Hayden (last name Desser) and his wife Christie Greyerbiehl are presenting and curating the concert in support of services for children with developmental disabilities. Their daughter first attended nursery school at Holland Bloorview Kids Rehabilitation Hospital, before starting Beverley Street School two years ago. It is part of the Toronto District School Board and has been a school for children with intellectual and physical disabilities since the 1950s.
“My daughter was born with a rare chromosome deletion and she’s sort of undiagnosed, so she’s a beautiful question,” Hayden tells Samaritanmag.
Hayden and his wife plan to make Dream Serenade a yearly event. Proceeds will be directed to much needed schools, pre-schools, hospitals and parent respite services that support children with special needs and their families in the Toronto area. For those who would like to help, go here.
Hayden spoke to Samaritanmag about the work and staff at Beverley Street School, putting together the concert, resources for parents of children with disabilities, and how you can help if you are not attending Dream Serenade.
How are you doing? Is everything coming together?
“Yeah, there’s a lot involved, but at least it’s more rewarding than just trying to sell my new album.”
You have been thinking of doing something like this since your daughter was in nursery school at Holland Bloorview Kids Rehabilitation Hospital.
“Yeah, it’s been in the works for many years because in the last five years since she was born there’s been a whole lot of organizations, hospitals, nursery schools, schools where there’s people doing amazing things, and we’ve been exposed to a whole world that was completely off our radar before that time. I wouldn’t say we’ve become experts, but we definitely see what’s working, what needs more work, who the great people are, and who can benefit from some extra funding. We’re able to bring a little bit in through the simple fact that we know some people that have audiences. It’s basically as simple as that.”
Are there many schools like Beverley Street School in Toronto? How did you choose the right one for your daughter and her medical condition?
“There definitely are not a lot of schools like this in Toronto. If you ask me, I believe Beverley is an anomaly. It’s not an integrated school, so all of the children in the school have developmental and/or physical disabilities. There are a few schools in the public school system where there will be one classroom or two classrooms of special needs children and then they’re integrated into the rest of the school for gym class or for recess or certain activities, so that’s one style of classroom for these children. But Beverley’s its own thing within the school board. From the second we walked in there, we knew it was just… it’s sort of cheesy word but magical. It really is a magical place and it’s just been incredible for our daughter.”
How has your daughter progressed there?
“In general, it’s not really grades; the school teaches kids everything from how to use the potty, toilet training to just general life skills, and each kids has an individual education plan that’s designed for them after the first few weeks of school and there’s different realistic goals for each kid that’s set. The teachers are just really dedicated to bringing out the best in the kids and also being really fantastic with the parents, so the goals are continued when the kid gets home and there’s just really good communication between the staff and the parents.”
From your experience and research in talking to other parents, what are some of the things that are needed and where is the money from your concert going to be directed?
“Well Beverley really has been ahead of the game with certain technologies as far as getting some of these kids to communicate. In fact, it might be on YouTube, but they were featured on 60 minutes, the TV show, just two years ago that was about iPads and Steve Jobs, how he could never have predicted how iPads have [helped] autistic kids, and kids with learning disabilities. They went to Beverley because they spearheaded and did a study with U of T [the University of Toronto] using iPads. But, of course, these sort of new technologies that they use cost money and when one breaks down they lose a major tool for teaching these kids.
“So anyway the money is going to go to things like that that cost a little extra that the kids really learn from. And also a particularly exciting aspect of this is that they’ve allocated the majority of the funds to a new green playground for the kids because, right now, the kids play on sort of a cement-y back area. So that’s the plan is they’ll make a green playground on a grass surface with some new equipment which is incredible – I always picture that when I’m doing emails in the morning for this concert.”
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Do you know how much money you’d like to raise or will this be ongoing to achieve that dream of a playground?
“Because it is the first year, we really don’t know. And also we set up a donation email link in conjunction with whatever the concert brings in, to try and supplement for people that can’t make the show. We’re going to be selling T-shirts and silkscreen posters all in an effort to make the most out of the evening, but because it’s the first one I just don’t know expenses versus what we can bring in yet.”
So not everything is donated – venue or sound techs, that kind of thing, you have to pay for but the artists are volunteering?
“The artists are definitely volunteering, but the thing that happens when you put something like this together, not everyone is as emotionally invested as you are, and people have to get paid right? So, yeah, there are certain things that are donated and certain things are discounted, but I will say that the people at Massey Hall have been pretty amazing. They’re doing everything they can to make this make as much as it can make.
“And having it there has kind of always been my dream, whenever I’ve thought about putting something like this together. That’s THE venue in my mind in Toronto. And I’ll also say that the thing about the night is that we really wanted to have the parents and the teachers and the staff of the school come to the show and have it be a night out, like a special, almost like a gala evening. A lot of these parents and caregivers don’t really go out at night and have difficult lives, so having it at a special place was part of the vision.”
It’s all ages and your ad says “100% fun.” So are you tailoring the show for them in any way because there will likely be a lot of kids there and also increase the wheelchair accessible areas?
