A son shows his family the way home in Love, Hope and Autism

By Louise Kinross

Robert Fresco is a professional filmmaker, so when his twins Fraser and Hallee were born, it was natural that he’d turn the camera on them. His exquisite home movies are the backbone of Love, Hope and Autism, a CBC Docs POV piece. The film covers the family's idyllic early days, the unravelling of Robert's marriage to Shannon Wray when Fraser is diagnosed with autism, and how the family regroups to co-parent with the addition of Shannon's new partner Tim.

'Hope' is in part a reference to Hope, B.C., the town, surrounded by mountains, rivers and lakes, where the kids lived with Robert for a couple of years. The film begins shortly after the twins’ birth in Ontario and culminates with their 21st birthday. BLOOM interviewed Shannon about what she hopes viewers take away.

BLOOM: I felt so much emotion watching this film. I pulled it up thinking I’d watch for five minutes, and I couldn’t stop. What was it like for you to watch the film?

Shannon Wray: It really evoked a lot of emotion around when Hallee and Fraser were little for me. Seeing the magic of movies, that slow-motion piece of Fraser staring at the farm, it really took me back to that moment of ‘wait, something is not right,’ and that first inkling of fear. On a certain level I wanted to say ‘no, we’re going to freeze frame here and take a different path.’ I had really profound feelings watching Fraser become autistic in the film.

BLOOM: Was it a difficult decision to make the film?

Shannon Wray: The really difficult parts of the film for me were when Fraser was lost on the mountain and his accident last summer. I had pictures in my mind of what that might have been like, but I wasn’t there, and I didn’t see it at the time. To be put back in that situation in such a visceral way was very difficult.

BLOOM: Yes, it’s unusual that you would have footage of Fraser in Emergency, but as Hallee noted, the camera was almost like a pair of glasses to Robert.

Shannon Wray: (Laughs). Until the nurse told him to turn it off.

We screened the film with Fraser recently and his responses were really interesting. He’s used to seeing footage of himself when he was a kid, but when I became emotional about his diagnosis in the film, he became very agitated and started saying ‘It’s okay, it’s okay.’ When Robert got emotional, he had the same response. He didn’t want us to be that upset.

When he saw the first frames of the waterfall where he got lost, he said ‘That’s dangerous, I don’t want to go there.’ We’ve never known where he was or what he thought, because he’s never been able to communicate it to us. He also said ‘It was so dark and I was very scared.’ When the first shot of the stretcher appeared he got up and left the room.

He came back and at the end of the film he said ‘My family all love each other.’

BLOOM: That really struck me watching the film. That the family is reconfigured, but there is still so much love. The scenes where Hallee is interviewed are very candid. Did she have any hesitation about participating?

Shannon Wray: She did a bit, but it was really interesting. After the years she spent in Hope with her dad, she became very emotionally closed off, and it was a long journey for me to get her to open up again. As we were approaching the film interviews, she said ‘They’re going to rip me open, and I think it’s time.’ She’s a very thoughtful girl. She knew she was sort of frozen up inside. and this is what it would take to get over it.

BLOOM: What do you hope viewers take from the film?

Shannon Wray: Robert and Tim and I have parented together as a pod for many years—across borders and across boundaries. Through shattered relationships, we’ve taken the shards of our experiences and put them together into something unique and loving. That’s what I wanted people to come away from the film with. That even if primary relationships can’t be sustained through the stresses of living with a differently abled child, there’s still a way to put a family together out of all of that.

The other narrative that isn’t talked about enough is how much of the oxygen was sucked out of the room for Hallee, for the sibling.

BLOOM: Were you aware of how left out Hallee felt when your kids were living with Robert in Hope?

Shannon Wray: Hallee and Fraser were the same age and quite interdependent, so on one level, because they’re twins, we always had this feeling that all they needed was each other. Something the film didn’t explore was that one of the reasons I wasn’t there in Hope was that I was taking care of my sister, who was dying of terminal cancer. I knew Hallee really needed me, but I had made a commitment to be with my sister till she died.

BLOOM: Can you describe Robert’s relationship with Fraser?

