Is the universe trying to tell me something?

Two weeks ago I wrote about how Ben had deleted the Proloquo communication app off his iPod. We didn't have a recent backup, so I spent hours recustomizing it – deleting unnecessary vocab, moving categories around to make it easier to navigate, creating new folders and words, syncing new photos so that Ben's favourite Star Wars area grew to epic proportions.

We had just started to use the characters in those photos as a basis for writing simple sentences. Ponda Babba's face looked like a spider and Greedo looked like a giraffe because he had the same little horns on his head.

So last night I was looking forward to Ben choosing another figure that we could write about. Instead, he brought me the iPod to show me that he had deleted the Proloquo – AGAIN!

I kept opening and closing my eyes, unable to fathom that the kid had done it again. I was furious – knowing I'd have to start back at square one reprogramming the device – and I also felt stupid. Why did I assume he wouldn't delete the software again? My kid is impulsive and the process is simple: You hold down the owl icon on the app page until it shakes, a box asks you if you want to delete, and you click it.

As I contemplated the task of ONCE AGAIN redoing the hours of work I'd spent over the last couple of weeks, I couldn't help thinking about the time I've spent trying to help Ben communicate over the years.

There were eight years of speech therapy, which sometimes saw him going four times a week. Multiple times we drove the 10 hour trip from Toronto to New York – Ben's toddler sister in tow – so he could be seen by specialists using approaches not available locally. Sometimes we'd drive the 10 hours one day, have the consult the next, then hop back in the car for 10 hours back. We were on a mission, and if it was going to help Ben speak, we would have driven to the moon.

I spent exorbitant amounts of money on speech kits. There was Easy Does it for Apraxia and the Kaufman Speech Praxis Treatment Kit, by Nancy Kaufman. We took Ben to see Nancy twice in Michigan. We also saw Sarah Johnson – who developed the oral-motor approach to therapy – and a few of her staff who lived in various parts of New York State. I bought enough oral-motor horns, straws, bubbles, tongue depressors and toothetes to equip a clinic and did the exercises religiously. We visited Dr. Shprintzen in Syracuse, an expert in surgery to close a floppy velopharyngeal flap, one of several structural problems Ben had, and a team of specialists at the NYU Medical Center.

Early on, we put picture symbols everywhere. When we began sign language, I remember cutting out hundreds of picture symbols with signs, taking them to Grand and Toy to get them laminated, then cutting the laminated ones out again. There was sign-language immersion camp and a dynamyte voice device – which I first acquired as a loan from the distributor because our therapist wasn't willing to authorize it. That changed when we videotaped Ben using it and were able to prove he was capable. However, the dynamyte was heavy and couldn't travel with Ben – who was mobile but tiny and weak. The technology was archaic and it took so long to move through the deeply embedded pages of vocabulary that it was easier not to use it. But still, I spent hours and hours programming it.

The AAC therapists didn't believe in sign language and advised strongly against it. A developmental pediatrician convinced us it would be useful for Ben, and it was. But he was still limited by his weak, uncoordinated hands and according to one psychologist wasn't smart enough to become more fluent.

When he was a baby, he babbled exuberantly and we always thought he would speak early. He had many word attempts in his first year. “Bo” was bottle and “'Ben go bo” meant “Ben go bottle.” His beloved red Sesame Street character was pronounced "Elma.” A speech therapist noted that he referred to his favourite furry creature – “owl” – “very clearly,” and an assessment at age two said he was at an 18-month speech level. But once the severe, recurrent ear-infections started – and with his hearing loss still misdiagnosed, despite frequent hearing tests – he lost it. I used to go back and look at the lists of words he'd said, unable to grasp why they had vanished.

When Ben was about four, it hit me hard that he might never speak. I went back to church and I asked the congregation to pray for Ben, who we were taking to Michigan to see Nancy Kaufman. An old man turned to me and said: "Maybe God doesn't want him to speak. Have you ever considered that?”

The message that Ben wasn’t destined to speak came again at age seven when we were doing a second week of intensive, twice-daily therapy with the Michigan therapist. “I don't think Ben is ever going to speak,” she said during a morning session. “I don't think he'll ever get past word attempts that you understand but that others don't. I think his brain is wired differently.”

I went back to the hotel room and I got under the covers and I wanted to die. But I couldn't, because we had another therapy session scheduled for that afternoon and I had to keep Ben motivated and up. I didn’t have time for grief, because every second of the day was a therapeutic opportunity we couldn’t afford to miss; the window for intervention was beginning to close.

I didn’t listen to the man who suggested God didn't want my son to speak, and I didn’t listen to this speech therapist.

