Monday, December 31, 2012

Mountain or city, home is where the heart is

I’m excited to share with you an interview with Michelle Miller of Cypress, Calif. Michelle, her husband Michael, and daughter Maya welcomed Michelle’s nephew Dmitri (above left) into their family in 2011 after the death of both of his parents. Michelle runs Fickle Knitter Design—writing books for people who knit—but had no experience with children with disabilities. Dmitri, now 10, has Down syndrome and autism. Michelle’s daughter Maya is 6. The family brought Dmitri from his home on a rural mountain in Virginia to a city in Orange County, Calif. in October 2011.

BLOOM: What events led to your adopting Dmitri?

Michelle Miller: My brother-in-law Ric—Dmitri’s father—was diagnosed with terminal prostate cancer in 2010. In January of 2011, my sister Miriam died from pneumonia. It was totally unexpected as she was only 45, healthy and young. She had been caring for both her husband while he was sick and Dmitri. I thought it was in everyone’s best interest for Dmitri to spend as much time as possible with his dad, before he died, and we did that with the help of family and some respite care. I went and lived there for three months to take care of them until Dmitri’s father passed away in September. We then had to wait another month for the court to grant me legal guardianship and at the end of October we brought Dmitri back to California with us.

BLOOM: Did you have any experience caring for children with disabilities?

Michelle Miller: No I didn’t. My sister and I talked two times a week for a couple of hours each time, so I knew about Dmitri’s life extensively, but that’s not the same as physically being there. I really hadn’t had any experience with disabled children at that point. I had friends who were disabled growing up in school, but I’d never been in the role of caretaker.

BLOOM: When did you make the decision to adopt Dmitri?

Michelle Miller: The night my sister passed away I knew I’m the youngest and best equipped in our family to be able to care for him. But for months I worried: Would I be able to do it all and would I do it well? It was scary.

BLOOM: What was Dmitri like when you stayed with him and his dad?

Michelle Miller: I look so much like my sister and when he came home and saw me he went upstairs and cried. It was hard for me to know it was hurting him to see me. He had a lot of behaviours at that time and he fought me at every turn. I’m sure some of those behaviours were anger and grief at not having his mom around. He was doing dangerous things and didn’t have any concept of danger. When I first got to Virginia it was a battle everyday just to get him dressed and I thought: How will I do this everyday for the rest of my life? It was hard. One of his respite-care workers said he viewed me as a maternal figure, and that was why he was testing me. That helped me get through it a lot.

BLOOM: How does Dmitri communicate?

Michelle Miller: He can nod his head yes and no, and if he doesn’t want to do something he’ll sit down. And that includes if he doesn’t want to cross the street: he’ll sit down in the middle of oncoming traffic! Because he’d been through so much, if he didn’t want to do something, I didn’t want to make him do it. I struggled with that. That’s one thing I was able to talk to his dad about and work out. His dad told me that he and his mother decided early on that Dmitri was going to have to do things he doesn’t want to do because that’s part of being alive.

BLOOM: How did you manage to stay positive while caring for your brother-in-law who was dying and your nephew who was grieving?

Michelle Miller: I just tried to stay in the moment as much as possible. I definitely didn’t complain. I wanted Ric to have faith that my husband and I would do a good job. My daughter wasn’t in school yet so she came and stayed with us for a couple of weeks at a time.

BLOOM: What was the most challenging part about bringing Dmitri into your family?

Michelle Miller: Learning how to get him to do the things he needs to do everyday. But I’ve figured out how to motivate him. Chicken nuggets and ice cream are good motivators. He’s a good boy and although he still sometimes doesn’t want to do things, he’s a different kid now.

BLOOM: How did he adjust to coming to live with you?

Michelle Miller: He still had some behavioural issues but he seemed to feel at home right away. We changed the guest room into his room and bought him some special furniture and brought comfort items of his from Virginia. It seemed like he knew this was where he was going to be. But it took a lot longer for him to feel really comfortable.

BLOOM: How did your daughter adapt?

Michelle Miller: She’s amazing. When Dmitri’s dad was still alive, she asked me if Dmitri was going to be her brother. She was only five at the time and I didn’t know how she was able to perceive that. She’s great when we go out in public. She’ll tell people “This is my brother. He doesn’t talk and he has autism.” Dmitri’s dad said Maya was the first kid he ever played with. He would let her come into his room and play with his toys. They would hang out together—more side by side than play. Dmitri lived on a mountain in a very isolated area, so he hadn’t had play dates and regular contact with kids. Maya’s been a tremendous influence on his life and I think a lot of his gains have been through being around her. Now he has regular contact with other children.

BLOOM: How have you changed since Dmitri became your son?

Michelle Miller: You’re trying to get me to cry, aren’t you? I’ve changed a lot. The strides Dmitri makes may be little in other people’s eyes, but I know how hard he’s working and how much he’s accomplished. I embrace and value the small things a lot more. I feel so grateful for everything that I have.

BLOOM: How do you keep the memory of his first parents alive?

Michelle Miller: He hears us talking about them a lot. My sister was a photographer and we have her photos hanging in the house. We have pictures of him and his parents together. My sister was such a big part of my life that it’s something we talk about often.

BLOOM: How did you learn to get the services Dmitri needed and advocate for him?

Michelle Miller: I have a background in physics and that gave me a really good ability to do research. In the months while Dmitri’s dad was still alive, I found out about the agency that provides services to people in our county and I started e-mail contact with them. I talked to as many other parents of children with disabilities as I could, and I read books. There are a lot of wonderful services for disabled folks here, including the special school for children with disabilities that Dmitri attends. Many of the services are offered through our Regional Center system and often are subsidized through special programs. Right now we do respite care and will soon start ABA therapy through Orange County.

BLOOM: Would you say this opened up a new world to you?

Michelle Miller: Yes. We now have a family that we do play dates with that has a son with autism. And we’ve met other families of children with disabilities.

BLOOM: It sounds like having your own business allows you to balance the needs of your kids and your work.

Michelle Miller: It’s wonderful. I’m able to put Dmitri on the bus and able to help my daughter get ready for school, and when Dmitri gets off the bus I’m there. If I need to pick either of them up from school— or take Dmitri to doctor appointments, and he has a lot of them—it’s not an issue. I can adjust my schedule. If the kids need something, I can put my work down.

BLOOM: What kind of things does Dmitri enjoy now?

Michelle Miller: He likes electronics and musical toys. A favourite thing of his is a bouncy ball that he’s good at bouncing. He has an MP3 player with children’s music that he likes. And recently he began interacting with an iPad, which really shocked me. He likes Netflix and there’s a group of apps I got for him called Starfall, for reading. I can hear him in his room right now playing the one where he has to do a sequence of events to make the turkey dance.

BLOOM: How did your husband manage with the adoption?

Michelle Miller: He was amazing. He never put up any roadblocks. He came out to visit us and worked remotely. He co-parents with me. He parents Dmitri just like I do.

