Surprise eggs, is nothing sacred? They’ve managed to remove the surprise element from Kinders. (My son calls them tuntys, after Humpty Dumpty I presume. Try saying tunty and Kinder quickly, it doesn’t end well.) I googled the hell out of Minecraft and teachers in Ireland and eventually came across Computer Xplorers and the fabulous Nicola. She started inclusive classes for Ripples and has taught the kids so much. She has buckets of patience and a genuinely lovely disposition.
Conall is animated and engaged when talking about his special interest and oblivious to the boredom of others. This is a worry. He needs a lot of pragmatic speech therapy. Eye contact, interaction and reading verbal cues are all way off. His emotional regulation needs a lot of work. He is prone to major meltdowns that can frighten both of us, reducing the two of us to tears. I sometimes feel like Elliot to his E.T.
Anxiety can be a major issue for those on the spectrum. Conall can overthink things and is frightened of water, motorways, and being poisoned. I was doing the school run a few months back and had the three boys in the car. Koray was in the boot (it’s a 7 seater, I wasn’t channelling the 80’s) and he held up a container of screen wash (child locked) and asked what it was. I told him and immediately Conall asked what would happen if you drank it? I said it could seriously injure or kill you and he asked would medicine fix you? I said possibly as he seemed agitated. Later on he was in the bath and he started freaking out asking for Calpol. I immediately guessed what was wrong and told him there was no chance he got poisoned from the screen wash as it was in the boot and had the cap tightly secured. I had to give him Calpol in the end to calm him. I’m probably going to have to give up on swimming lessons. He’s been going for a couple of weeks and shares the lesson with two other kids. He will not leave the steps of the pool and had to cut the last lesson short as he had a complete panic attack when the instructor tried to carry him to a different part of the pool. His poor little face when he got home. He was apologising and saying he didn’t know why he was so scared. This is a dilemma… do I continue with lessons or quit? I haven’t fully decided yet.
Sensory issues affect kids on the spectrum also. His sense of smell is turned up to max. We were having dinner in an aunty’s house once, a chicken curry. Conall started crying because the smell was so powerful it was hurting him. He had a dilemma as he was desperately hungry. I asked my aunt, who I hadn’t seen in years for a peg and he sat and ate the dinner with a peg on his nose. She just took it in her stride and thankfully didn’t take offence. At night he tells me to cuddle him but I’ve to turn my back to him, “cos you know… your breath”. I’m not reaching for the Corsodyl yet as he says this to everyone, no really! He has no problem eating a lemon like an apple and will often crave sour or spicy food. He wears a hat with long ears so he can chew on them. His pencil case is filled with chewy pencil tops. He likes to lick people. I’ve had to appeal to his fear of germs to quell this habit as the teacher called me aside to say it was inappropriate that he was licking the boy’s arm that sat next to him. Is it wrong that I was secretly delighted that he wasn’t being aggressive? Most parents of kids with ADHD or ASD will be familiar with the international teacher’s signal for your child has been a little shit today so could you stay back and I’ll discuss it with you in a very condescending manner; It’s a raised finger and simultaneous head nod, similar to the international sign for getting the bill at a restaurant. Conall will throw me a “who knows” look and shrug it off. I was such a good kid in school and completely toed the line so this is very unfamiliar territory for me and I always feel I have to tell the teacher “but I was so good in school”, “I went to university you know, a good one!
My impression of people with Asperger’s previously was that they were slightly robotic and had no feelings of empathy. I remember a car journey to work with my friend Catherine way before diagnosis when I was crying over something Conall had done and she asked could it be Asperger’s and I said definitely not, he is so loving. And he is loving, not the same kind of loving I get from my other two who love me ferociously and competitively. “I love you Mam more than anyone else in the world, you’re mine and I’ll marry you one day”… typical Oedipal stuff. Conall is so intuitive, he knows when I’m upset or completely overwhelmed by this parenting malarkey. He’ll give me a thumbs up and a wink (his signature move) or he’ll say something completely profound like “it’s going to be a good day Mam”. He craves and needs deep pressure so big hugs are almost medicinal. He likes to be cocooned in a blanket at night. Something that was recommended to me and is great are those tight, long sleeve vests that athletes wear. He likes to wear this under his clothes as he feels like he’s getting a hug all day. The reason for all the deep pressure is that typically kids with ASD have problems with their vestibular self… this is one of our senses we take for granted and don’t fully understand (I know I don’t so forgive my ham-fisted description). It is our sense of spatial awareness and controls our movement and sense of balance. Kids on the spectrum can often feel a bit afloat and need that deep pressure for security and comfort. It’s also another reason for clumsiness. Conall will walk into a room and upend everything. He’d do well in one of those old black and white movies with Charlie Chaplin or Buster Keaton. He’ll trip and when he recovers look around in shock and say “what happened?”
TV and movies have covered the spectrum of autism from Sheldon to Rainman and while some of their traits are ASD, they are obviously quite polarised and one-dimensional for entertainment value. One of the best portrayals of a kid with Asperger’s in my opinion was Kevin in the movie Parenthood with Steve Martin in 1989. That is such a great movie, well deserving of a re-watch. Also I quite enjoyed Adam (2009). If anyone has seen Mozart and the Whale, let me know. Can I watch Josh Hartnett in a movie? Has enough time passed since Pearl Harbour, although I have forgiven the lovely Ben, so maybe.
It’s been a rocky road… kind of like walking cobblelock in heels. However with the help of teachers and family, Conall has come on in leaps and bounds. He’s in mainstream school and although he will always be a bit socially awkward (who isn’t?), he has a small group of friends, including a very loyal and admiring girlfriend. He is smart as a whip and technologically savvy. He cracks me up as no one else can and is fiercely loving and protective of me. He can be bluntly honest but that’s inherited from my Mam. He loves to start a sentence with “I don’t want to say this but… you’ve put on some weight/your breath smells ” (Just added Corsodyl to the shopping list). Yeah we go head to head, a lot but as long as there is an open line of communication, even if that’s at a high decibel all is good!
One point I’d like to address is how intensely annoying it is for people to say “he looks normal”.. Don’t say this to the parent of a special needs kid, EVER.. you have no idea of the daily challenges we go through and when you say this it belittles our struggle, it makes us think you don’t believe us, there’s that fear of Munchausen by proxy again …nuff said.
Also, please don’t say “in my day kids were a bit hyper or bold, why the need to label” Hmmm.. how do I put this nicely and not punch you in your smug, judgemental face?… In your day these kids probably needed a diagnosis and some help. I’d like some statistics on how those “hyper kids” are doing today. Possibly there were some underlying issues and not just an over-indulgence of Stinger bars.