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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These parents took a year off to learn to 'speak Oskar'

Photos by Alia Youssef

By Louise Kinross

Beyond The Spectrum is a candid, captivating film about autism that pushes you to think and see in different ways. It follows parents Carly Harnadek and Stef Pronk when they take a year off to do therapy with their son Oskar, who was diagnosed with severe autism at age two. Oskar has a twin sister, Izzy, and three other siblings, including older brother Ted, who has autism. The family lives in Simcoe County and homeschools their children. BLOOM spoke with Carly to learn more about why they made the film. Beyond The Spectrum is directed by Steven Suderman and can be watched in its entirety on TVO at the link above.

BLOOM: Can you tell us a bit about Oskar now?

Carly Harnadek: He turned five last month and he still enjoys his books and playing with toys, some of which aren’t age appropriate. He loves being outside—anything involving slides and swings and being in nature. He loves going for walks, walks in the river, and car rides. He likes hanging out with his siblings. He more observes them still—there are four of them. He’s finding his place in the family now, and coming into his own, and we’re waiting to see where his interests lie.

Unfortunately, his expressive language is still slow. He has good days when he can use single words for his needs. He has over 50 words. Mostly nouns and verbs from all of the labeling we do as parents. The words don’t always seem to come.

BLOOM: Does he communicate in other ways?

Carly Harnadek: He’s getting better with direction and pointing and in some ways, we know him really well. We speak Oskar.

BLOOM: You can interpret him.

Carly Harnadek: Yes. His receptive language is really good. As soon as you say ‘did you want to go outside?’ he’s at the door, or ‘are you hungry’ and he’s in the kitchen.

BLOOM: It’s unusual for two parents to take a year off to work with a child.

Carly Harnadek: I’m not going to recommend it, unless you have a money tree in your backyard. You see me at the beginning of the film calling about respite and Intensive Behavioural Intervention (IBI) and Applied Behavioural Intervention (ABA), and everything has a wait list.

BLOOM: Yes, I remember in one case you’re told it will be a three-year wait.

Carly Harnadek: That was for IBI. We live in Simcoe County, which was one of the most underfunded at the time. I thought, do I fight the system and see where we get? It was a crap shoot. I thought we can spend all that time and energy and money, or we can do it in reverse. You don’t have the income, but you’re not paying for all of the supports. I needed to know that Oskar was getting the support and I wasn’t wasting my time with paperwork, I was spending it with Oskar. My husband has his own business and we were homeschooling. Of course it’s something you can only do for so long. It was a gamble, to see how far we could get in a year.

There’s been a bit of a backlash, with some people feeling I’m saying parents shouldn’t do IBI, when there’s so much advocacy here about getting it and the wait lists. My thing is there should be choice. It’s not a one-size-fits-all approach. When Ted was diagnosed with autism we were living in the U.S., and we learned about all of these different therapies. Behavioural-type therapy like IBI is what’s touted here, but it’s not necessarily everywhere. We were told that for very young children, play therapy was the best. And Teddy made huge gains with it.

BLOOM: Is that the Floortime approach?

Carly Harnadek: The program we used was called Communicating Partners, but it had its roots in Floortime.

BLOOM: In addition to play-based therapy, what were the other things you did with Oskar?

Carly Harnadek: We did biomedical treatment, so Oskar had a gluten and casein-free diet, and then we removed other things like sugar. He did sensory integration therapy and astronaut training and therapeutic listening.

BLOOM: In the early part of the film, Stef expresses hope that Oskar will catch up to his twin Izzy. What were advantages, or disadvantages, of Oskar having a twin, or his older brother Ted with autism, in terms of how you understood Oskar?

Carly Harnadek: In the beginning of the film, you see how one child is progressing along the standard milestones, and the other child isn’t. Even later, when Oskar did certain things like crawling or walking, he never did them to perfection like Izzy did. This keeps building, and he ends up getting farther and farther behind. Even though Oskar and his brother Ted present differently, having Ted gave me hope for what can be, and it also reinforced how important it is to really observe your child. The more you know your child, the better you can advocate for them.

BLOOM: When I was watching the film, I was thinking that as a parent it would be hard to have one twin speeding ahead and the other not.

Carly Harnadek: It is hard, you’re totally right, as Izzy gets older and older and does more and more. On the other hand, she’s an excellent modeler and Oskar really watches her. As parents, it can be hard with twins, because you have that feeling that one has gotten all of the extra attention—good or bad. But because Izzy has older siblings, they act as surrogate parents as well.

BLOOM: Can you describe the tension between you and Stef around whether Oskar’s autism needs to be accepted or changed? I think that’s a universal theme for parents raising children with any disability. At one point in the film, you liken it to parents who try to turn their gay son straight.

Carly Harnadek: Stef and I do come at autism differently. Ted is not Stef’s biological son. My first husband passed away, so that was a journey I had with another partner. To me, my boys' brains are wired differently from the start, and it’s a part of who they are. Stef feels more that things have happened to Oskar, so you’re looking at trying to fix or undo something.

BLOOM: Where do you and Stef sit now?

Carly Harnadek: We still have the same sort of feelings. I feel it is a part of who my boys are, and that society can label it however they want. Stef still feels it’s something that happened post-delivery. I’ve been in it longer, and met a variety of kids and adults with autism, and I know this is a really long journey. It will unfold however it will unfold. Stef's benchmark was Ted, so he saw it as a shorter journey. Stef was always the newer parent and I was the longer-journey parent. But we’re meeting amazing families and kids and over the years your perspective changes and evolves.

