No Easy Answers: Return to school raises concerns for parents and teachers

Guests: Lisa Quirke, Alison Palmer

SOUNDCLIP

VOICE 1: When it comes to keeping our kids safe, I won't take any unnecessary risks.

VOICE 2: Schools can safely reopen if community transmission is low.

VOICE 3: The best place for children is in the classroom.

VOICE 4: Our plan is for children and students to return to classrooms on September 8th.

[School bell]

MK: Different provinces, same message across the country. Politicians and public health officials are gearing up to get kids back to school in person this fall. The details of what that back to school plan will look like are still being worked out at the higher levels and in every school, classroom and at home. It's all adding up to a lot of uncertainty and a lot of questions. So today we're kicking off a series that will carry us through these last ramping up weeks of summer and through the school year. We're calling it, No Easy Answers. Eight-year-old Alex kicks it off.

SOUNDCLIP

ALEX QUIRKE: I used to be in grade 2, but now I'm in grade 3.

LISA QUIRKE: How did you feel with the schools closed because of coronavirus?

ALEX QUIRKE: I'm lonely without my friends because right now I only have one friend that lives across the street. His name is Luka.

LISA QUIRKE: And what was it like doing all your school work on the computer here at home?

ALEX QUIRKE: I missed my friends doing work altogether on the board at my school. There wasn't much to do because coronavirus just cancelled it all for me. It annoyed me, quite a lot.

MK: Alex was talking with his mom, Lisa Quirke, and she's on the line with us from their home in Toronto. Good morning, Lisa.

LISA QUIRKE: Hi. Good morning.

MK: Well, listening to your son talk there, I'm wondering who has more butterflies about going back to school? You or Alex?

LISA QUIRKE: I think I do, because I think I understand more about the bigger picture. I think for him, he's just most excited to see his friends, as you heard.

MK: Well, tell us about that bigger picture. What's it look like to you?

LISA QUIRKE: For me, so, Alex, has autism. So he's on the autism spectrum and he really struggled with the remote burning piece. My partner and I, we both work full time and we have a younger child as well that is supposed to start junior kindergarten this September. So this was 20/20, supposed to be really our year. We would finally have two kids in school, nobody in day-care except for aftercare. And we were just so excited about that. And now I find this really in a lot more stressful position because we don't really know if it's completely safe to send our kids back to school, but we don't feel like we have a lot of other choices right now because school really is the best place for Alex and his brother.

MK: Well, last week, here in Ontario, the education minister came out with a back to school plan, the protocols. Were you comforted by what you heard last week? I'm sure you've gone through this with a fine tooth comb.

LISA QUIRKE: Yeah, I was comforted by parts of it. So I would say that I was absolutely delighted that a full return to school was less the plan, because I think that that really is the best place from for my child in particular. I know each parent and each family is really struggling to make their own decisions, but I think the public education education system has been really wonderful for my child. He has special needs. And he's been incredibly supported since joining the school that he's at right now. And it's just I wouldn't want to have to choose between his physical health and his mental health. So my concern about the return to school is really about whether or not it can be done safely, given the funding that's being allocated for it. I know in Toronto, many schools are older buildings. There's a lot of concern about ventilation, but whether or not windows can open. And one of my biggest concerns is really about elementary classroom sizes. So I noticed the plan had a provision for smaller classes at secondary level, but elementary classes would stay the same and given that summer, 30 students or more and that very small children find it difficult to socially distance. I just don't know how that can be managed in a really safe way.

MK: On the physical health side, let's talk about that first. Will Alex be going back to school wearing a mask?

LISA QUIRKE: I will send him in a mask. I think it's it's going to be interesting to see if he'll be able to keep it on all day. He goes to a smaller class. So Alex is part of the primary autism program at our local public school. So his class has six children. I'm not sure if all of them will. We'll be able to keep their masks on all day either. I their class is extremely small. So it's much, much, much smaller than a typical classroom. I think it was a converted prep room at one point or a smaller space. So it's perfect for six kids, but six kids one metre apart. I don't know if that's actually physically possible in that room. Just I think, like it is for many kids in bigger classrooms with March, with more small children and more bodies. So, yeah, I'm a little concerned that he won't keep the mask on, but I'm definitely going to send him in it.

MK: Well, let's talk about the mental health side then, Lisa. What's at stake for Alex if the school doesn't get this return right?

LISA QUIRKE: His development. It's heartbreaking, really, to see a child who who thrives in a school environment and who needs that social interaction as part of his healthy development. Many kids do, but for my son in particular, being on the autism spectrum where he struggles with is that peer interaction. So that's something we really can't replicate in a remote learning environment for him. And when kids are young, you want to expose them to all of its mental, developmentally appropriate opportunities. You can. We've we've done our best to get into the right occupational therapy, the right behavioural therapy. So being integrated as he was part time from his program, meeting other kids, being part of this community is a huge part of his life and his well-being and ours.

MK: Well, we heard Alex off the top saying he didn't like the at home schooling, the spring. What was it like for you to try to guide him through that process?

LISA QUIRKE: It was a struggle for sure, because my my partner and I are trying to work full time remotely. We have a younger child as well who is pre-schooler very loud, very disruptive at times. So it wasn't the ideal learning environment for Alex by any stretch. He he's used to really and thrives really in routine, in really high structured environments, for he's supported by very skilled educators, his his teacher, his child, youth worker, his E.A. are wonderful at his school. So I paled in comparison in terms of my skill set. I'm not a trained teacher. I do not know how to support children with learning challenges. My son has a suspected learning disability and finds writing incredibly difficult. So in our first attempts before the learning was rolled out, my son and I were trying to practise his writing. I was trying to encourage him and it just ended in tears. He was very, very, very frustrated and I became pretty frustrated because this wasn't what any of us wanted. And you're trying to do this while you're trying to be a good employee as well. Yeah, it was extremely challenging for sure.

MK: I think parents across this country in the spring when their kids were home were really learning to appreciate how important teachers are in their children's lives. And clearly, that's been the case for you too. I wonder, Lisa, if this doesn't work, do you have any alternative?

