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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'I'm ashamed to be jealous:' A special-needs dad

Yesterday this candid piece about being a special-needs dad on LinkedIn blew me away. It's such a rich account of the many emotions experienced by parents of children who don't meet conventional milestones. Author Mike Cook, a manager of Enterprise Services at Dell, Inc. in Oklahama City, said we could reprint it here. Enjoy! Louise

By Mike Cook

I have been blessed with an amazing family, starting with my wife (my rock). She is truly superwoman, and I don’t know how she does what she does, but I thank God for her every second of every day.

Between the two of us, we have four amazing boys.

Our oldest is 22 years old, recently married, and is in Air Force Intelligence. Our 20-year-old graduated valedictorian and was on the dean’s list in college. Our 12-year-old is in all-honours and read the Harry Potter series before he was five.

And last but not least is our youngest, Matthew, who will be three soon and is the happiest little man in the world. I wanted to share about all of our boys so that you realize how blessed we have been with some very bright young men.

At first glance, you would never be able to tell that Matthew is any different from other toddlers his age. No matter where we go, complete strangers always make the same comment: “That’s the happiest little boy I have ever seen.” Matthew always has a smile on his face.

What they don’t realize is that Matthew has major delays in his motor, speech, cognitive, and social skills. The doctors call it global developmental delay (GDD). In layman’s terms and what I tell everyone is: He doesn’t walk or talk yet. Doctors haven’t been able to determine what’s causing the delays yet, but for the last two years, our precious little boy has had to see more specialists than you can ever imagine.

Matthew currently has speech therapy, occupational therapy and physical therapy multiple times each week, and I must admit that raising a child with any type of delay, disability, disorder, condition, or special need is both a blessing and a challenge.

It’s a challenge for the obvious reasons. But it’s a blessing too: You can’t imagine the depths of victory and joy you experience when you see your child's reaction to overcoming his own challenges.

It’s the simplest things, like seeing his eyes light up waiting for you to acknowledge what he did when he puts his cup down softly instead of throwing it; the smile on his face when he climbs off furniture without any help, the clapping of his hands after he uses sign language to say “thank you,” or my favourite—the high-pitched dolphin-like sound he makes when he scoots over and hugs me to say “I love you!” Those moments are when I realize how blessed I am and what life is truly about.

People know me as a very open person who can usually talk to anyone. But what many don’t know is that after Matthew’s issues arose, I rarely express my deepest feelings. Instead, I internalize the problems we deal with and swallow them whole, because that’s what a strong father, husband—a strong man—is supposed to do.

I don’t want anyone to know how terrified I have been at times because I don’t want them to feel pity for me or think that I don’t love my son with all that I am. So, I want to share a few things about raising a child who has special needs in hopes of bringing a little understanding to those who don’t know what it’s like.

It’s tiring

As all parents can attest, parenting is already an exhausting endeavour. But parenting a child with special needs pushes us to an entirely new level of fatigue.

Even if I get a good night's sleep or have had time off, a level of emotional and physical exhaustion is always there, from the weight of tending to his needs.

Hospital and doctors' visits are not just a few times a year. They are typically a few times a month. Therapy sessions are multiple times each week. Paperwork and bills stack up, and spare time is spent catching up on cleaning, working with him on trying to crawl or walk, searching the Web in hopes of finding similar cases with cures to help him learn, or advocating for him in the medical and educational systems.

The emotional stress of raising a child with special needs has peaks and valleys that seem so much more extreme than those encountered in regular life. I am always so appreciative of my employer, Dell, Inc., for helping make life easier—from arranging schedules around Matthew’s appointments so I can work from home if needed, to understanding the last-minute fill-ins if my wife may not be able to make a therapy session or doctor’s visit.

It’s scary

I often worry: Am I helping him too much? Am I not helping him enough? What if I’ve missed something—a treatment or a diagnosis, and that window of time to treat it? What about his future?

Will he ever drive a car? Will he ever get married? Will he ever be able to live independently? I fear thinking of the hurts he will experience if he doesn’t catch up and is tagged as “different” by other kids in this harsh world. I am scared about finances. Finally, I fear what will happen to Matthew if anything were to happen to my wife or me.

In a way, I feel ostracized

I feel we are now outsiders due to a fear that something could happen to Matthew because he can’t protect himself the way a “normal” child can. I worry that he can’t say “stop” or “don’t” or that he won’t realize he should have said it until it’s too late. I worry that people simply won’t understand him. I’ve seen the sideways glances and rolled eyes from strangers when he throws food or does something they consider rude or disrespectful, which makes going out to restaurants even more difficult.

When my wife and I go to parties, we end up by ourselves, whether or not we have our little boy with us. If he’s with us, then we’re constantly watching him to make sure he’s okay. We don’t make our rounds and say “hi” to everyone. We simply can’t for the reasons I’ve mentioned above.

If he’s not with us, then we’re worried that something will happen to him away from us. We don’t go out with our friends the way we used to because it’s too frightening to leave him with someone who might not understand what he’s trying to say or sign. Sometimes it’s even too hard to get your own family to understand just how stressed out you are.

I’m ashamed to be jealous

Even with the beautiful family and blessings I have, I can’t help but feel a tiny pang of jealousy at times when a child younger than Matthew runs past me or calls out to his or her parent the way I want to see my son Matthew do.

What’s even worse is that this envy makes me feel as guilty as can be, because I am so proud of everything Matthew has accomplished. This little boy has worked harder than any of our other boys to accomplish everything he has been able to do, but I wish it hadn’t been so hard for him.

I hate when that little pang of jealousy hits me—this so-called “normal” child in front of me didn’t ask for my little boy to have a learning disability. This child doesn’t realize that when he calls out “Daddy,” for a split second, I think, “Why? Why did this happen to my son, and why can’t I hear him say 'Daddy'?" Then I push that thought as far away as possible because these questions are not fair to that child or to my little boy.

If Matthew ever reads this in the future, I want him to know that I have never regretted a second with him. Matthew, you have made me a better parent and a better person. You amaze me every day with every single accomplishment you achieve and the way you are always happy. I only wish I had known what I know now when your brothers were your age, for I would have spent more time with them.