Shannon Wray: Because Fraser couldn’t latch and breast feed productively, and had really bad digestive issues, the doctors told us to get him on a bottle. As soon as he went on the bottle, Robert became his primary nurturer, because I was breastfeeding Hallee.

So Robert would sit and feed Fraser, and Fraser became more bonded with Robert, and they continued on with that bond. Then, as Fraser grew, Robert became incredibly fascinated by him because Fraser was very different. He followed him more with the camera than Hallee. What we realize now is that he recognized some aspect of himself in Fraser, too.

BLOOM: Yes, I remember one part in the film when Robert says he thinks he’s on the spectrum.

Shannon Wray: Not having to talk and be emotionally engaged at a deep level with Fraser was very freeing for Robert. He and Fraser just loved being in one another’s presence and doing things. They’d go on bike rides or canoeing. Fraser feels so free when he’s riding a bike. And he loves the quiet of the paddling in the canoe. From a sensory level it’s very still.

BLOOM: There’s a part in the film where you’re living away from the family and your young daughter calls and says her dad isn’t around and she doesn’t know where he is. Was Robert just absent-minded, or was he having other issues?

Shannon Wray: This is where a diagnosis of Asperger’s would make a lot of sense in our lives. Robert would get an obsession of some sort. That time he had seen an ad for a car he was interested in on Vancouver Island, and he left the kids and went to look at the car. It took him a few days to figure that out, during which time the kids were at home with no ability to cope for themselves.

BLOOM: Looking back, is there any advice you’d give parents about the impact of a child’s autism, or other disability, on a marriage?

Shannon Wray: When Fraser was diagnosed it felt to me like that was the time for us to really pull together, dig in and figure out what we needed to do to help Fraser and Hallee.

But Robert went into ‘Oh well, Fraser is Fraser and that’s fine. It’s all going to be okay.’ I went in to research overdrive—where do we find services and what do we do? I was trying to form a strategy about how we would get through this, and I felt very much alone.

BLOOM: I think that's very common, that people cope with a diagnosis in really different ways. I know in our family, my husband always felt I was over-reacting about things, and I always felt he was under-reacting.

Shannon Wray: Yes, one parent becomes the over-functioning one, and, as a result, the other becomes the under-functioning. They can’t figure out where to jump in. Instead of making room for Robert, I was like ‘I’m going 90 miles an hour this way, if you can keep up, hang on.’

BLOOM: How did you manage to stay so connected as a family after you and Robert separated?

Shannon Wray: In most cases it doesn’t work out that way, because so much anger and resentment builds up. One of the things I didn’t want was for my children to experience a lot of conflict between their parents. It wasn’t avoidance—I didn’t just swallow my feelings and shut down. I worked very hard to be a friend to Robert, and he worked very hard to honour that friendship, too. And when Tim came into our lives he tried to find his way into the family very gently and was very respectful.

BLOOM: Where is Fraser now?

Shannon Wray: He’s with us in Southern California in a tiny mountain village where Tim and I both grew up. He goes to school in the town at the bottom of the mountain. He’s 21 and finishes school in June.

BLOOM: Are there any program options for him after school?

Shannon Wray: No. The way that people with disabilities are managed in California is through regional centres, and the one we’re associated with is where the San Bernardino massacre happened. They manage almost 35,000 cases, and the programs are overwhelmed and underfunded. If we stay where we are, we’ll be on waiting lists, which is what happened when Fraser was little. We’re probably going to need to move to another state. If we aren’t able to commit to a job skills training program, we’re probably going to have to try to fund some sort of co-op program with other parents ourselves.

BLOOM: It’s incredible what falls on families. I know some parents are able to create businesses for their adult kids, and they devote their lives to the business. But not everyone is able to do that, for many reasons.

Shannon Wray: I know several parents who took out loans to set up a coffee shop and bakery. Their children were involved in baking, serving coffee and making and selling crafts. It was very creative. But when the parents got into their '70s, they burned out. They couldn’t do it anymore, and they couldn’t find younger people who had the desire and will to make it sustainable. There is an endpoint.