Last night, when I realized Ben had deleted the Proloquo a second time, I wondered: Is the universe sending me the same message?

Maybe Ben deleted the software because he doesn’t want to use it, plain and simple. While it’s freeing for him, it’s also challenging.

"Ben, I've spent hours fixing this machine for you,” I said. “I did it because I thought you wanted to use the iPod to communicate!”

"Eh!" (Yes!) he said vigorously, nodding his head.

Sometimes I wonder if there is some larger message at play. Sometimes I can't help imagining a higher being watching my never-ending attempts to help Ben communicate, and shaking his/her head and laughing: "She just doesn't get it, does she?"

But I can't stop. I don’t have a choice. I have to get the software reloaded at Bloorview today, and I have to start recustomizing again. Because it's Ben's only opportunity to increase his communication – whether he's capable of using it as adeptly as I'd hope and whether he wants to use it – or not.

Later last night Ben tottered like an old man down the hall, almost upended by the giant Pixar movie encyclopedia he was carrying. A bony growth inside his hip is pushing it out of its socket and causing him to limp. He’ll be having major surgery in two weeks to remove it.

If only life was a Pixar movie, where friendship saves the day, being different is okay and the good guys eventually win out.

“I’m sorry,” Ben signed, and then he signed that he wants me to be happy again. He hugged me.

I don't have a choice on that either.

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Sweet sixteen

My son turned 16 on Friday.

His party was at ChuckECheese. An odd location for a teenager, but my son's developmental age is much younger.

I wish it hadn't bothered me.

I was happy to see Ben happy. He loved the games, the pizza, and seeing ChuckECheese in costume.

But a part of me was embarrassed that my 16-year-old wanted to go to ChuckECheese. Ben is the size of a six- or seven-year-old, so it wasn't like he stood out particularly.

We've had other birthdays where only one friend has shown up. This year four kids came. Two teenagers from his school – one deaf and one with autism – his younger friend Liam and a teenage girl Ben knew when he went to an alternative school.

The deaf boy clearly found ChuckECheese uncool, but the others enjoyed it.

Whenever Ben's birthday rolls around I feel a tinge of sadness. He's not doing what other kids his age are doing, and he never will. He wants to have lots of friends come to his party, but the truth is that he doesn't have friends – not the kind that he sees on a regular basis and is able to maintain an ongoing relationship with. There are kids who have been fond of him over the years, and sometimes we’re able to get them out.

I wish I didn't feel this way. I wish I didn't have any ambivalence about his slow development or inability to follow social norms. Sometimes I feel Ben's presence in my life is a constant reminder of where I'm lacking as a person: I don't have enough patience. I'm not as accepting as I need to be. I care too much about fitting in.

And I couldn't help thinking, what will Ben do for his 17th birthday? Or his 25th? Will we become lifelong regulars at ChuckECheese?

The bottom line, I guess, is that it doesn't matter what Ben chooses for his party next year, as long as he enjoys it.

Today my younger son came up with this brilliant idea: "Dad, why don’t you go to ChuckECheese for your 50th?!"

Now at least then, I wouldn't have to worry about Ben being the oldest kid in the place.

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The big picture

Check out this gorgeous photo series of the Paralympics by the Boston Globe.

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When siblings step in

"What keeps us awake at night is knowing we won't be here forever. And always questioning whether we're doing the right thing. We want Carol to have a life that is rich and includes all the things she does and one where she is protected – whether we're there or not." Pat Ellingson (left) with sister Carol (centre) and partner Carolyn (right)

The above passage is from an interview I did with Pat Ellingson, creative head of children's media at TVO, Ontario's public education media group. Pat's sister Carol came to live with Pat and her partner Carolyn five years ago, when she was 45. Carol – who has a developmental disability – had lived with her mother in Vancouver until she died. She lived for a short time with another of her sisters, but it didn't work out. So Pat brought Carol to Ontario.

As I interviewed Pat, it struck me that she shared the same feelings and concerns for her sister as I have for my son: the love and commitment, the pride, and the constant wrestling with how to create a rich and safe life for a family member who is marginalized and diminished in our culture: "I don't think you can ever assume that the system will take good and appropriate care of your sibling with special needs," Pat said.

Much research has been done about the positive and negative impacts of a child with a disability on brothers and sisters. A 2003 study in the Journal of Family Nursing found school-age children who have siblings with disabilities scored significantly higher in co-operation, assertiveness and self-control than peers with typically-developing brothers and sisters. Yet we also know siblings may resent the attention the child with special needs receives; feel guilty they were spared the disability; and worry about how their sibling is treated. Siblings benefit from the same kind of peer support that parents find in support groups, but often don't have access to sibling groups.