I love talking about my son

My son is awe-inspiring. Some days I want to shout from the rooftop how funny and cute he is or how he accomplished something. Other times, when I'm having a rough day due to being made aware that Matthew is sick yet again, I might not say much.

I don't often share with others, even close friends and family, the depths of what I go through when it comes to Matthew. I feel as if something is always going on, and I don’t want to be a burden or seem negative. I do appreciate when people ask me about my son, but if I'm not sharing, please don't think that there isn't a lot going on underneath, or that I don't want to let you in.

Raising a child with special needs has changed my view on life. Nothing breaks this “lens” more than having a sweet, innocent child who was born with impairments that make ordinary living and normal “performance” difficult or even impossible.

My life with Matthew has helped me understand that true love is meeting someone exactly where they are—no matter how they stack up against what the world thinks they “should” be. Raising a child who has special needs shatters all the expectations that we build our lives around and pushes something else to the core: love and understanding.

I’m human

So, to our friends and family, future friends we haven’t had the pleasure of meeting yet, or strangers who know and love a special needs family somewhere in this vast world of ours:

What can you do?

Strive to include. Work to understand. Go out of your way on occasion to help a family who has a child with special needs. Realize that the stress and strain take their toll. We’re just trying our best to survive. If we seem secluded or if we’ve offended you with our words or our actions, we apologize for our moments of weakness. Hopefully, someday we can move forward together.

We do our best to make our family life look normal and to act like everything’s fine. And yet, we wish people might see through that facade every once in a while and understand that we truly appreciate the slightest effort to make us feel...special, just as our son is special.

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It's hard to tell when special-needs parents are 'drowning'

By Tina Szymczak

In 2010, our darkest times as a family, I began to use the analogy of a swimming pool to describe the difficult parts of our adoption and disability journey. I hope the analogy will strike a chord with other people who struggle to care for another family member, young or old.

When my husband and I decided to pursue adoption, we never expected it to be easy. However, there was no way to know how very hard it would be, until we’d experienced it ourselves. Throughout the adoption process we were told again and again that to bring an older child into our home from the foster care system would be a huge leap of faith.

I now picture the adoption process as a huge leap into a swimming pool. In the adoption classes everyone stands around the pool. During the home study process and disclosure you get your feet wet. If you want to adopt after that, you better be willing to jump into that pool with your child, whether you know how to swim or not.

When we were given information about our son we did what we thought was due diligence. We asked all the right questions. We jumped in the pool knowing that our son couldn’t swim, but convinced he would learn, with us there with him. We were naïve and thought that if we needed services we’d just advocate for and get them (try not to laugh at me—I’d been working in early intervention for years and should have known better).

After a while we grew tired of holding our son up. We had to face the reality that he wasn’t learning to swim, no matter what we did. We called in more experts. They blew us out of the water when they told us he’d never learn. We grieved and reeled from this new information, but refused to give up.

We called for back-up, but what we got was a bunch of people standing around the pool. They wouldn’t get in with us. Some would sit on the edge and get their feet wet and give us helpful suggestions. That would buoy us for a little while. Most refused to sit. They’d stand in the distance and judge us and occasionally ask us if we were ready to give up and give him back.

People would come and go. Occasionally we were left with no one. A few times some amazing soul would come along and, when no one was looking, jump in the pool and hold up part of my son. Then their boss would come along, or it’d be the end of their work day, and they’d have to get out.

Our son’s diagnoses kept piling up—first Tourette syndrome, ADHD and obsessive compulsive disorder. Then later, autism and sensory-processing disorder. Then the biggest one: bipolar disorder.

After many years our son got bigger and he grew frustrated by his lack of progress.

We no longer cared if he ever swam on his own. We just wanted him to enjoy being in the water again. We knew we needed help to find other ways to accommodate him in the pool.

We looked around. We yelled for help. People came back to the side of the pool, shaking their heads and questioning how we’d ever managed to keep him afloat for so long. We politely but firmly asked for help. They asked if we wanted to give him up, send him back. They wanted us to admit defeat and get out of the pool, leaving him there. That was the only way the system could help us, they said.

We refused. We began splashing and making all kinds of noise. We blew whistles and got the attention of the people in charge. All the while though, I was beginning to drown. All those years of holding my son up had taken their toll: my body was failing.

Some wonderful people jumped in and lovingly took our son, but I was drowning. I couldn’t even begin to tell others what was happening. I later wondered how so many good, well-intentioned people never recognized what was happening to me.

Then I read an article called Drowning Doesn’t Look Like Drowning.

“The Instinctive Drowning Response—so named by Francesco A. Pia, Ph.D., is what people do to avoid actual or perceived suffocation in the water. And it does not look like most people expect. There is very little splashing, no waving, and no yelling or calls for help of any kind.”

Drowning, from the surface, is quiet and undramatic.

Isn't it like that for us as parents? People look at us and see the “together” image we’re trying so hard to portray. We hide our weakness and fear—often times because we know people won’t take us seriously or our child won’t receive something—an intervention or placement—they need. Even as we’re unravelling, sobbing or screaming on the inside, we dress nice, fix our hair, arrive early and sometimes even bring cookies.

We keep on top of referrals that need to be made, reports that need to be sent and IEPs that need to be revised. We deal with meltdowns, illness and messes at home. We cry at night when our children are in bed because during the day we need to hold it together. If we don’t do it, no one will. We find the strength to call for help for our children. But we can’t do the same for ourselves.

We drown silently.

It wasn't until my son went into a therapeutic residential placement that I finally had time to take a step back and sort out what was my need and what his was. I realized that I needed to go back to therapy and I needed to reconnect with my friends that I'd let fall by the wayside. I also needed to take care of myself. I had cancelled and rescheduled appointments for dental, eye care and physicals so many times I'd lost track. Probably the biggest thing I did to stop drowning was to lay it on the table for my spouse so we could figure out who would be responsible for what. He turned out to be a great supporter and partner.