BLOOM: What practical advice would you offer a family adopting a child with disabilities?

Michelle Miller: I would say reach out and find out what sort of services are available in your local community and network with other parents. Many times you won’t know exactly what services you can get until you speak with other parents. I talked a lot with Dmitri’s respite-care workers in Virginia and every time I go into his school, his teacher and I compare notes and I observe how they interact with him. In some ways you can’t prepare yourself for adopting a child who can’t talk. They’re sort of trapped in themselves.

BLOOM: How is Dmitri doing these days?

Michelle Miller: In the past three to four months he’s become a pretty happy kid. He smiles a lot. He’s really settled and comfortable. If he wants something like the ketchup he’ll go and get it himself, which is pretty huge for him. That shows me that he feels really comfortable and confident.

BLOOM: How do you feel about adopting Dmitri now?

Michelle Miller: I don’t think about it too much. I know it was the right choice and I’m so happy we did it. Even though it’s been really difficult I would do it again in a heart beat.

Read more about the process of adopting Dmitri on Michelle's blog.

Friday, December 28, 2012

A physics teacher's lessons on love

Monday, December 24, 2012

The 'perfect' holiday: make it a family tradition

By Lori Beesley
Holland Bloorview family leader

At this time of the year, other children are putting pencils and crayons to paper, writing their letters to Santa. Our son is getting excited about Christmas too, but he has his own reasons. For Mitchell, it’s all about the anticipation of the day rather than the reality.

Mitchell has a genetic condition called Fragile X syndrome as well as autism. Because he has Fragile X, he is developmentally delayed and is unable to write a letter to Santa, or anyone else. So why is he excited about Christmas?

The idea of having everyone in the family over for the day makes him happy. As soon as the lights and decorations start to appear, Mitchell knows Christmas is coming. He’ll pretend to call family members on the phone, inviting them to come over for Christmas and spend the day together.

The other night I told him that my brother was sleeping over on Christmas Eve. He was very excited. He immediately picked up the phone and had a good five-minute 'pretend' conversation with his Uncle Terry, telling him to make sure he brings his toothbrush and pajamas when he packs for Christmas Eve. There was no mention of gifts or presents, since those are secondary for Mitchell. The joy of spending time with the people closest to him is what makes Mitchell’s day special.

That said, Christmas time can pose its own unique challenges for us as a family. Mitchell can become overwhelmed if visitors to our home aren’t those he was hoping for, or if there are too many.

We recently hosted five couples for dinner and minutes before they arrived, Mitchell got very upset, leaned his back against our locked front door and kept repeating: “No one in my house.” He recently turned 18 and is taller and stronger than me, so simply picking him up and removing him is no longer an option. Lots of distractions and a promise of a special treat of watching TV in Mom and Dad’s room helped resolve the situation.

Going to other peoples’ homes usually proves more successful, but we need to do lots of prep work to make this pleasurable for everyone. We prepare Mitchell by telling him what to expect and who will be there. We bring along his Nintendo DS and our iPad and make sure both are fully charged. Within minutes of arriving, Mitchell has usually scouted out a quiet room or corner and stays put for the remainder of the visit. At some point, his internal “It’s time to go home NOW” switch is thrown and we need to be ready to move pronto. On a positive note, his ability to tolerate longer evenings out has increased over the years so there is hope!

Another issue we face is managing our family’s expectations of the holidays. It’s our job as parents to try to make sure our children enjoy this special time of year. But to do that, we need to know what a great time looks like for our particular child, given their unique abilities and sensitivities, and balance that with our family’s expectations.

Years ago, we used to celebrate Christmas at my brother-in-law’s home. It was a loud, boisterous home with everyone talking over each other. It was the exact opposite of the environment Mitchell was most happy and comfortable in. When it came time to open gifts, my sister-in-law wanted everyone to be in the same room, taking turns, eating and laughing together.

But I knew better.

I quietly led Mitchell into another room, popped in a new movie he had received that morning at home (a yearly tradition) and set him up with a snack and drink. He was in his element and had a grin from ear to ear. My sister-in-law however, was not happy.

She was upset that her idea of the perfect family opening gifts together wasn't happening.

“But we should all be together," she said. “That’s the way it’s supposed to be.” She felt badly that Michell was all alone. Mitchell must be with us, she insisted. I had to tell her, in no uncertain terms, that Mitchell was not joining us. It was frustrating to have to explain to her why Mitchell was happier alone in a quiet room, watching his movie, and to convince her that this really was best for Mitchell and for everyone. However, as educating extended family is an annual occurrence, it does get easier as the years go by.

While your family may or may not get why you set things up at celebrations the way you do, you know what’s best to ensure your kids are happy and safe. And along the way, maybe we can all start a new tradition or two!

I'm at Love That Max today

Pop over and see my interview at Ellen's site.

Thanks Ellen! Louise

Friday, December 21, 2012

Five things parents should know about autism

Scott Lentine, 25 (above), is a college graduate interning at the Arc of Massachusetts. He loves dogs. In his work, Scott advocates for disability legislation to improve the lives of people with developmental disabilities. Scott has Asperger’s and writes about his experiences in poems. I asked him what five things he would share with parents raising younger kids with autism. Thanks Scott! Louise

Five things parents should know about autism
By Scott Lentine

1. Autism is not correlated with violence. I say this in the wake of the Newtown, Conn. tragedy.

2. People on the autism spectrum can have a wide range of emotions and attributes.

3. Not all people with autism are lonely.

4. People with autism can have diverse interests in subjects and hobbies.

5. Parents should try their best to find the appropriate doctor and psychologist to make their lives happier. Treat your child with warmth and kindness. Using fidget toys and sensory-integration tools can help soothe tensions in the child with autism. In addition, parents could help find friends for their child: kids who might have similar interests and who are sympathetic to the child with autism. The friend can be on the spectrum or neurotypical. I do wish I could have had more friends when I was younger.

I also asked Scott what he had learned during his internship at The Arc.

“I learned that people with developmental disabilities often do not get proper public services or health care after turning 22 and formally leaving the public educational system. There needs to be universal health care (physical and mental) for people on the spectrum and they should not be denied insurance coverage.

“I tend to view the autism community as a new civil rights movement similar to that of African Americans and LGBT citizens. There definitely need to be more songs about autism. Perhaps, people like Neil Young, Joan Baez, Judy Collins, Bruce Springsteen, Bob Dylan, Peter Yarrow, Pete Seeger and Tom Waits could do songs about this subject. It would also be great if Hollywood did a movie on the life of autism activist and physician Dr. Margaret Bauman. I saw her when I was a child in the 90s in Lexington, Mass.

Below is one of Scott’s poems:

Just a Normal Day

Never knowing what to say

Never knowing what to do

Always looking for clues

Just a normal day

Feeling unsure

Totally perplexed with everyday life

Always on edge never certain

I wish I could lift this curtain

Needing to constantly satisfy my need for information

Always online searching for new revelations

Going from site to site

Obtaining new insights every night

Trying to connect with people my age

Attempting to reveal my unique vision

But ending up alone and unengaged

Feeling like my life needs a total revision

Just a normal day

How have you changed?