Professionals tell us to make plans for our child's future care so that siblings don't feel responsible and will never have to assume the role of primary caregiver. But when the system is strained to provide even basic supports, is that realistic? I hope my other children play a leading role in Ben's life as adults and step up to the plate to ensure he lives a good life when we're gone. I hope they show the commitment, compassion and vision I see in Pat, which I believe is unusual.

In the June print issue of BLOOM we'll run a full interview with Pat about growing up with her sister Carol, making the decision to become her primary caregiver later in life, and current efforts to support Carol as she moves into a Community Living apartment.

If you’re in Toronto, you may be interested in a sibling workshop for parents and brothers and sisters of a child with a disability at Bloorview on April 27. Contact jchiu@bloorview.ca for more information.

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Self-care: It's not a frill!

Parents of kids with special needs know what it's like to live with chronic stress. Amy Baskin became one of those moms when her younger daughter was diagnosed with autism 14 years ago. As she traipsed from specialist to specialist, she noticed she looked like all the others moms in the waiting rooms: exhausted and overwhelmed. She searched for a book that would help her take care of herself while she tried to get the best help for her daughter. But she couldn’t find one. So she wrote More than a Mom: Living a Full and Balanced Life when your Child has Special Needs.

With co-author Heather Fawcett, Amy surveyed over 500 North American moms of kids with special needs, looked at research on families of kids with disabilities, and spoke to health and career experts about how mothers can hold onto their physical and mental health while navigating the demanding and often unpredictable world of child disability.

Look for a full interview with Amy in the June print issue of BLOOM. Here, we talk about why balance is critical – yet often elusive – for moms of kids with special needs, and what you can do to take the first step.

BLOOM: Why did you decide to write this book?

Amy Baskin: When I was first searching for ways to help my daughter, I never heard about resources and supports for me as a mom and a professional. I had this fantasy that when your child is diagnosed, you'd be told: "Here is a plan for your child. And here is your personal life coach, fitness coach, career coach, and the person who will help with your marriage and make sure everything is on track." Those coaches didn't exist, so we wrote the book.

BLOOM: What does research tell us about the unusual stresses that come with special-needs parenting?

Amy Baskin: We looked at old studies and the most current ones, and one thing they find over and over again is that challenging behaviour is most stressful. Physical and medical care isn’t easy, but from a stress point of view, behaviour is a huge issue. Then there are the multiple roles mothers have. Even if the mom is working full-time, she’s usually doing all the case management: booking the appointments, managing the child’s care, dealing with the school, managing behaviour, doing the emotional work. The Roeher Institute found that moms put in an average of 20 to 30 hours of personal care for their special-needs child on top of workforce and other family and household responsibilities. With that extra load comes little time for self-care. And no matter how positive we are, we all worry about what will happen in the future, when we’re no longer there for our child. So there’s too much to do, lots of stress, worries about the future and a lack of control. One study found that parents of children who are chronically ill have cellular content that is like a person 10 years older; stress ages them at a cellular level. The other big contributor to stress is that daily life in our community is designed for a typical kid. If I want to send my typical kid to camp, I phone the camp, get the information, fill out the form and away she goes. If I want to send my special-needs child to camp, it starts with: Let’s do the research. Let’s meet with the director. Let’s find a one-to-one worker. Everything we do has so many more layers to it.

BLOOM: What is the difference between coping and balance?

Amy Baskin: Moms of children with disabilities have more intensive and frequent periods of crisis. It could be your child’s medication isn’t working, or your child has become depressed, or you’re dealing with chronic behaviour. When we’re in crisis, we just cope. We need to get some sleep, to eat, and to have a friend to connect with. But there is no balance. Balance is what we do over time to maintain our physical and mental health because we know the parenting demands are greater and we’re at risk of depression. Balance is about looking after our physical health – sleeping, eating and exercise – and what makes us happy: knowing what you love to do and being able to do it, and having friendships and social connections.

BLOOM: What happens if we don’t pay attention to our own needs?

Amy Baskin: The stresses start to outweigh the joy and meaning we get from our child. We become negative and bitter. Then we have nothing left to give to our kid.

BLOOM: What did you find in moms who coped the best?

Amy Baskin: Their child with special needs was not the centre of their entire family’s life, which is really hard to achieve. Every single decision wasn’t made in light of that child with special needs. The happiest moms often had some kind of paid work. When they returned to work, their life felt more balanced and they had another world outside of their kids. Going to work was a break – a time to free their brain from thinking about their child and to get energized before coming back to the family. Moms who did best were involved in committees and groups that were changing the world to make things better for their kids. They also tended to exercise and there’s all kinds of research on how exercise can boost your energy and mental health. Moms who coped well used humour and took breaks. They went on dates with their spouses, booked child care so they didn’t feel they had to do everything themselves, and surrounded themselves with help – whether extended family, other parents of kids with special needs, or by using funding to hire university and high school students.