I don’t want to imply that our whole journey has been horrible (I’d jump in the pool again for our son, without hesitation). There have been many more loving, touching, heart-warming times. But I’m writing about the periods that are very difficult. As my friend and fellow parent wrote: “Yes there’s an idealistic tropical paradise pool and there is also a shark scenario, but reality is somewhere inbetween.”

As I assist other families and work in our community to change services, I’ve tried to pinpoint common “drowning” signs in families like ours.

If the parent is avoiding social events, holing up in their house or crying all the time, then you need to gently step in. Listen to them. Be non-judgmental and ask questions, so we know you're listening and interested.

It can be hard to know how people are doing if they don’t share their struggles, but you can always do the following:

Make meals or give gift cards to order food. Don't ask if you can do it. Just do it.

Offer to take the other children when parents have to take their child with a disability to appointments.

See if your employer will let you donate vacation or sick days to your coworker. We tend to use up a lot of days for sick kids, or when our kids are kicked out of school.

Come over and do a couple of loads of laundry.

Drop a card or quick note to let us know you’re thinking of us.

Let us vent about our kid or a particular situation that’s developed. Don't judge us.

Remind us that no one expects us to do it all alone

In addition to teaching people what to look for in parents who are barely treading water, perhaps we could adapt the pool and hire trained lifeguards to get in with us.

You can follow Tina Szymczak at Spirited Blessings.

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Sister turns step-by-step picture stories into life-skills app

By Louise Kinross

Growing up Nadia Hamilton drew pictures and instructions to help her brother Troy, who has autism, do things around the house. “These were handmade social stories before we knew what social stories were,” she says. “We knew he benefited from a visual guide that was a structured breakdown of an activity.”

Today Nadia is the mastermind behind MagnusCards—a free mobile app that allows users to collect and create decks of cards with images and text that walk them through each step of any everyday activity, from watering the garden to ordering pizza. “It’s a digitized version of the life-skills game that we used to play at home.”

BLOOM interviewed Nadia to learn more.

BLOOM: How old is your brother and how did he inspire your app?

Nadia Hamilton: Troy is 26. When he left high school, the safe, predictable structure of school, the routine of friends and teachers every day and the opportunity to continue to learn and develop was ripped out from underneath him. It was a feeling of being pushed out and isolated and no longer accepted.

Troy and I are very close and I’d started to think ‘What are we going to do? How do we continue to support him to be an active member in society and to live with more independence and inclusion, even if we’re not around?’

I was sitting at a computer desk at the University of Toronto and thought ‘What if there was a way to gamify what we did on the wall of our apartment to help Troy? For example, I’d draw the visual steps of how to brush your teeth and we’d put them on the wall above the sink.

BLOOM: What is the purpose of MagnusCards?

Nadia Hamilton: We want to change the way people with cognitive special needs live their lives in society. We want to improve the way they live after high school, when they fall off that cliff. We are leveraging technology, because most people with autism and other special needs grew up gaming, to create the ultimate strategy guide for life.

BLOOM: How does it work?

Nadia Hamilton: It can be used on anything with a screen. It’s a card collection game with a special character named Magnus. Magnus is the Super Mario of the autism community. He’s a wizard who’s lost his powers and has to learn how to live in the world without magic. He used to be able to snap his fingers to do life skills. Then one day his power didn’t work.

Magnus teams up with the user to collect card decks with step-by-step instructions for a variety of life skills. It could be a deck of cards on how to take the bus, how to go grocery shopping, or how to take your medication. As you collect these decks you’re building a handheld life skills library you can take with you in the palm of your hand.

Parents and users and educators can also create custom cards by loading up their own photos and text to meet the individual’s learning style with images that are familiar.

Magnus walks through the card deck with the user and awards points. This positive reinforcement not only encourages skill practice and mastery, but encourages the individual to view something that may seem irrelevant, like vacuuming, as relevant.

BLOOM: How did you create the app when you’re not a developer?

Nadia Hamilton: I have a political science background and this is completely a labour of love. I’m not a programmer but I’m a total nerd and I do have the ability to manage someone to program.

I outsourced the development to China for the alpha version. Then I went to Centennial College and asked their research and innovation lab to help me develop and test the next version. They were a fantastic help.

Then we were invited to be part of an incubator program in Waterloo called Communitech. They not only helped me to build the company but to get access to key mentors and training. I don’t have a background in business but I’ve had the most patient and insightful mentors.

BLOOM: How are you able to make it available for free?

Nadia Hamilton: We have a unique business model where corporations create branded deck cards as annual sponsorships. The corporations pay and our users access it for free.

So, for example, my brother loves pizza, he’ll eat it two times a week, but he’s never ordered it on his own. So we went to Pizza Pizza to create a guide to their services and how to order. The Royal Ontario Museum made a deck on how to go to the ROM, how to get a ticket, what to do if you get stuck or lost.

We’re partnering with one of the big banks in North America who will use MagnusCards to train employees to work in the mail room and in other areas of the bank.

The corporations get to engage the special needs market and to learn more about this large demographic of society. We want to turn every space into a welcoming space for people with special needs where the message is ‘You can work here, you can add value to our institution or organization and we value you.’

We’re just about to start working with our first school system.

BLOOM: Who uses MagnusCards?

Nadia Hamilton: We have people with a broad range of abilities. We’ve done testing in partnership with the Geneva Centre for Autism and Autism Ontario. We have people with Down syndrome and acquired brain injury using it. Our users range in age from six to 65. The parent or individual can decide what they want to learn, how they want to learn it and fashion their own tool.

Troy’s favourite category is the health category. Every day at 1 he grabs the iPad and goes and does his exercise routine which we created, using weights and an exercise bike. He even uses the cards to take care of the garden. I walked my dad through how to create a card deck so that he didn’t have to be there.

We have users in 27 countries, including India, Pakistan, Vietnam, China, Australia, the UK and Ireland.

Troy is our lead product tester. Any time we think about instituting a change he runs through it for us on his iPad.

