Friday, February 26, 2010

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.

Monday, February 22, 2010

The strongest people 'know how to be weak'

"You know what – it’s easy to be brave. Just remain yourself in the face of adversity. I love simple people. The ones who don’t change at every detour on the road of life…Maybe this is exactly what binds me to these people who are affected by an intellectual disability. Their simplicity—it’s not something transitory; it is innate and natural. Their courage is not overinflated; rather, it is silent—and it falters. Because courage also sometimes means knowing how to be afraid. This past weekend, Gustave, my taxi driver in Port-au-Prince, told me that the strongest people are those who know how to be weak. Surely, a 43-year-old man who survived the catastrophe only to have to dig through the rubble to find his three lost children, surely he would not tell me a lie." Jonathan Boulet-Groulx, L'Arche Haiti

The strongest people 'know how to be weak'

I met with a friend of mine yesterday and she told me about a friend of hers – Canadian photographer Jonathan Boulet-Groulx – who is in Haiti working at a home for people with intellectual disabilities run by L’Arche. You can read his moving blog at Mwen pa fou.

This got me thinking about my three trips to Haiti. Six years ago, my husband D’Arcy and I volunteered at an orphanage for a week in Port-Au-Prince. That’s where we met two children we would eventually adopt. During that trip, we visited Wings of Hope – a home for children with disabilities (photo above from the Wings of Hope website). Many of the children had cerebral palsy. We had taken some old but still useful equipment the physiotherapists were no longer using at the former Bloorview site. We also brought books. I'll never forget the excitement of a teenage girl when she saw we had a book with the alphabet in sign language. She was deaf.

The home was run by Americans, and it was shocking to learn that the kids never got out. We were told that disability was viewed as a manifestation of evil – a curse – in Haiti, and that most children with disabilities were abandoned at birth. People with differences were ridiculed and families didn’t visit the home.

Out in the streets, people with disabilities simply did not exist. You did not see them! In addition to the stigma that kept people hidden, Port-Au-Prince can’t be navigated from a wheelchair or walker. The streets are steep, littered with rocks and potholes and lined with open sewers.

It made me sad to think of those delightful children hidden away, separated from their families and the community, children who had so much to contribute and deserved to be able to learn and explore outside the walls of the home.

Handicap International estimates that between 2,000 and 3,000 people in the country have had amputations as a result of the earthquake in January. How will these people be integrated back into a society that shuns people with disabilities, where three out of four people are unemployed, and where the little work available is hard physical labour?

We can only hope that the increased visibility of disability and difference will break common stereotypes and increase opportunities. I salute Jonathan Boulet-Groulx and the work he’s doing to bring awareness to children and adults with intellectual disabilities in Haiti, people who have been particularly marginalized in that country. Bravo! Louise

Friday, February 19, 2010

Therapeutic clowns stir unresponsive children

In the first study to measure the long-term physiological effect of therapeutic clowns on hospitalized children, Canadian researchers show that even a child in a vegetative state and those with profound disabilities respond to the red-nosed performers with changes in skin temperature, sweat level and heart and breathing rate.

“Every child showed a physiological response to the clowns that they didn’t show when watching television, and this included children who can’t express themselves verbally or through movement and who appear to be non-responsive,” says lead author Shauna Kingsnorth, a postdoctoral fellow at Bloorview Kids Rehab. Research shows that changes in body signals are reliable indicators of emotional states.

The study was published February 4 online in Evidence-based Alternative and Complementary Medicine.

The scientists measured physiological arousal, emotion and behaviour in eight inpatients at Bloorview over four days. Their conditions included severe cerebral palsy, traumatic brain injury and brainstem stroke. Velcro bands worn around the children’s fingers measured skin temperature, sweat level and heart rate, and a belt around the chest tracked breathing.

On two of the four days, the scientists measured the children’s reaction to watching 10 minutes of a television show. “Television was a good comparison because the TV is noisy and colourful, like the clowns,” says Stefanie Blain, a PhD biomedical engineering student at Bloorview and co-author of the study. On alternate days, researchers tracked the children’s response to 10-minute visits with Ricky and Dr. Flap (above) – two clowns who engage them with physical and emotional comedy and music, letting the kids direct the action as a means of empowering them.

