The system is set up for special-needs kids to fail

In her new memoir, My Own Blood, published this week by Penguin Random House Canada, Calgary mom and author Ashley Bristowe paints an unflinching portrait of the divide between what children like her son Alexander require to thrive and what the government is willing to invest in caring for special-needs kids. 

In the first months of his life, Alexander was diagnosed with Kleefstra Syndrome, a rare genetic disorder. Kids with Kleefstra Syndrome exhibit a broad range of features including developmental delays, reduced intellectual capacity, frequent respiratory infections, and weakened muscle tone. As an infant, Alexander was a “floppy” baby who suffered from a hernia and a heart murmur, and he had difficulty breathing on his own from the beginning. Bristowe says the doctors told her, “This is a syndrome of some kind. We’ll run his DNA.” 

They determined that Alexander has a genetic deletion that had recently been classified as Kleefstra Syndrome—and that he was unlikely to ever walk or talk. 

The news that Bristowe's second child would be so unlike her neuro-typical first child was shocking. Unwilling to accept that her son wasn’t capable of more, she gave up her career as a photographer to navigate the labyrinthine bureaucracies of a government funding system that both expects too little, and invests too little, in special-needs kids. 

“Before I had Alexander, I had a very minimal understanding of people with disabilities, let alone children with disabilities, let alone developmental strategies, or physical therapy, or speech therapy,” says Bristowe. “I'm basically an expert at all that stuff now.” 

We interviewed Bristowe about what she's learned as the parent of a special-needs kid.

My Own Blood documents the early years of family life with Alexander. He’s now 12. How is he doing today?

Everybody's great. Alexander is walking, talking, reading, swimming, being amazing, able to carry on an amazing conversation now. He’s delayed, but has blown past even the most ambitious milestones I could have hoped for when he was diagnosed. 

What did your family have to give up to make sure that Alexander got the help and attention he needed? 

When we're looking at the kind of supports that are given specifically to disabled children, disabled adults, and families with disabled members, there's a bit of bigotry in how society deals with and funds that. Our needs are considered too complicated to be dealt with adequately by healthcare, and are therefore the family's problems.

We had to fight and fight and fight to get into these programs that Alexander was absolutely qualified for and then we had to have all this paperwork and we had to have evaluations done. There are hoops the government funding system makes you jump through in order to weed you out. That's the point of those hoops—it’s to weed out people who don't have a crazy, ferocious mother like me. 

The people who are taken out of society, we are the acceptable loss. My contributions to society over the last 11 years are the acceptable loss in order to keep Alexander from being required to be cared for by the public purse.

The fight that we took on to give Alexander every opportunity to thrive, changed my entire world. I lost my career. Our household lost half our income. All I did was fight for this kid. 

Wouldn’t it cost less to intervene in the lives of these children early on?

Way less. As people grow up and age, that strategic development of the brain has to be capitalized on at the moment it's growing. You can't not learn how to talk and then expect someone who's 25 to learn how to talk. The window is closed. Your brain kills off all of those pathways. If you take a kid like Alexander and say, ‘Okay, he's not developing. Let's see if he catches up, come back to us when he's four’ and he comes back at four, and he's still lying in a basket and he blinks and you have to feed him and he's not potty trained. He can't walk. He can't talk. He can't read. 

And they say, ‘Yeah, it's a shame.’ Well, wait a minute, you told me to come back when he was four! I think basically all parents of kids with neurological disorders are told, ‘Take it easy. Don't blame yourself,’ not ‘This is an emergency, take care of this as fast as possible.’ 

In the book you describe the low expectations many other parents of kids with Kleefstra syndrome seem to have. Is it the medical system that instils that? 

Absolutely. Everybody wants what's best for their children. My dad's a doctor and I'm a childhood cancer survivor and my mom's a nurse. I grew up surrounded by doctors. I'm not afraid of the healthcare system. But my husband's family, they revere doctors. So if a doctor says to you, ‘Yeah, these kids, they generally don't walk until they're six or eight, and they definitely never talk,’ what would make the average person say you're wrong? Those are the experts.