BLOOM: In the film, Stef is very focused on speech.

Carly Harnadek: Oskar has over 50 words now, but Stef would say communication with Oskar is what’s important, and that happens in lots of different ways. Now Stef wants Oskar to have something he’s passionate about. It’s funny, how a sense of communication is always a goal, but it’s changed from wanting words to ‘I want my child to be passionate about something.’

BLOOM: One of the adults with autism in the film makes the point that many stimming behaviours are a way for an autistic person to calm themselves, so they’re adaptive. But because of our social norms, they’re not acceptable.

Carly Harnadek: First of all, it was amazing to have adults on the spectrum acting as the voice of reason through the film. I feel so much that as parents we can learn from adults or teens that have experienced the journey firsthand.

Last year, Oskar went through a really rough six months where he was shredding paper like crazy—books and everything. If we had said ‘no shredding paper’ and focused on the behaviour, and eliminated it, we wouldn’t have gotten to the root of the problem, which ended up being inflammation issues.

BLOOM: At one point in the film Stef says that the work you do with Oskar could mean the difference between him being independent one day or institutionalized. 

Carly Harnadek: I think for us, that was part of why we took the year off. We thought ‘why are we going to rely on professionals and the system to help our child—when they get around to it—when we can take the reins and say we’ll do whatever we can?’ It was a waiting game that we didn’t want to play. 

BLOOM: When I was raising my son with disabilities, I think I felt like I had control over his outcome. And it was really hard for me to acknowledge, during his teen years, that I didn’t. I thought that if I worked hard enough and did all of the therapies and went to the moon and back for him, he would make a certain kind of progress.

Carly Harnadek: At the end of the day, I think we need to be able to say that we did the best we could, at that time. I think of Joseph Campbell, who says ‘You have to give up the life you were planning in order to have the life that is waiting for you.' The people you meet and the experiences you have with a child with special needs, you can’t get that with neurotypical children. After my first husband passed away, I realized life is short. You don’t know how much time you have. If you can live every day to the best of your abilities in that moment, and really cherish those little things, I feel at the end of the day you will live a life worth living. That’s what I’m trying to do for all of my kids.

With the autism and the homeschooling, I feel I’m on this path of life that yeah, sure is hard at times, and harder than living conventional, but it’s so much more enriched. You meet people, and I tend to have conversations with people, that I don’t think I ever would have had otherwise.

BLOOM: You get more real.

Carly Harnadek: Yes. You have to almost walk the path. That’s why we started our website The Muddy Path. We’re not walking on the sidewalk, with the majority of people.

BLOOM: How did the idea for the film come about?

Carly Harnadek: It was ours. I really felt there wasn’t anything out there for parents. There are lots of amazing books and blogs, but they take time. I thought wouldn’t it be great for families to be able to show a teacher or another family member or friend a film like this, and say ‘this is what I’m going through and I really need your help and support and understanding.’

We also wanted parents to not feel alone, and to have the idea of ‘that’s something I could try.’

Our idea was to have a bunch of families with different kids with special needs. We wanted to show how much effort and support is needed to raise a child with special needs—to create your village. We contacted Steve Suderman and took him some footage we’d taken as an example. He sent it to TVO. Then they decided to just focus on one family and follow the story for a year.

Being a little bit cocky, and naïve of what the process would be, we said yes. Steve came every three weeks and would stay from three to five days—the longest was seven. He stayed at a hotel or B and B, and he came every day at breakfast and stayed into the evening, sometimes till 11 at night. He wanted us to rehash the day, so we had to wait till the kids were in bed. He took over 250 hours of film.

BLOOM: Wasn’t it hard to have a camera in your house during such intense periods? I’m just thinking of how I often felt like parenting a child with a disability showed up all of my inadequacies. 

Carly Harnadek: That’s why we needed a break after we’d been filming for four months. Things weren't going well and the kids were frustrated. I felt like this massive failure and hypocrite. I felt I was going to be this huge let-down to parents.

We got worried about what Steve was going to show. Was he going to show us as these failures who didn’t want to get services for their kid? What did that mean for our family? The questions Steve asked us were quite private, and the discussions Stef and I had were the kind you’d have only with your spouse.

While we took time off, Steve sent us footage of things he’d been working on and told us about research he’d been doing. He’d been reading NeuroTribes.

BLOOM: By Steve Silberman.

Carly Harnadek: Yes. We were all reading his book and were inspired by it. We had huge discussions about it, and we decided we wanted to bring some of these things into the film. The break gave us a time to say that we wanted to change some things up, and we regained our confidence.

Now with the movie coming out, therapists and anyone who knows someone with autism—they're all loving the film. We hear things like 'I'm going to show it to my mother-in-law, and then she'll get it.'

A small group of parents feel that we're these privileged people who can take time off work: 'Who do they think they are—super parents?' They take the film as a recipe. That wasn't the point at all. We couldn't maintain that. Parents do need support. They do need to have a village to help with their child. You do need to have a coffee, so you can decompress because you just lost it.