 

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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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Wanted: Dads raising kids with disabilities

By Louise Kinross

Matt Swan has been raising his daughter Leah, 16, on his own for over seven years. Leah was born with spina bifida and hydrocephalus and uses a wheelchair and g-tube. Before he separated from his wife, Matt worked from home so he could be primary caregiver. He’s eager to connect with other dads of kids with disabilities, particularly those who, like him, have full custody.

BLOOM: How did you react when you learned Leah would have disabilities?

Matt Swan: I didn’t know she would be disabled until the week before she was born. I was still trying to process it when she arrived prematurely. She was taken away in an incubator and the neurosurgeon started telling us what her disabilities would mean.

It was like getting repeatedly punched. ‘She’s going to be in a wheelchair.’ Punch. ‘She won’t be able to feed herself for the rest of her life.’ Punch. ‘She’s not going to talk.’ Punch. ‘She’s going to be mentally retarded.’ Punch. When you get punched that much you go numb.

BLOOM: What did you do?

Matt Swan: My wife was recovering from a C-section so I left the hospital for a walk to collect myself. It was a beautiful autumn day and all the leaves were turned. The one question that kept circling in my mind was ‘Why me? What about all the healthy children who were born to people who didn’t want kids? Why did I have to have a child who was disabled?’

I’m not a religious person, but it occurred to me that Leah being born into our family was some part of a grand design because she needed parents who could give her a good life. The light switch went on: ‘I’m going to do my best to show her the beauty of the world and give her the life she deserves.’ I made my peace with it.

BLOOM: What about Leah’s mom?

Matt Swan: She didn't have that moment like I did. I think she had trouble accepting and coping with the reality of Leah's condition. I arranged to work from home so I could care for Leah and take her to all her appointments. She had about 25 surgeries in the first three years, so it was really difficult. The stress took its toll on our relationship.

BLOOM: How is Leah affected by her disabilities today?

Matt Swan: She uses a wheelchair and is diapered and g-tube fed. Psychologically she’s about the age of a five year old. She goes to public school and is in a special class.

She has words and sentences. She doesn’t say much, but I know there’s a lot more she’s processing than most people give her credit for. She often surprises me with things she remembers. Some people don’t understand her speech, but I know what she’s saying.

She loves to watch Sponge Bob and America’s Funniest Videos. Her iPad is like an appendage to her.

She’s a beacon of light. She’s so happy, funny and positive that everyone who meets her falls in love with her. She’s a joy to be around. I’m tremendously proud of her.

BLOOM: What was it like to become a single dad?

Matt Swan: It wasn’t really an adjustment day to day, because I was used to her routine: bathing her, sending her to school, feeding her, changing her diaper, taking her to appointments. One of the challenges I’ve faced is being accepted as a parent. When it comes to single-parent families, everyone assumes the mother has custody and is the primary caregiver. I get a kind of shocked, stunned look when I tell people.

I also realized the system was quite different for single dads. In the first year we were visited about four or five times by Family and Children’s Services to do welfare checks. A government worker even suggested that it wasn’t appropriate for a single man to raise a little girl. I was appalled. Do single mothers go through this? I don’t think so.

There were other hoops, too. The child tax benefit was automatically going to my ex-wife. When I called Revenue Canada to tell them I had full custody of our daughter, they said I needed letters from her school, teacher, doctor and a notarized letter from a lawyer. After producing all this documentation, I asked what my ex-wife had to do to get the benefit: nothing, they said, just apply.

Seven years later, I still get appointment letters from hospitals addressed to my ex-wife, even though we’ve moved and Leah’s mother lives out of town. Leah’s had five surgeries since last October and her mom showed up for just one of them. The entire time the doctors and nurses addressed her directly and didn’t even acknowledge I was there. Finally I took one of the doctors aside and said ‘It’s fine for you to talk to both of us, but you should know I have full custody of my daughter and she lives with me.’

BLOOM: What would you say was the biggest challenge?

Matt Swan: The greatest challenge for me is the networking part. All parents of kids with disabilities feel like they’re working in a bubble, and no one really understands what we go through. There are a lot of groups for single parents of kids with disabilities but I’ve gone to a couple of them and I’ve been the only man there. At first I’m treated suspiciously: ‘What are you doing here?’ Then I often get sympathy.

I just want to go to these meetings to network, because the system is so big and complex. I need to find out about services and learn what everyone else is doing. But because I’ve been the only man in the group, I’ve often felt awkward: the moms connect with one another in a way that I’m not able to. I usually ask a few questions, listen to other experiences, take notes and leave early.

I’ve looked for single-dad groups but I’ve yet to find one that’s for single dads with kids with a disability. I do feel like an endangered species.

BLOOM: Even though you were used to being Leah’s primary caregiver, it can’t be easy doing this on your own.

Matt Swan: People often say: ‘I don’t know how you do it. It must be so difficult.’ It’s difficult for any single parent, regardless of their child’s level of ability. Leah’s routine is all I know. I don’t have any other children. I don’t feel it’s any more or less difficult, it’s just different.

I work from home, and juggling my family life and work duties can be a challenge. I sometimes feel stretched thin, tired, trapped or frustrated. I had an accident with my van in July and it was written off. It was our way of getting to appointments, so for the past month and a half I haven’t had a vehicle. Getting around has been an even greater challenge.

But when Leah and I are on the couch watching TV together, or when I tuck her in to bed at night and she’s lying there with this little smile on her face, it just makes me melt. I don’t regret any of it, seeing her happy and hearing her laugh.

BLOOM: Does Leah have friends?

Matt Swan: Yes and no. She has people in her life that she likes but she won’t go out of her way to play with them. She likes to be on her iPad.

BLOOM: I understand you became a family leader at Holland Bloorview?

Matt Swan: Since we moved to Toronto six years ago I’ve found the most support being part of Holland Bloorview. I get to meet other people and after a while I see familiar faces and people recognize me and Leah and that’s fantastic. They really get it. 

BLOOM: What advice would you give other single dads?