BLOOM: I understand that Hallee has agreed to be Fraser’s caregiver in the distant future. How did Hallee come to that understanding?

Shannon Wray: Hallee has always understood that she will ultimately be Fraser's caregiver, eventually. That's her choice, it's not something that we've told her she has to do. In fact, we've consistently told her that we will do everything we can to ensure that she has her own life, without Fraser, for as long as possible. The only promise I have asked of her is that she will do everything she can to keep Fraser from being in an institutional setting. Hallee was about 17 when she told us that she would be responsible for her brother.

Canadians can watch the entire film Love, Hope and Autism on CBC Docs POV.

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'I was afraid to make a mistake, so I hid behind the camera'

By Louise Kinross

Sweet Dreams for Chiyo is a film that follows the Ehara family when their toddler Chiyo is diagnosed with Type 1 diabetes. Parents Rhiana and Kaz are filmmakers, so Kaz gets behind the camera as the family—which includes Cai, then three months—adapts to checking Chiyo's blood sugar around the clock and counting every carbohydrate she eats. Missing a hypoglycemic episode—when blood sugar dips dangerously low and the person requires immediate sugar or a high-carbohydrate snack—could be deadly. The film follows the family over a six-year period and airs on CBC on Sunday, February 4 at 9 p.m. BLOOM interviewed Kaz about his role as dad and filmmaker.

BLOOM: Why did you initially begin filming your family when Chiyo was diagnosed?

Kaz Ehara: I think this was my initial coping mechanism. When something unknown happens to me or my family, I often capture it by image. I trained as a photojournalist. I have a Japanese family and when my grandfather developed dementia I started filming as a way to understand what was happening more objectively. I discussed with Rhianna capturing our daily life, and I think we also used the filming sessions as an outlet to express our fears and feelings. A lot of the interviews were conducted at night after the kids went to bed.

BLOOM: We quickly see the strain in the film of monitoring, weighing and recording everything Chiyo eats, and late nights where Rhiana is still awake at 3 or 4 in the morning. I think it’s common in families with chronic conditions for the mother to jump in and become the expert and do all of the health-related tasks, and it’s sometimes harder for dads to find their role.

Kaz Ehara: Rhiana was dealing with the daily treatments so beautifully, and she was definitely comprehending the situation much better than I was. I started losing some confidence, especially in the beginning. With Type 1 diabetes, the stakes are high. If we miss one check at night, it could be fatal. The fear was there. I think mainly I was afraid to make a mistake, so I hid behind the camera.

I think I said in the film that, without realizing it, I started to abuse my position. I was obsessively filming, because that became my coping mechanism.

BLOOM: Well, I think that’s understandable, as it was something you could do well.

Kaz Ehara: I started adding more pressure on Rhiana and now I know it was wrong. I was a filmmaker, and if I’m filming, I’m working. That’s how I justified my actions when I wasn’t supporting her enough.

When Chiyo was born, I changed diapers and fed her and was able to be independent with her. I would compare that with my childhood in Japan with my father, who left for work early in the morning while we were asleep. Because I’m self-employed, my hours are much more flexible. In comparison I thought I was doing really well.

But when Chiyo’s illness hit it put a lot of stress on the family. I didn’t realize the family was close to falling apart. When Rhiana would cry for help, I couldn’t hear her voice, because I was too busy listening to my own inner voice thinking ‘I’m also tired and I’m also working hard.’ I would keep filming, but without any desire to actually watch it.

One day my friend asked how things were going and I decided to watch some interviews. They were emotional and capturing Rhiana’s feelings. It was almost like watching someone else’s life on the screen in a very objective way. I had no baggage attached to me. My inner voice wasn’t there, and I suddenly realized ‘Oh my gosh.’ I felt a pain. That was the turning point. I wanted to change.

BLOOM: Did you or Rhiana have contact with other families whose children have Type 1 diabetes? I don’t recall that in the film.

Kaz Ehara: We had some mixed experiences with that. Our primary reason to get in touch with parents in our community is to get the latest information on technology. We decided that to keep a happy family, we couldn’t let diabetes becomes the main priority in our life. If we started fixating on diabetes care we would neglect our relationship as husband and wife, and as parents. We had very limited mental space in our brain and, for us, we needed some distance.