Holland Bloorview family leader Cheryl Peters asks: "Have you changed as a person since having a special-needs child?" Hop on over to Parent Voices on Facebook and join the discussion. How have you changed?

Wednesday, December 19, 2012


Reading Jack Tourin's story yesterday made me recognize how perspective is everything: it can flood our life with beauty and wonderor just as quickly drain it of these qualities.

In the spirit of savouring time with Ben, last night we played a game of Scrabble. We haven't done this in months, and Ben wasn't initially psyched about the idea.

However, we soon had the board out and Ben had made his first word: "DO." This was followed by "CATS" and some other rudimentary words. My chest hurt in that good way, when you feel filled up snug with gratitude: A few years ago he couldn't have focused for more than five minutes, and last night we played for an hour.

Ben was able to enjoy the back and forth and choosing of his new letters. At one point he came up with the word "COAX" but we couldn't find a spot for it on the board.

He was thrilled to get a "J" and began rooting around in the letter bag to pull out the letters to spell his beloved "JESSIE" from Toy Story.

We had just finished when Charlie Brown's A Christmas Song came floating up the stairs, reminding me of how as a child I'd run downstairs with my brothers to watch the annual Christmas specials on TV.

We decided to forgo homework and Ben and Ken went downstairs with D'Arcy to watch Peanuts. Ben isn't familiar with the characters, but I knew he would love them. And he didespecially the nameless Little Girl with Red Hair that Charlie has a crush on: Ben obviously thought she was a dead ringer for Jessie.

"He kept saying the girl was Jessie," D'Arcy said afterwards, with a touch of annoyance.

But even Ben's obsession with a Toy Story character who, like him, just wants to be loved, couldn't shake my feeling of contentment. Ben still has the excitement of a child for Christmas. He regularly takes me to the calendar to show me the date and signs "What do you want for Christmas?"

Last night I felt the joy of the season and held on tight like it was a wild toboggan ride.

Tuesday, December 18, 2012

Greggy's legacy is a life savoured

Last week I read a story by Jack Tourin (in the two outside photos) in The Healing Muse, a literary journal on medicine, illness, disability and healing. Jack wrote about losing his son Greggy (in all photos) when he died at age 17. When I asked about reprinting the story, I learned that Jacka former Indiana high school English, Spanish and French teacheris now 90. Jack's daughter Kathy told me he was excited to hear we were sharing his story. Jack's message about how Greggy delighted in his worldwhich to an outsider had been made smaller by disabilitiesis powerful. 

Greggy's legacy is a life savoured
By Jack Tourin

On Sept. 17, 1980, my son, Gregory Mark Tourin, died. He was 17.

The usual outpourings of sympathy after such an event were somewhat muted. A few close friends commiserated deeply and sincerely, but others were more restrained. Some stated openly what they thought, while others implied it: "How can any parent mourn the death of a severely handicapped child, a child with nothing to look forward to? They should be glad it's all over."

Well-meaning people would say to my wife and me, "It’s a blessing, really." Or "Your 17 years of sacrifice are over. Now, you can live for yourselves." They failed to see the other side of this coin of sacrifice.

What mattered to us wasn't what we did for him, but what he did for us.

Greggy was born severely mentally disabled. He also had cerebral palsy. He spent most of his life in a wheelchair. During the last five years of his life, he was almost completely immobile. The only parts of his body he could move were his toes and wrists. All the natural functions of life that others accomplished automatically had to be done for him. Yet watching this child struggle to gain satisfaction, saluting each day with wide-eyed wonder at what was to come, drinking in and enjoying the tiny portion of life that was allotted to him, gave us a reward that can't be measured in normal human terms.

Taking care of Greggy was a 24-hour-a-day job. He was a very demanding child because the only means he had of controlling his life was his voice, which he used constantly. He learned to baby talk when he was five and talked this way for the rest of his life. During all that time, we never heard from that baby talk one word of self pity or bewailing his fate.

What we did hear were demands to see, do, and go.

Greggy wanted to see everything, go everyplace, and learn everything he could. His world was restricted to a far smaller portion than that given to most people, but that tiny share of life was a constantly unfolding vista of wonderment for him.

He could read signs and large advertisements long before any teacher attempted to teach him. We discovered this when we were going through the yellow pages of the telephone book with him. There he was, calling out the names of the companies that had the larger ads. The finer subtleties of reading always eluded him, but he was able to determine that the larger sign with the big red logo meant K-Mart and the one with the circles meant something else.

When life wasn't interesting to Greggy, it was funny.

When I became cross with him, he would say, "Daddy get mad," his eyes sparkling with anticipation, so I would wave my arms, pretending to be wildly furious. This brought a deep, heartfelt, natural, all-encompassing burst of laughter from him. No one but a mother or father can understand how it feels to hear that delirious sound of pure innocent joy. My wife Beatrice and I would hear the same happy sound when we acceded to his request of "Mommy and Daddy dance!"

Once, when we were driving and he was in the front seat next to me, I said, "Greggy, if you say one more word or make one more sound, I'm going to throw you right out that window. Understand? One sound and out you go!"

He looked at me with an impish grin for a moment and then blurted out: "Baaaaaaah!"

My wife and I sang to Greggy constantly. He memorized many of the simpler songs. During his last two years, he sang himself to sleep every night. He woke each morning laughing and demanding to savour more of life.

His favourite place to go was our local shopping mall, where he liked to look in the store windows and ask us to buy him things. He knew we couldn't buy him everything he asked for, but he seemed to enjoy just saying the words. In his own way, he was improving his vocabulary and his reading.

On the morning of his death, at one o'clock, on his way to the hospital emergency room, Greggy asked to be taken to the mall. We had no idea that he had only a few hours to live. We were on our way to get the cough and congestion in his chest relieved so he'd be able to sleep. He had had worse chest colds than this and had always recovered quickly.

Whether Greggy realized that he was dying we'll never know because he was cheerful and funny right to the sudden end. However, I've always suspected that he knew a lot more than we ever dreamed was possible. If he did know that he was going to die, then he had decided to finish his life as he had pursued it, developing what he had to the fullest and learning what it was possible to learn right up to his last breath.

After the funeral and the departure of our friends, Beatrice and I returned to our strangely silent house.

Our friends were wrong. It wasn't over.

It will never be over until my wife and I are gone and the last echoes of his singing, his laughter, and his constantly curious voice are buried with us.

For six days, I sat in the living room and cried. At the height of my agony, I made some wildly emotional decisions. I was going to quit my teaching job. I was going to retire from life. I would never smile or laugh again.

As I sat there struggling with my grief, many unusual questions came to me. One of them was: What would Greggy have done in a situation like this, if one or both of us had died before him? I knew he would have missed us deeply, but he wouldn't have buried himself in a morass of self-pity. He would have continued to use whatever limited ability he possessed to develop, to learn, and to drink his tiny cup of life to the fullest.