LISA QUIRKE: We don't really. I've heard a lot of chatter online about people forming learning pods, and that just really isn't an option for a child like Alex. I can't imagine him being welcomed into a pod. So I'm not really sure what our Plan B would be, to be quite honest. If schools don't open, I think it would be a return to what we dealt with in the spring, which was just very challenging for sure. Yeah, of the last resort, one of us could take a leave of absence, but yeah, that would definitely be a last resort.

MK: I mean, let's hope for the best, because one thing I heard in Alex's voice off the top there was was he seems enthusiastic about going back to school. Is that the case?

LISA QUIRKE: Absolutely, yeah. He's excited to see his teachers as friends. Play. It's hard for me to describe to him what will be different this year so that he has a good understanding. We've talked about social distancing and handwash handwashing and masks. I don't know what parts of his day will remain the same or what parts of its favourite things, but recess in gimbal will be cut. But yeah, I think he's going to be excited. Whatever form school takes, he'll be excited to be there on day one for sure.

MK: Well, that's a great start. Lisa, I wish you well. I know there's so much riding on this, but let's just hope with everybody working together that we can get this right.

LISA QUIRKE: Thanks so much for the opportunity to speak about it. I appreciate it.

MK: Okay. Good luck with the year.

LISA QUIRKE: Thanks.

MK: Lisa Quirke lives in Toronto. She has two children, four and eight-years-old. Well, across the country, students will return to school under very different circumstances. Some attend schools in parts of the country with very few COVID-19 cases. Others live in cities and neighbourhoods that have been disproportionately affected by the disease. Shahnaz Ali is the program manager at the Success Beyond Limits. That's an organization that works with youth in the Jane and Finch community of Toronto.

SOUNDCLIP

VOICE: There were higher levels of COVID in Jane and Finch in lower income areas, right? Which is no surprise to us, especially since a lot of the parents are doing precarious work, being on the front lines, working as cashiers, working in the grocery stores. Some of the times parents are even juggling working two jobs. So parents didn't have that luxury, say you know what, I'm at home. So I think everyone is going to be very happy to hear they can get back to school and things can get back to normal. I'm just a little bit nervous of what that means for our community. They cannot use a one plan approach for all schools. I really think that the school board needs to think outside the box in terms of what schooling may look like and have equitable and different action plans for students living in neighbourhoods where the rates are higher to ensure their safety.

MK: Well I think everyone agrees students and staff need to be safe, but not everyone agrees on how to do that, leaving some teachers feeling like they're on the frontlines of a sweeping science experiment. Alison Palmer is a grade 4 teacher in Edmonton. She joins us from there this morning. Good morning, Alison.

ALISON PALMER: Good morning.

MK: I heard your education minister talking about aiming for a near normal operation, back to school operation. How near normal do you expect your grade 4 classroom to be this fall?

ALISON PALMER: Well, that is one of my greatest concerns. Just listening to Lisa and Alex just before this was very emotional for me, because as teachers are, I think our number one goal is to make sure our classrooms are a place that are safe and joyful and conducive to learning and that we have a routine routine is so important to children. And knowing what to expect generally day to day. And so one of my biggest concerns in the last few weeks is thinking about how I can still do that, how I can provide a classroom that my students want to be in, that that will also be safe. And when I look at all of these recommendations in the plan from our government, all the things that we have to do and consider in order to stay safe, I just see a list of very difficult decisions that we'll have to make between good education and safety. And that's really difficult.

MK: Well, let's talk about that. You say that you and the students, everyone needs routine. But I hear in your voice that you fear there will be uncertainties. So what are you worried about?

Well, I'm very worried that our days will look so different from what the kids have come to know, especially my students. I mean they're in grade, they're coming into grade 4. They have a lot of experience already with school. And they have an idea of what school will be like and should be like. And they have the parts of school that laid love. Like Lisa mentioned, for so many kids, the parts of their day that they just love are recess and gym and art and music and all of those kinds of classes and those will be the things that are affected the most. And it's, yeah, it's just so complicated. I even think about how I can do my best teaching when I know we're talking about trying to keep a distance. Keep a two metre distance from the kids and keep them distance from each other. The fact is that we don't stand at the front of the room and lecture. That's not how we teach. And so I'm going to come into close contact with all of my students and there's just so many things to think about. I think I forgotten your original question.

MK: No, I'm just wondering what it's going to be looking like. I mean, will you be wearing a mask? Will the students be required to wear masks?

ALISON PALMER: Well, currently in Alberta, masks are not mandated yet. I've been really hoping that that's something that we will hear soon from our government that masks will be mandated. I certainly will have to wear a mask. I think that's going to be really important because we just can't socially distance or physically doesn't. It's so difficult in a classroom. If we're going to continue with really good teaching. I have to interact with my students. I have to get up close to them. I have to be able to help them and so I think masks are going to be really important.

MK: And will you have a reduced class size? Will you have fewer, fewer kids this fall than you would normally?

ALISON PALMER: No. As of now, no. I should have about, I think I'll have about 27 or 28 kids. So I'll also really have to think about how to set up my classroom so that they can all have their own spaces. And I'm not sure how all that considering the furniture that I currently have in my classroom, I don't have desks. I have a table where they sit forward to a table and they face each other. So I have no idea how I will seat them. And in order to spread them out and and really in an elementary classroom, we also don't always just sit in those groups at our desks. When we move around, we sit on the floor together. We put our heads together around that piece of paper where we're brainstorming. That's how we teach and that I just don't know how that will all look when we come back.

MK: Yeah and I'm envisioning that too. And it just makes me wonder, just listening to you talk about that setup, Alison. What is the protocol? What happens if a student or several students in your class or a teacher test positive for COVID-19? What's the protocol?

