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My Spectrum Journey

My Spectrum Journey

Eating Lemons, Screen Wash and Big Hugs

March 26, 2015
Michael Emerson

You need sunglasses to talk on the phone?

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.

The Americans

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.

Stinger BarAlso, 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.

My Spectrum Journey

Asperger’s, It Isn’t A Label, It’s A Diagnosis

March 23, 2015
sperger's Syndrome

Conall’s pushed one of the twins in the river.

This was the sentence that began our journey into the world of autism. He was four, had just started school and had always been a handful and a bit prone to tantrums and aggression. To give a complete history, he was born full term, not a pleasant birth, vacuum, episiotomy, the complete spa treatment. He scored 10/10 on his Apgar score but cried nonstop in the hospital. He took two weeks to latch on to feed, they even had breast feeding experts visit my bedside in the hospital and pincer grip my nipples. He was my first child and I assumed I was spoiling him. I was told I held him too much… how does anyone have the emotional strength to separate themselves from their beautiful, sweet-smelling (most of the time) baby? My Mam blamed breast feeding. She didn’t come out and say it but she was deeply suspicious of the whole business and if someone’s child acted up she’d often ask “was he breastfed?” and if the answer was yes, she’d look knowingly at me. Conall was slow to talk, over 3 and his first word was light, followed by “there you are”. When he found his feet, he had a tendency to wander which brings us back to that river. I had just returned from a scan on my 3rd baby and Conall had been really well behaved in the hospital with me so I allowed him out with his friends, the twins from next door. He had persuaded them to walk up to the river which is a about ten houses away from our house. He told one of them to throw some rubbish in the river and when he refused Conall said he’d push him in if he didn’t. He refused again and my son pushed him in. Thankfully the water was low that day but the boy had a gash on his head where he hit a rock. I was shocked to my core,  I knew he could be stubborn and aggressive and was prone to major meltdowns but to act maliciously (and litter!) was unconscionable to me. I called next door to apologise but the house was in uproar and I left. I sobbed for hours and I met with his teacher the next day. She probably thought I was a hormonal mess but agreed that something wasn’t right. My neighbour called and we both had a cry. She was amazingly kind and sympathetic and as a mother of 5 confirmed what the teacher had said.

iStock_000015719845SmallI made an appointment with our GP and listed all my concerns. I had always harboured a feeling that he had ADHD but the doctor was the first to suggest Asperger’s and refer us on. Strangely the first person I thought of with Asperger’s was a contestant on America’s Next Top Model years previously who seemed robotic and spoke in a monotone. When I got home I googled the bejaysus out of that word and had so many lightbulb moments. I decided to go see a child psychiatrist privately to get an official diagnosis. We met with the doctor quickly enough and it was a nerve-racking experience. He was a middle aged man who immediately put me on edge. I felt as if I had Munchausen by proxy and was just exaggerating “typical boy behaviour”. Conall of course behaved impeccably in his office causing the doctor’s well-coiffed eyebrows to ascend a little further. He suggested Conall was a little young for a diagnosis and to come back in six months. He did however comment on Conall’s lack of eye contact which oddly I hadn’t noticed prior to it being pointed out. We felt really deflated (emotionally and financially) and endured another six months of erratic behaviour. When we returned the doctor suggested my husband take our son out for a walk so we could talk privately. Conall didn’t want to go so I suggested my husband take him to the shop for “something nice.” When they left, pompous pants said you shouldn’t have to bribe your child. I was immediately on the back foot and felt like a shite mother. He started to ask if I spent time with my son. I said as much as possible considering at this time I had two other boys under two. He asked “but are you on your phone when you’re with him or are you with-with him?” Of course I lied and said with-with him, definitely not on facebook or checking the clearance in Argos. He asked was my husband a “hands-on Dad”? He suggested a parenting class. By this stage I was blinking back tears and a complete wreck. Before a diagnosis he wanted me to see a psychologist and do a parenting class and possibly remortgage my home. I left there reeling, I felt like I’d spent time with an emotional vampire. My husband was furious, but like the polite Irish/Turkish citizens that we are, we gave over another briefcase of cash. I bawled all the way home in the car, torn between rage and despair.