BLOOM: So you didn’t want diabetes to become the only focus.

Kaz Ehara: I think the word has a strong power and if you talk about certain things over and over again, that becomes part of your identity. We didn’t want our daughter to feel like her identity is with diabetes. We wanted to focus on who she is, and the diabetes is always there to come along with her. We never neglect diabetes or ignore it. But we needed to keep a healthy distance for our sanity, and so we can focus on the bigger picture of keeping our family as happy as possible.

Maybe we are unique in that way. We didn’t want to be 'diabetes parents.' We wanted to be parents first. We have another son who doesn’t have diabetes and we needed to have a bigger perspective than that.

Rhiana was very insightful in that her parents got divorced, while my parents stayed together. I didn’t know the warning signs for divorce, but she said family begins with a strong healthy couple as a foundation. If we neglect our relationship, then the family shakes. When our family was almost falling apart, I was only caring about my sanity and making excuses. I’d say: ‘We don’t have time to go out for a bite’ or ‘We can’t hire a babysitter that we can trust.’

Since then, we started increasing our comfort zone, and suddenly we discovered a babysitter who has Type 1 diabetes. And we started to see that when we changed our attitude, things we thought weren’t possible were. Recently our family went to Mexico for two weeks backpacking in a rural area. It took a lot of preparation, but our world is widening again.

I think I didn’t want to be part of a parent group that was focused only on diabetes.

BLOOM: In one of the scenes in the film, Chiyo needs her insulin pump changed right away—rather than at night when she’s asleep. And she’s crying and hides under the table and begs her mom not to do it. Even your dog Ruby looks really upset. How do you manage those moments when you need to do something that hurts Chiyo, but that in the long-run is necessary to her health?

Kaz Ehara: I was afraid and I had no idea what to say to comfort her. I think I was hiding behind the camera. And even I looked at my little son that day and observed he was much more of a brave participant than I was.

BLOOM: Do you and Rhiana do anything specific to cope with stress?

Kaz Ehara: We try to exercise. Now, I’m able to be independent when it comes to the diabetes care, so we try to give each other space as much as possible. For example, Rhiana went to Guatemala to see her friends who were teaching there. And I went to Japan. Our coping mechanism is to see the world as bigger than ours. We had to come to the realization that what we were dealing with is not the end of the world.

Another thing we try to do is not to fixate on doing everything perfectly. There are over 100 factors that can affect blood sugar, including hormones and emotions. We can’t be reactive to each little incident, but try to see more of the bigger picture. We need to tell each other we’re doing a good job.

BLOOM: The film covers diabetes from a sibling perspective. We can see how knowledgeable Cai is about his sister’s care, and how he often tries to comfort her. But we also see him feeling sad and resentful because Chiyo gets candies as ‘medicine,’ or seems to get more attention than he does. Is there anything you do to meet Cai’s unique needs?

Kaz Ehara: Part of our strategy is that we try to separate the kids as much as we can. For example, we take them out separately, so Cai can have some free time and space separate from the disease.

Rhiana will also ask Cai: ‘Are you tired of being on our team?’ Because we ask him to be on our caregiving team and we need extra eyes to support Chiyo. But before being part of a caregiver team, he’s a child first, and we want to make sure we don’t screw up that priority.

BLOOM: Later in the film you take the night shift and are up till 3 in the morning because Chiyo’s blood sugar is very low.

Kaz Ehara: Usually I took the morning shift and Rhiana stayed up late, and that’s partially because she was a night owl to begin with and I was more of a morning person.

The problem is that sometimes you can’t bring Chiyo’s blood sugar level to the point where you feel comfortable to sleep until 3 or 4 in the morning. We have no idea why the blood sugar is acting this way, but we can’t leave it. If it’s too high, you worry about long-term complications and if it’s too low—this could be fatal.

It feels lonely when you’re the person most responsible. We’ve given up on the idea that it will be easy at some point. We have to accept that it is what it is. Acceptance is very key. In the early days, we kept changing technology with the hopes that it would make things easier. But we only got more data, and not the ability to analyze the data. Too much data is overwhelming, and just makes you fixate more on diabetes.