I think most parents will in some way connect with us as a family. It is a daily struggle. You don't know what you're doing. As Stef says, you don't know if you have a road map. You're shoved into the abyss to figure it out for yourself. There's that initial fear of how am I going to do this? I can't do that.

BLOOM: At the end of the year, your thoughts on what's important about communication change. Can you explain?

Carly Harnadek: In the beginning, my biggest fear was that I couldn't connect with Oskar. Even though I could still squeeze him and give him a hug, because he didn't have high sensitivity to touch, I wanted to know that he knew that I was his mother, whether he could say it or not. At a certain point in the film, I said I didn't want him to be this talking robot. Ted always feels that he can come to me if he needs a hug or wants to be understood. And I wanted that for Oskar. The bigger goal was to know that Oskar and his mom had sort of found each other.

BLOOM: What did you think when you first saw the movie?

Carly Harnadek: I got to relive it, but as an outsider. I was always doubting myself. How much am I doing? And all of these mother guilt things. I think for me, when I got to the end of the film, I could say yes, I am doing a pretty good job.

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Filming autistic swim team changed mom

By Louise Kinross

Swim Team is a feature documentary about the sense of community and joy three youth with autism experience swimming on a competitive team called the Jersey Hammerheads. It’s also the story of their parents and their extraordinary efforts to support children who have been written off by professionals and shut out by other families. The film was part of the ReelAbilities Film Festival in Toronto this month. BLOOM interviewed director Lara Stolman.

BLOOM: Why was it important to you to do this film?

Lara Stolman: I’m the mother of a child with autism myself. I was searching for swimming lessons for my son and I found this amazing story.

BLOOM: That’s so interesting, because I assumed as director that you didn’t have experience with autism.

Lara Stolman: I don’t think I would have seen it the way I saw it, and I don’t think I would have been granted the access I achieved with the families, if I hadn’t been the mother of a child with autism.

When my son was little he had no fear of water. When he couldn’t swim, I was worried he would just wander off and jump into a lake or pool and drown. I found Coach Mike and his wife Maria and they told me about their plans to start their own team. So from a story standpoint, I was there at the beginning, which was great.

BLOOM: The film includes many private and candid moments with the boys and their parents. For example, in one scene Robert, who is 16, learns he has autism. How did it work out that you were present for those?

Lara Stolman: I appreciate that question. It’s part of a documentary filmmaker’s job to gain the trust of the subjects. But in this case it was much easier to get to that point where everyone was comfortable with me, and willing to let me come into their lives with cameras, because of who I am as a parent. We had so much in common from day one.

BLOOM: Some of the most moving parts are when the parents talk honestly about raising their child with autism—including how isolating it is for them and the pain they feel when their child is excluded. What did you learn from the parents?

Lara Stolman: Being a parent of a child with autism I came in knowing a ton, but I still learned a lot. One of the reasons I felt so compelled to make this film was that as much as I had in common with these people, there was something I didn’t have in common: their positive outlook and their willingness to have high expectations.

I had come from a place where professionals said so many negative and terrible things about my child’s prognosis. I don’t think that’s unusual. Doctors tell parents of kids at the age of two or three that your child is never going to college, your child will never speak, your child will never take care of himself. When you hear that repeatedly, it’s extremely discouraging and defeating and can really impact the whole family in a negative way.

When I met Mike and Maria I was so struck by how positive they were. They heard the same negative things, but they persisted with their high expectations with their son. They wanted to see if their high expectations would rub off on the other kids and I believe they did, and they rubbed off on me too. I changed as a mom. I learned the importance of not giving up on your child, setting those expectations high, and not letting the other people around you give up on your child.

BLOOM: So many of the film’s scenes are magical because they’re shot underwater. How did you do that?

Lara Stolman: We had a director of photography who wore a wet suit and encased a camera in a water-proof casing and she swam with her camera. I also used GoPros and we experimented and placed them in different ways and had the boys wear them themselves.

BLOOM: The parents articulate really hard parts of their lives. Did their experiences mirror yours?

Lara Stolman: Now we’re really getting inside the story. No one has asked me this and I’m a little apprehensive. Of course I did all the interviews. I was on the other side of the camera, and I decided what questions to ask and which questions to edit into the film. I decided how to structure those answers into the film and how to fit the story into the film. My experience influenced it all.

I thought there were very important things that needed to be communicated. The film needed to communicate how hard parents work at helping their children when they have challenges, and how they’re working round the clock. All of the parents in this case had full-time jobs and one was going through a divorce.

It needed to show that sometimes financially for families it’s a burden or a hardship or impossible. It was important to convey that the services and supports aren’t sufficient, and that it can be very scary for parents when they think about what’s going to happen when they’re no longer around.

These kids are generally excluded or ostracized from so many things other families take for granted. The film was about a swimming team, but it could have been a film about a marching band or a theatre group. The point was that these are things that, if you’re a family with typical kids, you know they’re available to your family. And it’s not just for your kids, it’s for the family.

Sports is like the town square. Families can interact with one another and meet one another. In the midst of all of that is a lot of important socializing. If your child is excluded from those kinds of activities, you’re also excluded and isolated as a family. This swim team provided a much-needed sense of normalcy and community that these families hadn’t experienced.

I remember Maria telling me that Mike had never been invited to a birthday party and she’ll never forget the time she tried to invite people to a party for him and no one came. She cried when she told me that story.