Five of the eight youth – aged four to 21 – could speak, express emotion through facial expressions and point; two were non-verbal but could show facial emotion; and one child was non-verbal and unable to gesture or use facial expression.

“The physiological data was our main assessment tool and allowed us to include children with profound disabilities who are generally left out of research,” Kingsnorth says. “But we augmented this information with observed information – documenting the frequency of typical expressions of emotion such as smiling, laughing, crying and grimacing – and asking children who could speak to identify their mood by talking about, or pointing to, a card with a face that best depicted how they were feeling.” At the end of the four-day study, children who were verbal participated in a brief interview.

“Most exciting was that every child showed a unique physiological change with the clowns,” Kingsnorth says. “With one child who wasn’t verbal or physically expressive, the research assistant was sure he had been asleep the entire time. But then Stefanie downloaded the physiological data and came running over just about to cry, and you could see how much the child was responding.”

Children’s skin, heart and breathing signals were pulled more frequently out of resting states or the pattern of the four signals changed when the children visited with the clowns. “They’re subtle cues that can’t be picked up by the eye and demonstrate that clowning has a direct effect,” Kingsnorth says.

But what happy or sad looks like physiologically in one child may be different in another, and more research is needed to decode the signals in children who can’t corroborate how they’re feeling through behaviour or speech.

The study began because the therapeutic clowns at Bloorview wanted a way to evaluate their work with children who couldn’t give feedback in conventional ways.

Study results from participants who could report or show their feelings included significant increases in smiling and laughing and decreases in grimacing when interacting with the clowns, as opposed to watching television. Children who could speak showed a positive change in mood following their time with the clowns and no change in mood following television viewing.

The findings suggest therapeutic clowning has a direct, positive impact on hospitalized children – including those with profound disabilities – “and provide hard evidence to support its funding,” Blain says.

The researchers say physiological tracking is a tool that can be used to evaluate a variety of arts interventions for children with disabilities who can’t express themselves in traditional ways. “In future, if we can identify positive and negative physiological responses, we can use that information to create stimulating environments for children who can’t overtly tell us what they like,” Blain says.

A mixed bag

Hi all -- Ellen at To the Max has a contest where American readers can win a $50 CVS pharmacy gift card by sharing game and play activities that promote their child's development. Many of Ellen's followers have shared their tips in the comments section.

Enjoying the small things is an exquisite blog where a mom of a new baby girl with Down syndrome recounts her experiences in words and stunning photography.

A couple of weeks ago, this question was posted on the BLOOM blog in reference to a post about inappropriate conduct that occurred at a private ABA centre.

If a person wanted to check credibility/incident reports on an establishment that is involved with special needs children, where do they call? Do all therapy centres and daycares have to be registered? And with who?
Here’s a response from staff at Bloorview nursery schools, which applies to Toronto and Ontario (readers elsewhere will need to check requirements in their jurisdiction):

All daycares must be licensed with the Ontario government and the results of inspection must now be posted for public view. There is a graph to show areas of compliance and non-compliance by percentage.

As for credibilty/incident reports, it is our understanding that the difference between applied behaviour analysis (ABA) and (intensive behavioural intervention) is that ABA settings are funded in such a way that they can accept payment through private-health insurance. Other than that, we think there is very little regulation. Both ABA and IBI programs should have a psychologist attached to them. If they don’t, that would be a red flag for parents.

The challenge for families is understanding which programs have checks and balances such as registrations to operate, annual inspections and reporting duties that can be accessed publicly. In the field of children's services, IBI-ABA services for children are relatively new. The number of not-for-profit programs has not kept pace with the profit-based programs and services. There are many private programs, schools and preschools around that 'specialize' in the services of IBI-ABA. As the non-profit options seem so limited, families they have to work with what they have. Parents trust that the service providers operate all parts of their program at the highest possible standards, using the most up-to-date methods and trained staff. We know this is not always the case.