Matt Swan: Get out there and get connected, which is true for all families. As men we’ve been nurtured to be tough and strong and act like nothing bothers us, but that’s completely not true. We see our kids suffering and we do get emotional. It is tough some days and it’s difficult to work through those feelings. You have to have someone to talk to. I talk to my family and friends on the phone. But I don’t usually talk to other parents of kids with disabilities.

I use respite when I can. At first it was difficult for me because I felt like I was validating everyone’s suspicions that I can’t take care of my daughter. After being scrutinized by Family and Children’s Services it left me wondering whether dads are inferior parents. I just don’t believe that’s true. I miss her when I put her in respite, but you really need that time as a parent. You have to take care of yourself. Leah doesn’t get homesick and she adapts so well to new people and situations. She looks forward to her time away.

BLOOM: Are you interested in starting a group for single dads raising children with disabilities?

Matt Swan: I am. I’d love to hear from other dads raising kids on their own. I can’t be alone out there. It’s important to have that support. Even though we’re under societal pressure to fill this ‘tough guy’ male stereotype, we still have worries, doubts and confusion. The system itself is very confusing. It would be great for us to have a meeting to share experiences and ideas, even informally, like over a game of pool.

Matt Swan can be reached at canaderik@gmail.com

 

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This time my husband used a new line: 'He has a brain injury'

By D. Christine Brown
 
We were sitting in a nice Italian restaurant in Kingston, Ont., en route home from our vacation. Our son Lucas was very tired, hungry and cranky. He wasn't settled or quiet. We were in the back room by ourselves when the hostess sat an elderly couple in the same room. It wasn't five minutes before the man approached my husband and asked him to keep the noise down.

Now, usually by this point, there are a lot of things happening with us.

We are thoroughly exhausted from another day of the emotional swings of a toddler with sensory issues. We are beaten down from hearing the onslaught of screaming and whining, feeling helpless about how to satisfy our son “enough”  so that he will be calm and quiet. We are desperate for a nice meal, and at the same time eager to make it a quick one. We are protective of our son and his needs. And, we are on the defense from the time we enter the public realm until we're back in the safety of our car.

If anyone had approached me, I might have answered: “He has autism so it's difficult” when I'm really thinking “You can feel free to go sit in the other room” or “Well, I don't like seeing your ugly face in my line of vision either, so can you please leave?”

But this time my husband firmly, and almost accusingly, used a new line: “He has a brain injury...so...it's kind of hard...”

The man cowered coyly, apologized twice and returned to his wife. Our son continued to exclaim his scripts of protest loudly. We ate as fast as we could and left before their food arrived.

I am so completely sick of us feeling compelled to “shush” our son in public when I want to just let him be himself. And yet, we need to give others the respect we expect for our son.

This is an example of a stressful part of each day in our new normal.

Four years ago our son's brain suffered a massive inflammation attack. We spent three months in hospital and he's been recovering ever since. Our lives completely changed and there was no way we could have anticipated the magnitude of the impact.

But four years later, we are somehow finally settled into our new normal. This anniversary is the first one where those events of September, 2011, feel like a lifetime ago. The extent of what happened has dimmed. We are now just who we are and our reality is our own.

It's clear to me that you have to process a lot of unfinished business before you can get to this place. We have had to process all of the unspoken thoughts, fears, wishes, desires, and regrets that we could easily choose to bury, and often do.

I have said before that each day of our parenting feels extreme, with shifts from sheer joy to utter despair. We have higher “highs” and lower “lows” in our daily life than we ever had before. For the cycle of these highs and lows to be so short-lived and so frequent is what has taken time to adjust to. All in one day, I will have a rainbow of affect. But most days are good.

I'm at a point now where cherishing every day with Lucas and being involved in his growth and development fuels my fire to help others. I recently became a certified grief recovery specialist after going through the Grief Recovery Method and finding it extremely useful in processing my loss around what happened to our son. I'd like to help other parents of children with special needs process their grief.

I also became a certified DIR/Floortime provider in order to help other parents of children with developmental delays know their treatment options and that there is an alternative to Applied Behavioural Analysis (ABA).

As I relish in the joy of feeling Lucas's soft little warm feet next to me in bed and stroke his angel cheeks, my heart fills with warmth and pleasure. Being Lucas's mom is the greatest gift in my life.

We've come to see that our son is doing great and continues to show growth and development as his brain heals and as nature intends.

We have to accept that people will make assumptions about our son based on his behaviour that are incorrect and ignorant. Rather than turning into “Mama and Papa Bear” in attack or defense mode, we need to educate the public to change perceptions of behavioural challenges in children like our son.

We are ready to share our new normal with the world and hope that our experience can help others.

 

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Happiness is parenting a special-needs child

By Val Lusted

I never thought I’d be writing my very first blog with this title!

However, when 2015 appeared on the horizon, I decided to start journaling on the concept of “happiness.” I used the 22 lessons from a film I’d seen called Hector and the Search for Happiness as my template, noting when I felt happy. Simple right?

It’s eight months into my New Year’s resolution now and as I look back I find it
interesting that most entries relate to my role as a mom to Evan, 15. My husband Rick and I adopted Evan from the Republic of Georgia when he was five months old.

We were about two years into our journey as a family when we started down a scary, unknown path of diagnoses for Evan. A path which would deeply influence the way I view the world and my role as a parent.

Evan was born with complex neurological issues that resulted in an array of diagnoses including microcephaly, ADHD, learning disabilities, hearing loss, significant oral-motor and speech and language articulation challenges. Most recently he is showing signs of social anxiety.

All of these challenges will impact Evan’s future and ours.

But back to my “happiness” journaling. Here are a few excerpts.

Lesson 2: Happiness often comes when least expected

“…the look of shocked surprise on Evan’s face, followed by a smile, as he watched the puck enter the net to provide the Hawks with the winning goal against North Toronto. His gaze followed the puck, then scanned the nearby crowd of fans until he found my eyes. Looking at him and smiling back, ear to ear.

