Some scars fade, some never will

I’m excited to announce a new partnership with Holland Bloorview’s family advisory committee (FAC). The FAC works with staff to ensure that the needs and priorities of families shape Holland Bloorview services. In order to build the capacity of our blog, a number of FAC parents have agreed to participate as BLOOM bloggers. I’m excited to introduce our first FAC guest blogger, Lori Beesley. Lori and I learned we had a lot in common a couple of years ago, when she called me about promoting the Fragile X Research Foundation of Canada. She used to work with my brother and we both have sons with intellectual disability. Thank you so much Lori for sharing here! Louise

Some scars fade, some never will
By Lori Beesley

I will never forget the moment our son Mitchell (above) was born.

I expected to hear: “It’s a boy!” or “it’s a girl!”

But that’s not what I heard. Instead, our doctor quietly, but with great urgency, told a nurse to “Get the pediatrician on duty stat!”

Our son had a small birth defect, she said. I saw her put her finger into his misshapen mouth and she told us that he had a cleft lip. It seemed that his palate was intact and we should be happy about that, she said. Happy about a birth defect? I wasn’t.

Every expectant woman says she hopes her baby is born healthy. But really, isn’t that our expectation? There are plenty of statistics at your disposal showing that not all babies are born ‘perfect.’ But you push those numbers out of your mind and focus on cute bedding for the crib, teddy bears and what stroller best fits your lifestyle.

Our son, Mitchell, had two facial surgeries to repair his cleft lip before he turned five months old. By now we knew all about cleft lips and palates and we were happy that his palate was intact. However, as I held him in SickKids Hospital, counting all those stitches on his tiny face and lip, I felt somehow that I had failed him. I had taken good care of myself before and while pregnant, ate well, taken folic acid and prenatal vitamins, but still, the unexpected happened. I remember thinking “This better be the worst thing he has to go through as a child!”

After his second surgery, Mitchell wore a plastic spacer in his nose for six months (to help form nasal cartilage). It was held in place with a strip of surgical tape. I will never forget people seeing the stroller and saying “Oh, can I see your baby?” followed by the looks: shock, surprise and discomfort. More than once, people said: “Oh my God, what's wrong with it?” and looked at me with disdain. These reactions always took me by surprise, because while I was aware of his facial difference, I didn’t define him by it.

In the months following Mitchell’s surgeries, we were forced to recognize that he wasn’t meeting his developmental milestones. We could no longer deny his delays or attribute them to surgery. We began to investigate and the next year was filled with many tests. As a last-ditch effort to discover the cause behind his significant developmental delay, we were sent to a geneticist. She performed a simple blood test and told us to come back in six weeks.

Two days after Mitchell’s second birthday, we sat in the geneticist’s office while she told us our son had a genetic developmental disability. She said it was life-long and there was no cure. Mitchell was diagnosed with Fragile X Syndrome.

I remember feeling numb, guilty, terrified and relieved all at once. The guilt came from knowing I had carried the Fragile X gene that was passed to Mitchell. We had no prior knowledge of it, or any family history, so I quickly had to ‘forgive’ myself and think – you know what, you passed along your brown eyes and you didn't control that, so this has to be thought of in the same way. The terror and numbness came from entering the vast Fragile X and special-needs world. We suddenly had a whole additional layer of parenting added to our lives. The relief came from knowing we had an exact diagnosis and could start to do something – read, educate ourselves, seek out targeted therapies, meet people with expertise in this area and know what to expect. Knowledge is calming, and makes me feel in control.

Mitchell’s childhood was suddenly filled with therapies – speech, occupational and physical – and countless doctors’ appointments. His life and our own changed forever. No simple surgery could fix this.

It took a while to stop seeing the disability and start seeing Mitchell again. It struck me one day, as I filled out one of the forms that were as much a part of my life as changing diapers, that I thought of myself as the mother of a ‘special-needs child’ and not just Mitchell. Was I defining my son only by his disability and not looking deeper? Had I become like one of those people who said inappropriate things after peering into Mitchell’s stroller? I vowed that day to stop seeing Fragile X before I saw Mitchell. There were other things about Mitchell that were unique and precious that I needed to focus on.

Mitchell was still our son who laughed when you put a blanket over his face, was content to lie on our bed and watch the ceiling fan, and loved to play with toy trains and cars. He’d scoot around the house on his bum and close all the doors. He enjoyed playing with pots and lids. He’d squeal with delight anytime he was around water. Mitchell was still adorable, curious and ate and slept well. My son’s smile could still light up a room.

My son’s Fragile X is largely invisible in that there are no physical characteristics at birth, or even during early childhood. Even when those characteristics manifest themselves around puberty, they can be subtle and vary: a longer face, ears that stick out, a pointy chin or a high forehead. It might sound strange, but there have been times that I wished there was something about Mitchell that labelled him – like a pale purple X on his forehead.

Perhaps then others wouldn’t look at him with puzzled faces when he acts years younger. They would understand why he wanted so badly to ride in the grocery cart shaped like a rocket at age 10, or flaps his hands with excitement while waiting in line for an ice cream cone.

At times, I want to rush over and explain about his Fragile X. I don't think I do this out of embarrassment, but rather to raise awareness. So many people have said to me “He doesn't look disabled” and I say "Yes, this is what it looks like" and try to have a discussion.

I feel like a part of my job as Mitchell's mom is to help to remove the stigma around intellectual disability. I can't be in the lab, finding a cure, but I can educate, create awareness and help others. I owe that to him. That is how I cope, how I feel like I can do something positive. At other times, when Mitchell is acting inappropriately in public, I just go with it and really don’t care what others think. I just want to be his mom and not feel like I have to educate everyone.

