This is a piece I’ve been debating writing for a long time, given the ongoing interest in the Ontario Autism Program. It’s been a tough decision for me, weighing the need for advocacy, to secure a better future for kids on the spectrum versus the desire to keep our kids’ private lives, well, private. I ended up deciding the need for advocacy is greater, though I’m still not sure I’m making the right decision. I’m sure social media will be all too happy to tell me I’m not. Oh well. One thing you’re forced to accept as the parent of a child on the spectrum is having complete strangers tell you how awful you are and that you’re doing everything wrong.
Before I get to the meat of the post, I need to post a whole bunch of caveats.
- If you’ve met one child on the spectrum, you’ve met one child on the spectrum. As such, it’s impossible to generalize their experience or that of their parents.
- This is simply my perspective. My kids and my spouse are certain to have different ones. Speaking of which, I feel pretty guilty at all the attention I get, as a guy with a significant social media following. My wife, Hannah, does the real heavy lifting around the house, so whatever credit we receive as parents (deserved or otherwise) should go to her, not to me. That is until the boy becomes a champion dodgeball player. Then you can credit my brilliant coaching. Until then, credit Hannah.
- Speaking of the kids: They’re absolutely amazing, and this should be their story; I’m just a supporting actor. My girl, 8, is funny, perspective, has a big heart and can name almost as many Pokemon as I can. We have the best time together telling stories, making up silly songs and playing Nintendo. My boy, 4, has a smile that can light up a room and has the best laugh. He’s both strong as a bull and the sweetest kid you’ll ever meet. He’s already a better athlete than Dad. They’re fantastic people and the last thing I want to do is change them. Instead, I want to give them the tools they need to survive and thrive in a world that isn’t designed for them.
Parenting as a video game
The best way I can describe my experiences as a parent of kids on the spectrum is that it’s like playing a video game on hard. Really hard. It’s like the Turbo Tunnel level on Battletoads:
As you’ll see below, my experiences really aren’t that different in type than what most parents go through, it’s just a matter of degree. Parents will be able to relate to pretty much everything I describe below. But the difficulty is ramped up, making the lows lower and the highs higher.
But continuing with the video game theme, I also need to recognize the extreme privilege I have. It’s as if I am absolutely overflowing with power-ups. My wife and I both have six-figure jobs, we both have Ph.D.s from one of the best business schools in Canada, if not the world, I co-own a very successful company that I founded back in 2005, we’re well connected and we have phenomenal parents who have helped us tremendously. There may not be another set of parents in Ontario that are as well-positioned to meet the challenges we’re meeting. Again, I feel guilty at the attention we get, as when it comes to parents of kids on the spectrum, we’re probably the last people you should worry about.
That said, we’re still playing the game on hard, and we struggle. If we’re struggling, you can only imagine what other parents are going through!
The girl has come such a long way over the last few years. Her challenges revolve around anxiety, speech delays, a stammer and generally struggles with speech (including selective mutism) and both gross and fine motor delays. Through a lot of hard work (by her) and significant investments (by us), she’s making real strides.
The boy has more significant challenges. At 18-months he lost all of his words, and at 4 is non-verbal. Like many kids on the spectrum, he has no sense of danger, and requires constant supervision. He’s both a climber and a runner, which is particularly problematic given how athletic he is. Turn your back on him for a second, and you’ll find him on top of an 8-foot tall bookshelf or halfway down the block. Like many four-year-old boys (and this 42-year-old man) he rarely sits still — he’s constant movement. He pulls anything and everything down from shelves and tables, another common behaviour, so we constantly have to be on guard for anything dangerous, and it makes it difficult for us to take him some places. He’s also got pica, so he’ll try to eat almost anything, which naturally makes him sick. This is compounded by his pain tolerance, which is off the charts, so something has to be really wrong before he’ll indicate discomfort.
Also, he doesn’t believe in sleep, a common trait among kids on the spectrum (and one he shares with me). With the help of ABA (applied behaviour analysis) he’s learned to communicate through a handful of signs and his sleep is improving.
But all of this came at a significant cost, in both money and time.
The Financial Challenges
The boy is in ABA for 30 hours a week, at a cost of $55/hr. Over 50 weeks a year, this costs $82,500. With the other services we need to help the kids overcome their challenges, we’re out of pocket about $90,000 every year, to pay for what is essentially healthcare for our kids.
Keep in mind, if you’re going to pay for this out of income (or savings), you need to pay for these services in after-tax dollars. In order to not to take a hit to your standard of living, you’d have to earn an extra $140,000-$180,000 a year in income to break even. That’s $90,000 to pay for the healthcare bills for your children, plus an extra $50,000 in income taxes that you have to pay the government, just for the privilege of earning the money to pay for your kid’s healthcare.
There are some tax credits you’d be eligible for, but they’re relatively modest, and they often result in a fight with the CRA. Last year my combined federal and provincial tax credits reduced by combined federal/provincial income tax bill by less than 4%.
Having to scrape that kind of money together isn’t easy, and many families without kids on the spectrum have to do it too (say, a family with a child on a competitive touring hockey team). Here’s how we did it:
- Both Hannah and I work two jobs. I’m an Asst. Prof at Ivey and a Senior Director at the Smart Prosperity Institute. It’s a lot of work and it means I’m on the road a lot, given the two are in different cities.