That evening game, the win, the goal, the resulting burst of confidence, seeing my son fully engaged in the play—it had followed an equally blessed and unexpected social invitation earlier in the day. Evan had been invited to join some of his teammates at an Air Canada Centre Juniors hockey game. The boys had travelled together via subway to the arena. Evan had been afraid to go, fearing another anxiety episode might erupt. But Rick and I had talked him through it: offering the usual reassurances, rehearsals and a review of his other anxiety-management strategies.

We asked him if he trusted us (and his teammates) that there was no way he was being set up for failure. He acknowledged how important it was to continue to face his fears.

Evan had gone. He’d had fun. He’d survived. He’d felt like he belonged that day.

Today has been a good day. And that has made me feel happy.”

Or

Lesson 16: Happiness is knowing how to celebrate

“…On the way home, I reflected on the session [with Evan’s psychologist] and noticed how my body, my shoulders, felt lighter. I felt like I had just met a new ally. I felt hopeful. I remembered the text I’d received earlier in the day, along with a voicemail message from Evan. He’d gotten 75 per cent on his music test. Yup. Time to celebrate. I bought a dozen doughnuts to share with my family.”

And

Lesson 14: Happiness is to be loved for exactly who you are

“...I had the good fortune to spend five whole days with Evan, away from work, household chores and other day-to-day stressors. We shared the time with extended family members at my sister’s cottage, initially garage sailing, napping, lounging, visiting and eating before a local music festival began on the weekend. Because the main cottage was full of occupants, Evan and I were offered accommodation in The Loft (the teen hangout, above the garage).

I have to tell you…the five day visit was so good for my relationship with Evan. I felt so much more relaxed, I was able to actually have conversations with him. I was able to enjoy his sense of humour! It was such a great bonding experience. I felt so blessed that he didn’t seem to mind spending time with me, his middle-aged mom!

How many moms of teenagers have that gift?

At the festival or at the cottage, he’d go off to spend some time alone or to explore some of the vendors. These are moments which I think nurture his sense of independence and 'typical teen time.'

Next year, Evan is even hoping to invite a hockey teammate to stay in The Loft with him, instead of me. Now that would be a wonderful gift sure to enrich my sense of happiness.”

Try googling “happiness is parenting a special needs child.” You’ll find lots of like-minded people to motivate you to continue on your journey. The BLOOM blog and other online resources are equally inviting and inspirational.

Tonight, I am practising gratitude for all of the gifts Evan continues to give to me.

I will continue to journal what makes me happy, using the 22 lessons as my trusty template of positivity, even though I know there will be tougher times ahead.

Val Lusted is a social worker in the Specialized Orthopedic and Developmental Rehab Unit at Holland Bloorview Kids Rehabilitation Hospital.

 
































Words of Wisdom from Hector and the Search for Happiness

Lesson 1: Making comparisons can spoil your happiness.

Lesson 2: Happiness often comes when least expected.

Lesson 3: Many people only see happiness in their future.

Lesson 4: Many people think that happiness comes from having more power or more money.

Lesson 5: Sometimes happiness is not knowing the whole story.

Lesson 6: Happiness is a long walk in beautiful, unfamiliar mountains.

Lesson 7: It’s a mistake to think that happiness is the goal.

Lesson 8: Happiness is being with the people you love.

Lesson 8b: Unhappiness is being separated from the people you love.

Lesson 9: Happiness is knowing your family lacks for nothing.

Lesson 10: Happiness is doing a job you love.

Lesson 11: Happiness is having a home and a garden of your own.

Lesson 12: It’s harder to be happy in a country run by bad people.

Lesson 13: Happiness is feeling useful to others.

Lesson 14: Happiness is to be loved for exactly who you are.

Lesson 15: Happiness comes when you feel truly alive.

Lesson 16: Happiness is knowing how to celebrate.

Lesson 17: Happiness is caring about the happiness of those you love.

Lesson 18: The sun and the sea make everybody happy.

Lesson 19: Happiness is a certain way of seeing things.

Lesson 20: Rivalry poisons happiness.

Lesson 21: Women care more than men about making others happy.

Lesson 22: Happiness means making sure that those around you are happy. 

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What do you read most on BLOOM?

By Louise Kinross

Almost 200 people responded to our 2015 BLOOM survey earlier in the summer. We will report more fully on the findings, but I wanted to share with you the results to our question: What topics do you read most on BLOOM? Click on the image above to see the results clearly.

I don't think it's a surprise that "Real family stories" was most popular, followed by "Disability news," "Parenting tips, experiences and resources," "Growing up (life skills), "Research" and "Disability rights and ethics."

Thank you to everyone who took the time to tell us what they like, don't like and want to see more of in BLOOM!

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Think other special-needs parents have it 'together?' Think again

By Louise Kinross

When Autism Comes To Roost: A Family’s Journey From Denial to Acceptance is a new parent memoir out next week.

Canadian psychologist Alicia Hendley writes candidly about her son Max’s diagnosis of autism and how it caused “the ground [to shift] under me. Suddenly unable to juggle the roles of therapist, wife and mother of four with anything resembling grace, I stumbled head-first into a major depressive episode, which was quickly followed by a diagnosis of bipolar disorder.”

BLOOM interviewed Alicia to find out how being a psychologist influenced her response to her son's diagnosis. This is the perfect interview for any parent who assumes that every other parent of a kid with a disability has it "all together."

BLOOM: The title of your book includes 'from denial to acceptance.' How did you respond when you learned Max had autism?

Alicia Hendley: My initial response was complete denial. The daycare filled out questionnaires on development at 16 and 24 months and both were very clear that Max was behind in every area. As a psychologist I told my husband that the surveys weren’t valid because they were supposed to be parent-completed questionnaires and not based on teacher feedback. ‘They don’t know what they’re talking about,’ I said. ‘He’s just this interesting kid and he’s very sensitive.’

I did one of those questionnaires over in red pen and changed all the answers. It wasn’t until my youngest son started catching up with Max that it became more clear, around Max’s third birthday.

What jumpstarted the need for an evaluation was his absolute need for routine and ritual. We had to do the same route home from daycare and if I changed the route or if I said ‘that’s the fire house’ instead of ‘that’s the fire station’ he’d have a meltdown and take off his shoes and throw them at my head.