BLOOM: Why is it so hard for moms of kids with special needs to take time for themselves?

Amy Baskin: Guilt is a major barrier. I remember one woman at a workshop said: “I can’t even buy myself a cup of coffee because I know that money could go to my kid’s therapy.” People feel guilty leaving their child with someone else. Our society is so focused on helping the child that if a mom does something for herself, there’s a sense that she’s taking away from her child. The opposite is true. We know we have to fill ourselves up first, before we can give to our child. The better you feel physically and mentally and the happier you are, the more you’ve got to give your kids. Balance is not just a frill!

BLOOM: How can a mom take the first step in self-care when she's feeling overwhelmed and burned out?

Amy Baskin: Take baby steps. Look at one small thing you can do for your physical health each day, and add one small pleasure. With physical health, look at the biggest area of need. For example, if you're exhausted, rather than go to bed at midnight, take a bath and go to bed at 9:30. If you never exercise and feel terrible, go for a long walk today. Then add a pleasure: Get that book from the library and try that nice tea you bought and sit down and read for 10 minutes. Or call your best friend. Or do five minutes of deep breathing and visualization.

Have you read More than a Mom? We're looking for a mom to do a short review for the June issue of BLOOM. You can follow Amy Baskin at her blog at Today’s Parent Magazine.

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Now you see him, now you don't

It’s been cool to see families in the blogosphere reporting on their kids’ trials of different communication software that runs on an iPod.

For the last month, my son Ben has been using Proloquo2Go, which combines categories of words, picture symbols and photos, text-to-speech voices as well as a keyboard and a 7,000 word default vocabulary.

When you click on the iPod’s “app” screen, the owl pictured above appears alongside photos, iTunes and everything else you’d expect on an iPod.

Ben is part of a research project at Bloorview to see if Proloquo2Go increases his ability to communicate and meets his needs for a lightweight system he can carry.

The iPod itself is a perfect device for Ben – light, easy to manipulate with his small and weak fingers, and a platform he was already familiar with.

Some benefits we’ve seen are: he has photos of all his classmates in the device and suddenly we have a sense of how close he is to the other students and who he likes; he can make comments, which is how I learned he thinks I’m “cool;” he can easily ask for foods, drinks and activities he likes; he has access to a large vocabulary that includes exotic animals he loves; and we’ve been able to upload all of his Star Wars characters and their odd names, which we never had signs for.

When Ben woke during the middle of the night upset because he couldn’t find one of his characters, he could tell me it was “Hem Dazon” who was lost and we knew who to look for.

We still have a lot to learn with the Proloquo2Go, and need to work on making sentence construction easier. But we’re happy with the results: in addition to showing us he can read more than we thought, it’s enabled Ben’s personality to shine through.

Which brings me to last night. He brought me the iPod to show me that the Proloquo owl icon no longer appeared on the list of “apps.” It had vanished. I went into what my husband calls my “straight-to-panic” mode, and Ben signed that he had made the icon “go away.” When I asked if he deleted it, he nodded his head vigorously. Then he impishly signed “sorry.”

So today I have to get the researchers at Bloorview to reinstall Proloquo. I'm not pleased that Ben deleted it, and he better not do it again. But there's a part of me that's happy that he's so adept at using the iPod that he knew how. The kid has spunk!

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The sleepover

Our guest blog today is about a big event in every kid’s life – the first sleepover! It’s written by Marcy White, mom to Jacob Trossman, 7 (above, with his friend Batsheva). Batsheva also attends overnight summer camp with Jacob. You can read about Marcy’s work to raise research funds for Jacob’s rare myelin disorder at www.curepmd.com. Thanks Marcy! Louise
The sleepover
By Marcy White

My son Jacob, 7, had his first sleepover on the weekend. It was at a girl's house. Her parents were away for the weekend. And he had a great time.

Jake is not like most boys his age and can't do what most kids do. My little boy has Pelizaeus-Merzbacher disease (PMD), a disorder that affects all the nerves in his body. He can’t sit by himself, he can't speak and he can't use his hands to push a toy truck. But he understands conversations and has a wicked sense of humour. Physically, he is severely challenged. Cognitively, his sharp mind is trapped inside a body that doesn't work the way it should.

