Are kids with 'behaviours' bad?

The other night I woke with a vivid memory.

I was in junior high taking band class. 

Because I didn't step up quickly when the horn instruments were handed out, I ended up playing the oboe. 

The oboe is a woodwind instrument that looks like a clarinet but has a long, double reed. In the Middle Ages it was played by huntsmen and shepherds. It has an unusual, haunting sound.

You can imagine what it was like to hear a group of students play a trumpet or french horn or oboe for the first time.

Our music teacher was kind, exuberant and patient. In time we made progress.

But one day something upset him. I don't remember what it was. Perhaps one of the students purposefully played out of key, or did something to grandstand.

I started to laugh, and I couldn't stop.

The teacher reprimanded me.

I was not a student who got in trouble.

I earnestly wanted to stop laughing, but I became nervous. Very, very nervous.

Now the class was silent and everyone was staring at me.

"Louise, you're being incredibly disrespectful," the teacher said.

"I'm sorry," I said, but giggles continued to splutter out of my mouth.

"Shhh!" whispered the other oboe player.

I was now red with embarrassment, but I couldn't stop.

"Louise!" bellowed the teacher. "That's enough!"

He thought I was defying him. He thought I was laughing on purpose.

I think the reason this memory came to me was because it shows how easy it is to attribute malice to behaviour that is actually prompted by anxiety.

My son has compulsive behaviours that emerge when he's anxious. He knows he's not supposed to do what he's doing, but he gets stuck in repetition. 

I think our world is most unaccepting of difference when it involves behaviour. We're most uptight about how people act, more than we are even about a person's abilities or how they look. 

It reminds me of a study published in Autism that looked at parenting stress in two groups: one of mothers of preschoolers with autism and the other of mothers of preschoolers with developmental delay. The study found that challenging behaviour was more stressful than a child's need for greater physical care, such as feeding, dressing and toileting.

People have greater compassion for parents who have to help their child with everyday activities other kids have mastered than for parents who are supporting a child who doesn't "fit" social norms.

Read More

The R-word: It's a hateful slur that's got to go

Use of the word “retard” is so pervasive it's said in the White House and even in our house. I remember when I first heard my pre-pubescent daughters and their friends—good, caring kids all—peppering their sentences with reference to how “retarded” certain people or things were. “Don't be a ‘tard,” rolled off one of their tongues and I felt like I'd been sucker-punched. “In the olden days, that's a word that was used to describe people like your brother Ben,” I said, eyes wide and wild. “It's demeaning and we don't use it.”

“I don't mean it that way,” my daughter said. “Stop freaking out, Mom!”

I'm sure White House Chief of Staff Rahm Emanuel had a similar reaction when he got in hot water in January for calling liberal activists “f**cking retards.”

“I don't care if you don't mean it,” I’d tell him, as I told my daughter. “You know the origins of the word and how it's been used to discriminate against people like my 15-year-old son (above).”

Of all disabilities, mental retardation is most loaded with stigma—a badge that singles one out as subhuman, worthless, and elicits a shocking degree of hate and fear, even within the disability community.

As a parent of a child with mental retardation, I don’t mind the clinical use of the term. In fact, I bristle at the thought that my son’s medical condition is so shameful it can’t be named.

The colloquial use of the word “retard,” however, has got to go; it’s evolved, since the inception of the clinical term 50 years ago, into a hateful taunt against one of the most marginalized groups in society.

Why is the stigma so entrenched? Prejudice against people with low intelligence has a long, little-known history that gained momentum in the first half of the 20th century and included a state-sanctioned killing program in Nazi Germany. Social Darwinism and eugenics played into a ranking of human worth—based on intelligence, economic contribution and behaviour—in which people with intellectual disabilities were deemed genetically inferior and thus less human.

The result? Between 1939 and 1943, 6,000 German children with physical and intellectual disabilities were killed through starvation, exposure to cold, poisoning and lethal injection. Over 70,000 adults with disabilities—including mental retardation—were gassed to death during early WWII in six killing centres set up for the purpose.

To those who say that’s ancient history, let’s look at some of the more recent hate violence against people with intellectual disabilities. Last week, an Italian Facebook group with 1,700 followers proposed that children with Down syndrome be used for shooting-target practice.

U.S. officials are investigating whether the horrific torture and death last week of Pennsylvania-resident Jennifer Daugherty—a 30-year-old with a mental capacity of 12 years—qualifies as a hate crime.

And a New York Times Motherlode blog in January titled “Should Down Syndrome be cured?” produced a slew of reader comments that implied life with intellectual disability is less than human.

“The reason it is called a disability is because it is a lack of something that makes a complete human being,” one reader noted. “That is a tragedy; it is not another equally good form of personhood.” Said another: You’ll never meet a doctor or a lawyer with Down syndrome.”