ALISON PALMER: Well, that is a huge area that I think there is so much confusion and not enough answers yet because we just don't know. And that's something I think about all the time. So if I wake up one morning and I have symptoms and I need to stay home, a substitute teacher needs to come into my classroom. So I have so many questions around how we will be able to keep up with the demand for substitute teachers, how we will keep those teachers safe. Will they be expected to go from school to school to school like they do right now? Will they be provided with any kind of sick leave and benefits that they can have some income guaranteed while they're also trying to stay healthy? So the issue around substitute teachers is huge and we really need answers around that. And then we need more answers about how quickly people can get tested. When we did have our minister of health and our chief medical health officer did a Facebook live where they answered questions and during that live, our chief medical health officer did say that, yes, testing right now is not fast enough. And I know people getting tested now or waiting four or five days to get results back. And so that's that's something that needs to be addressed. We will need to get teachers. Especially tested faster so that if I I'm negative, I know I can go back to school as soon as I feel better, I don't have to stay home for two weeks and we can immediately get that contact tracing happening. And there haven't. No, we're here. Have they answered questions around what will happen if a teacher does test positive? Will the whole class have to? Then isolate. That was one of the things I felt was so unclear from from our minister and our chief medical health officer. It felt that they were really reluctant to say, yes, whole classes may have to isolate if there is a case. And they kept talking about, well, it really all depends on close contact and maybe you won't have close contact with all the students in your class size.

MK: It sounds like you're going to in your class.

ALISON PALMER: I will. We, I mean that's what I'm, these decisions are so hard. Do I stand at the front of the room and just lecture the kids and make school just not a good place to be and that's not good teaching or do I get right in there with my kids and potentially put more of them at risk?

MK: You know, when I sent my kids to school, we used to always consider there were these great petri dishes. You'd come back with coughs and colds and it was kind of charming. No longer in a COVID environment, would parents find that charming. I'm wondering, I'm not, I guess it's too soon to be able to tell, but I wonder if you, if there will be parents holding their kids back because of those concerns?

ALISON PALMER: I would assume there will be some parents who choose to keep their kids at home. But for many parents, they don't have that choice. Like the parents you just heard from for various reasons. Parents don't have a choice and they'll have to send their their kids back to school. But I think some will choose to stay home. But even that leads to so many questions of how we will how will we provide those students with good online learning opportunities and who will provide it to them? Because, you know, teachers will will have to be busy in their classrooms. The students who do come back. So how can we make sure that those kids who are staying home still get really good learning opportunities? So that's another huge question.

VOICE: Alison, you've got a lot of questions. I'm just wondering, you know, as time ticks away here, if you're going to have, get the answers that you and so many other teachers and parents are looking for? And time is ticking.

ALISON PALMER: Yes, I just last night, I saw that the Alberta Teachers Association had put out a list of the things that teachers are basically saying we need to see these things in order to feel safe about going back. And it's very detailed. I haven't had a chance to completely read it through. A lot of what I thought, yes, this is what we need, but I have no answers about how those things will be carried out, especially when there is no extra funding coming from our government. So that's a huge part of this.

MK: Well, we've got the debate going now, Alison. So let's hope you get those answers and fast. Alison, good to talk to you this morning. Thanks so much for your time.

ALISON PALMER: Thank you.

MK: Alison Palmer is a grade 5 teacher in Edmonton. And we'll be talking much more about back to school in the days to come in our series, No Easy Answers. And if you're gearing up for school, let us know what you'll be doing differently and how you're feeling about it. Just send us an e-mail by our website, cbc.ca/thecurrent and click on the contact link. The CBC News is next. Then, Joe Biden is also on the clock for one of his most consequential political decisions of the year. Who's going to be his running mate for VP? We'll talk about that coming up. I'm Mark Kelley. This is The Current.

[Music]

CBC Podcast: Unlocking Bryson’s Brain – Episode 2

MK: I'm Mark Kelley And you're listening to The Current. This summer, The Current has been bringing you some of the best from CBC Podcasts. Today, we continue our presentation of Unlocking Bryson's Brain. From violent seizure like episodes to insensitive comments from strangers, Bryson has a hard life. But after 10 years of searching, doctors finally provide a diagnosis. Today, we'll hear how this news changes everything for Bryson's parents and their hunt for a cure. Here's Bryson's dad, Keith McArthur, with Episode 2 of Unlocking Bryson's Brain.

SOUNDCLIP

MCARTHUR VO: August 2015. We're celebrating Bryson's ninth birthday. His big brother Connor has written a card. Bryson can't read it, so Connor reads it to him.

[Connor Reads Card] Connor: "Bryson I love you so much. You mean so much to me. I am really sorry if sometimes you feel like I neglect you. You know how much you mean to me. Have a great birthday. Bryson from Connor.

MCARTHUR VO

Birthdays are supposed to be happy occasions, but Bryson's birthdays are always tough for my wife Laura and me.

[Happy birthday Bryson] Family singing: "Birthday dear Bryson. Happy birthday to you..."

MCARTHUR VO

Each year that passes is a reminder that Bryson isn't typical - that he’s falling further behind in his developmental milestones... that he may never be able to walk, never be able to talk, never be able to feed himself or make his own life decisions or tell his own story.

Each birthday is also another year without us being any closer to understanding what's causing Bryson's developmental delays -- what's going on in Bryson's brain.

MCARTHUR VO

Bryson can't blow out his own candles, so one of us will do it for him. Sometimes it's Connor or maybe one of his cousins.

Before they blow out the candles, Laura and I each make a birthday wish for Bryson. We never speak them out loud because that's the thing about wishes... if you do that, they may not come true.

But I know that Laura's wish for Bryson is the same as mine.

I'm Keith McArthur and this is Unlocking Bryson's Brain, a podcast series about my son Bryson, his rare disease and our family's search for a medical miracle.

We're looking for a cure for Bryson's mystery condition.

But we can't get that without a diagnosis.

And by the time Bryson turns nine, I've pretty much given up hope of ever solving this mystery.

What I don't know at the time is that before Bryson turns 10, our genetics counsellor will email Laura and tell her that after years of waiting, Bryson is finally about to get a diagnosis.

Laura: “I emailed her back and I just said, "Can you just tell me or can we have a chat on the phone I just need to know if it's degenerative"

ACT 2: Dr. Cohn

~~Receptionist:~~ ~~“Keith?”~~

~~Keith:~~ ~~“Keith, yeah, hi nice to meet you.”~~

~~Receptionist:~~ ~~“Nice to meet you, I’ll let Dr. Cohn know that you’re here.”~~

Sot: Introductions

Ronni: “So how do you want to do it, you’re going to ask me questions?” (Fade under)

MCARTHUR VO:

When people would ask little Ronni Cohn what he wanted to be when he grew up, he didn't have to think twice.