My young son with a smile that lights up his entire face has few friends his own age. Taryn, a girl 10 days his junior, is Jake's girlfriend. This incredible blond-haired girl with deep dimples on both cheeks donates all her tooth fairy money to PMD research so she can help find a cure for Jake's disease. Jake cracks up with laughter when she leans over to kiss his eyeballs. Another friend is Harry, a little boy who is seven-years-old and in the same class at school. Like Jacob, Harry is in a wheelchair and cannot speak. When both boys are placed on a mat on the floor, they hold hands and laugh together. When Harry's name is mentioned at home, Jacob grins.

But the majority of Jacob's friends are older girls—teenage girls—affectionately known as Jacob's Princesses because they always wear the long skirts favoured by orthodox Jewish females. These girls take turns holding my son and dancing with him. They complain about “Jacob withdrawal” if they don't see him for a week. So when one of them invited him over for a sleepover at her house, I immediately said yes.

Late Friday afternoon, with Jake's clothes, medications and liquid nutrition packed, his wheelchair and IV pole crammed in the back of the van, we set off for his latest adventure. During the car ride to his friend's house, I explained to my son that he was going to stay there for Shabbat (the Jewish Sabbath which runs from sundown Friday until after sundown on Saturday) and I would come pick him up the following evening. The smile on his face assured me that he was excited about this new experience. As I carried him into Batsheva's house, her warm embrace welcomed Jacob and allowed me to leave without a murmur of protest from my son.

Back at home, my house seemed different. It was quieter without Jacob. With both my daughters in bed by eight o’clock I realized that this was the first time since Jacob’s birth that I would be able to lounge around in my pajamas before going to bed. Emily, the night nurse, would not be arriving at 11:30 to tend to Jake's needs during the night. This would be the first time in almost eight years that my entire household was asleep at the same time. It was a normal situation for most families, but felt strange and unsettling to me.

The next morning was surreal. My typical Saturday craziness begins at 9 a.m. when Emily leaves. Within minutes, Jake is screaming and everyone is hustled into the car for a few hours of driving and time-wasting errands to Home Depot or Wal-Mart, until it is time for all the kids' swimming lessons. This particular Saturday was more serene. We stayed in bed and watched cartoons on television until mid-morning and gradually made our way to the pool in time for the lesson. It was a pleasant way to start the weekend.

But again, it didn't feel right. Jacob wasn't with us.

As the day went on, I noticed how quiet my house was. I wasn't glued to the clock to make sure I didn't miss a medication dose or run out of bibs for my chronic drooler. There was an element of tranquility in my home, a word that isn't usually used to describe our abode. But the calmer my life became, the more agitated I felt.

My mind kept drifting to thoughts of my son. I wondered if Jakey was having fun and what he was doing. Because he was celebrating Shabbat with his friends and the Sabbath rules dictate that they could not use the telephone, I was unable to get an update. As much as I wanted to, I could not get in touch with him, short of showing up unannounced at his friend's house. I reassured myself that he was in capable hands and if something terrible happened, surely I would be notified. I felt helpless but was trying to be strong so Jacob could have this incredible experience.

At 7 p.m. I went to pick Jacob up from his adventure. As I hurried up the front stairs and waited at the door, my heart beat hard with apprehension. Questions were swarming around my brain: Was he able to sleep in a new bed? Did he wake up scared and unsure of where he was? How was his day?

When the door opened and I saw my gap-toothed son sitting in his wheelchair in the middle of the living room, my racing heart slowed. When I was close enough to ruffle his thick hair and give him a big hug, I knew that he’d had a wonderful time.

My son had a sleepover at a friend's house. He had a fantastic time and by all accounts did not miss his mom. I, on the other hand, missed him terribly. But despite my internal struggle with his absence, I know I did the right thing in letting him go. Jacob has many medical issues that make his life more challenging than most. But he deserves to have regular childhood experiences and I will do whatever I can to facilitate them. Now if I can figure out a way for him to try waterskiing...

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'I'm still on the bus'

As a kid, Jonathan Mooney had dyslexia and couldn't read. The message that he wasn't normal led him to hate himself. A high school guidance counselor suggested he'd end up flipping burgers.

He defied expectations, graduating from Brown University and publishing two best-selling books.

The Short Bus: A Journey Beyond Normal chronicles his trip across the United States in a yellow special-ed bus where he meets children and adults who share one thing in common: they've been told they're broken—by autism, cerebral palsy and a host of other labels. There’s Jeff, a 46-year-old who’s unemployed, loves math and organizes a monthly lunch for mathematicians at the local university. He times every move he makes on a watch and may have Asperger Syndrome. Ashley is an eight-year-old girl who’s blind and deaf with a medical condition that causes tumors to grow all over her body. She likes to curse out her teachers in sign language. And Katie is a 24-year-old college student with Down syndrome who works at McDonald's. She’s not accomplished in a conventional way, but for some reason everyone feels better in her presence.