Doesn’t that sound like a ranking of human worth based on IQ? Are people with high intelligence genetically superior, inherently “better” people than others? Are we less human when our academic intelligence is limited?

Eugenics-like thinking spills over into the field of prenatal genetic testing.

Sixteen years ago, when I balked at having an amniocentesis after finding out I had an increased risk of having a child with Down syndrome, the grey-haired obstetrician sent in to “counsel” me flipped: “If you have a Down syndrome baby, that’s a burden you’ll live with for the rest of your life,” he squawked, eyes popping and mouth twisting. “If you have (an amnio-induced) miscarriage, you’ll be depressed, but then you’ll get pregnant again and have a ‘normal’ baby.”

When I later gave birth to a child with a rare genetic condition, a genetic counsellor explained it was a random, not inherited, occurrence then enthused: “You have every chance of having a perfect baby—next time!”

Doesn’t talk of perfect and imperfect babies, of normal and abnormal babies—in the profession of prenatal testing—make you shudder? Isn’t it just a little simplistic? Is even the healthiest baby in any way destined to be perfect? I thought to be human was to be imperfect.

My son Ben managed to elude a diagnosis of mental retardation until he turned 11. He was challenging to test because he didn’t speak. I remember the day I opened a psychological report and for the first time saw those two words—mental retardation—staring back at me. “It doesn’t change anything,” I told myself, but as the night wore on I railed against it, unable to sleep, and wept in my boss's office the next morning.

But when I looked more closely, I saw that my sorrow wasn't for my son—who had not changed one iota since the night before and was no less whole in my eyes—but for the terrible stigma that had befallen our family.

And I couldn't help thinking, like so many other things I’d learned in life: “It’s not what I thought it was.” My conception of mental retardation prior to having Ben in no way matches the reality of his life—or of my ability to love him. My son is bright and clever and curious and a million other good things that are visible to people who take the time to get to know him. And he has a rare gift: he has no pretence. He accepts himself and others as they are. In that way, he is more able, more evolved, than I am.

My first instinct as a mom was to hide his diagnosis. But how will we ever change perceptions if we’re too afraid to talk about taboos? So I wrote about it in the hope that it would convey that my kid has this thing—and he’s awesome. Yes, my kid is mentally retarded and I love him. No, I would not change him. No, I do not feel his worth as a human being would increase if his intelligence shot up.
We also need to talk about the violence and discrimination associated with the common, crass use of the word “retard.” And in the same way we’ve outcast the N-word from the popular lexicon, we need to give the colloquial use of the R-word the heave-ho.

“You can’t ban use of a word!” some will say.

No, you can’t. But you can make it socially unacceptable to use it. Case in point:

My 10-year-old Haitian son Kenold came home from school one day and surprised me by saying: “Someone called me nicked.”

“Nicked?” I said. “Do you mean ‘naked’”?

Of course it didn’t take long to realize the kid had called him a “n**ger.” After discussing what the word meant and why decent people didn’t use it anymore, I called the principal. Her response was swift.

The next day, she called Kenold into her office and had him look through photos of the entire student body (Kenold hadn’t known the child who taunted him). As soon as he was identified, he was hauled into the office, educated about the word, and his parents were called. They were told if it happened again the kid would be suspended.

End of story. End of problem (though I know racism is something he’ll be up against all his life).

Things aren’t always that simple. But why couldn’t similar social limits be placed on kids’ use of the word “retard?”

The social justice curriculum that has helped rid schoolyards of racial epithets needs to be broadened to include the history of discrimination against people with intellectual disabilities and education about why the R-word is a hateful slur.

Then we need to hope that role models—from movie stars to Emanuel—get with the program to make demeaning people with mental retardation “uncool.”

I support Special Olympics in its awareness day March 3 to Spread the Word to End the Word.

Read More

Laughter is 'a spark of light'

Amateur comedian Lloyd Ravn (left) has raised over $3,500 for Bloorview Kids Rehab through Laughs for Possibility, a comedy showcase he organizes that features some of Canada’s funniest people. Lloyd’s son Eric (right) has received inpatient and outpatient therapies at Bloorview, as well as attending one of our community nursery schools. In this guest blog, Lloyd explains how Eric’s journey inspired him to enter the world of comedy, and how laughter is an indispensable tool for parents of children with disabilities. I'm grateful to Lloyd for this important reminder! Louise

Laughter is ‘a spark of light’

By Lloyd Ravn

I suppose I’d always considered laughter to be important in the healing process, but hadn’t really thought much about it. Ironically, it was April Fool’s Day four years ago when the therapeutic power of humour was demonstrated to me.

I was giving a eulogy at my father’s funeral on the day that my son Eric turned seven weeks old, and I was sure I wouldn’t get through it without losing my composure.