He was going to be a doctor, just like his grandfather.

His marks weren't good enough to get straight into University of Duesseldorf’s medical school, so he put all his hopes in impressing the admissions committee through an interview.

When one committee member asked about his interest in medical research, Ronni said he didn't want to waste his time in a lab; he just wanted to help patients.

This was not the answer the admissions panel wanted - and Dusseldorf turned him down.

But eventually, Ronni found his way into medical school at a less prestigious public university in Germany.

He spent time at the local hospital and became fascinated with the work of trauma surgeons.

[Cohn 9:53] Cohn: "Yeah I worked in an emergency room as a medical student thinking the coolest thing is to repair injured shoulders..."

MCARTHUR VO

But in 1992, a close family friend gave birth to a child with a severe developmental delay. Doctors couldn't diagnose it. They called it a mitochondrial disease, a genetic condition where cells don’t produce enough energy to make organs work properly.

[xx:xx] Ronald Cohn: "I was a second year medical student and my friend called me and said What's a mitochondrial disease? And so I looked it up in the dictionary and said disease of the mitochondria, and I'm like -- Duh. ...

"So that's how I ended up in genetics.

Keith: "And so and that family friend or that that child I guess grown up now still sort of inspires your research today, is that right?"

Ronald Cohn: "It does and interestingly enough 27 years later we still don't have a diagnosis in him. He lives in Switzerland and we actually just in the process of trying to sequence his genome."

MCARTHUR VO:

Two decades later, Ronni is working as a geneticist specializing in hyptonia at The Johns Hopkins University in Baltimore when Laura tracks him down. Hypotonia - or floppy baby syndrome - was Bryson's first diagnosis.

Bryson’s about 18 months old at the time. And after a year and a half of searching in Canada, Laura is ready to look outside of the country for help in getting Bryson diagnosed.

She finds Dr. Cohn's contact information on the hospital website, and emails him.

[Laura reading Cohn xx:xx] Laura: "Dr. Cohn, I just learned about your practice. I have an 18-month-old son with severe hypotonia, not yet diagnosed. We live in Toronto, Canada. What would be the process for setting up an appointment with you?"

[Laura 2 15:29] Laura: "I told him a little bit about Bryson, I expected this email to go out into the universe and probably never hear back. And then he responded."

[Ronni reading xx:xx] Cohn: "Dear Laura, Please contact Em…

[Laura 2 15:29] Laura: “he e-mailed me back that same day.”

MCARTHUR VO:

Many doctors in Canada won't even give their email addresses to patients. But here was this busy, important doctor in the United States responding more quickly, more directly than Bryson's actual physicians.

Laura and Ronni exchange emails, and we start making plans to visit him in Baltimore.

[Laura Reading Cohn xx:xx] Laura reading: "Dear Dr. Cohn. Thank you so much for getting back to me. We have been in touch with Emily...

[xx] Ronni reading: "Dear Laura, I would absolutely be able to work with these samples..."

[Laura Reading Cohn xx:xx] Laura reading: "Hi Dr. Cohn. I have been in touch with the international department...

MCARTHUR VO

It takes three years, but we eventually make the decision to go.

Then, before we can book our flights, a crazy coincidence:

One afternoon when Laura is browsing a discussion board for parents of kids with hypotonia, she learns that Dr. Ronni Cohn is moving to Canada.

She reaches out, and he emails back confirming that yes, he’s moving to the Hospital for Sick Children in Toronto.

[Laura 2 15:29] Laura: "And I was with my mom at the time and I just pulled up this e-mail on my phone and I -- I think I must have just exclaimed or something. Oh my God. Out loud and my mom kind of jumped and looked at me and I told her Dr. Cohn is coming -- cause she knew all about him I told her all about his work and said you know because they would have actually been involved in any kind of planning to take Bry down there. And I said he's coming to Toronto he's coming to Sick Kids. He said he'll see Bryson. And we both did a little happy dance in the backyard. I think it was summer and we were just having a little you know jump for joy out there."

[Cohn 12:21] Cohn: "And I remember when I moved here I reached out to you saying you know I'm here now. Maybe I could meet you and then you came to my clinic."

MCARTHUR VO:

Our first appointment with Dr. Cohn starts as a bit of a repeat of everything we've been through so many times before -- questions from a genetics counselor about Bryson's birth and whether or not Laura and I could be related. Bryson gets weighed, and his head circumference is measured, and we're asked to get him out of his wheelchair and stand him up so they can assess his strength and balance.

But when we meet Dr. Cohn, he seems different than all the other doctors. When we call him Dr. Cohn, he tells us to call him Ronni.

And he offers new hope - a genetic sequencing test that would compare Bryson's DNA to Laura's and mine. The test only involves about 1 per cent of the human genome, but it's the most important part -- every gene that contains the recipe for proteins -- the building blocks for all our flesh and bones. And brains.

The test is expensive -- over $10,000 -- and it's not covered by the provincial health care system.

We ask if we should try to come up with the money to pay for the test.

But Ronni says to give him a few weeks to make a special request to the ministry of health. Or if that doesn't work, maybe he could do the test through his research budget.

We ask Dr. Cohn what we should do to help Bryson in the meantime.

"Love him," he tells us.

And we do. So much that it's hard to wait for this test.

We wait for the better part of a year, but eventually we're told that the funding has come through and the test is a go. And there's good news. We don't need to bring Bryson in for another difficult blood test. They have enough of his blood stored from previous tests.

The bad news? More waiting.

ACT 3: LIFE GOES ON

MCARTHUR VO

Life goes on.

We try to create the best possible -- most normal possible -- life for both our kids. We take them to the playground, and the Science Centre, and Canada's Wonderland. We go on family vacations -- to cottages, and Disney World, and even Europe.

We know it’s important to have this family time. But getting Bryson in and out of his oversized carseat and into his collapsible wheelchair, and navigating public spaces that aren’t as accessible as they should be? It’s exhausting.

And sometimes it's heartbreaking.