“This was another scenario about the show in the early discussions, my thoughts on the show originally because in my head I had [Neil Young’s] Bridge School Benefit scenario in my head, which is an outdoor amphitheatre and the kids from the school are actually on stage with the performers, and the kids are in the audience, and all the parents and the caregivers are all there because it’s an outdoor daytime thing.”
Have you attended one of the Bridge School events?
“Actually I played it in ‘96.”
That was when Neil Young was courting you for his label?
“Truth be told it was after, a few months after I had not gone with him. So, anyway it was that kind of scenario, so I thought that would be incredible, right, an outdoor daytime thing that the kid could go to. But for several reasons that didn’t end up happening and we had to do an indoor evening thing, so not a lot of kids will be able to come because it will be going to past 11 [p.m.].
“So maybe in the future we’ll be able to do something outdoors for the kids, but that’s how we’re setting it up this year and I feel really good about it. It’s going to be really fun.”
All of the artists who are participating have they met your daughter? Are they close friends? Or are just charitable folk? Tell me your association with them.
“Well the association with them is that I do have a personal relationship with all of them, and they’ve all met my daughter, yeah. So it’s a crazy group of people — everything from the talent that’s involved to how big some of their audiences are to just my personal relationship with them. It’s going to be an emotional evening, for sure, for my wife and I.”
Some charity concerts just get on with the concert and talk little about the cause except for signage and some tables out in the lobby. What’s your plan? Will people be talking about the school? Do you want to make sure that everyone who’s performing is familiar with Beverley and where this money’s going? How do you envision it going?
“Like I said, bringing the school into the show is important to us, so my wife and I are going to speak about it and we are going to have the principal [Alana Grossman] and the vice-principal [Rebecca Ansley] speak as well, before we show the film. I’m certainly not going to tell the artists to say anything in particular, but they’re all very familiar with what’s going on.”
One thing related to something you said earlier, I asked Neil Young about Bridge School’s impact and he said that their school is now used as a model for teaching others around the world. At Beverley, the children all have different medical conditions and many unknowns, the staff are on the cutting edge of education?
“Well I’ll tell you right now, I was just at the Friday music thing I was describing to you just last week and there was a delegation of educators from Denmark that were sitting in at the school doing just that right, learning their methods. And there’s a delegation from China there this week so it has become that kind of place. When I say it’s a special place, I really mean it. It’s becoming a bit of a model for just really effective ways of bringing out what these kids can achieve.”
Are there other kids there that have the same condition as your daughter?
“Not exactly, because our daughter has an undiagnosed condition. She has a deletion in her chromosome. Something like Down Syndrome is a deletion in a particular chromosome, but it’s in a known area with known characteristics, but the deletion of where my daughter’s is is not something that’s been researched or known. It’s different diagnoses all over the school.”
So the teachers there are dealing more with the skill level of the child versus the condition?
“Yeah, in the first few weeks, they watch the kids and see how they do different activities and where their needs are, and they create an education plan for each particular kid, and each kid is remarkably different and incredible. As are the teachers, you know? These are people that work extremely hard. And it’s interesting because the rewards are not always the same as working with regularly developing kids. There’s a lot of patience involved and dedication. You really have to love your job.”
Have you and your wife found some resource online or anywhere else that has really helped you, whether it’s buying home equipment or finding the right schooling? Is there one central place that’s been great?
“No, not really, not a central place. And, I guess, part of doing this is the whole aspect of remembering when, in the first few months, we found out that our daughter’s a special little girl and sort of the dark places that you can find yourself in and the trying to find answers and resources, and trying to figure out your way. I believe we only heard about the Beverley school from a friend, maybe about three years in, because their son happened to go there. So it was definitely just a word of mouth situation. So apart from raising funds for things that they can do to help continue on doing the things they’re doing, maybe some sort of awareness for parents who are in the early stages of trying to figure out their new life, if this puts the school on their radar then that’s something that’s positive that can come out of this as well.”
It must be pretty scary to be a new parent of a child with a disability and have to discover things that aren’t readily available the way other child-rearing info is — transportation issues, child-proofing your home, finding tailored schooling.
“Yeah totally. I do want to be clear about something, There are a lot of people in this city that are doing amazing things, and my worst nightmare is to come of like you know like “look what I’m doing to help save…”
You don’t come off like that. We all know that in a big city like Toronto, there are tons of resources. You just have to know where to look.
“Yeah, the idea is just so simple to me. When I looked around at what I could do, this is not a hugely difficult thing for me to get friends together for a night of music and celebration. It’s a small way for me to help to do a little bit for this and I’m really happy to do it. But Holland Bloorview has an amazing magazine called Bloom that we get in the mail, and an email every month; there’s great stories about parents and their children and what they’re doing together. There’s the Geneva Centre For Autism where we get a newsletter called The Parent Network that does the same. So there are quite a few ways of parents connecting with each other and reading about one another and the idea of not feeling alone when you’re going through a challenge in life like this. It does make me think of 40 years ago what things were like; it would’ve been terrifying and very lonely having a child with developmental and physical disabilities.”
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