Remembering a conversation with Dad in which he said that when his time came he didn’t want his funeral to be too serious, I opened with a joke. The tension in the church fell as everyone laughed. That chuckle let me clear my head and get to the end of my speech in one piece. It certainly didn’t take away the pain of knowing that my father wouldn’t see my son grow up, but it helped me get through the next part of my grieving process.

A few months later, my son Eric was identified as having global developmental delay. Doctors were telling my wife Jodi and I things like: “we may never find a cause for his delays” and “we can’t predict if he will ever walk or talk.” We went home to the Maritimes for Christmas, and the laughter that a visit with our family always brings helped us stay grounded so we could use our energy to help Eric with his new therapy regime, rather than focusing too much on the fear of the unknown.

In Eric’s physical and occupational therapy sessions, we pushed him to try things that were exceedingly difficult. As I cheered “you can do it” over and over, I came to the realization that if I was going to ask him to confront a difficult task, I should challenge myself to do something that I found hard. Unlike Eric, I had the luxury of choosing this task, but pushing myself in some way would help me feel a little better about working him so hard. I decided to force myself to try something I’d dreamt about since elementary school, but never really imagined I’d have the courage to do: stand-up comedy.

When I took the stage at a local ‘open-mike’ show, and the audience laughed at the material I’d written, I felt a buzz like I’d never felt before. Making a room full of people laugh was therapeutic for me, and that release once again helped clear my mind so I could get on with the important job I had: helping Eric.

I continued to perform at amateur shows and noticed that people in the audience would approach me afterwards to tell me how much they needed a laugh that night to relieve the stresses in their own life. I loved these reminders that the healing power of comedy is a two-way street: the audience’s laughter gives me the charge I need, and at the same time provides them with an important tension release.

Last year, about two years after I started comedy, Eric was progressing well with his therapies when a dream visit to the Maritimes with his mother and brand-new brother Alex turned into a nightmare. At his grandparents’ cottage in Prince Edward Island, it was clear that something was wrong with Eric. Shortly after arriving at the hospital in Charlottetown, he began to have seizures, which took several doses of medications to control. When he didn’t regain consciousness, he was airlifted to a children’s hospital in Halifax where doctors confirmed that our three-year-old child had suffered a major stroke.

I’ll never forget the moment, late at night, when the neurologist broke the news to us. Everything was suddenly blurry and out-of-focus. I didn’t know if I could deal with what he was saying. Then, as he continued explaining the situation, he found an appropriate opportunity to make a light joke. As I laughed, the fog cleared, and I felt better about facing the challenge ahead. Jodi and I have mentioned that laugh several times – agreeing that the tiny spark of light in that very dark moment helped us both move forward. We’re thankful to the doctor for it.

After that stroke, Eric had to relearn almost everything from scratch, including his gross- and fine-motor skills and expressive communication. When he was well enough to return to Toronto, he spent several months at Bloorview, first as an inpatient, and then in the day program.

Doctors are still trying to figure out a diagnosis to explain Eric’s developmental delays and strokes (plural, because in May of this year he experienced two more major strokes which have put him back at ground zero in terms of his recovery). Dealing with the unknown in Eric’s case has been extremely difficult. It makes it hard for Jodi and I to keep our minds in the present, rather than getting lost in worries about what might come.

Eric’s team at Bloorview recognizes two important things: that Eric’s recovery is dependent on the entire team, including Jodi and I, and that the whole team will benefit from, and be more successful as a result of, the therapeutic value of laughter. Every day, I see therapists, doctors, nurses and other team members sharing a laugh with the kids and families they work with, and I remember that it’s those light moments that help us all keep moving ahead.

If your child is recovering from an illness or injury or dealing with a disability, it's important that you keep those two things in mind. The way you deal with the situation will impact the way your whole family copes, and allowing yourself a little laughter therapy is sure to improve your ability to keep your mind focused on the important task at hand.

I’m not suggesting that everyone take up stand-up comedy, but that you think about what makes you laugh, and try to find opportunities to laugh a little everyday. It’s okay, even important, to laugh at a joke when you’re going through difficult times.

I think the easiest way to keep laughing is to watch and listen to our kids. Children are naturally hilarious because they don’t have the same inhibitions as adults. They’re sure to say or do something funny every day. And they love to make their parents laugh, so taking your cues from them can provide your kids some laughter therapy as well.

If you need a little more in-your-face laughter, treat yourself to an evening out at a live comedy show (there are shows happening in Toronto every night of the week – a quick internet search will help you find one that fits your sense of humour), or a funny movie, or just a few minutes with other adults sharing a laugh over a cup of coffee.

Contrary to popular belief, laughter is not inappropriate in a dark situation, it’s critical. As a parent, your family is depending on you to keep your head in the game, so take advantage of laughter’s power to do just that.

Read More