BLOOM: There’s a moving scene where Chiyo is going off to school carrying a large yellow box for her needles. And Rhiana talks about how she feels like a freak when she’s the only mom who has to stay at birthday parties to count Chiyo’s carbs. How do people who don’t understand diabetes respond to you out in the world?

Kaz Ehara: In the beginning, birthday parties were very difficult. We’d have no idea what food was going to be served, how many carbs were in each food and also, people usually serve buffet style, so we didn’t know how many portions of the items our daughter would eat. We could have talked to the parents before the party, but we didn’t want to be in the way. Rhiana created an art out of carb counting and now she can get in and out quickly.

In general, people have responded very nicely to us. We go on all of Chiyo’s school trips because the nurse can't, and we see how the other kids are helping and are curious about her condition. Chiyo’s friends are very empathetic.

One of the things we worried about is that Chiyo is in a portable outside the main school building. We worried about when she might have to walk to the bathroom, if she got weak. The school created a special buddy system so that whenever they go out of the portable, they go in twos. We are very fortunate with the people around us.

BLOOM: Are there ways that Chiyo’s diabetes has made you a stronger family?

Kaz Ehara: I think we definitely built up a resiliency and became stronger as individuals. I think we also became more sympathetic to others who have different conditions. We talk with our kids about how everyone has something to deal with. We’re not the only ones facing a challenge, and we can help other people. Overall we became stronger as a family because we were dealing with the same challenge as a team. The more experience you have dealing with conditions outside your comfort zone, the more you gain confidence.

BLOOM: What did you learn by filming the movie?

Kaz Ehara: What I learned most was that in order to see things clearly or objectively, I had to be very flexible about the way I’m thinking about myself. One of the things I try now, when Rhiana needs to talk about things, is to be almost silent inside my brain. Instead of trying to understand in my mind, I’m trying to feel her pain.

The biggest thing I learned was that she doesn’t need my advice. She’s the one understanding her situation and her coping mechanisms, but she still needs someone to feel the same pain, or share the experience.

By looking at the footage, I could see that whenever she said something to me, I would say ‘You should do this.’ Rather than giving her reassurance—‘Yes, of course you can do that’—I was giving her opinions.

So now I try to clear my mind, almost like a white canvas, so I can be vulnerable to feel her emotions. Rather than listening to my brain analyzing and coming up with a solution, I try to create a field of empathy towards her.

That’s what I learned from looking at what I was doing in front of the camera.

BLOOM: What do you hope viewers take from the film?

Kaz Ehara: I hope fathers who have a child with a chronic illness, who maybe feel their contribution isn’t enough, that they can project themselves into me and feel the mistake I made. I think mothers in our society carry much more expectations and stress than fathers, so hopefully this film will open the eyes of fathers a bit and make them think about what kind of a father they want to be.

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A play, an alphabet board, a new voice

This Is The Point is a play about two couples: a man and woman who have cerebral palsy, and a man and woman who have a child with cerebral palsy. One of the actors uses a head pointer to communicate with an alphabet board. “The play is about love, sex and disability,” says Dan Watson, a co-writer and actor whose son Bruno, 7, has cerebral palsy. He co-leads Ahuri Theatre, which is producing the play with The Theatre Centre. “The themes we circle around are love, parenthood, communication and acceptance.” BLOOM interviewed Dan to learn more.

BLOOM: Tell us about Ahuri Theatre.

Dan Watson: It was formed by me and a few other people who went to school together in France. We did a lot of physical theatre there. We worked with mask and clown and mime and tragedy. Ahuri works in Japan and Canada. We’ve done a lot of shows that incorporate different languages. When we write, we write on our feet, not sitting at a computer. We get in a space and we do improvisation and the script comes at the end. This Is The Point evolved more out of my personal life. Our older son Bruno is non-verbal and I wanted to do something that looked at language that went beyond words.

BLOOM: I'd love to hear more about Bruno.