To honour Greggy's memory, I decided to do what he would have done: study, learn, teach, and use my life in the best way possible.

After my son was gone, I was never able to recapture his closeness by sitting in my chair and weeping. However, over the years, when I looked into the eyes of some of my students and saw a look of magical curiosity or a sparkling sense of humour, a strange thrill went through me. I knew that for that one heavenly suspended second I had looked again into the eyes of Greggy.

Friday, December 14, 2012

One question Friday

We asked Barbara Fishbein-Germon, social worker in Holland Bloorview's child development program, to answer this question about siblings.

Q. I'm wondering how to best support my daughters (who have very different abilities) in having a meaningful and equal sibling relationship?

A. Barbara Fishbein-Germon: This is a wonderful question.

There are many ways that this parent can support his or her children to have meaningful relationships. I think the first thing to do is to try to think of activities they can all do together. This can take creativity on the part of parents and children and may vary depending on the needs of the child with different abilities. Many activities can be adapted and many programs are designed to include the entire family.

If your child uses a wheelchair, how about a visit to the accessible Windreach Farm? Your kids can pet the farm animals, take a trail walk, go for a wagon ride, and at this time of the year -- Meet Santa! Swimming is a fun activity to do as a family. Holland Bloorview offers two nights and one weekend swim for families in our heated pool. Both of your children can attend an integrated camp -- like our Spiral Garden program, which is run by artists. Many of our Centre for the Arts programs are open to children with and without disabilities. The Geneva Centre has a movie night that is free for everyone and accommodates children with autism. Contact the Geneva Centre to find out about movies in the New Year.

When one child has a disability, I think it's important that parents foster a culture of accepting difference. Starting early, you can find lots of books that celebrate all kinds of differences related to cultures, families and abilities.

I encourage parents to be open with siblings about their child's condition, strengths and challenges. It can be helpful to bring siblings to a few medical and therapy appointments because brothers and sisters can feel left out when not included. Also, without information, siblings may develop fears about the unknown.

Don't forget when coming to Holland Bloorview that our Ronald McDonald Playroom is open to children with and without disabilities aged 2 1/2 and up. This can be useful if you need to speak with a doctor or therapist on your own, want to look something up in our Family Resource Centre, or just want a coffee break!

Try to balance the time and attention you give each of your children. Kids need individual attention with their parents, so plan special outings with each child.

By developing a circle of support around your child with disability, you will have people who can support you in meeting both of your children's needs. For example, a member of your support network may offer to take care of your child with disability so you can have a special afternoon with your other child. The support network is also there to help your child with disability develop friendships and interests because each child needs friends and activities separate from their sibling. You can learn more about support networks by calling Holland Bloorview's warmline: 1-877-463-0365. Don't forget to ask about sibling panels offered through Holland Bloorview's family education workshops.

When someone offers to help -- whether through babysitting or cooking -- accept the offer!

Your daughter without disability may benefit from talking to other children who have siblings with disabilities. The Young Carers Program offers weekly, drop in and special events for children involved in caring for a brother or sister. Many of the programs are fun and include acting, cooking, photography and art.

The Sibling Support Project also offers many valuable resources, including the opportunity to connect online or at events with other siblings.

This earlier BLOOM article looked at some of the common issues facing siblings: 'What about me? Aren't I special?'

Thanks for your question!

Wednesday, December 12, 2012

From Switzerland -- with love

I had some special visitors yesterday! Tekeal Riley (left), a BLOOM reader in Bern, Switzerland, was visiting her family in Toronto and stopped by Holland Bloorview. You'll remember this beautiful piece Tekeal wrote for us: Growing up.

Tekeal visited with her mother, her grandmother (second from right), who just turned 100, and Livia, her six-year-old daughter. Livia has Down syndrome and by extraordinary coincidence Tekeal had met my cousin Jennifer -- who also lives in Bern -- at a support group for parents of children with special needs a couple of years ago.

Livia loves to dance and she soon had us in a circle, following the movements to one of her school dances -- which she pulled up in a video on Tekeal's phone. The highlight was when Livia asked me to do a dance just with her, and led me through the steps, including some "swing your partner" moves.

She speaks in High German (is that right Tekeal?) and I was thrilled when Tekeal interpreted and told me Livia had asked if I could be her babysitter (high praise!).

As we chatted, Tekeal's mom mentioned that she and Tekeal's grandmother had attended a performance of RARE in the summer -- the Toronto Fringe Festival play in which nine adult actors with Down syndrome tell their stories. RARE is produced by Madeleine Greey, a dear friend of mine, whose daughter Krystal is one of the actors. Krystal was a BLOOM role model several years ago. Tekeal's mother Bernie raved about RARE and we soon realized that the "beautiful woman with blonde hair" she'd spoken with afterwards was Madeleine.

I reminded Bernie that RARE is doing a BLOOM speaker night for us Jan. 9.

I e-mailed Madeleine last night to tell her about the connection.

"You've made my day!" she wrote.

Sometimes the world of special needs is very small and very cozy.

And the award goes to... Ben McGovern!

A monster cold descended on our house two weeks ago. First it claimed Kenold, then D'Arcy, then me, and finally Ben.

This was no run-of-the-mill cold you could just push through for a couple of days.

It was an "I can't get out of bed" marathon that lasted way past the seven days you'd expect a cold to run its course.

In fact, over a week in and feeling just as bad, I asked D'Arcy: "Did I catch a second cold? Is this a NEW cold?"

D'Arcy couldn't answer because he couldn't speak: he'd lost his voice.

Ben has been off school for a week.

Although feeling crappy, he's happy to stay in his PJs and immerse himself in TV and computer games all day.

I didn't want to send him back too early, but I also knew that Ben would play his sickness card for as long as possible.

Last night when I told him he was going back to school today, he signed that he felt "green" and launched into a dramatic series of over-the-top, forced coughing episodes.

"Yes, you have a bit of a cough, but you're better and everyone has to go back to school and work," I said.

Ben couldn't sleep last night. He worked himself into a frenzy that he was too sick to go back to school -- and kept coming into our room to act out his symptoms with great relish and sign that he had to "stay home."

Despite some repeat performances this morning, we managed to get Ben out the door for the bus. But I knew his attendance was tenuous.

The call came just before lunch.

Ben couldn't stop coughing -- on everyone -- and had to go home.

I picked Ben up at lunch. His assistant told me he was really sick and asked if he'd seen a doctor. "You can really hear it in his cough," he said.

Not surprisingly, I didn't hear anything.

Ben, mission accomplished, was no longer "in character."

There was no coughing as Ben got into the van. No coughing all the way home. No coughing up the 29 stairs to the house. No coughing at the dining room table eating lunch. No coughing watching a video on his iPad. Clear breathing, no sniffles.

Luckily, Lucy happened to be home for the day.

"I'm going back to work," I said to Ben. He nodded in agreement, eyes stuck to the screen.