One of the first times we try to fly with Bryson, he decides he wants to kick the seat in front of him, so we spend the entire flight trying to hold down his legs and apologizing to the impatient businessman in front of us.

After that, we always make special arrangements when we fly; I usually sit beside Bryson and Laura sits in front of him taking the brunt of his kicks.

[audio of Bryson "singing"]

MCARTHUR VO:

There's this sound Bryson makes -- I sometimes call it singing -- but it's really more of a happy wail if that makes sense?

He can get pretty loud. And sometimes ...

[sound gets louder]

MCARTHUR VO:

... sometimes it makes having a conversation near Bryson impossible.

And as much as Bryson seems to enjoy going to the movies, we don't want his singing to disturb the rest of the theatre, so we take turns missing big chunks of a movie while we walk with him in the lobby until he's finished ... expressing himself.

[SOUND FX: RESTAURANT SOUNDS]

MCARTHUR VO:

In restaurants, Bryson can be especially loud and restless. More than once, he's used his hands or feet to knock a plate off the table where it smashes on the floor.

[SOUND FX: SMASHING PLATE]

The staff are usually patient and kind, but that’s not always the case with our fellow diners.

One time we hear a young couple ask not to be seated near Bryson.

Another time, an older woman is so offended by Bryson's singing that she takes it upon herself to nastily mimic Bryson's sounds throughout our meal.

And then there's the time we take our boys to a new Thai-slash-Japanese restaurant in our neighbourhood. It's all-you-can-taste: You order what you want from the menu and they bring it to your table.

For Bryson, we bring a thermos of macaroni and cheese, because it's hard to find food he can eat in restaurants.

We order our first round of food and it comes quickly – Tom Yum soup, sushi, green curry chicken, and spicy octopus.

We order our next round. Mango chicken comes quickly. But we wait almost an hour for the rest of our food.

Despite the wait, the kids are in good spirits. Connor is making up a variation on Pokemon he calls Connormon. And Bryson is communicating in the only way he knows how – through his songful, deep-throated vocalizations.

[Bryson sounds]

A manager drops by. I assume she's there to apologize for the delay. She's not.

"You need to tell your son to be quiet," she says, waving in Bryson's direction. "Other guests are complaining that they can't enjoy their meals in peace."

We're stunned. We point out what we think should be obvious – that Bryson has severe mental and physical disabilities and that we can't just tell him to be quiet.

The manager shrugs us off.

More than one table has complained, she says.

We ask her to put the rest of our meal in take out containers, and we leave.

So, yeah, people can be jerks.

But there are good people too, lots of them.

Another time; another restaurant. Guests complain about Bryson's noise and say we should have to leave. Instead, the owner tells them Bryson has every right to stay but they are no longer welcome.

The people who just smile at Bryson when we walk by on the street or the grocery store? Those people warm my heart.

And there's a surprising number of people who ask if they can pray for Bryson, especially when we're traveling in the States. Sometimes it's awkward -- like the time at the Orlando IHOP when they held Bryson's hands during a prayer that went on for nearly five minutes -- but I know they mean well.

There have been so many wonderful teachers, doctors, waiters and caregivers in Bryson's life that I can't mention them all.

But I've got to single out two.

[Suzanne 00:13] Susanne: "So what do you want a mohawk? Let's put on your smock. Hold on. Bryson I got ya. There you go."

MCARTHUR VO:

Suzanne cuts Bryson's hair, which, I don't know, maybe sounds like not a big deal, but believe me, it's a big deal. For the first seven years of Bryson's life, haircuts were a harrowing experience. He hated them. He would scream and shake his head, and try to swat away the scissors with his hands. But with Suzanne it's different. She spends time with him before she starts cutting his hair, talking to him, telling him what she's going to do. And it works. Bryson now sits calmly while Suzanne uses scissors, and even clippers, in his hair.

And then there's Edna.

[Edna 3:15] Edna: "You're happy now? You're happy?"

[Bryson laughing]

MCARTHUR VO:

When Bryson was three, Laura went back to work, in a children’s hospital. So Edna has worked with us as Bryson’s tough but gentle caregiver for more than a decade.

[Edna xxx] Keith: "Edna you've been here for 10..

Edna: "10 years! Yeah, 10 years."

MCARTHUR VO

Over time she's become a third parent to Bryson; she's part of our family. And sometimes she understands Bryson's complex needs better than we do.

[Edna 00:38] Edna: "You didn't eat your lunch today. That's not good. You should should eat all your food and drink your milk."

MCARTHUR VO:

Edna grew up in the Philippines, the fourth of 10 children. Her mom was 47 when she gave birth to her last child, a daughter who was born with serious medical challenges.

[Edna 1:41] Edna: "But when she was three years she passed away. Yeah. ~~So sad.~~ That's why I'm so close with special needs kids. If I see that kind of kids I feel so bad because I'm going to miss my sister. Yeah."

[Edna 2:05] Keith: What was your sister's name?"

Edna: "Janet, yeah, Janet. Janet."

MCARTHUR VO:

We're supposed to get seven hours of government support each week to help Bryson get ready for school in the mornings. But that service is grossly unreliable.

Laura and I have had good jobs and help from family so we're fortunate that we've been able to hire Edna as a caregiver to take care of Bryson on weekdays when he gets home from school. I know other families aren't so lucky, and I honestly can't imagine how they cope.

MCARTHUR VO:

I know I shouldn’t complain. Because my life is easy compared to what Bryson has to go through on a daily basis.

But sometimes I feel sorry for myself. Sometimes, it’s hard to be Bryson’s dad.

When I'm with him, it can be exhausting, lifting this 75-pound teenager out of bed, and onto the chairlift, and into his wheelchair.

There's the financial burden of all the medical equipment and therapy and support workers, that’s only partly covered by government and insurance.

And on weekends or evenings when Edna's not around, it feels like my life isn't really my own. Taking care of Bryson is harder now than when he was a newborn. He needs constant care and it’s a challenge for one person to manage. So if I want to go to the gym, or do yardwork, or even have a shower, I need to negotiate the time with Laura.