Dan Watson: Bruno really likes rough-housing, loud music, wrestling, and going fast. His brother Ralph is four, and the two of them have fun running around with Bruno in his walker and Ralph on his bike. To communicate, he may look at things he wants, or vocalize or gesture with his arms. He uses an eye-gaze system and some low-tech tools like a communication book. We want to find a way for him to consistently advocate for himself—not just by saying ‘no,’ but by actively saying ‘I want to do this.’

BLOOM: In This Is The Point, one of the characters has cerebral palsy and uses a head pointer and alphabet board to communicate. Why did you want to do this play?

Dan Watson: Tony Diamanti is the actor who is non-verbal and uses a chair. We met Tony through another project called What Dream It Was. We invited him to work on that, but he said he wanted to do his own play and he sent us a play. I was struck by his voice, his sense of humour, his passion and his wanting to share his sexual experiences and to make sure that people know that people with disabilities are sexual human beings that live very full lives. I think a lot of people in the general public don’t see someone who looks like Tony that way. I thought this is exactly the kind of opportunity that I want to make happen. If Bruno was older and wanted to do this, this is something I’d hope someone would take on and work with him on.

I didn’t know where it would go, but we started to work on this play. We wanted all four of us to be on stage.

BLOOM: So in addition to you and Tony, there is Liz MacDougall, who is Tony’s partner in real life, and Christina Serra, who is your partner? 

Dan Watson: Yes. At first we tried to make the play the way you usually do. It was very physical, with scenes and blackouts. But it wasn’t working for Tony. We were trying to fit him in to something that wasn’t going along with the way he communicates and lives. So we started to have Tony communicate the stories himself, but then we didn’t fit in. We’ve come to something where we talk in the show and we talk with the audience and we also jump into scenes that are re-enactment scenes. By the nature of who we are, these scenes all have connection to disability.

A lot of the stories we share are, for lack of a better term, trying to normalize in a certain way disability—and sharing our lives, rather than lecturing or trying to teach people. We model the way we work together so we don’t hide the transitions that take a long time. It takes a long time to get set up and there’s nothing wrong with that, whereas we live in a society that is obsessed with speed. We’re asking people to stop and slow down and be with us and to feel that that’s okay. It takes Tony a long time to communicate because we have him talking directly to the audience and the audience has to read along with him.

BLOOM: In a trailer for the play, Christina makes a comment about how we’re not as inclusive as we think we are. Then she says: ‘You don’t know about disability until you’re opened up into that world.’ It seems like your play might be giving people an immersive experience into that world.

Dan Watson: That might just be the thing we want to have happen to an audience. When people encounter disability, it can bring up a lot of different feelings, and some uncomfortable ones. What we want to do is share and open them up to that world and show them that it’s okay that people with disabilities live all different kinds of ways. Just like anyone, they have struggles and happy moments.

BLOOM: I found it very interesting what you said about speed. Our culture glorifies speed. This is something I’ve been aware of because my son has a number of physical disabilities and he can’t move quickly.

Dan Watson: We were initially trying to fit the play into a form that was about speed. We need to move onto the next scene, keep it going, keep the energy up. Then we realized that’s not what this group is bringing, and slowing down is not a bad thing. That’s when things opened up for us. We presented it a couple of times and audience members say they feel at ease and there’s a real casualness to the show. We’re welcoming them and opening them up into our world for a moment.

Of course this is part of a bigger conversation. I don’t have any visions of everyone coming away from the show knowing everything about disability, nor do I want that. We’re just sharing our lives and our perspectives. I do hope they go away and take us with them, and that maybe we pop up into their heads in their daily lives when they need us—perhaps even when they’re encountering people who don’t have disabilities but who are different.

BLOOM: Did you have experience with disability before Bruno was born?

Dan Watson: No. I don’t think I even knew what cerebral palsy was before Bruno was born. His life has opened me up into a whole different community. I have these memories of being in school and kids with disabilities were in chairs on one side of the playground watching us. And I look back and think ‘Oh my god,’ I didn’t even think about them.

BLOOM: Have your thoughts about disability evolved?