About those ambitious milestones: Your ultimate goal was for Alexander to read. 

Yes. You think: Walking, talking, feeding themselves, wiping their own bums, right? The four big ones. And none of the Kleefstra kids that we’d heard of could read at that point. I said, ‘I have to shoot for something that is so far beyond what I think he can accomplish so that I'm working to that further potential, so that I don't get satisfied with what they say he can do.’ And I was a big reader as a kid. thought, if this child can't read, how can he interact with the world? How can he demonstrate his intelligence? How can he take direction when it's not verbal? I thought if he can read, he can have an inner life. 

After becoming frustrated with a lack of access to therapies in Calgary, you ended up applying to get into an intensive private treatment program in Philadelphia. 

Yes, it's called The Institutes, and it's a centre for brain-injured children that has been operating since 1955. The founder was a physiotherapist, had fought in World War II, came home, and started working trying to prevent seizures in brain-injured adults. They gradually moved their work toward kids. As they worked with brain-injured children, people started applying the principles to children with Down Syndrome and they saw enormous gains. So The Institute's basis of thinking is frequency, intensity, duration of therapeutic tasks—high frequency, high intensity, short duration.

These therapies are gruelling, they cost thousands of dollars, and you’re required to travel for follow-up visits. How did you convince yourself to keep going? 

The Institutes and the therapy programs that we were running at home as a family were the only thing that said, ‘This kid and this situation can improve and be fabulous.’ 

People might call you "heroic" for giving so much up to raise Alexander. Why is the "hero" label problematic? 

The heroism thing is definitely a way of minimizing what happens. Where's the choice in this? We're not heroes for having had a child with disabilities. That's just a way for people not to look right at the issue. That's like saying that frontline healthcare workers are heroes, but not paying them properly. It’s just a way of distancing yourself. 

If you could wave a wand and have all the proper government support that you need, what would that change about your life? 

I would love a magic wand. My son would go to school. At this point it doesn't look like Alexander will continue with school. We took him out in the fall. There was nowhere to adequately school him, so I started homeschooling him. We had put him into the public school system, with the assurances of the local school that he was going to be integrated and cared for. And that was true for the first two years. But then the principal changed and the new principal was basically like, ‘Need to get all the special needs kids out of this school because it impacts the school's ranking and the standardized testing. And I'm not going to get my promotion if I don't do that.’ Alexander was the last special-needs kid left in that school.

But in a post-pandemic world, where my son could be in a classroom, learning with his peers would be amazing. There are four kids with special needs on our street, not counting Alexander, and all of them are in a homeschooling or private school environment because our public school system doesn't accommodate kids.

When parents with special-needs kids go to the paediatrician, I want the paediatrician to say, ‘This is a tough road, but you have so many resources at your disposal. Here's this handbook that shows you what you qualify for, and here is your publicly funded advocate who's going to help you into the system.’ 

I want nobody to leave the genetics appointment going, ‘Oh my God, what am I going to do?’ 

What’s the sibling relationship like between Alexander and his big sister? 

Sloane, who's 16, can make Alexander laugh harder than anyone else. The first time Alexander laughed out loud, Sloane was behind his high chair and she was leaning around on one side and the other going “Woooooooo,” and he started to laugh. We'd never heard him laugh. We were all spellbound.

Sloane absorbed a lot of the chaos that’s described in the book and Sloane dealt with it. Now we're seeing Sloane ask questions about that time that are so insightful. She's become a special needs consciousness-raiser among her peers and an advocate for diversity in the climate change activism that she does.

They sound like incredible kids. 

For a long time, people would say, ‘Wow, he's doing really well.’ And he was, but when people said he's doing well, it always sounded to me like people were saying, ‘You can let your foot off the gas.’ Whereas all I could see was how far behind he was. And now Alexander is absolutely his own human being. He's making a huge difference in the world of everyone that he knows. It's been amazing to see the softening of the souls of a lot of the people who get to know him, including me.