This book shows how our culture's idea of normalcy beats the life out of kids who are different and fails all of us.

What I love about it is Jonathan's honesty. He shares his own story as a rider on the short bus—small-capacity buses that transport kids to special education—and shows us how his perceptions about disability evolve when he has the opportunity to meet children and adults considered outcasts, and instead finds beauty, strength and a common humanity. "If you watch the strange, the other, the bizarre long enough, if you really see these people, you will find familiar pieces of yourself in their experience," he writes. I hope his words inspire you as much as they inspire me!

***********

BLOOM: How did you come up with the idea of taking a short bus around the U.S. to meet kids and adults with a variety of disabilities?

Jonathan Mooney: The short bus is a notorious symbol of disability and rejection in the U.S. After my first book was published, I spent a year touring around America hearing the stories of people who were labeled "abnormal" from many different perspectives. It became apparent to me as a short-bus rider and someone who was still in the process of understanding his own story that my "thinking through" of my relationship to "normal" and special ed was going to be the glue that held together these other stories. I decided to formalize this journey—to make it intentional—and that's when the idea of going around the U.S. and collecting stories came about.

BLOOM: Your own personal story is one of overcoming disability. As you say in your book—"From hiding in the bathroom, to Ivy League student to best-selling author." But many people you meet on your trip don't fit that profile.

Jonathan Mooney: I was struggling with being told I overcame my disability—that "overcoming disability" narrative didn't fit for me. I was trying to carve out for myself, and hopefully for others, a different "acceptance" narrative. The "overcoming" narrative situates disability as intrinsically negative and something that should be cured or erased from your life. Your disability is a core problem. The heart of the narrative in my book is about disability being a problem with the environment first and foremost—with the way the kid is treated—as opposed to the kid. The other problem with the "overcoming" narrative is that it disconnects you from a sense of community or fellowship with others who are told they're not normal. If I'm going to overcome disability, I'm done with it—it's not a meaningful part of who I am. My own journey is the antithesis of the overcoming story line. The message of the book is I'm still on the bus and I always will be. It's a meaningful part of my life.

BLOOM: What were the most important things you learned on your trip?

Jonathan Mooney: The first thing would be understanding the social construction of normal and how that isn't a physical fact in the world, but a set of human ideas we construct and deploy in certain circumstances that have a lot to do with power and commerce. The second would be that we can recreate normal in a different way. We're never going to get rid of it, but we can remake and redefine it in a positive way, and that is really hopeful. And the last thing would be the sense of connection and fellowship I felt with people like Katie and Jeff—and expanding my definition of who my community was. A huge lesson for me was that this little girl, Ashley, who has deaf/blindness—I felt a fellowship with her and with her mother's struggle. That was life-changing.

BLOOM: Often it seems that groups representing different types of disabilities don't share that sense of community—they may even disassociate themselves from certain types of disability.

Jonathan Mooney: That's a real challenge for the disability rights movement in general. It's so fragmented. So people with learning disabilities may get caught up in "You're too disabled, you're not like me," when referring to people with physical disability. People with wheelchairs may say "You're not disabled enough." The learning disability (LD) community wants to piggyback on the rights and structures that people with physical disability have created through their own advocacy—inclusion, services and legal protection. But then it turns its back on them. When my first book came out it was celebrated by the LD community. When I decided to include people with physical and cognitive disabilities in my second book, some of those same people said: "Why do you think there's anything to learn from them? Why would you associate learning disability with someone with autism?" There was almost a sense that I was bringing the LD community down. "At least the LD world is popularized. Why would you jump from that accepted thing into this freak show?" The construct of normalcy gives people with different physical and mental experiences the common ground of being told 'you're not normal' and a sense of fellowship with a whole continuum of folks who have been told that.

BLOOM: How did your perceptions—particularly of children with severe disabilities— change during the trip? One of the neat things about the book is we see your thought process change.

Jonathan Mooney: I began to see their experience through a rights perspective and not a medical perspective. So for Ashley, her world is organized through the medical model: she's deaf/blind. But at the end of the day, for her mom Deb, it was all about inclusion and access and respect—about rights issues. Deb said that all of Ashley’s surgeries didn't hurt as much as when she was pulled off the stage after one song at the Christmas concert. That’s a staggering statement. A lot of us would assume that the tragedy for a kid like that would be the surgeries, but for Deborah, the real injustice that hurt the most was that moment. I began to see that for kids with significant medical challenges, a core part of the challenge is a rights issue: a struggle for inclusion and respect and dignity. That was a real lesson for me.

BLOOM: How can we hope to change attitudes when most people don't have the kind of intimate exposure to disability that you did?