Dan Watson: Yes, and with this show too. At first we were focused on the way Tony communicates. When I see people encounter him it’s a bit of a novelty—they’ve never seen something like that before. Then Tony says: ‘Pay attention to what I’m saying, not how I’m saying it.’ Over the course of working on this show in a funny way disability is less of an issue. The differences aren’t so apparent to me anymore. Tony is who he is and it’s only when I see other people encounter him that I go ‘Oh yea, Tony is non-verbal, yet I forgot in a funny way.’

BLOOM: I think having a child who doesn’t speak conventionally is challenging because verbal speech is so prized in our culture.

Dan Watson: It is really hard. There’s constant pressure from outside in terms of how Bruno interacts with people. There’s a scene in the show where I’m on the playground and that’s always a big challenge because Bruno and I go to the park all the time. We go on the accessible swing and I’m always having to negotiate with kids who want to be on the swing. And explain to them who Bruno is and why he can’t go on the other swings. You have to be this advocate and do all this explaining when you just want to hang out on the swing. Then you also wonder—what does Bruno think? I’m sure he knows this is going on.

We were just talking this morning about subtle communication things that you know with your child that other people don’t know. You probably see this with Ben. It’s hard when you can see what’s going on but others can’t seem to see it.

BLOOM: What’s been the greatest challenge of producing this show? Was it altering it from a traditional format?

Dan Watson: Yes. But that’s also the artistic—that’s what artists need to do is push beyond what they know, and that includes disability but also how you make things work. Usually people who don’t have disabilities are cast as characters with disabilities. That’s because it’s easier for the show—and the way the show is done.

But if you take a step back and say no, we’re working with people who are differently abled on stage, there are a lot of opportunities that present themselves. That’s really exciting as an artist. Instead of doing it the same old way you’ve always done it, it can generate amazing, different work that you’ve never seen anywhere else. It’s all about who’s in the room. Sometimes that’s a challenge—it’s taken a long time for us and trying different things. But the challenge is actually part of the reward, as well as what’s really engaging.

This Is The Point runs from Nov. 4 to 20. Book your tickets here. Photo below of Dan Watson, Christina Serra with their children Ralph and Bruno. 

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'Travelling, side by side, through these villages of grief'

Charlotte Schwartz (above right) holds Isaiah, 4, with husband Seth and Rivers. Isaiah has a rare metabolic disease called Galactosemia, which is associated with speech and motor delays as well as seizures. Isaiah is diagnosed with autism and global developmental delay.

"My husband and I were only married a year before Isaiah was born," she writes. "We had virtually no time to just be us before we had this beautiful baby, and then everything changed again days later when he fell ill."

Here she shares a letter to her husband that reflects "how tremendously challenging having a child with various problems can be as it relates to a marriage." You can follow Charlotte at Running On Borrowed Legs or on Today's Parent: 'I worry my special-needs son is lost in the school system.'

By Charlotte Schwartz

My dearest Seth,

It's time I committed these thoughts to paper.

I feel like we've been on this road much longer than we actually have, don't you? Doesn't it seem like since forever that we've been travelling, side by side, through these villages of grief and hamlets of sorrow?

We're both so irreparably tired that all but a few things have ceased to make sense. Basic concepts are easiest for us, anything more complicated is a challenge we seem all too weak to face. I feel like we love each other, so much still, but we are silent on that subject most of the time, favouring constant action and continual, often circular motion over idling. 

But I remember that there was a time—not so long ago—when our contact amounted to much more than a brushing of cracked, dishpan hands across a sink full of dishes or another e-mail exchange about Isaiah's appointments, therapies, fundraising or schooling. Indeed there was a time when "we" were the sum of our respective parts; complementary pieces in a giant puzzle and people we were proud to be. There was a time when we were both chasing dreams for our individual and collective selves that extended far beyond just getting to the end of each week. 

I remember that not so long ago our lives were more than a game of schedule-checkers—arguing about whose appointment trumps whose commitment when considering Isaiah's scheduled assessments, therapies, school meetings, and life. It was full of promise; of a connectedness I had never known before, of  a will to work hard for one another and to never be satisfied with less than our respective best. But now less is the best we can give. 