BLOOM: I was moved by the interviews with Patty. She would be talking with a smile and then there would be tears running down her cheeks, but she would try to return to a smile. It made me think about how as parents we feel we have to always present a positive face to the world, because disability is so stigmatized.

Lara Stolman: I live about an hour away from these families, but in making this film I definitely became a part of their community and I fell in love with them and their kids. It was really important to me to show that even with a character like Kelvin, who represents a child that needs so much support, that he’s funny and lovable and talented and has things to contribute.

BLOOM: What was the most challenging part of putting the film together?

Lara Stolman: I think the hardest part was deciding what was going to be in the film and what we’d have to leave out. We had such great material, and there were such interesting families on the team. But I knew from the beginning we had to narrow it down. I had a clear sense that it had to be two to four characters in order to really tell an indepth story about these characters.

BLOOM: What do you hope viewers take from it?

Lara Stolman: I hope it inspires other families to set high expectations for their children, and I hope it inspires professionals to not make prognoses when there’s still so much that’s unknown about autism. I also hope the film serves to open the eyes of people who haven’t had experience with autism to the stigma and stereotypes that are still out there. And I hope it shows that young people with autism can have skills, they can be fun and worthy and valuable members of our community.

It’s so important that cinema reflects our lives. People with autism and developmental disabilities and all disabilities need to see their lives reflected in cinema. I hope this film helps in that respect.

BLOOM: I think it would have been hard for you to make this film if you hadn’t been the mom of a child with autism.

Lara Stolman: I have to say that nobody else could have made this film. As a mother raising a child who’s approaching his transition years, I saw that these were important problems that we should make the public aware of. I was aware of these public policy issues about how do we include people with disabilities—especially developmental disabilities—in our community, in the midst of a history where, forever, we’ve excluded them. It wasn’t that long ago that we shipped them off to institutions. What’s really important for these families is that their kids find jobs, and have some semblance of independence, and the film shows how difficult that is.

BLOOM: And even more so now with the cuts that are being proposed to Medicaid, which will affect so many families of children with disabilities.

Lara Stolman: It makes it even more urgent. The president wants to cut all of this aid. That would make a bad situation even worse.

To find out about upcoming screenings, visit Swim Team.

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A radical idea: Be friends, make movies, respect disability

By Louise Kinross

Zeno Mountain Farm in Vermont has an unusual mission: create lifelong friendships by bringing together diverse people to make films and plays or do sports or music.

Last week 30 of these friends were in New York City for the premiere of their new film: Becoming Bulletproof.

It’s a documentary about the remaking of a 1920 Western, with a twist: its actors include people with Down syndrome and cerebral palsy as well as those without disabilities. The director and producer are award-winning filmmakers, but no one is paid to work here. And no one pays to attend. Participants come back every year. “The goal is to have these friendships last forever,” it says on the Zeno Mountain website.

I interviewed Peter Halby, one of two brothers who founded the program. What Peter has created is so radical, and so foreign to mainstream ideas about art, human value and disability, that it made me cry.

BLOOM: Why did you create the farm?

Peter Halby: We did it for our love of community and wanting to build something bigger than ourselves that would bring in a lot of the people we’ve met over the years.

I taught adaptive sports in the Boston area, my wife is an occupational therapist, and my brother is a special-education teacher. We’d worked at camps in the disability community and loved doing this kind of thing and bringing people back year after year.

We started Zeno in 2007 and said ‘Let’s take this to the next level and build a dream facility and create a lifelong network of friends that love getting together each year and having fun.’

Through my work I met wonderful people who happen to have disabilities. What was lacking in a lot of their lives was this sort of community that would be with people through their lives.

We also realized a lot of the creative stuff we all love, like making movies and sports, is enhanced with a diverse cast. It’s more fun and creatively interesting. At its core it’s friends coming back year after year doing fun, interesting things. No one is paid to do it.

Everyone is there for the same reason. We don’t have any hierarchy in our camps—we don’t even like the word ‘camp.’ It’s all about everyone contributing to the highest level of their abilities and being really honest with what people can and can’t do. But there’s no staff and no clients.

BLOOM: Do you have a background in film?

Peter Halby: We’d done musical theatre at other camps and then my brother moved out to Los Angeles, the land of movie making, so we thought we should make a film.

That first year we made a soap opera and pieced together friends in the area who would help with the film and shooting and lighting. It was a creative project we used to bring the gang together. Over the years we got better and better at it—the acting and production. For the last film we did, BulletProof, we got all the costumes from Universal Studies.

Over the years we’ve met friends who are connected with film, sound, costumes, scenes, sets, locations. When we have our movie camp in the spring, we call up everyone we know and say ‘We’re coming in, who has a connection that has a Western set? Or who knows where we can shoot a scene?’

BLOOM: How many camps do you run?

Peter Halby: We have nine camps a year and they run a week to a month long, so that’s over 100 days a year. The film camp is 2 ½ weeks. This year there were 45 of us there.

BLOOM: Can you describe the farm?

Peter Halby: Our home base is in Lincoln, Vermont. It’s a mountaintop farm with acres and acres of trees. But you can also see the Adirondacks and the green mountains of Vermont. There are six cabins in the woods. Four of them are accessible treehouse cabins. We have a big theatre barn—an ’1850s barn that we deconstructed and put back up.