When I heard the word ‘autism’ from a child psychologist it was absolutely devastating. It was like I’d known but I didn’t know. And my view of that word is different now, but at the time it was devastating.

BLOOM: In a short span of time Max receives a diagnosis of autism and you receive a diagnosis of severe clinical depression.

Alicia Hendley: During that period I was working full time and I also had two older children and a baby. I counselled students at the University of Waterloo, so I was dealing with people who had their own distress and needed my help and that took a lot of emotional energy.

Max wasn’t in the child services system yet and there were wait lists. Nothing was happening and I didn’t know who to call. I’d leave each morning and he’d be screaming and refusing to put any clothes on and hitting himself. I’d cry driving all the way from Guelph to Waterloo. So my mood was steadily going down.

At first I tried to ignore that I was getting depressed. I wasn’t sleeping and I was losing weight. At lunch time I’d be crying in my office. But it wasn’t until one day when I opened a professional e-mail and realized I couldn’t read it—it was like a different language—that I called the doctor. I couldn’t even speak. 

They had me come in that day and placed me on leave. The book is about my journey trying to get help for Max at the same time I was trying to get help for myself and trying to be a mom and a wife. Writing was an outlet for me and I initially began journaling.

BLOOM: What was it about Max's autism that contributed to your depression?

Alicia Hendley: I was in denial about Max but I never felt shame about him. I got depressed because I had no idea what to do or how to help him. I don’t worry about whether he’ll go to university or fall in love or not. I worry about any type of future where people could potentially hurt him and that family and close friends wouldn’t be there to buffer that. Will there be people in his life when he’s older that accept him for the person that he becomes? That keeps me up at night thinking about when I’m gone or my husband is gone.

BLOOM: How did being a psychologist influence your response to Max’s diagnosis?

Alicia Hendley: While I didn’t feel ashamed about Max or his autism, I did feel ashamed about my depression. I was a psychologist: ‘I know what to do. How come I can’t fix myself?’ I hid my psychological problems from anyone outside my immediate family. My expectations for myself were so high that they slowed my path to recovery. Even though I would never feel that a client of mine was weak in any way, I thought I was weak. I was taking medication and it was hard and I was doing therapy and it was hard. There was shame about me being depressed and ‘why can’t I hold it together?’

BLOOM: How did you cope with your own issues and Max’s?

Alicia Hendley: Once we were hooked into the system there was a lot to be offered. We went to KidsAbility and they had a lot of services before school started. Emotional regulation is Max’s biggest difficulty. When Max was in a meltdown it felt like a storm. And when he was littler if he would hit himself that was something I could hardly bear to see.

The occupational therapist had me stay in the room so she could teach me ways of helping calm him down. I learned a deep pressure hold I could do and that was huge. It didn't help my mood—once I got in that depression I was in it—but I did start to feel more hopeful that there were ways to help him. We did a number of rounds of ABA, but here that just means a couple of hours a week. We never got into morning-to-night services. He still got to be a kid.

BLOOM: Did anything help your mood?

Alicia Hendley: We did a program called Stay and Play where children with disabilities were paired with typical kids of the same age to play, while their moms received education in another room. Every week they had a topic for parents, but it quickly became clear that the mothers were most interested in talking with each other.

We were all isolated and we wanted to connect. We would complain about things. We would commiserate. We would laugh and talk about our lives in general. We all ‘got it’ when a mom said that if she hadn’t packed her child’s orange spoon there would be hell to pay. We got that this wasn’t a bratty kid, but a kid for whom the world seems very unpredictable and having an orange spoon makes it less scary. I felt a huge sense of relief in that group and that maybe I could be the mom I wanted to be.

BLOOM: What advice would you give a parent who’s struggling with their child’s diagnosis?

Alicia Hendley: I needed to have a professional outside the family to talk with, a good solid therapist who was familiar with working with families with kids with disabilities. The sooner parents do that, the better. My husband and doctor pushed me to see a social worker and I thought 'What's she going to do that I don't know?' But she was so beneficial and helped me so much.

The first thing I would tell new parents is 'let yourself feel whatever you feel and it's okay to grieve. It doesn't mean you love your child any less or are a bad mother.' I don't believe there are any bad feelings. If you instantly try to be happy or accepting it may be artificial. I needed medication. Not everyone needs medication. 

One of the best things is physical activity. It's been shown that walking every day is as good as certain types of medication for mild depression. You need support from family and friends. Maybe they don't understand about your child's special needs, but perhaps they can support you to have some time to yourself.

Journaling helped me. I work really hard on taking care of myself now. Once my little boys are in bed, I collapse for a few hours. I read, spend time with my husband or watch mindless TV to recharge. I used to try to fill all of those hours with things that needed to be done. Self-care is important: taking that bath, having that scented lotion or special snack or listening to beautiful music.

BLOOM: Was there any kind of therapy that your social worker did that was helpful?

Alicia Hendley: She'd let me vent and then she would frame things in a slightly different way and it was really about self-acceptance. She was accepting of me and none of my feelings were 'bad' and I wasn't a ‘bad’ mother or person. 

She helped me see things in a less extreme way and to catastrophize less. She talked a lot about caring for yourself and being gentle with yourself. She asked 'What are the moments that you love with Max?' I'd be wanting to talk about a horrible meltdown, and we would talk about it. But then she'd say 'What about the next morning?' and I'd remember that Max and I woke up at the same time and snuggled on the couch.

BLOOM: What helped you accept autism?

Alicia Hendley: Reading more of what autistic adults have to say about their experience. Initially I read up on Autism Speaks but it didn't help me in terms of acceptance. The message was 'Oh no, this is a tragedy.' I see my son, and when he's not struggling with a meltdown, he's not a tragedy. I acknowledge that yes, he needs supports in different areas. I don’t pretend he doesn’t.