No coughing as I walked out the door to return to work.

His assistant messaged me to let me know that he could do the homework in his bag while he got better over the next couple of days.

"Clever Ben," D'Arcy wrote in an e-mail. "He puts on a show and gets a free pass -- no school!"

Yup, Ben definitely deserves an Oscar for his winning performance!

Monday, December 10, 2012

Social-skills programs for teens -- tips?

One of our life skills coaches is interested in links you may have to social-skills programs that we might be able to adapt for youth aged 15 to 21 with a variety of physical and developmental disabilities.

Has your teen participated in a social-skills program that worked well?

Please post any recommendations or links in the comments. Thanks! Louise

Kids in BLOOM

I'm looking for photos for the kids in BLOOM section of the Winter issue of the magazine.

Please e-mail a photo of just your child to

We don't print names. Thanks! Louise

Friday, December 7, 2012

One question Friday

In comments related to strategies for encouraging speech in your child, one of our readers posted this question:

Q. "Any tips or hope for those of us who have been doing all of the above for years with little result would be great."

A. As a parent who was unable to accept the fact that years and years of speech therapy were not giving my son a voice (he wasn't making any real progress), I think it's so important to have an open discussion with your speech therapist and developmental pediatrician about what is realistic for your child.

If I could do it again, my goal would be that my child spend the majority of his time in activities that bring him joy and where he can be successful.

My son couldn't be successful in speech.

But he was able to communicate more using sign language, pictures, voice technology and a computer. I think you need to assess, with the help of a professional, which mode of communication is most possible for your child, and make that the focus. As parents, we get too hung up on speech. If your child isn't making meaningful progress in that area, take another route!

Perhaps other readers can offer their suggestions? Thanks, Louise

Let's rethink 'normal' in children's rehab

By Barbara Gibson

Rehab professionals want to help improve the lives of children with disabilities. But they sometimes struggle with two conflicting visions of how to do that.

Is their role to "normalize" bodies that are impaired, or to promote acceptance of diverse bodies and abilities?

As a physiotherapist and child disability researcher, I know that “normal” is often taken for granted as a benchmark to assess quality of life. To rate life quality, we often measure the amount of help a person requires to carry out daily activities. Our questionnaires assume that the more you do on your own, the better life will be. So walking independently gets a higher score than walking with a cane. And walking with a cane rates higher than using a wheelchair.

By assessing physical abilities alone – and ignoring social influences on wellbeing like relationships, security and expectations – these measures reproduce cultural biases about what constitutes a good life and inadvertently reinforce exclusion. On these measures children with disabilities are marked as “other” and in need of intervention.

Of course cultural values about disability don’t originate in rehab. They reflect societal values.

Developmental psychology is largely responsible for the concept of the “normal child.” Bodies which can’t be fixed through surgery, therapy or medications fall outside the limits of normal development and bear the stigma of pathology.

New parents are a good barometer of mainstream ideas about disability. Many parents of infants with disabilities come to rehab with high hopes that surgery, drugs and intense physio will cure their child – or dramatically reduce differences – and the willingness to “do whatever it takes.”

Because of the value placed on normality, parents – particularly mothers – find themselves caught between pushing for intervention and defending their child’s worth. They are put in the paradoxical position of saying to their child “I love you as you are” and “I would do anything to change you.”

When parents have unrealistic expectations, rehab therapists struggle with how to support these families while not destroying their hope.

Walking is an example of a rehab goal that is a taken-for-granted good in children’s rehab. Intense walking training is built into the system in a way that largely precludes parent decision-making about whether or not to have treatment. In Canada, preschool children routinely receive intensive publicly funded standing and walking therapy two to three times per week. Use of walkers and powered wheelchairs may be discouraged until other options have been exhausted. Many parents seek out additional private therapies – often at great monetary and time costs.

The focus on walking (from formal therapy to home and community programs to conductive education camp) can fill up days – leaving children little time to just be kids.

Because their bodies have been identified as in need of fixing, children themselves come to understand that they fall outside an accepted norm. In our culture, in addition to conveying mobility, walking and “standing on your own two feet” symbolize a whole set of moral virtues – including dignity and autonomy. The drive to walk can create an overfocus on bodies and therapy.

And even with intense therapy, some children won’t ever become walkers or will use wheelchairs to get around some or all of the time. (As they age, we are better able to predict the walking abilities of children.)

Studies with self-reports from children show they are keenly aware of how others stigmatize them. Interestingly the same studies find children don’t necessarily internalize this stigma or identify themselves as disabled. This may suggest that children are less concerned with walking and more concerned with being able to get around.

A study of adult wheelchair-users revealed a distinction between the way they viewed their wheelchair positively as children, and the negative views their parents held of the wheelchair. Many stopped associating “not walking” with a medical condition. Wheeling became a normal mode of movement. This shift in attitude helped wheelchair users gain a positive identity and achieve life goals in spite of the stigma attached to wheelchair use.

In my own research with children with cerebral palsy, children were conflicted and ambivalent about the value of walking. When choosing whether to walk, crawl or wheel, they considered the amount of energy needed, the activity, the environment and their preferences. They resisted negative views of disability by expressing pride in the speed, colour or features of their devices and in identifying themselves as wheelchair users.

However, children over the age of 11 expressed that it was important to be identified among peers as “someone who can walk.” These findings help demonstrate how children are socialized to divide the world into walkers and non-walkers. They learn a dominant message, reinforced by years of rehabilitation, that non-walking and non-walkers are problems to be fixed.

Promoting acceptance of diversity and difference are given short shrift in rehab compared to the amount of time, energy and money spent on achieving, or moving closer to “normal:” normal bodies, normal behaviours, normal movement, normal activities.

There is positive change in the way the rehab world views intervention. The introduction of the World Health Organization’s International Classification of Functioning, Disability and Health puts the rehab focus on social participation rather than fixing bodies, and acknowledges that function results from many influences.

But the politics of disability are still largely absent in rehab talk.

This is where cross-pollination between rehab professionals and disability studies researchers is invaluable. Rehab researchers who are immersed in disability studies (like me!) are in a unique position to challenge rehab assumptions from within. We need to encourage our colleagues to think differently. And rehab professionals have a wealth of knowledge and experience to help children reach their full potential – knowledge that isn't always recognized or appreciated in the disability studies community.

Barbara Gibson is an associate professor in the Department of Physical Therapy at the University of Toronto, and a senior scientist in the Bloorview Research Institute.

You can't not be moved by this

Thanks for the link Cheryl!

Thursday, December 6, 2012

Rx: Take 'The Spoons' and stir

Last weekend my younger brother Andrew (left) was in town. He bought my older brother Ian (centre) and me tickets to see one of his favourite bands from university days -- The Spoons.

My kids couldn't believe it when I announced that I was going to see a live band. I never do anything cool and I never stay out late.