The whole idea when we built the place was to make a magical place where people would want to come back year after year. The way we raised money to do our projects was through our movie premieres. People who loved what we do said whenever you get a facility, let us know and we want to help put it together.

Each cabin was donated by an individual or a foundation. We don’t get any government funding, but we do have a network of 4,000 friends of Zeno and close to 1,000 donors.

BLOOM: What’s the age range of participants?

Peter Halby: The age range is from eight to someone in his 70s. We’re open to any ability, although we don’t have anyone right now who is medically fragile. We have people with cerebral palsy, Down syndrome, autism, traumatic brain injury survivors. The mix of abilities leads to a more interesting dynamic.

BLOOM: Do you have participants who don’t speak?

Peter Halby: Yes, we have people who use assistive devices. One communicates ‘yes’ and ‘no’ with his eyes, and some smile for communication.

We have some people who need two people for their direct care and others who are pretty independent.

BLOOM: Do participants bring support workers?

Peter Halby: No, we would never have anyone bring a paid aid. It would break our philosophy of not paying anyone to come—which applies down to the cooks and nurses. People may come with a sibling, but the sibling wouldn’t necessarily work with the brother or sister or support them.

BLOOM: Where do participants come from?

Peter Halby: All over the country. We meet people through friends of friends. Part of the challenge of getting new people in is that we want to support people for life. They come back year after year. So it’s not open enrollment. We have a wait list and we can maybe have one or two new people at a camp. When someone says they want to come we say ‘We want to meet you.’ It’s a very intimate community. We want to learn about their interests and abilities and passions.

BLOOM: How do you manage to organize nine camps when you need people with very specific skills and everyone volunteers? How is that doable?

Peter Halby: That’s not the hardest part. In fact getting people to come and support us is not what I worry about. We have a huge network and people love it and in the end everyone comes for the same reason across disability: It’s community and family and friendship and fun. We’re on tour right now and there are about 30 of us, a mixed ability group, representing the new movie and we’re having a blast. We had a movie premiere last night in New York and then all went out to dinner. We’re off to LA next week.

BLOOM: What you’re doing is radical. Many youth with disabilities, especially in the high school years, are excluded and isolated.

Peter Halby: It is a radical idea. It’s a human right and a civil rights movement—the last great one in a way. And it’s so simple. It’s sad that it doesn’t exist on a major level. We hope this movie will bring awareness and understanding and acceptance to a higher level in the world.

BLOOM: What impact does your farm have on people?

Peter Halby: It’s life-changing. It’s the biggest community and family in a lot of people’s lives. It changes careers. People get married within the camp community. As an able-bodied person I take for granted the freedoms and liberties I have, and the ways I can keep connected with high school friends or any social network. I can just go out and do it. A lot of the people with disabilities that come here don’t have that human right.

BLOOM: How have your perceptions of disability changed over the years?

Peter Halby: I started working in the field when I was 15 and I’m almost 40 now, so I’ve been in it a long time. I don’t know how I’ve changed. I’ve always been in it and loved it and I love having a really diverse network of friends. I enjoy the different ways it challenges me personally—the ways I communicate with people or the different ways I connect with people. And the physical care that is involved—I enjoy all of that at this friendship level. I’ve been a teacher and I’ve been an aid. When you’re paid you can never get to this level of multi-beneficial communication and relationship. I was ‘the staff’ and that is a wall.

BLOOM: For some people with disabilities their only friends are paid.

Peter Halby: That is so prevalent in this community.

BLOOM: It seems unusual that you started this with your brother and your wives, and you all have the same passion.

Peter Halby: I met my wife at a camp similar to ours, so we came into it from outside. Will, my brother, brought his girlfriend in to the community and they fell in love with it. All of my best friends are involved.

For more than 100 days a year we’re living in the community. It’s not day trips. It’s living together 24/7. You can’t help but get really close and form really strong bonds.

When we’re making a film it’s a full-on creative project with all hands on deck. We run the camps on the premise that there is no wasted time. The one rule is you can’t do nothing. You have to take advantage of this moment, that’s the beauty of what a camp is all about. It’s focused time and energy on whatever the project is and it’s different than regular life.

BLOOM: There must be some challenges.

Peter Halby: As a director I’m constantly worried about people’s safety and making sure people feel supported and feel happy and healthy. And the logistical organizing of what we’re going to do and how we’re going to do it. Who’s going to cook? Who’s going to organize the meds? There’s so much we organize. Someone may get sick and you worry about that. But these are the smaller things compared to the bigger thing of this community.

BLOOM: In some ways our culture is becoming even less accepting of differences. How do you change people’s minds about friendship and disability?

Peter Halby: I think awareness. I think this film will help a lot. It shows everything we’re talking about in a really beautiful, incredibly well-made documentary.

The outside world has a misunderstanding of what disability is. It’s so vast and diverse and no two people are the same, just like in the able-bodied community. But people have an idea of what it is and that it’s a ‘thing’ that needs to be changed.

Even in mainstream media less than 1 per cent of disability is represented, and when you do see it it’s typically an able-bodied person playing somebody. I want a more open world. I want to see people having more diverse friends.

When you give people the time and understanding to get to know people there are ways we can all contribute and matter. That’s what happens at Zeno. Society needs to do more of that: giving people a chance to be respected and matter and have a purpose.

BLOOM: I think our readers will find this fascinating.