There was a time when, just five years ago, we promised to stand by each other through whatever proverbial "thing" may come our way. We said I am my beloved's, and my beloved is mine. 

But things have really shifted, haven't they? Because we belong to these boys now: I belong to my insurmountable sorrow and you belong to that place in your mind that you retreat to so frequently.

We belong to long days and erratic sleep patterns and brains that won't quiet themselves. We belong to the vice-like grip Isaiah's diagnoses have on our lives. Our options, which at one time seemed without limits, have dwindled unexpectedly. Altering the status quo could irretrievably upset the "balance" that we have worked so hard to find, ignoring how damaging that balance is to the concept of "us".

Our boy came into this world just two weeks after our first wedding anniversary; I was 28. I loved you on the day we were married but I loved you again on the day Isaiah was born. You became something new to me—a dad who I knew would do right by his son. A dad who I knew would redefine the term for me and never give up. Always being best, better. 

But a week later we found out he was sick. A rare disease, no less. 

No treatment. No cure.

Questions without answers, nights devoid of sleep, silent screams into oblivion and painfully blank stares that we pierced each other with. In those moments, despite our promises of abundance in love and life, we had nothing to give to the other. Nothing but silence which you needed but which felt like it was slowly infesting my life and weaving throughout my body like a poison.

Five years later, since his arrival, we still find ourselves silent often. My grief has become an immovable fixture; a hurdle over which I cannot leap, a brick wall I cannot scale. It seems it will always be there. 

But as you would, you have dealt with your grief differently; like a scientist. You took your grief and converted it to an energy, a fuel. You composed an orchestral piece comprised of studies and statistics and words so meaningful that they mean nothing to so many people. You have conducted your life despite all of this, while I have voluntarily laid mine to rest. My best years, I tell myself, have come and gone. At 28, the rest of my path was forged and predictable and banished to a balancing act of maintaining composure, of being strong for everyone else, and of slowly falling to pieces on the inside and knowing, inherently, that may never be fixable.

And while I stay strong, I admit that over these last five years I have given up more than a hundred times. I've given up on you. I've given up on Isaiah, on our home, and on myself. I've given up on us, on holidays, and on some of my life's objectives. My immovable grief became so burdensome that I had no choice but to throw in the towel and accept that life had handed me lemons, and that try as I may, I don't really like lemonade.

So it's no wonder that as many as 85 per cent of parents of children with "special needs" divorce, is it? His diagnosis belongs to all four of us and because of it, in many ways, we are forced to live alone, together. 

It is a life that needs two people, and two people who must be happy dividing the mundane and conquering to-do lists. It is a life where progress is so rarely made that when it is, we are cautious and apprehensive. We do not celebrate it because it may not be real.

But as I promised I would on that day we were married, when I give up, I always pick up and start again. My fatigue-driven capitulation is often short-lived and my brand of drive is renewed, if only for a while. It is in those short bursts that I can see your smile on our wedding day. I can see the hands I held at the altar. I can feel the hands on my shoulders when we were dating that were tentative and exciting. But those bursts are so painfully short; the reel breaks and we are thrust back to reality. 

My dearest Seth. I am so sorry that things have turned out this way, though I know I don't have to apologize. Nothing is any one's fault. Not really. But when there is nothing left to say an apology seems an appropriate concession; when we have lost the ability to say the words we would give limbs to hear our boy say one day—I love you. 

I know now that love evolves quickly and adapts to meet changing demands. Our version of love may not play out the way it does for our peers; indeed, it is almost exclusively devoted to the needs of our boy. Our love is expressed in quiet subjugation, in keeping appointments, in sending "How are you?" text messages mid-day when you know the answer will always be "Could be better." Our love's currency is reliability and sameness where all other variables are at frequent risk of changing. And if those things don't constitute love in our circumstances, then I'm afraid I know no other way. 

I want you to know that though we never seem to have moments or opportunities anymore, that in much the same way I did before we were married, I gather my strength in the latest hours of the night when we retire to bed and when, for those few brief moments, you are close enough to me that I can breathe you in. 

It is moments like those that fuel me more than any verbal exchange could; where so much has happened that so many words mean so little. 

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