Off we went to The Revival Bar in a trendy part of Toronto's little Italy: I'm 48, my younger brother is 45 and Ian is 51. We could hardly be called hipsters. It was Friday night and I was in my usual end-of-week stress state (when worries about my son with disabilities tend to blossom).

The Revival was a massive hall where the sold-out crowd stood shoulder to shoulder. We got there early and snagged the only table in the room (see above).

I couldn't remember the Spoons, who were big in Canada in the 80s, and one of my daughters says I can't dance. So I had doubts about how things were going to go.

Two hours later the place was packed. I was pressed up against our lone table, bopping up and down on the spot, so as not to knock the women behind us: they'd clambered up on the built-in bench we were sitting on to dance. The room was electric with diehard Spoons fans -- about the same age as us or older.

The band was brilliant. The lead singer rocked. I remembered many songs. I felt young again, like I was back at university, watching a band at the pub. I sipped my brother's rum and coke -- "I haven't had one of those for years," I said. The thoughts and worries that had ruled my mind dissipated. I clapped, I screamed, I hollered till my throat hurt. My older brother removed his hearing aid and put in an ear plug, while my younger brother placed his hands over his ears.

I was part of the deafening noise that brought the band back for an encore.

My brothers dropped me off at home, buoyant.

My first thought wasn't -- "I'm so exhausted, I must get some sleep" -- but "Let's look up The Spoons online" and "Wait till my kids hear that I made it past midnight!" I grabbed a big chocolate bar from one of my daughter's fundraising boxes and settled in at the computer.

I was surprised at how relaxed I felt, how refreshed. I remembered Donna Thomson, author of The Four Walls of My Freedom, talking about the value of dance for relieving stress. She told me she takes a Zumba class most days for that reason.

I've never had a good answer when other parents of kids with disabilities ask me what I do for stress. Now I have one.

I made a mental note: I must do this again. Soon.

Wednesday, December 5, 2012

Family devotion

A Chinese grandmother carries her granddaughter, who can't walk, on her back -- two hours to school, and two hours back -- everyday. Humbling!

Tuesday, December 4, 2012

Our diamond in the sky

By Louise Kinross

Tender and fierce.

That's how Sandi Cox (right), former chief nurse executive at Holland Bloorview, was remembered today at a celebration of her life.

I imagine most staff and families here have their own very personal stories of the ways in which Sandi embodied strength and vulnerability.

I remember seeing Sandi in the old cafeteria at the MacMillan site when I first lost my hair to alopecia 10 years ago. She had lived and thrived with scars from a gas explosion she was burned in years earlier and I wanted to know how I could get to a point of not hating my head -- which made me feel exposed and vulnerable.  

I was fine with other people's differences. Just not my own!

I sat down beside Sandi and I sobbed.

I don't remember what we talked about, or what advice she gave me, but Sandi was my role model: if Sandi could look and feel beautiful with scars, I could do the same without hair.

Sandi had amazing energy. One day we were working on a mini-documentary called A Day in the Life of Bloorview. It focused on our youngest inpatients with the most complex challenges. Sandi came to life when asked to explain the holistic nature of our hospital program. She conveyed the wonder and value of each child's life and how staff and volunteers worked with families to make their days rich. Sandi exuded Holland Bloorview's vision of possibility. You couldn't be around Sandi and not feel like you were floating on ideas and opportunities.

It was months after I developed alopecia that Sandi came to tell me she was diagnosed with breast cancer. I remember the big hug we gave each other. Somehow Sandi managed to continue working while going through her treatment. I'll never forget the day she popped by to show me the meticulous handiwork of the surgeon who had sewn up her incision so precisely. She was so proud.

Sandi was unstoppable. No matter what life threw at her, she always found a way around. That's where the fierce, determined and creative part of her personality came in.

I knew that Sandi's cancer had come back, but a part of me expected that she was invincible.

At the service, the minister spoke of Sandi's inner light, which never dimmed.

I shook the hand of one of her sons. "Your mom was my role model," I said.

He smiled. "She was quite a woman," he said.

I drove back to the hospital. It was raining. Rihanna's Diamonds in the Sky came on. Yes, I thought: "Shine bright like a diamond." I cranked it up and thought of Sandi. 

Women changing the world

Monday, December 3, 2012

Making the sea accessible

A Greek man who became disabled as a result of an accident inspired Seatrac -- a device that allows him to get into the water on his own.

A great way to mark International Day of Persons with Disabilities today, which is about removing barriers. The World Health Organization reports that 15 per cent of the world's population -- or one billion people -- live with disabilities.

Friday, November 30, 2012

One question Friday

Thanks Anchel -- for submitting this question: "What are some easy things we can do at home to encourage speech?"

I'm working on a tips sheet with our speech folks and will post in the next two weeks. I'll make sure I message you when it's up. Thanks! Louise

Thursday, November 29, 2012

Imagine...a doll with pink hearing aids!

A fuscia pink wheelchair and hearing aids are part of a new American Girl line of accessories that includes purple sunglasses, earrings in the shape of pets and a flower-power purse.


But after noting that these items allow kids with disabilities to see themselves in their toys, and help normalize differences for all children, Jezebel writer Dodai Stewart questions whether the company isn't focusing too much on "ultra-customization" -- instead of allowing girls to imagine themselves in a different time and culture.

"Does it put too much emphasis on the individual?" Stewart writes. "Is it all connected to this new selfishness, the kind of parenting that insists every child is a special snowflake, worthy of praise just for existing?

Huh?!! wrote Ellen at Love That Max this morning, which is where I heard about the story.

Stewart continues: "It seems like, with the original history-oriented American Girl Dolls, the doll was a time-machine friend, the book taught a lesson, and you didn't have to be black to learn from Addy, the girl who escapes slavery during the Civil War."

Yup, that makes sense.

But Stewart then questions whether the custom dolls mean "there's less interest in exploring different cultures."


News flash: Disability is a culture, an identity, a minority group that is devalued. Why does Stewart assume that only a girl who wears hearing aids or uses a wheelchair is going to purchase these accessories?

What about the girl who hears fine but want to imagine, through her doll, what it's like to wear pink hearing aids and speak with her hands and her mouth?

Isn't that the same as pretending you're the girl escaping slavery in the Civil War?

How is it any different?

For the first time millions of little girls (and boys) are going to be able to use their play in a way that opens up their minds to greater diversity.

Every child is a snowflake, and the more we encourage kids to create stories and play about all variations of those intricately-patterned crystals, the better. There isn't anything selfish about that.

Sunday, November 25, 2012

Any Day Now

Friday, November 23, 2012

A sibling night with Melanie and Tommy

Hear about how one creative family sought to educate school peers about their daughter's genetic syndrome -- and help her brother cope with sadness that his sister was being teased -- by writing a children's book.

Call for questions

Post questions related to child disability and parenting in the comments below and we will answer one next Friday by going to an expert at Holland Bloorview -- professional or parent.