Then there's the fear that maybe he won't make it through the night. We know of kids with rare diseases who have died suddenly and unexpectedly. So we're constantly slipping into his dark bedroom to lean in close and make sure we can hear him breathing.

And of course, there's the constant worry about who's going to take care of Bryson when Laura and I aren't around any more.

But the biggest challenge of all are Bryson's seizures.

Or maybe they're not seizures -- we're still not sure.

We can tell when one is coming because Bryson will stick out his tongue and wrap both arms around his head.

Then his limbs tighten and his feet contract and twist. Sometimes he starts laughing uncontrollably. Other times he screams and grunts.

[Seizure sounds]

MCARTHUR VO:

Connor, who is now 16, has witnessed hundreds of his brother’s seizures.

[Connor 2: 00:28:10] Connor: "So usually he starts off laughing. He either starts off laughing or kind of just humming very loudly and putting his hands on his head almost as if -- it may sound kind of graphic but to protect your head from a blunt force if it was being applied in multiple areas towards your head."

MCARTHUR VO:

Then he gets violent. He'll start to kick or scratch or bite himself or those around him.

[] Connor: "He kind of like cradles his body as if every muscle in his body is twitching and tensing and usually tries to kick the things around him like tables or just kicks the air in order to kind of like flail about. He usually, after around maybe a minute, starts kind of screaming manically and this like very intense period can last anywhere from like on a good day a minute or two on a very bad day like 20... and he usually looks either really happy afterwards or just really disappointed almost."

[Connor 2: 00:29:51] Keith: "So doctors are often skeptical about whether they are seizures and they sometimes ask us like is it just a tantrum like you ever wonder that? Is it possible that it's that?"

[Connor 2: 00:30:14] Connor: "You know, he has tantrums occasionally. Like we know when their tantrums. But one -- he's literally screaming and bashing his legs against the wall and like you know scratching his arm so hard that he bleeds. That doesn't usually happen but it has happened on occasion. It's not just a tantrum at that point."

MCARTHUR VO:

And the other thing about these episodes -- they don't just start abruptly; they end abruptly too. The flailing stops suddenly and Bryson curls up still and makes a clicking sound with his mouth.

I wish Bryson could tell us what these episodes feel like for him. What’s going on in his mind as he flails around and tries to hurt himself?

He's had a bunch of EEGs -- tests where sensors are glued to his scalp to measure electrical activity. These tests suggest that Bryson's brain is prone to seizures, but they've never been able to pick up one in progress.

So his first neurologist -- remember the one who left the hospital to go for a run just as our appointment was about to begin? -- he rules out seizures entirely.

And when we ask him what we can do next to help with these violent episodes, he basically tells us to deal with it.

But that seems impossible. We're worried that Bryson's violent episodes might seriously hurt him or one of us.

So, we transform the family living room into a safe space for Bryson, covering the floors and walls with gymnastic mats and pool noodles. But he still gets hurt.

[Seizure sounds]

MCARTHUR VO:

And, of course, we get battle scars too.

On Sunday nights, we measure how hard a weekend it’s been for Bryson by how many scratches and bite marks and bruises he has and we have. We're mostly successful at keeping Connor out of harm's way, but as he gets older, it's hard for him to stand aside while he watches his brother hurt himself and his parents.

[Connor 4 00:52] Connor: "I see myself as kind of a protector and when I see Bryson flailing about and kicking you and hurting himself and the two of you, it's hard for me to just idly stand by while these three people that are literally my family are just getting beat up right in front of me."

[Laura 20:12] Laura: "I think though the other piece that doesn't get recognized is almost like a post-traumatic stress. So when you've been in situations where a child you love you know in his challenging moments is is pinching you and biting you and screaming. And you're trying to help them, you know that -- that's stressful and it's tiring and it's scary and it breaks your heart. And that repeatedly -- You know either several times a day or every day for months years is is exhausting. And you kind of feel like you've been beaten up. And then you can never talk about feeling like you've been beaten up because what kind of mom would talk about that, right? You just. You do it because you love them and. It doesn't make it easier and your heart breaks for them at the same time. It's very complicated."

MCARTHUR VO:

Laura's toughest memory of Bryson was a vacation with her parents and her brother’s family. We were surrounded by the kind of calming Ontario wilderness that looks like something out of a Group of Seven painting.

But this week was anything but peaceful.

[Laura 1: 16:22] Laura: "we were at a cottage with my family and Bryson had been having really bad episodes for probably two days and so much screaming and crying and kicking and we were exhausted. I think everyone there was exhausted and we all had our moments to kind of go find some peace and solace but our geneticist --

-- was amazing because he was on email with me trying to think of a kind of emergency prescription that we could give to Bryson to calm him down, but we've kind of run out of options and at one point he calmed down and I took him out to the dock. And we were sitting there and -- and Lo and behold he starts having an episode a seizure on the dock. And I start bringing him back in and there's these big rocks I'm trying to climb over them and carry this boy who is, oh gosh he was probably eight or nine at the time maybe even a little bit older and he bit my arm so hard that I screamed out I think I scared the crap out of everybody in our family and got him inside. And I just remember dissolving into this like fit of tears because my arm was this big purple -- had this huge purple welt on it and I was exhausted and I was so sad because I thought this is family vacation and Bryson deserves to enjoy a lake and peace and we as a family deserve that as well. And I was pissed off that why couldn't we at least just have this? Just a moment to enjoy and feel comfort and safety and relaxation...and that's why getting him the help he needed has been such a journey for us… so many doctors just didn't believe it was seizures or didn't believe it was anything that could be treated but but what is what does the family do?

MCARTHUR VO:

We see a new neurologist and at first he's just as skeptical about these being seizures.

But then -- right there in the first appointment with this doctor -- Bryson has an episode.

And the doctor says, yeah, this looks like a seizure -- not a typical seizure, but a more rare form of epilepsy.

So we put Bryson on an anti-seizure medication and the change is instant and remarkable. For six days, Bryson doesn't have a single episode.

But it doesn't last. On the seventh day, the episodes return and we're back to the drawing board.

ACT 4 A DIAGNOSIS

MCARTHUR VO:

Early on, one of Bryson's doctors told us that in her experience with kids with rare diseases, dads tend to assume the role of fixer. They want to solve the problem that can't be solved; cure the disease that can't be cured.