Peter Halby: The problem with Zeno is that we’re not an open camp. We want everyone to know about it, but it’s hard when so many people write to say they’d love to send their kid. Our mission is to support the core we have.

Ultimately, I want more camps like Zeno. We need more of these and we want nothing more than to help people start them. We would love to share everything we know and have these pop up.

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Bulletproof 'is an experiment in extreme diversity'

In the opening of the trailer for Becoming Bulletproof, one of the actors says: “You never really see anybody with a disability on TV.”

Becoming Bulletproof documents the remaking of a 1920 Western film called Bulletproof, with a twist: its actors include people with Down syndrome and cerebral palsy as well as those without disabilities. One of the filmmakers describes it as “an experiment in extreme diversity.”

The actors meet every year at Zeno Mountain Farm in Vermont to write, produce and star in short films. The farm was founded by two brothers and their wives with the goal of building friendships through projects in film, art, theatre, sports and music. No one is paid to work with the group and no one pays to come and participate. The group is funded by donations and all proceeds from Becoming Bulletproof go to Zeno Mountain Farm.

The film, which has won a number of awards at festivals, had a screening Monday at the Brooklyn Center for Independence of the Disabled.

I hope to learn more about how and why Zeno Mountain Farm was created and perhaps interview one of the filmmakers. Stay tuned! Louise

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Finnish punk band rocks disability awareness at Eurovision

PKN is a punk band that's a little different. The four men are middle-aged, Finnish, and have Down syndrome and autism. Next Tuesday they're competing in Vienna in the Eurovision Song Contest.

The group was chosen to represent Finland by popular vote.

PKN has toured in the United States, United Kingdom, Germany, Norway, Canada and the Netherlands.

They were the focus of a documentary called Punk Syndrome in 2012. Their first hit, sung in Finnish, includes the lyrics: "I don't want to live in a group home, I don't want to live in an institution."

I think this is very cool. Did anyone see them on tour?

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Want to know how dads feel? Watch this film

By Louise Kinross

It's not often you hear fathers of children with disabilities talk candidly about their child's diagnosis and how they reacted emotionally to it. But in Do It Differently, Scott Phillips sought out four dads with kids with autism and created an environment, maybe because it was dad-to-dad (Scott also has a child with autism), where they felt comfortable. The result is an exquisite, hour-long documentary where dads bare their souls. "We said 'why us,' as well as 'what did we do?'" recounts one of them. This is a must-see for every dad, and for every mom who felt their partner didn't 'get it' the way she did. You can watch it for free on YouTube or buy a DVD at Fan Blade Films. "For all fathers who feel lost, scared, and helpless I hope the film...inspires you to want to do more for your child who is different than you expected," says director Scott Phillips. "You are not alone."

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How baby went from 'alien creature' to 'our son'

By Louise Kinross

‘Our Curse’ tells the story of a Polish couple whose son Leo is born with a rare syndrome that prevents him from breathing while asleep. Without the support of a ventilator, he will die. The film, by Leo’s dad Tomasz Śliwiński, is nominated for a 2015 Academy Award for Documentary Short. You can watch it in its entirety on The New York Times.

Leo’s syndrome is known as Ondine’s Curse—or Congenital Central Hypoventilation Syndrome (CCHS). Leo’s dad writes that “He evolved from a 'curse' (a term we took from the disorder’s name), an alien creature with lots of medical noisy equipment, into our truly beloved son, without whom we could no longer function.” The movie is a beautifully honest look at how parents try to make sense of a life-threatening illness in their newborn. BLOOM will run an interview with Leo’s mom Magda in the print magazine coming out at the end of this month. Here’s a sneak peek.

BLOOM: Did making the film help in your healing process?

Magda Hueckel: Yes, definitely. First of all, it was very important while we were shooting. It was a really dark period for us, and sometimes we had no strength at all. Leo was still in the hospital, and after coming back home, all we could do was sit and stare at the wall. Nothing seemed important or worth any effort. But, once we decided to make the movie, we had to mobilize ourselves, take a camera and start shooting. It made us active. We felt that we were doing something creative.

And then—watching the movie helped us accept the trauma that we went through, to cry it out, to finally put it in perspective, and start a new life. It was the best therapy ever.

BLOOM: Did health workers help you feel that you could cope with Leo's medical needs?

Magda Hueckel: Unfortunately, the medical care was not perfect. Of course we have met many great nurses and doctors, who have been really involved, but in the beginning we felt very alone. All the knowledge we have, we had to seek from other families who deal with CCHS or from doctors that we reached out to.

BLOOM: What advice would you give parents of infants who have life-threatening illnesses or complex medical needs?

Magda Hueckel: Never give up. Check out everything. Someone tells you your child won’t walk—keep trying; your child won’t eat—give him a chance. It is worth your effort. And never lose hope—medicine is developing and miracles happen. And try to enjoy your life as it is. Even if you cannot do many things and you have a lot of restrictions—you can choose other activities. There are millions of possibilities. You can be happy, you can enjoy your life, you can push yourself to grow.

BLOOM: How is Leo's health now and what does he enjoy?

Magda Hueckel: He is four years old and he is a great guy. He loves travelling. He is starting to read and speak. He is really a happy boy. All his adventures are described on our blog—an English version is available at LeoBlog.

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After the fall

By Louise Kinross

Today is International Day of Persons with Disabilities.