Note: We can't answer questions about your child's care at Holland Bloorview in this forum. All feedback related to your child's care here is welcome by calling Kimberley Siu-Chong, client and family relations facilitator, at 416-753-6084. Kimberley responds to concerns, compliments and suggestions so that we can continue to improve care and safety, and enhance your experience at Holland Bloorview.

Post new questions about child disability and parenting here!

One question Friday

It's our first day to respond to a BLOOM question (actually, we're doing two today).

Q1. How do healthcare professionals feel when they meet a family that has waited for months to meet them? Do healthcare professionals feel there are adequate resources to appropriately assist all the children they assess?

BLOOM asked Dr. Golda Milo-Manson (photo inset), a developmental pediatrician and vice-president of medical and academic affairs at Holland Bloorview, to respond.

Dr. Golda Milo-Manson: All health professionals wish that they could see children and families as soon as they receive the referral but in order to be fair and meet the demands of all children waiting for service it isn’t always possible.

The great news is that we’ve made a lot of changes at Holland Bloorview to improve our access to services. For example, the wait for assessment of children with complex medical problems or developmental disorders, like autism, is now under three months.

In terms of your second question, it’s difficult for me to speak on behalf of all health professionals. As a developmental pediatrician, I can tell you that we run the largest training program for this specialty in Canada, but our capacity to train is not meeting the demand that is growing. And the demand is not just in Canada – there are vacancies for developmental pediatricians internationally.

Q2. What is the appropriate way to handle a child with special needs who doesn't understand the "rules" of the playroom and throws toys without picking them up? By tagging behind the child constantly telling them not to throw toys, I worry the child is internalizing that everything they do is wrong (always getting in trouble no matter what they do). It is the disability that is preventing the understanding and the sensory issues that are causing the exploratory behaviour. Holland Bloorview is supposed to respect special needs, not reprimand constantly although I understand there are also rules to follow.

BLOOM asked Laura Williams, director of client and family integrated care, to respond.

Laura Williams: Thank you for bringing your concerns forward to us. Your feedback about your experience in the playroom is very important to us, but it's difficult to respond properly to your question without more information. The best way for you to have your ideas and feedback heard and addressed is through our client and family relations process. Kimberley Siu-Chong responds to concerns, compliments and suggestions from our clients and families so that we can continue to improve client care and safety, and enhance your experience at Holland Bloorview. Please contact Kimberley directly at 416-753-6084 to share your thoughts. The playroom team and Kimberley are happy to work together with you to address the issues you’ve raised. Thanks again!

Wednesday, November 21, 2012

One humanity, one voice

Being different is isolating, but if we join with others who are perceived as undesirable we find community and a powerful voice for social change, says Andrew Solomon, author of Far From The Tree, at a talk at the Toronto Reference Library yesterday.

"It's important to establish the commonality of difference," Solomon says, speaking of his new book that explores families of children who appear "alien" to their parents because they have conditions like Down syndrome, dwarfism, deafness and schizophrenia, or are transgender, child prodigies or conceived in rape.

"It's all one battle," Solomon says. "If you take every [person] who experiences themselves as somehow different from the mainstream, that's more people than in the mainstream. All of us should be addressing the questions and advocating together for a more just world."

Solomon is referring to the way minority groups have historically split off from each other in their advocacy efforts. People with physical disabilities don't want to be identified with those with intellectual disabilities, or people with mental illness object to being compared to those with autism, or someone who's transgender doesn't see any common experience with a person with dwarfism. As he notes in his book, the parents of child prodigies didn't want to be included in a book with families of severely-disabled children, people with autism insisted that those with Down syndrome had lower intelligence than them, and deaf people didn't want to be associated with people with schizophrenia.

I think Solomon has nailed the problem of discrimination within the disability community -- and how it fractures all of our attempts to achieve equality as humans.

"Being blind and being gay are different, but having a selfhood that others perceive as undesirable is identical," Solomon writes in Far From The Tree.

Solomon admits that before writing the book he was "somewhat afraid or uncomfortable" with the groups of people he'd be interviewing. "Then I got to know people and hear the stories of people and I felt a glowing humanity...The experience of habit makes these syndromes different from how one imagines them from the outside."

Solomon first became interested in writing about parents whose children appear to be unlovable when he wrote Defiantly Deaf for the New York Times Magazine. In researching the piece, he realized that his experience growing up gay with straight parents had parallels to what it felt like to be a deaf youth living with hearing parents. "I saw people who were deaf didn't experience it as 'lacking hearing' but as having membership in a good and valid culture" centred around sign language, Solomon said. "I became interested in the tension between the ideas of illness and identity.

Solomon contrasts how being gay in the 1970s was perceived as an illness and criminal act while his life today as a husband with children is seen as an identity. "I thought if people can make that switch from illness to identity, then where else is [that change] possible?"

Solomon's book focuses on what he calls horizontal identities -- "when a child is a member of a culture with which the parents have no previous experience and needs to learn identity from a new peer group." In contrast, vertical identities are traits that are passed down generationally, like race and language.

Horizontal identities are central to a person, Solomon says. "They are inherent to someone's whole personality and you can't cordon them off," as some parents attempt to do -- refusing to allow a deaf person to sign, for example, trying to turn a gay child straight, or insisting that a child with dwarfism have their arm and leg bones broken in a dozen places, and stretched in a painful, even "barbaric" he says, procedure.

"When parents say 'I wish my child didn't have autism,' what they're really saying is 'I wish the autistic child I have did not exist, and I had a different, (non-autistic) child instead," is how a man with autism describes it to Solomon. "...This is what we hear when you pray for a cure...that one day we will cease to be, and strangers you can love will move in behind our faces."

Solomon notes that at a time when life for people with Down syndrome is better than it's ever been -- "they live longer, have more intellectual accomplishments, function better and have greater education opportunities" they are at risk of being eradicated through prenatal testing and termination. He doesn't argue against prenatal testing but believes "a lot of the decisions are made from a standpoint of ignorance." He admits that his decisions on such matters would have been different before his indepth exposure to people with disabilities.

He stresses that cultural perceptions about what's a disability and what's an identity are fluid. "These things change. What seems today to be a disability 10 years from now might not be seen as a disability."

Social progress in how we view difference is as important as medical progress, he says. With the advent of "designer children" he hopes that "social mores will also progress, so that when we're given more choice, we won't all make the same choice." He calls for an "opening or expanding of our idea of normality."

Solomon says institutional and home care should be options for families and we have to recognize that while some families are suited to heavy caregiving, others are "barely holding on."

Typically the interests of non-disabled siblings are put first in decisions about where the disabled child lives. For many years, he says, it was standard practice to send disabled children to a home "in order to ensure siblings didn't have attention taken away from them." Now standard practice is that it's better for siblings to keep the disabled child at home so they don't later in life blame themselves for being the cause of the child's abandonment. But in either case "the focus is on the siblings and their mental health" Solomon says, rather than on the child with disability.

Parents with a lot of privilege in life tend to be perfectionistic and it was in these families where he saw the strongest attempts to "fix" the child, he says. In contrast, in families that didn't have the means to invest in intensive rehab programs, parents were more accepting of the child's differences.