The program spoken of in the blog was defined as private. However, if a parent was unsure of a program's status, our advice would be to:

Ask if the program/service has any provincial/state or city funding. A “no” to both probably means the program is private and has less formal public reporting structures regarding credibility/incidents. If the answer is “yes,” there is likely a way to check the history of a program. A parent would need to call the ministry or department the program is funded through (for example, Ministry of Health, Ministry of Children and Family, Toronto Children’s Services). For programs with no funding ties to tax-payer dollars, parents are on their own to ask the “what if” questions.

The conduct that concerned the parent in the blog could also be reported to the therapist’s respective professional colleges or universities.

In Toronto, the Geneva Centre for Autism can provide helpful advice to parents.

Friday, February 12, 2010

Music serves to soothe the pain

No child likes needles, and coaxing kids to remain calm while receiving Botox injections to relax tight muscles caused by cerebral palsy was stressful for parents in Bloorview’s spasticity clinic.

But an innovative program that combines music, visual arts and medicine is reducing children's anxiety, helping them find creative ways to cope, and cutting procedure times in half.

Armed with a guitar and a variety of drums, rattles and art supplies, Bloorview music therapist Andrea Lamont (above) and artistic co-ordinator Sarah Dobbs meet with families before the procedure to “assess what type of music will work well to distract this child and what pieces are soothing – whether there's a familiar lullaby mom and dad sing at home,” Andrea says.

Dr. Darcy Fehlings, the developmental pediatrician who leads the clinic, says the music intervention reduces anxiety in most children before the procedure and decreases injection pain in about 50 per cent.

Before the procedure, “they have fun, find instruments they like, make choices, make mom and dad play, conduct the music, and feel more in control,” Andrea says.

Children then take the instruments as companions when they get up onto the clinic bed and lie down to receive injections. “We let them know that it's okay to bang the drum hard when they hurt,” Sarah says. “Normally when a child is in a medical environment and makes a lot of noise, they're told it isn't good behaviour.”

Andrea, who sings and plays the guitar during the procedure, matches the child's emotions in her music. “I watch Dr. Fehlings and as the needle goes in, I increase the tension by going from regular sounding music to something like the Spanish or Middle Eastern idiom, or adding volume or texture and more tension in my voice. From a therapy point of view, when you're willing to match the child where they are, they feel the music is a partner through the procedure. It's telling the client 'I hear you and I recognize your pain, and I'll scream along with you.' When the needle is removed I bring down the tension and sing soothing, calming pieces and the parents give the child a hug.”

While Andrea sings, Sarah supports children by offering them ways to express themselves with a drum or rattle. “A child may feel trapped by their vision of how the procedure will be," Andrea says. “They may tell themselves: ‘It was terrible last time and I'm going to be in pain and there's nothing I can do about it.’ We help open the blinders by offering creative activities that promote problem-solving: ‘I can't do anything about the pain, but Sarah is offering me the shaker. I can do something. I can hold onto something and I can make the bells go.’”

Megan Perron, a nurse in the clinic, says the procedure time of 10 minutes has been cut in half since the introduction of “the music ladies. When the anxiety level is down and the child is cooperating and less scared, we can get the injections done in five minutes. They can hit the drum or bang the symbol to get their frustration out, and they know it’s acceptable to be upset by the whole process. They may still scream, but with the music, they lie still. The parents see the difference. When the child is calmer, everyone is calmer.”

A favourite instrument is a large ocean drum with a pattern of fish on the outside fabric and a clear plastic top. Inside are ball-bearings that move and swish as if in water when the drum is moved. “You can increase or decrease the intensity, so it sounds like a soft lapping of water or a big rush of waves,” Sarah says.

She notes that the arts are accepted as “an integral medical tool” at Bloorview and are increasingly used alongside traditional medicine and therapies. “In the 1950s the World Health Organization said that health had to do with the wellbeing of body, mind and spirit. The clinicians on the medical side can take care of the body, the child's physical needs. But the mind and spirits, those are fed by the arts.”