We're marking the occasion with an interview with Pia Pearce, mom to Kevin Pearce (above), an American snowboarder who was expected to win gold at the 2010 Vancouver Olympics.

Then a crash head-first into ice almost killed him.

The Crash Reel is a raw, exuberant film that follows Kevin's wild success, devastating accident, and hospitalization for a life-changing brain injury. The film takes us into the world of Kevin’s close-knit family, which includes four brothers, one of whom has Down syndrome, and the gruelling rehab that follows.

BLOOM: What is it like to have two children with disabilities?

Pia Pearce: What’s even more interesting is that in addition to David having Down syndrome and Kevin having a brain injury, my husband Simon and sons Andrew and Adam have dyslexia, so my whole adult life has been about special education. I have a doctorate in education. So it’s interesting how life turns out and we all get what we need.

BLOOM: How did having children with disabilities influence the way you responded to Kevin’s injury?

Pia Pearce: I think it was incredibly helpful to me. I had learned, over the course of time, a lot about patience and acceptance and a lot about understanding differences.

Even though David, who has Down syndrome, didn’t have major health challenges, we started early intervention with him when he was only three months old. I feel I was very fortunate in many ways with my background in education and experience with the medical field.

I had learned that you can take things that can be challenging and difficult and see a silver lining and a positive side to them. For example, my husband, who didn’t do well at school, was a huge success at home and his family celebrated all the things he was good at.

BLOOM: What kind of prognosis was Kevin given early on?

Pia Pearce: We were never given definitive information because all brain injuries are different and everyone’s rate of recovery and ability for recovery is vastly different. When we were at the rehab hospital there was a floor for patients with spinal-cord injury and a floor for those with brain injury. It was surprising to learn that everyone with a spinal-cord injury seemed to have a very similar recovery process but with brain injury there was a huge variation.

BLOOM: How long was Kevin in hospital?

Pia Pearce: He was in intensive-care for 28 days and a step-down unit for six days at the University of Utah and then he was in the Craig Rehabilitation Hospital in Denver for three months.

BLOOM: How did Kevin end up in Denver when you live in Vermont?

Pia Pearce: When Kevin was in intensive care, a good friend of ours said he’d help by doing research on rehab hospitals. He spent a lot of time on the Internet and making phone calls to other parents whose children had been in rehab. He determined that Craig Hospital would be best and then my husband and son Adam and our friend went to visit Craig Hospital and made the decision.

BLOOM: How were you able to pack up and move to Denver?

Pia Pearce: I was very lucky. It’s amazing how things fall into place and friends step up when you need them. One of my closest friends from my first year in college lives in Denver and she had a friend who had a house available. The house was on the market and they said that until it was sold, they were more than happy for us to stay there. It wasn’t far from Craig Hospital. So Simon and I moved there and our son Adam decided to take a year off from his job to be with Kevin every day in therapy.

BLOOM: The bond between Adam and Kevin really came out in the film.

Pia Pearce: They were very, very close before the accident and Adam knew exactly what would motivate Kevin. Because of the lack of insight that comes with brain injury, when Kevin came out of intensive care he thought he was way better. He wanted to go home. Adam was with him all day, every day, in therapy and was able to bring humour to the situation and make it bearable.

BLOOM: As a parent, what was most challenging?

Pia Pearce: We’re coming up on five years and Kevin is still working on his recovery. Kevin has always been very particular about the therapists he worked with. He either really liked them or he didn’t. One of the hardest parts was finding the right therapist that was best matched for Kevin.

Kevin’s had a terrible time with double vision and trying to find people to help him with his vision has been a major struggle. He’s hugely excited right now because he’s finally working with a doctor in Atlanta, Georgia who specializes in brain injury and has helped enormously.

I feel really fortunate that Kevin has been so motivated about his recovery. He was born a very determined little boy. He came out into the world with perseverance, determination and wanting to work hard and that’s why he got so good at his sport. He then took those gifts and talents and applied them to his rehab. I think the hardest thing for parents would be having a child who doesn’t feel motivated and who gets discouraged easily—and the amount of extra support that child would need.

BLOOM: What helped you keep a positive mindset?

Pia Pearce: I can’t say enough about family support and the hospitals we were in valuing that part of the process and including our whole family. I didn’t have any experiences of places where we as a family were pushed aside and that would have been incredibly difficult.

I was able to support Kevin because I was getting support from my family.

I think family support, in all different ways, is critical. I learned early on that it was better if fewer people were with Kevin, because he got easily overwhelmed. I come from a big family and I had to ask them not to come and tell them they were supporting me by not coming. Some of our family was front and centre, taking shifts with Kevin and rotating. To other people I said ‘This is a marathon, not a sprint, and we’ll need you later.’

BLOOM: Families here say they often receive tremendous support initially but then people go back to their own lives.

Pia Pearce: It’s hard for others to sustain that kind of support when it’s not something like a broken leg that gets better in six weeks. For other people, your situation falls off their radar. The same is true for the friends of the young person. Kevin was very fortunate to have very good friends. But I’ve talked to other parents who were desperately unhappy that the friends of their son or daughter were leading their child astray, minimizing their injury and saying things like ‘You’re okay. You can come for a drink.’

BLOOM: Some parents say they have to mourn the loss of the child they once had to accept their child after brain injury.