I started getting asked a question that many parents get asked: 'If there was a magic pill that would take away the autism, would you give it to Max?' I really thought about that question. I read these heated debates on Twitter about a child hidden beneath the autism, but my experience is no, Max wouldn't be Max if he wasn't autistic. There's an autistic boy in front of me and it's part of the wiring of his brain and it's who he was, I believe, inside of me. If I took away the autism I wouldn't have this child and that would be a tragedy.

As I began to read more from adults writing about autism it helped me toward acceptance that this is a difference. There are challenges because whenever you're a minority, in terms of being different, there are challenges. If stimulation can be that overwhelming it can be a disability and you need to learn ways to cope.

BLOOM: Did you ever consider not sharing your journey with depression in your writing?

Alicia Hendley: I remember the first time on my blog when I wrote that I had a mood disorder and pressed 'send' I felt like I wanted to take it back. I felt horrible that people would know that I wasn't just this great mom trying to help her son, but that I have struggles too.

The initial draft of the book was all about Max, but it felt like so much was missing. Not including any of that felt false and it also felt too much like 'Look at me, I'm this great mom.' But I definitely didn't have it all together. And many parents don't. They grieve, they second guess themselves, they make mistakes.

BLOOM: Why did you decide to write the book?

Alicia Hendley: I was working as a psychologist when Max was diagnosed, and had years of training, and yet I felt completely lost and didn't know what to do. That made me wonder about other parents and how isolated they must feel. On my blog, parents wrote about feeling like they’d stepped off the world: people didn’t understand, family didn’t understand. I hoped the book could be helpful to other parents, especially the not-so-positive parts in the beginning where I was clueless and helpless.

BLOOM: Did you return to your job?

Alicia Hendley: No. I know that I invest too emotionally in my clients and that would put me at risk for getting depressed again. It’s still a bit hard for me when people ask ‘Oh, how come you’re not back at being a psychologist?’ It’s taken a long time and I don’t think I’m completely over the shame. But I’m getting there. I’m still working on self-acceptance.

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'I felt so small:' Parent tips on speaking up with specialists

By Sue Robins and Isabel Jordan

When my son was diagnosed with Down syndrome 12 years ago, our family was thrust into a world of medical specialists that was foreign to us.

I still vividly recall this harrowing experience with a cardiologist.

Aaron was a month old, and we’d been sent to our children’s hospital to make sure he didn’t have a hole in his heart. After the testing, my husband and I sat nervously in the clinic with our wee baby, terrified that he might need open-hurt surgery.

A well-dressed doctor burst into the room. I knew who she was, as we’d been told she was a "prestigious physician." But she didn’t introduce herself. She didn't say a word.

Instead, she proceeded to examine our little boy brusquely, placing a cold stethoscope on Aaron’s chest, which caused him to startle. I didn’t know I could speak up, so we sat there, passively, in silence.

“The ECG and echo showed that he has an ASD, but I hear no murmur,” she said. I dutifully wrote this down in my little book. I didn’t know what an ASD was, but there was no pause to ask questions. I felt so small.

“Book him back in a year for follow-up diagnostics,” she said. Then she turned her back to us and started dictating Aaron’s report into her phone. My husband and I looked at each other. We guessed this was a sign that our appointment was over.

“Are we done?” my husband asked. She stopped her dictation but didn’t look up. “Yes,” she said.

We packed up our son and left feeling very confused and a bit stupid.

I realize now that I should have spoken up to this doctor, who is actually just a person. I could have introduced myself and asked her to warm up her stethoscope. I could have politely interjected and asked my questions. There are so many things that I’ve learned since then.

Here are some tips Isabel and I put together to help you find your voice and get what you need out of your child’s health appointments.

Bring support if possible

There’s nothing worse than going it alone, especially to a new specialist. It can be difficult as a parent to listen to, process and remember all of the information. Consider bringing a family member or friend to help hear the things you miss.

If you’re on your own, bring a notebook and pen so you can write down important information. Because these appointments can be stressful, arrange to call a family member or friend after the appointment to debrief and hear some encouraging words.

Get to know your health providers

Build relationships in the health system. Instead of being intimidated by specialists, think of them as fellow human beings. We chat with receptionists about the weather and find out their names. Ask your child’s pediatrician where they’re going for holidays. Be friendly with all staff, and always take the time to say thank you for a job well done. We hope that if we see the staff as human, they will see us as humans too, not just as “special-needs parents.”

Get your questions answered

You have a right to ask your questions. Come prepared with questions written down in a journal.

Make sure you ask your most pressing question first, rather than leaving it to the end of the session, when there may not be time. Take notes.

It’s okay to ask your doctor to slow down and better explain answers until you fully understand what is being said. Don’t be afraid to ask what an acronym or a medical term means!

Find out how you can be in touch with the doctor if you think of something after the visit. Can you phone? E-mail? Do you need to book a follow-up visit? Ask for a business card or written contact information before you leave.

Know that you’re the expert on your child

We go to health specialists for their clinical expertise and knowledge. But as parents, we are with our kids 24/7, so we, too, bring essential practical information.

If you feel uncomfortable with a situation—with a suggested medication, with a course of treatment, or with a professional's approach—you need to put the brakes on and speak up diplomatically about your concerns.

Sometimes just asking to slow things down so you have some time to think things over is helpful. Sometimes you need to be politely persistent.

It’s important to know that you can always ask for a second opinion or another professional to speak with. You can also ask to speak to someone in the patient relation's office. Some hospitals have family advisories and may be able to connect you with another parent.

Remember the visit is about the child

Prepare your child before the appointment for what to expect, and explain things as they happen on the day. Maintain dignity—by giving a child privacy when he or she has to change or by providing a blanket to cover up. Suggest they be given choices, such as which arm they’d like the blood pressure cuff put on. Model the behaviour you want to see. For example, ask health providers to speak directly to your child with questions. As parents, remember that the appointment is about your child, not you.

We believe that the better we get at speaking up, the better health providers will get at working with our families and providing the kind of care we want and need.

Sue Robins is a mom of three and family advisor at Sunny Hill Health Centre for Children in Vancouver. Isabel Jordan has two children and chairs the Rare Disease Foundation in Vancouver. 

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