Wednesday, February 10, 2010

Vaccine study discredited, parent fears remain

Last week the prestigious medical journal The Lancet retracted a controversial 1998 study that linked the measles, mumps and rubella (MMR) vaccine to autism. The paper had fueled parent fears about the vaccine, leading to a sharp drop in vaccination rates. The Lancet retraction came after a British medical panel found lead author Dr. Andrew Wakefield "dishonest" and "irresponsible" in his biased selection of patients. In one of numerous ethical breaches, Dr. Wakefield paid children at his son’s birthday party to have blood drawn for the research. Yet parent activists like Jenny McCarthy heralded the news by insisting Dr. Wakefield is a hero. I interviewed Dr. Evdokia Anagnostou (above), a child neurologist who leads a clinical research program in autism at Bloorview, to understand why.

Me: Why was The Lancet retraction important?

Dr. Evdokia Anagnostou: For some time we've known this isn't a credible paper. Ten of the 13 authors had renounced the study's conclusions, no one could replicate the findings in outside labs and epidemiological studies from many countries have shown no association. But we don't retract papers because we get false positives. The retraction was based on ethical misconduct. We hope it will add to the growing body of evidence that there's no link between the MMR vaccine and autism. The concern for me is that we've been communicating that the data is inconsistent with the original study for years, and haven't been able to change the mindset of many in the autism community.

Me: Was the Wakefield paper the study that sparked the vaccine scare?

Dr. Evdokia Anagnostou: The media would like us to say this bad paper started the anti-vaccine culture. But the truth is that there's an anti-vaccine culture that is much bigger than autism. This paper found a home in that culture and had huge implications within the autism community, where parents were less likely to vaccinate their next child.

Me: Why do parents remain convinced that vaccines cause autism?

Dr. Evdokia Anagnostou: I think it's a devastating disorder, we agree on that. The truth is that research into the etiology of autism hasn’t been productive. We haven't found true etiological agents for autism. So we have models that say there's an increased genetic susceptibility that interacts with other genes or the environment to increase the expression of autism. But we haven't proven those models. For the parents of a child with a devastating illness, the hypothesis of a concrete, environmental agent – a vaccine – causing their child's condition is a very attractive proposition. People have strong emotional attachments to a hypothesis that there is one evil, outside cause that is identifiable and associated with ‘Big Pharma.’ And because the first symptoms of autism occur when most kids get their first MMR it’s easy to make the association.

Me: I think in our culture we struggle to accept that random things happen.

Dr. Evdokia Anagnostou: There is randomness to the combination, or degree of expression, of genes that can turn a functional personality trait into a condition of dysfunction like autism. In most cases, good traits that have served parents well are passed on in bad combinations. There is a reason autism is not disappearing. A detailed, systematic approach to life is a positive trait in today’s society – it makes for good scientists, bridge engineers and computer scientists. Autism is what happens when those good traits get expressed more than they should be, or in the wrong combination. For example, being very detailed-oriented and double checking your calculations to make sure that you are correct is a functional trait. But if over-expressed, this characteristic can look like compulsive behavior and all-encompassing interests to the exclusion of anything else in life. It’s not a case of passing on bad traits – which is a common misunderstanding of genetics – and is why many parents are averse to a genetic etiology to autism.

Me: Will we ever understand the cause of the genetic component of autism (why the genes get mixed in the wrong combinations) in a way that we could alter it? Is research focused on that now?

Dr. Evdokia Anagnostou: With very few exceptions, genes are inherited from mom and dad in a random fashion. Current genetics research is focused on what genes may produce susceptibility to autism and, in very rare circumstances, cause autism. At the same time, a whole new stream of research is looking at differences in the expression of genes in children with and without autism. This is of interest because it’s an area where environmental agents could interact with genes to change their expression. But so far we have not identified a single agent for autism. The question of whether vaccines could change something in your immune system that alters the expression of genes wasn’t a ridiculous hypothesis, but we haven’t found any link. The brain abnormalities we see in kids with autism – such as neurons not migrating to the right place in the brain – are ones that happen in utero, not post birth. The question is: Is it possible to have this brain abnormality and not express autism, but be at high risk of autism, and then get an environmental hit after birth that triggers it? That is a critical question we haven’t answered.