Pia Pearce: I have to be totally honest and say that wasn’t a big issue for me. I didn’t see any value in going there. Or maybe it’s what we talked about earlier—that because I’ve had so much experience with accepting differences, my focus is on acceptance. We’ve worked forever with our son David, who has Down syndrome, on accepting who he is.

I’m a firm believer in the importance of feeling your feelings and feeling the grief. I’m not about denial.

However, there was a lot about Kevin’s extreme snowboarding that was nerve-wracking for me. So I thought at least I don’t have to go to those events and stand at the bottom of those mountains freezing cold and full of anxiety. What he was doing snowboarding was very hard for me.

The other big thing was that even though he had setbacks, overall he kept getting better.

BLOOM: Some people with brain injury have a change in their personality. Was this the case with Kevin?

Pia Pearce: Some of Kevin’s friends would say he’s quite different now. But I just experience who he is now and in some ways he’s more open and communicative than he was before and more aware of how blessed he is and how important it is to live in the moment.

I understand the sense that the person isn’t exactly the same, and some people with brain injury change more than others. It’s good to acknowledge one’s feelings about who the child was in the past, but getting stuck on them isn’t very helpful.

My present moment is so full and busy I don’t see the value in choosing to spend a lot of time grieving what was or could have been. I was amazed that Kevin did as well in snowboarding as he did. Maybe if I had been the parent who wanted more than anything for my son to win a gold medal in the Olympics, I would have felt differently. But that wasn’t the important thing for me.

BLOOM: What would you recommend for parents who may be stuck in grief?

Pia Pearce: Support groups for caregivers are very helpful. I’m also a big fan of talk therapy.

BLOOM: In the film one of Kevin’s friends talks about how their roles shifted. Kevin used to be like his big brother and mentor, and now their roles are reversed. Have roles in your family changed?

Pia Pearce: I’m the mom and I’m still the mom and I’ll always be the mom! My role hasn’t changed. Adam’s role changed the most. Adam and Kevin were in the world of competitive snowboarding together and travelled together. They went from being brothers and best friends to one being so injured and the other being part of the caretaking team.

I think it’s important for family and siblings and friends to adjust their expectations of the person with brain injury, based on the ramifications of the injuries. I remember a therapist said it was hardest for parents when they didn’t get enough information from doctors so that they could adjust their expectations realistically.

BLOOM: What kind of brain injury did Kevin have?

Pia Pearce: He had an injury deep in the centre of his brain. He had to relearn everything—to swallow, walk and talk. It was like starting over with a baby, but on this warp speed. The major issues were memory, his balance and vision. He still has a lot of problems with double vision.

BLOOM: Kevin’s brother David, who has Down syndrome, plays a central role in the film.

Pia Pearce: A number of people say that David is the secret star.

BLOOM: I agree! How important was David’s plea that Kevin not return to competitive snowboarding because he didn’t want him to die?

Pia Pearce: Kevin and the other boys are very independent-minded and I realized that if I put on too much pressure it wouldn’t be helpful. But David could speak from his heart and Kevin could really hear him.

BLOOM: In one of the most moving parts of the film, David talks about hating Down syndrome.

Pia Pearce: David has a therapist and we’ve worked on that in therapy. We’ve always told David we want him to love who he is. Kevin, Adam and David have taken the film to the National Down Syndrome convention and other self-advocacy events and focused on the theme of acceptance. It’s had a very positive impact and David now is able to say that he does accept his Down syndrome.

It has been hard for him to make close friends—not so much in the elementary grades, but as he got older. More recently he has a close friend who he’s calling his girlfriend and that’s making a big difference in his life.

BLOOM: Does David work in your husband’s business?

Pia Pearce: He has three part-time paid jobs. He works in our glass-blowing business, and at a payroll agency and at our local fitness centre. He loves to work out at the fitness centre and they employ him in the operations department folding towels and filling soap dispensers.

BLOOM: What did Kevin find to replace the joy he got out of snowboarding?

Pia Pearce: He does still snowboard, but he does it for pleasure. He goes where it’s safer, where they have deep powder. He’s more aware of what a huge risk it is.

The biggest thing for Kevin and Adam right now is the foundation they started called Love Your Brain. They want to improve the quality of life of people living with brain injury. Their big push is offering free yoga classes to people with brain injury and their support workers. They’ve got pilot programs in Vermont and New Hampshire. Kevin has benefited so much from yoga and mindfulness meditation.

Kevin and Adam were just speaking to 900 managers at a Lululemon conference in Vancouver about partnering with them to promote yoga.

BLOOM: The film covers Kevin before and after the injury. Did you begin work on it before his accident?

Pia Pearce: No. We had a lot of family footage we’d taken and when Kevin began rehab, Adam and my husband Simon were great at having a camera around all the time. The doctor said that Kevin wouldn’t be able to see how he’s getting better, so it would be important to show him through video. We were able to give that footage to the director, Lucy Walker.

BLOOM: Has participating in the documentary helped or harmed the healing process for your family?

Pia Pearce: The process has been hugely helpful to Kevin and David. I can see how much it’s also helping other families who watch the film. That’s been a fantastic feeling for me: to take something that’s been so incredibly challenging and difficult and stressful and have amazing, positive things come out of it. One of the things I was happy about was that when we watched the rough cut I felt it was really honest. I felt it was an honest, accurate portrayal of who we are and how we dealt with it.

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