She said moms tend to be more practical, putting in the hard work of taking kids to physio therapy and speech therapy and the feeding clinic.

Now, I'm not a fan of gender-based generalizations, but I guess in this case, it's true enough for Laura and me.

And while we're both desperate to get a diagnosis for Bryson, we have ... different motivations.

For me, it's about knowing what Bryson has so we can find a cure.

For Laura, it's about ruling out the worst-case scenarios.

So that's what's on Laura's mind in 2015 when she gets a call from our genetics counselor telling us the unthinkable.

[Laura 19:56] Laura: "She said we received the results and would like to see you and Keith because something has come. Or we have a diagnosis -- We think we have a diagnosis. And I remember my heart in my throat like just thinking -- this can't be real I was at work when I read it and I just thought how are you kidding me? Really? How can this be? And then I remember thinking -- OK I can wait for the appointment. She made it very quickly. I think it was in like a few days maybe it was Monday and that was Friday or something like that. And but I I emailed her back and I just said, "Can you just tell me or can we have a chat on the phone I just need to know if it's degenerative" and I can wait for the actual diagnosis you don't have to tell me what it is but please just tell me if it's degenerative because I need to know that right now." And we've got on a phone call. And she said no we'll tell you the details of it but I can -- It is not a degenerative condition."

[Laura 21:39] Keith: "So how did it feel like just just to hear that it wasn't degenerative? What was that -- What did that feel like?

Laura: "Oh a huge relief -- a huge relief because of course in the back of my mind this whole time that's where I was going I was always looking for signs of regression and you know looking for signs of progression but also really hoping he wasn't going backward. Any kind of news that would give us hope for the future is really what I was looking for."

MCARTHUR VO:

I don't think I can overemphasize how huge it was to learn that Bryson's condition didn't appear to be degenerative. For nearly a decade we had lived in fear that someday, suddenly, Bryson could take a turn for the worse. That maybe this was one of those diseases that could become fatal when Bryson reached a certain age.

But there was still so much we didn't know when we packed Bryson into the car one December morning and drove for our appointment to get the full results. Was this a well-known disease? Was Bryson capable of learning to walk or talk? Was there a cure?

You know that feeling when you're about to get big news but you don't know if it's good or bad -- like whether you got the promotion -- and your heart is beating fast with excitement and trepidation? That's how I feel when we arrive at Dr. Ronni Cohn’s office.

So I’m glad when he gets straight to the point.

"We think we've found something," Dr. Cohn says. He smiles, more out of kindness than happiness.

He explains that Bryson has a variant in a gene known as GRIN1, which codes the brain's NMDA receptor, which in turn plays a critical role in learning and memory.

If this is going over your head, yeah, it goes over mine too. I'm the guy who struggled in Grade 10 biology. I'm going to unpack all this later on. All you need to understand for now is that Dr. Cohn has identified this one gene that seems to be the cause of all of Bryson's struggles.

And there's more. They've checked our blood too, and neither Laura nor I have this GRIN1 mutation. It's what they call a spontaneous de novo mutation, which means Bryson didn't inherit the condition from either of us.

And, yes, Dr. Cohn confirms the good news that GRIN1 doesn't appear to be degenerative.

The bad news? There's not much known about GRIN1-related diseases. And there aren’t any cures or treatments.

MCARTHUR VO:

Laura is a nervous passenger, so she usually drives when we're together.

But she asks me to drive home after the genetics appointment, so she can call her mom and share the news.

After a teary conversation, Laura consults Dr. Google. Typing G-R-I-N and the number one into the search engine doesn't reveal much. Laura finds studies published about research that's been done on mice with mutated GRIN genes, and research about how this gene might play a role in schizophrenia.

But we can't find anything that tells us what we really want to know -- what does this diagnosis means for Bryson's future.

Laura asks how I feel about the appointment. Good. Good that it's not degenerative. Good that we're finally done searching for the cause.

And Laura feels the same. But there's more. For her, the diagnosis is like an enormous weight has been lifted off of her shoulders.

[Laura 3 4:59] Laura: "Getting a diagnosis meant that I could stop looking backwards and searching for those answers. What had I done wrong? What happened? What happened during my pregnancy? What happened during childbirth. Just racked with those questions day in and day out. Honestly, they would follow me wherever I went. And knowing meant I could look ahead to the what ifs and what can we do. There was a huge healing power for me in getting that diagnosis and knowing that I wasn't at the root of that -- that it wasn't my fault."

MCARTHUR VO:

We know there have to be others with this GRIN1 mutation, and we're desperate to connect with their families. It takes a couple of hours of searching but finally we hit the jackpot. We find an Instagram video of a little girl in Norway with a GRIN1 mutation. With her big beautiful eyes and porcelin skin, she reminds us of Bryson.

We find an article from 12 months earlier in the Pittsburgh Tribune-Review about Hunter, a toddler with a GRIN1 mutation who can't walk or talk, but seems to love the Pittsburgh Penguins. Watching Penguins games calms Hunter just like Blue Jays games do for Bryson. The article quotes Hunter's doctor saying the disease is so rare, she only knows of 5 other ~~conditions~~ cases worldwide.

And then we find a private Facebook group -- Giggling GRIN1s -- where families of seven patients are exchanging information and first-hand experience about this rare condition. We connect with families, across the united states at first, but eventually around the world. We learn there's no name for this disease, so parents just say their kids have GRIN1.

The patient journeys are similar to Bryson’s. As infants, they got diagnosed with low muscle tone. Then, genetic sequencing identified a mutation in the GRIN1 gene. Like Bryson, most of these kids can't walk or talk and several suffer from seizures.

Most of the GRIN1 patients are younger than Bryson. But there's one young woman with GRIN1 -- Olivia -- she's in her mid twenties and she can walk! And talk! And feed herself! She's still got severe developmental delays and can't live on her own, but she offers us so much hope. Could Bryson do all this some day?

Finding this community of families like ours -- that's the biggest difference this diagnosis makes in our lives. Just knowing that we're not alone -- that Bryson's not alone -- somehow changes everything.