Me: Do you think The Lancet retraction will shift parent opinion?

Dr. Evdokia Anagnostou: For people like Jenny McCarthy, I doubt it. The theory has become so engrained. It’s a cause, and they feel they’re changing the next generation.

Monday, February 8, 2010

All are welcome here

Today we have a guest blog from Amy Julia Becker, mom to Penny (above) and William. Amy Julia is a writer and a student at Princeton Theological Seminary in New Jersey. At Thin Places she blogs about "theology, disability, children and parenting, education, and the intersection of grief and hope." Thank you Amy Julia!

All are welcome here
By Amy Julia Becker

“Architecture is evangelism.” I heard it said in the context of church buildings. The speaker was making the point that a ramp at the back of the sanctuary might comply with ADA standards, but it isn’t exactly welcoming to individuals in wheelchairs. I’ve been trying to think of an equally pithy way to state this truth for the rest of the world. “Architecture sends a message” doesn’t have quite the same ring to it, but the point stands. The way our buildings, homes, and public spaces are constructed says everything about which people we want to see in those places.

Last week, my mother and I took my kids to our first Boundless playground, a playground intentionally designed to include children with a variety of strengths and abilities. I noticed the swings first—a few that looked the same as every other playground, and two with full back support and harnesses, big enough to hold an elementary-school aged child. Our daughter Penny, age four, has Down syndrome, and I remember the days when she could only spend 60 seconds in a swing before needing to get down. That low muscle tone made it hard to hold her head up, so the enjoyment of swinging was limited by the design of the swing. At this playground, those bright yellow swings stood out as an invitation for any child to swing with abandon.

And then I noticed that the path up to the slide was quite wide. Wide enough, in fact, for a wheelchair. Along the way up, we discovered “stations”—Braille on one plastic board, a xylophone elsewhere, knobs and different textures lining the walls. Penny and William, our 18-month old son, didn’t seem to notice anything different. They just thought it was fun to slide and swing and seesaw, play peekaboo, run and climb and spin.

A few years ago, it took courage for me to take Penny to a playground. I wondered what questions I might get, particularly, “How old is she?” and then a surprised look when I said “Two,” and they watched her take those tentative early steps, watched her tiny body navigate whatever treacherous structure loomed ahead. I worried about older children knocking her down. I wasn’t even sure she would have fun, since she couldn’t run and jump and climb like other kids her age.

Now, Penny can run and jump and climb. There are still things she can’t do, but she’s old enough now that most playgrounds are pretty fun spots. And if I’m honest about it, even in this inclusive setting, a child in a wheelchair would run into some barriers fairly quickly. She could wheel herself to the xylophone, but she couldn’t get all the way to the highest slide without assistance. She couldn’t get up and ride on the bouncy horse or sit on the giant seesaw by herself. Even a “boundless” playground can’t remove all physical limitations.

So for a moment, the cynic in me kicked in. What’s the point of this place? Penny can have fun on most any playground these days. And it would still be tough for some kids to navigate this one. But the purpose of this space goes beyond physical barriers. It tackles social ones, which is more than half the battle. Because what this playground said to me was, You are welcome here. And so is your daughter, who has glasses and a physical therapist and an individualized education plan. Your daughter, who has by now introduced herself to everyone else on the playground with, “Hi, what’s your name? Want to play?”

Architecture sends a message. In this case, thankfully, the message was: Come on in. Play with us. Stay for a while.

Wednesday, February 3, 2010

The child who never grew

When my son was just a baby and I was madly surfing the net for anything about child development, I came across this book title: The Child Who Never Grew.

I didn’t know it then, but it was a seminal book about raising a child with mental retardation, published in 1950 by Nobel- and Pulitzer-prize winning author Pearl Buck at a time when intellectual disabilities were hidden. Buck writes about her daughter who never developed past the mental age of four.