- Hannah works for the federal government but also runs an AirBnB out of our basement suite, which we’re fortunate enough to own. But don’t let that good fortune fool you, it’s a lot of work for her. Between her two jobs and my two jobs, plus raising two kids with significant needs, we don’t get to spend much time together.
- From time to time I’ve been pulling out significant sums of money that I’ve previously loaned the company I co-own, which I hate to do since the company could really use that money to expand.
- I sold my Jeep for $17,000 and we’ve dropped down to one car. Honestly, this is one of the best decisions I’ve made in a long time, as we’ve managed with one car better than I thought we would.
- Finally, we’ve received a substantial amount of support from family members. I really wish it hadn’t come to that. It’s an ongoing source of guilt for me.
With all that, we’ve been able to pay the roughly $7000/mth ABA bills. The boy is doing well in ABA, though he does not enjoy the daily 35-minute each way commutes to the centre where he receives his healthcare.
The Social Isolation
Taking the kids out anywhere requires ignoring comments made by complete strangers. “Why is she flapping like that?” “Isn’t he too old for a stroller?” “You should get that soother out of his mouth, he’s not a baby”. And on and on and on. I try to ignore it as best I can, I really do. But after a while, it just weighs on you. There’s this constant message that “your kids don’t belong here” or as Doug Ford once suggested, that they shouldn’t be leaving the house.
It’s also hard to visit friends, as their houses simply aren’t set up to handle someone as physical as the boy, and it’s hard to find a sitter that’s trained to assist the kids with their challenges (and we love spending time with the kids, so we’d rather they be with us). As such, we almost never visit friends. It’s a bit isolating. Okay, it’s a lot isolating. We do have one set of friends with a trampoline, which ended up being game-changing.
The Sleep Deprivation
At the ages of 2 and 3, the boy didn’t sleep. At all. This is relatively common with kids on the spectrum, but unless you’ve lived it, you have no idea how difficult it is. Keep in mind, we can’t just simply put him back to bed; remember, he’s a climber and a jumper. Hannah and I take shifts with him, with her taking the late nights and me the early mornings, since I’m a morning person. One thing I discovered is that he’d relax if he was in a jogging stroller, so you’d often find me at 3am running up and down the Rideau Canal path.
This is when I discovered why sleep deprivation is considered a war crime. I spent those years in a complete daze. I would literally start hallucinating, never quite sure what I was experiencing was real or in my head. I’ve always been someone that has taken pride in my work and I have to admit my output over the past few years has been subpar, in both quality and quantity. Again, this is something that is experienced by all parents at some level, particularly with newborns, but this was a whole other level.
With the help of a sleep consultant, we started to make some progress. Over time, we learned a few tricks. A bath before bed. Significant doses of melatonin. A weighted blanket. I’d love to be able to read to him before bed, but it doesn’t work — it either excites him or causes him to wander off. I’ve found if I show him a video on the iPad, it helps. But it can’t be something he likes too much (like a kids’ show) or else it gets him too excited. But it can’t be something he finds too boring (like baseball… sigh) or else he’ll just ignore it and wander off. I’ve found hockey works well, particularly older hockey games (I think he finds the slower pace easier to follow), so we’ll watch old playoff games from the 70s. He also really likes Hogan’s Heroes, for some reason, so we usually watch that.
The big game changer for us was visiting friends that own a trampoline. He literally spent three hours on it, then slept through the night for the first time in a year. The very next day we went out and ordered one of our own. It was a life-saver. We have him out there as much as possible — he sleeps so much better with exercise.
It’s far from a solved problem; we still have a lot of late nights and early mornings. But it’s much better than it was and the extra sleep has done wonders for his ability to learn and engage with the world.
The Continued Fight for our Kids
The Ontario Autism Program dispute has been largely framed as a policy dispute — the government’s reforms versus the parents and healthcare providers that oppose them. But it’s more than that. It’s a fight for acceptance for our kids, a fight against a government that has continued to blatantly lie to Ontarians and insult families and kids. A review of the government’s insults and bullying:
- Minister MacLeod bullied and threatened service providers with “four long years” if they did not publicly support the government’s reforms.
- Minister MacLeod referred to families who expressed concern about the policy changes as “professional protestors”.
- Premier Ford referred to families with kids on the spectrum as “[having] their hands in the public trough”.
- Those comments followed up Premier Ford’s threatening voicemail to a parent.
- MacLeod about parents with kids on the spectrum: “You give them an inch and they want a mile.”
- The Ford government has lied to parents repeatedly on this issue, as admitted by one of the government’s own MPPs.
- Tory MPPs have repeatedly called the police on peaceful protestors outside of their office, or in one case when grandma and the kids went to visit their local Tory MPP.
- The government appointed Alex Echakowitz to their autism advisory panel, despite Alex’s past attacks on parents with children on the spectrum, which include the comment to one parent: “I hope your children all die under Ford.”
The government may hope we go away, that we prevent our kids from going outside, but we’re not going anywhere. Our kids are amazing and deserve to be given all the opportunities that kids deserve.