ACT 5: GRIN1

MCARTHUR VO:

At least for me and Laura.

But for Bryson, nothing really changes.

He stays on the same anti-convulsant drugs for his episodes. And he goes to the same therapies -- physio, speech, feeding.

[Audio of Laura giving Bryson physio

MCARTHUR VO:

In one of our followup appointments, we tell Dr. Ronni Cohn about all the ways Bryson's diagnosis has changed our lives... not only by giving us hope for treatments and a cure, but by freeing Laura from the guilt that she was to blame, and by giving us this new community of GRIN families.

He's heard a similar message from other parents.

[Cohn: 13:55] Cohn: "So I think it has been still today probably the most humbling professional experience that to be honest I probably underestimated the value of just having an answer. ~~And I was in fact known at Hopkins for -- One of the physicians one other geneticist who didn't always have to find a box and label for patients."~~

MCARTHUR VO:

He says that understanding how much patients -- and their families -- value a diagnosis has changed the way he practices medicine -- putting more emphasis now on finding one.

But that's not all that's changed.

Until recently, when a parent got a diagnosis for a child's rare genetic disease, they might hear that not only was there no cure yet, there might never be one.

But today, things are different.

Because we’re at a remarkable point in the history of medical science.

Many researchers predict that over the next decade or two, dozens of diseases that we think of as incurable -- everything from cancers to Alzheimer's to rare genetic conditions like GRIN1 -- could be cured.

[Sound: Keith and Laura meeting Omar Kwaja]

As part of our journey, Laura and I met with Omar Kwaja, the chief medical officer of Voyager, a Boston-area gene therapy company entering into clinical trials for a potential cure for Huntington's Disease.

[28:53] Dr. Kwaja: "When I was at medical school and I did a PhD. in Molecular Genetics at the time that all these genes for being discovered, it was a really exciting time and everyone thought that treatments would be around the corner. Well they weren't. But now they really are."

MCARTHUR VO:

One example: Remember how we had to wait six months to rule out a terrifying degenerative genetic disease? SMA? The one that kills toddlers? Well, the FDA has approved a gene therapy cure for that disease. Infants who are given the treatment are able to defy the natural progression of SMA and learn to sit and walk independently. It's too early to tell how long the gene therapy treatment will keep them alive, but the early results are promising.

The cure is expensive. Crazy expensive, like $700,000-for the-first-year expensive. And we'll talk more about costs in future episodes.

But it's a cure. A real cure.

And what's amazing to me is that, yes, scientists played an enormous role in curing this disease. But so did parents.

And almost every disease that's been cured over the past 20 years, has been driven by patients or parents raising money, sponsoring research, connecting scientists. And nagging the hell out of anyone who will listen.

[01:03:06] Dr. Kwaja: "About four years ago I got asked to see a little girl at a hospital in London who develops quite early newborn epilepsy and I I went to see the family as a favor. It turned out that her maternal aunt was a geneticist and they arranged to do exome sequencing. That baby had a -- has a as a genetic disorder. At that time thought it would be incredibly rare. And that family started a foundation and three years later there are 10 compounds in clinical trials for that for that condition."

[01:03:06] Dr. Kwaja: "So I am always amazed about what the power of patient -- patient families can actually accomplish. Because of course it's top of mind every single moment of the day for them. You know. That just that focus and drive is an incredible multiplier actually for it to get drug development activities off the ground."

MCARTHUR VO:

And in our first visit to see Ronni Cohn after we get our diagnosis, he offers us hope that some day there might be a cure for Bryson.

He tells us about a new scientific discovery that allows scientists to rewrite human DNA. This new technology -- CRISPR -- gives doctors the ability to take a gene with a disease-causing mutation, and replace it with a healthy one.

Dr. Cohn tells us it’s not ready for use on humans yet. But maybe, ~~just maybe,~~ CRISPR could be used to cure genetic mutations like the one that Bryson is suffering from.

The one that finally has a name... GRIN1.

We're going to hear more from Ronni in the next episode when we talk more about CRISPR as a potential cure for Bryson.

But for now, let me jump forward in time and share a couple updates about Dr. Ronni Cohn.

First, in 2019, Ronni was named chief executive officer of Toronto's Hospital for Sick Children. The young student who was initially rejected from medical school for wanting to focus on patients instead of research is now leading Canada's largest children's hospital.

As a family that has been in touch with this kind and patient-centred doctor for more than a decade, we couldn't be happier.

Second, a few weeks ago, Laura and I received an email from our friend Ronni. The subject line reads "something I want to share with you

Ronni reading: "Dear Laura and Keith, I hope this email finds you well. I am reaching out today to share a very personal experience with you. I am not sure whether I ever mentioned to you the reason why I have decided to go into Paediatrics and Genetics. 27 years ago, our closest friends had a boy, who had severe developmental delay (more severe than Bryson), and who was initially diagnosed with a "mitochondrial disease". Today, my friend called me from Switzerland and told me they diagnosed him with a GRIN1 mutation. You can probably imagine that this is the closest I have ever been personally to experience what it means to establish a diagnosis after so many years. Anyway, I hope you don't mind, but I just had to share this with you, given the history and connection we have. Very warm wishes, Ronni."

MK: That's Episode 2 of the CBC Podcast, Unlocking Bryson's Brain. Tune in tomorrow for the continuation of this story. Well, that's our program for today. Stay tuned to Radio One for Q Author Stephanie Meyer returns to the world of Twilight with the long anticipated, Midnight Sun. That's a retelling of her debut novel, Through The Eyes of Edward Cullen the Vampire. She'll sit down with the mighty Tom Power to talk about all the juicy details. CBC Listen is the free app that lets you discover the very best in Canadian audio from CBC Radio, CBC podcasts and CBC Music. Listen to The Current live from anywhere on your phone or tablet and catch up on our show highlights on demand any time. We'll leave you this morning with a song from the soundtrack of the Twilight film. This is "Full Moon" by The Black Ghosts. I'm Mark Kelley. Thanks for listening to The Current.

[Song: "Full Moon" by The Black Ghosts]

The Current Transcript for August 4, 2020

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