Early on, the book title terrified me. I wasn’t sure if it referred to children who didn’t grow physically or developmentally. Growth is highly valued in our culture – whether in height or intellect – and I questioned whether happiness could coexist without it.

“Couldn’t we still be a happy family?” I asked my husband when Ben was three days old, and we were waiting to learn what syndrome he had.

Fifteen years later, I’d say “yes,” but I believe my understanding of happiness has changed, as well. I used to think happiness was the absence of pain; that you could somehow manoeuvre around pain, outsmart it, so that it never touched you.

Now I think of life as being like cookie dough with equal parts joy and sorrow, and the two inextricably linked. I’m not afraid of sadness the way I used to be, because I take it as an essential part of life. And I know that the ability to feel and appreciate goodness is heightened when we’ve experienced pain.

Buck, in The Child Who Never Grew, talks about “the inescapable sorrow” that attends parents of children with intellectual disabilities. When I saw the words “mental retardation” ascribed to my son in an evaluation at age 11, I railed all night, unable to sleep, and wept in my boss’s office the next morning.

But was it sorrow for my son – who had not changed one iota since the night before – or sorrow for the stigma of mental retardation that had befallen our family? Of all disabilities, intellectual disability is viewed as the most tragic and despised – even within the disability community.

“It was getting harder all the time for another reason,” Buck writes of her daughter. “The child was older and bigger and her broken speech and babyish ways were conspicuous.” While saying she herself felt no shame regarding her daughter’s lagging development, she soon observes two American women (she lived in China) who stare and refer to her daughter as “nuts.”

Dealing with people’s reactions to our children – and the inevitable comparisons that show up their differences – is wrenching.

At a Christmas get-together, I couldn’t help comparing my 15-year-old son, who doesn’t cope well in group situations because of his hearing loss and anxiety, with his four-year-old cousin. His cousin could play a card game that Ben couldn’t follow. My brother-in-law noted that it was time to teach his son how to tell time, and I couldn’t help thinking, will Ben ever learn? Then at one point Ben got anxious and began picking his nose. Those moments are always awkward. There’s a part of me that fears others are judging Ben, and a part of me thinking: “Obviously my parenting skills have been less than stellar!” Because I was brought up in a family that valued manners, I feel an extra twinge when my son can’t follow social mores.

Reminders that Ben won’t be doing what his peers do sting. Like when one of my daughters asks: “Will Ben learn how to drive next year?” In a way, I don’t want him to turn 16 because the older he gets, the more behind he appears. When I filled out his camp application, I didn’t want to write “16” where it said “age of camper next June.” I fear the time when he starts “aging-out” of programs.

But it is only in academic and social comparisons that my son comes up short. He amazes me, on a daily basis, with his spirit, his sense of humour, his sensitivity, his capacity for joy and his curiosity.

And he has a rare gift: he accepts himself and others exactly as they are.

“He can’t try to act like someone he isn’t,” says my husband D’Arcy. “When you meet Ben, there’s no guile, no disguise. He is as he is. That means I don’t have to put on a disguise either. I can be me."

There are no pretences with my son. In that way, he is more able, more evolved, than I am. How many of us can say we've walked through life without pretending to be someone we're not?

I don’t take anything about Ben for granted. When he signs “What do you want for Christmas?” my heart bursts – because I know how hard it is for him to communicate and to initiate a question like that. I've seen how effortless language is for my typical children. As Ian Brown says in his memoir The Boy in the Moon when describing his son's smile or their shared language of tongue clicks: “Everyday occurrences for a normal child. But I know their true value.”

While Buck says “Had I been given the choice, I would a thousand times over have chosen to have my child sound and whole,” I can not say that I feel the same way about my son. Ben wouldn’t be the person he is – with his own mix of strengths and vulnerabilities – without his intellectual disability. Part of his essence, his way of interacting in the world, would be altered. Something genuine and irreplaceable would be lost.