After that I got proactive!

Anyone else out there who has a child with Asperger’s that would be interested in meeting for a chat?” This was the plea I posted on a local Facebook page. Slowly responses pinged in my private messages over the next few days… It was great to meet with mothers who were beginning on their spectrum journey or were further down the road; individuals to chat with and learn from..  In the meantime the public services were dragging their feet and Conall still didn’t have a diagnosis.  A professor and an expert in this field was recommended to me and I rang up and got an appointment pretty quickly. I didn’t know what to expect and was apprehensive after my last shrink appointment. I was put at ease straight away as there wasn’t an imposing oak desk between us and he seemed genial in a gentle college professor way. He fired a tonne of questions at me as Conall sat drawing. They required only simple yes or no answers. I answered yes to every question except “Does he spin?” At which point Conall looked up and quite calmly said “no I don’t” (he does).

Éamon de Valera

Éamon De Valera may have been autistic.

The diagnosis was no surprise… Asperger’s, ADHD and Oppositional Defiance Disorder. The professor removed his academic hat for a few minutes to explain how some of the world’s most successful people have Asperger’s and gave the example of De Valera. I was relieved to have an official diagnosis (as was my wallet €300 lighter) It’s amazing how many people ask “are you sure you want to label your child?” My response is, “it isn’t a label, it’s a diagnosis“. I was relieved to have a label; On a selfish note it meant I wasn’t a crappy mother who couldn’t discipline her own child and my son was not a brat but a kid full of anger and anxiety due to the fact that his brain wasn’t functioning in the same manner as a neurotypical child. I’m awash with guilt as I type this and memories of my frustration and anger at an aggressive and defiant toddler surface. It’s tough when it’s your first child and you haven’t a clue what you’re doing anyway but like anything it’s a case of taking each day as it comes and trying to do the best for your child. It’s too long and boring to go into the short-comings of the public services. You need only to be a member of one of the many autism support groups on Facebook to understand that this is the norm. It would be nice for someone to sit us both down and ask what we’d like or need? I was so excited to get into the system as I thought so much would be done but I’m beyond relying on the public health system now. For Conall, psychology is having an open dialogue with me. I ask him every day what his high and his low was and try to glean his mindset from his answers. For someone with not much emotional regulation, he can certainly keep his inner feelings in a vault but “chats” at night can sometimes let me gain some insight. I worry about him when he hits puberty but I will always be open about his diagnosis as I feel it is something he will need to embrace as early as possible and indeed celebrate. Occupational therapy is done through wearing tight vests, lots of  hugs, swimming lessons, hip hop dancing and just running around the house like a mad fecker, occasionally dropping to the floor for a few press-ups. Speech and language is dealt with by fostering friendships, school, and extracurricular activities. There should be no stigma attached to Asperger’s or for any kid on the spectrum. Before I had Conall, I would judge tantruming kids and their parents with no thought for any underlying issue bar the need of a good wallop. My hope for this post and the next is to make you think next time you see a harangued parent struggle in Tesco. Also talk to your kids about inclusion in school and at play, there is heartbreak in watching your kid stand alone talking to himself in the school yard. Put on a bit of John Lennon’s Imagine there while you ponder these things, it was playing instrumentally in my mind as I typed the last paragraph, makes it more powerful.

In my next post I will explain in more detail our personal journey with the idiosyncrasies of Asperger’s. I’ll talk briefly about the negatives but more importantly, I’d like to highlight all the positives, and there are many that a child with Asperger’s brings.

It is a good few months since I wrote this and I had something to add. I recently told a friend on a night out that I thought her grown son had Aspergers. I struggled with this disclosure for a long time but she seemed relieved and said she’s look into it. Since then he came to me to thank me for telling his Mam as he now attends a support group and having a name for his perceived differences has helped him greatly. I have watched him, flourish and if I do nothing else good with my life I’m happy! It proves the point that a diagnosis is key and he in turn has promised to give me insight into teenage and adult years with Aspergers. You know who you are and I wish you nothing but happiness.