Jonathan Mooney: We have to make exposure and inclusion a strategic aim of the movement—whether that's the larger disability rights movement or a hospital like Bloorview. It's why programming is a core initiative of what I do. We have a long way to go. Making sure my son goes to school with people who have different abilities and physicalities is how we will raise another generation of people who don't look at people with physical and cognitive disabilities as "other" than themselves.

BLOOM: There's a sense among the general public that we do school inclusion well now. Yet too often we hear about a kid with significant disabilities being parachuted into a regular class without adequate supports, and the child isn't accepted like the other kids.

Jonathan Mooney: The devil is in the details. Inclusion is not just shifting physical space. It's a technical project and a moral and ethical project. The old special-ed model says the problem lies in the kid. An inclusion model looks at what happens around the kid. If we want inclusion, we have to shift the area of intervention from the kid to the environment—to the peers and the teacher and what happens around the kid. Unfortunately, folks continue to do inclusion in a treatment model. That's detrimental to everyone, because we know inclusion doesn't work without environmental change. Then when it doesn't work, they blame inclusion.

BLOOM: What advice would you give children with disabilities?

Jonathan Mooney: Believe the people in your life who tell you that you're not broken and the problem is our narrow understanding of what is an acceptable human being. Come to an understanding of yourself as someone who is valuable and not broken and someone who is facing a civil rights struggle and not a medical struggle. From a practical perspective, become an advocate in your life. And find something you like to do that aligns with your talents, whatever they may be, and see if you can build a life on that. Most children in special education are robbed of the opportunity of developing talents and interests because all their time is spent in interventions and treatments.

BLOOM: How important is language in perpetuating stereotypes?

Jonathan Mooney: Our language is a conduit that reflects and shapes our thinking. The important aspect is the "thinking-through" piece. There's a temptation to do a rhetorical shuffling of the deck chairs. So we didn't call LD a learning disability for a while, we called it learning difference, but kids were still in special ed all the time and the high school drop out rate was 60 per cent. Activism starts with language and language is a catalyst to exploring our ideas and the way we think about difference. But language change needs to stem from, and lead to, thought change. I'm all about advocating for people who "experience" disability. It makes it not about the person, but the context. People have their physical differences. I will always be dyslexic and someone with Asperger's or Down syndrome will always be someone with that physical trait. But that trait only becomes a disability in certain contexts. The idea is to focus on where someone experiences a disability and how we can change that context.

BLOOM: My favourite part in the book was when you visit Katie, who has Down syndrome. Her world was all about relationships. She doesn't care about winning the card game, and she has her own notion of celebrity, which isn't confined to the images we see in the media, but includes her father, a teacher and her brother. How can we convince the general public that people like Katie have lessons to teach us about living a good life?

Jonathan Mooney: We have a notion of a consuming, autonomous individual that is essential to our economy, the person who buys and consumes, and if you can't do those things you aren't valuable. The challenge is for people—whether you're a parent or an individual with a disability— to move from being "patients" to being "agents." The Latin root of the word patient is to be flat on your back. When you're a patient, you have nothing of value. You're going to be treated and cured. When you're an agent, your self perception informs your belief that others can learn something from you. What's the tipping point? When do we shift from thinking of “Down syndrome” or “LD” kids as abnormal people that need to be treated or cured to thinking of them as people with a physical or cognitive difference who can teach us something, people who should be empowered?

BLOOM: What are your hopes for the future?

Jonathan Mooney: For a whole host of communities who experience disempowerment and medicalization, my hope is that enough of us—whether we're policy makers, writers or bloggers—can challenge that disempowerment and bring an experience of power and competency to folks who are pushed to the margins. That's what social change means for me. Can I play my role through writing, speaking and programs to empower and inspire enough other people to name the problem? And the problem is not Down syndrome or Asperger's or ADHD. It’s the fact that people are often robbed of their agency as opposed to empowered. We need to create programs and ideas and books and films that change that.

Jonathan Mooney lives in Santa Monica with his wife Becky and two young sons. He calls himself a social entrepreneur and is working on two books—one about the neurodiversity rights movement. In addition to his writing, he speaks on disability and inclusion, co-founded Project Eye to Eye, a peer-based mentoring program for students with learning disabilities, and designs programs that move marginalized people, including those with disabilities, into life-changing careers.

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The tyranny of two words

Mental retardation was coined as a medical term over 50 years ago—a then neutral term to replace idiot, imbecile and moron. But a quick trip to the thesaurus reveals that the words today mark a person as “abnormal, subnormal and deficient.” And any kid can tell you that the shortform “retard” connotes someone who’s useless.