He notes that while the siblings he met sometimes experienced their brother's or sister's care as draining, or felt parents were preoccupied with it, they loved their sibling deeply and did not wish that the child didn't exist. He came to the conclusion that the disability experience made siblings "more humane and kinder."

He encourages people to describe those with differences in a way that respects, rather than denigrates, while noting that we often become ludicrously rigid about language and intention is most important.

Solomon says that human diversity is what makes the world rich and is as important as diversity in animals or flora.

"Even when everything went wrong, people find meaning in the experience of being parents," he says. "This is not a Hallmark card and I'm not suggesting we go around saying 'What a shame that child isn't disabled.' But, as in looking at depression, it's possible to look deep into difficulty to find meaning and it's possible to grow. These are challenging and shocking experiences that call on people to undergo a profound transformation."

Andrew Solomon won a national book award for The Noonday Demon, An Atlas of Depression in 2001.

Tuesday, November 20, 2012

Negative capability

Students in black academic gowns stream down the wide wood staircase. Chatter chatter chatter. Laughter. Gowns come off. White coffee cups on saucers. The sound of a piano.

My disabled son will never come here, never know this.

Do you know where the Round Room is?

Two girls direct me through the stone courtyard. It's dark and still, except for the running water -- little waterfalls in a pond. I find the Round Room but there's a notice on the door to go to the Upper Library. Back I go across the courtyard. The Upper Library is furnished in dark wood. Chairs with cushions have been set on a Persian rug of blood red and navy and royal blues. In front is an elevated platform with a long wooden table set with wine glasses, a silver carafe of water and a display of poetry books. Behind it sit the three speakers. The walls are lined with bookcases. I can only make out coloured volumes of something called Punch. Middle-aged women with spectacles and notebooks. Latecomers are students with backpacks. The smell of cologne. It's quiet, anticipation, lights somewhat dimmed. Jovial voices waft into the room from what I can only imagine is the Lower Library. Everyone has expensive footwear. Chestnut leather boots with laces. Funky Mary Janes with ankle ties. It feels civilized, well mannered. A door closes as a pianist begins to play outside.

We are here at Massey College, a graduate student residence at the University of Toronto, to discuss something called Negative Capability. The romantic poet John Keats called it "capable of being in uncertainties, mysteries, doubts, without any irritable reaching after fact and reason.” In health care, "it's a reflective capacity that allows you to step back and not be carried away by answers and actions," says Dr. Allan Peterkin, a psychiatrist and head of the Health, Arts and Humanities Program at the University of Toronto.

Ronna Bloom, a psychotherapist and poet in residence at Mount Sinai Hospital, describes negative capability as a strange, open, shaky place that feels unbearable when clinicians think they should be "doing something. If I'm certain that I know what's happening with a patient then I'm going to lose what's happening."

This openness to not knowing, to ambiguity, allows professionals to "see the person in front of you and the language they're using and their metaphors," Bloom says. She suggests the clinician's role is as a "friendly listener to the patient story."

It's a challenging one because it runs counter to the "perfectionism and stoicism that gets instilled in medical education," Dr.Peterkin says.

So an important element of negative capability is having "compassion for oneself when not knowing," Dr. Peterkin says. "It's not possible to have compassion for the person in front of you if you're being hard on yourself," Bloom notes. Humility is the outgrowth.

Reading literature is a way of enhancing empathy, studies show, "because of the capacity to imagine someone different from yourself," Dr. Peterkin says.

"It allows you to enter lives from the inside in a way you never have clinically," says John Donlan, a poetry editor with Brick Books and a reference librarian at the Vancouver Public Library.

Similarly, asking a brilliant surgeon to write a poem levels the playing field because it puts him or her in unfamiliar territory.  

Bloom says that in poetry workshops, medical students at first judge their writing to be "hokey and cliché" because letting their thoughts flow is foreign to their linear, intellectual education. But they soon come to see that their discomfort has a positive outcome: They begin to feel greater compassion for themselves.  

A psychiatry student asks: "What do you make of the fact that negative capability tends to speak of truth" -- perhaps more than conventional ways of knowing?

And it strikes me that disability is all about sitting with uncertainty -- with adapting to the fact that as humans, we don't control our lives. People with disabilities can't pretend they're perfect, invulnerable. They don't have the luxury of living in illusion.

Oddly, my son Ben, whose intellectual disability bars him from ever sitting in a hall of higher learning like this, may be closer to negative capability than those who study it. If only he could relax into the uncertainty, I think, instead of struggling, like the rest of us, against it.

Monday, November 19, 2012

To ponder

"There is no contradiction between loving someone and feeling burdened by that person; indeed, love tends to magnify the burden. These parents need space for their ambivalence, whether they can allow it for themselves or not. For those who love, there should be no shame in being exhausted..."
Andrew Solomon, Far From The Tree

Friday, November 16, 2012

One question Friday

Post questions related to child disability and parenting in the comments below and we will answer one next Friday by going to an expert at Holland Bloorview -- professional or parent.

Fire away!

Thursday, November 15, 2012

Is difference an illness, an identity, or both?

I'm ferociously reading Far From The Tree by Andrew Solomon. His insights on how parents find meaning in raising children with disabilities and other differences is fascinating. I've marked up the first chapter with lots of underlining and asterisks, but this passage really made me think.

"Anomolous bodies are usually more frightening to people who witness them than to people who have them, yet parents rush to normalize physical exceptionalism, often at great psychic cost to themselves and their children. Labeling a child's mind as diseased -- whether with autism, intellectual disabilities, or transgenderism -- may reflect the discomfort that mind gives parents more than any discomfort it causes their child. Much gets corrected that might better have been left alone.

..."We often use illness to disparage a way of being, and identity to validate that same way of being. This is a false dichotomy...Many conditions are both illness and identity, but we can see one only when we obscure the other. Identity politics refutes the idea of illness, while medicine shortchanges identity. Both are diminished by this narrowness.

"Physicists gain certain insights from understanding energy as a wave, and other insights from understanding it as a particle, and use quantum mechanics to reconcile the information they have gleaned. Similarly, we have to examine illness and identity, understand that observation will usually happen in one domain or the other, and come up with a syncretic mechanics. We need a vocabulary in which the two concepts are not opposites, but compatible aspects of a condition. The problem is to change how we assess the value of individuals and of lives, to reach for a more ecumenical take on healthy. Ludwig Wittgenstein said, 'All I know is what I have words for.' The absense of words is the absence of intimacy; these experiences are starved for language."

Louise here again -- I've often felt I don't have the words to describe my experience with a son who won't achieve conventional success, but who has a rich and valuable way of being and from whom I've learned the most about what matters. As Solomon says: "These experiences are starved for language." We don't have the vocabulary or imagination to articulate them because they fall outside mainstream thinking and language. We need new words -- new ways of defining beauty, wisdom, purpose, movement and strength that capture the diversity of how our children express these things.