Special Olympics is holding an awareness day today to encourage people to give up use of the R-word in casual, everyday language. I wrote about my support last Friday. But ever since then I’ve found myself fretting about the two words the R-word originates from: mental retardation.

Divorced from our culture, the words are relatively benign, indicating mental slowness. My angst stems from the realization that there is no way of separating out the stigma our culture attaches to these words.

My post may have implied that I’m totally cool with the clinical use of the words, when really, I’m not. They felt like an assault the day I first saw them attributed to my son, and they still do.

More importantly, I never, ever think of him in that context. What I mean by this is that I do not see my son—in any way—as “abnormal, subnormal and deficient” or as somehow of less value than someone with average or Einstein-like intelligence. He is a child who struggles to learn, but I do not see him as “slow.”

Mental retardation is not a topic of discussion in our house and we never told Ben about the diagnosis. We may talk about why things are harder for Ben to do, but we don’t label that under the catch-all of mental retardation. This is similar to our approach to our adopted daughter who has issues related to trauma and attachment. We might talk about why kids whose biological families are disrupted early have problems trusting others, but we would never tell our daughter: “You have attachment-disorder. You are attachment-disordered.”

On an everyday basis, these clinical terms that seek to categorize and delimit have no relevance to our life.

I remember a family whose healthy son had a massive, unexpected bleed in his brain. After months of gruelling rehab he regained his speech and some mobility. When his mom spoke to him about the fact that he’d lost his vision, his response was: “Mom! I may not be able to see. But I'm not BLIND!”

No one wants to be defined by a label that puts them in a box!

Perhaps some of you have the same feeling about the word disability. Because I've worked in a pediatric rehab hospital for so long, I've become desensitized to the word. But I remember when Ben was young I didn’t in any way identify him with having a disability, or being the opposite of “able.” I still don't think of him as “disabled” even though he has multiple disabilities.

People with disabilities have taken ownership of a word that was once used to stigmatize them, but the word itself—taken at face value as a negation of ability—hardly seems a starting point for describing the complexity of a human being. It doesn't in any way describe the flesh-and-blood people who adapt to all kinds of differences.

When I look at my son, the defining characteristic that rises to the surface is not disability. It's a mix of honesty, capacity for great joy and connection, and enthusiasm for life.

I see a kid who loves scrolling through photos of his classmates and family on his iPod. A kid who loves to dance to Pixar theme songs like “You've got a friend in me.”

I see a young man who stops on a busy sidewalk to wave his hello to the homeless man sitting on the concrete. One time he approached a man using a walker in a park and spontaneously gave him a hug. Another time he saw a man with dwarfism in a store and gave him an enthusiastic pat on the back (Ben too has a form of dwarfism).

I see a kid who humors his mother by calling her “cool.” And a kid who knowingly signs “sad” when his mom talks about missing Grandpa.

I see a teen who’s never been able to speak and struggles to hear, but surprises his parents and researchers by scrolling through an iPod he’s been given to communicate and finding folders we didn't think he could read: one for “manners,” one called “categories.”

My son experiences life fully. He’s already looking forward to his birthday at the end of the month. So last night when a package arrived that he figured held Star Wars characters he’s been asking for, he couldn’t contain his excitement. “When are you wrapping them?” he signed repeatedly. “When will I open them?” Then he went downstairs to look for the big container we keep the wrapping paper in. “Can I help?” he asked.

He’s a boy who adores tradition – he still likes pin the tail on the donkey and piñatas.

He’s someone who can lose himself in the silliness of a funny book or movie—giggling with abandon—even though he’s experienced more physical pain than I can imagine.

A couple of weeks ago I rubbed his back when a doctor held a mask to his face and he breathed in the stinky propofol that would knock him out for a cat scan. He's got more guts than I'll ever have.

My son is my hero. He's taught me more about life, about love, about courage and about what matters, than anyone.

Is it any wonder that parents like me want to throw off words that don’t in any way do justice to the essence of our children, and which have been twisted into epithets of cruel abuse?

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Worth a look

Hope you find these of interest—I did!

The opportunity of adversity

The thesaurus might equate “disabled” with synonyms like “useless” and “mutilated,” but ground-breaking runner Aimee Mullins is out to redefine the word.

There's no such thing as the perfect child is an essay in the Globe and Mail by Edmonton writer Sue Robins, a mother we feature as a trailblazer in the upcoming issue of BLOOM. Here, Sue talks about troubling parent attitudes toward her son with Down syndrome and about one particular mom who asks why she didn't have prenatal genetic testing.

Opinion: Disability-free world may not be a better place

Bioethicist Arthur Caplan of the University of Pennsylvania raises important questions about a recent study that shows a significant decline in the birth of children with genetic conditions in the U.S.

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