The most frustrating thing about Fragile X is not knowing what it's like to be Mitchell. If I could just be Mitchell for a day – or even one hour – and get inside his head, I believe I’d be a much better parent.

So many times I don't understand why he does what he does and that’s hard to deal with.

I don't get how he has to have certain things lined up just so, like the napkins in the napkin holder, but will then scatter his movies all over the floor and not care. I don't get why we had to teach him to walk on grass when he was little because of his bad sensory issues, yet he'd attempt to walk through, rather than around, a prickly juniper bush. I don't get how he can memorize an entire movie after watching it only a handful of times yet it took him years to learn his colours. A friend who has a daughter with an intellectual disability recently told me that her daughter is a study of ‘wonderful, frustrating contrasts’ and we laughed together because that description says it all.

Mitchell is now 16-years-old and his cleft-lip scar has faded to the point of being undetectable. But Fragile X Syndrome, while largely invisible physically, is a part of our lives forever. It won’t fade with time. I used to say that knowing what I know now, I would trade a simple cleft-lip surgery every year if it meant no more Fragile X in our lives. Isn’t life ironic?

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Leaving an (adult) child for the first time

Another great post on the NY Times Motherlode blog today.

A mother writes about leaving her adult son -- who has autism and a seizure disorder -- for a week's trip to Paris to celebrate her and her husband's 30th wedding anniversary:

At home, I am the all-consumed mother of a disabled child. In Paris, I become an art and history lover. A bon vivant. A flâneur — one who saunters. In Paris, I feel young... We have never left Mickey for a week. He has left us, of course, to go – reluctantly – to a special needs summer program for three weeks. But now he is the one being left. I shudder, thinking how often he asks me, “Do people come back when they die?”

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Ignoring 'typical' siblings

The New York Times Motherlode blog has an interesting piece today about a family with 4-year-old twin girls who are conjoined (right).

Ignoring 'typical' siblings questions how parents of children with disabilities or medical problems balance the needs of their other children.

You may want to leave a comment about how you do just that -- or try to!

A much longer piece about the twins is the cover story in this weekend's New York Times Magazine. Louise

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Hopeful parents, Ben's new love and links

I'm over at Hopeful Parents today: A letter to myself.

Guess what? Ben is in love. With Jessie, the red-haired, cowgirl in Toy Story 2 and 3. He likes to listen to her sing that sad song "When somebody loved me" and carries an enormous Pixar coffee table book around so he can look at her picture. He also likes forwarding the Toy Story movies to the places that correspond with the photos in the book. And although he finds typing an e-mail painstaking, he is always up for writing something about Jessie. Usually: I love Jessie. He thinks she's nice and funny and brave.

I have a meeting on Friday with the folks from the Toronto Catholic District School Board. I hope it proves fruitful.

Here are some interesting links:

Our daughter's Down syndrome has taken us on a beautiful journey

Developmental disability affects 1 in 7 US kids
The Pediatrics journal article that covers the study quotes it as 1 in 6.

Penalized for working -- disabled lost 50 cents on every dollar earned

The book
BLOOM guest blogger Jen Johannesen is working on a book. I love the themes she's exploring:
Since Owen's death, I have been capturing some of our stories in order to share these experiences with fellow Canadians. Although Owen was an extreme example, I believe our story touches on healthcare themes important to Canadians, including system navigability, controversial application of technological intervention and the growing burden on the patient to case-manage themselves.

Morgan's Wonderland caters to visitors with special needs

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Brothers

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Inclusion part two

I thought about my my last post over the weekend. Because it was written under the typical time constraints, I can see that Gina's comment was unfairly positioned as the one example of "inclusion -- or else" -- when in fact I was writing about a number of experiences I've had or discussed with other parents. It was the comments that followed Ellen's post about the merits of special-needs or mainstream camps that made me feel parents can be strident in their views in a way that doesn't reflect reality for some families.

When I said I contacted a mom of a daughter reaching adulthood after interviewing filmmaker Dan Habib about inclusion, we had a much longer dialogue about how we've had to mix segregated and inclusive activities for our teenage children. And this mom talked about how she thought it was realistic to assume she'd have to do the same when programming her daughter's adult life after high school.

This might involve combining some volunteer work with recreation activities and a day or two of a more traditional sheltered workshop. She questioned whether it was possible to set up and manage five days of inclusive activities without relying on some existing services (short of leaving her job and making her adult child's life a full-time job, which some parents do).

We both sensed that if our children attended a segregated day program as adults -- even part-time -- that parents who had created only inclusive activities for their adult children would view this in a negative light.

And I think the important point here is that parents within the disability community feel judged by others based on the choices they make for their children -- instead of supported.

I've felt the same criticism from parents whose children have gone through the school system in a regular class. There's a sense that parents should fight for full inclusion at all costs -- even if it means their child wouldn't get the supports they need to be successful or safe.

Galen, a pediatric occupational therapist for 30 years, single mom to 10 adopted children with a wide range of disabilities, and BLOOM reader, has written about this in The inclusion debate. 

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Inclusion -- or else!

Months ago I wrote to a BLOOM reader who has a daughter reaching adulthood. I had just done an interview with filmmaker Dan Habib about inclusion and felt horribly guilty that Ben was in a segregated school.

“Ah yes,” the mom responded. “The inclusion – or else – debate!”

Now Dan never made me feel judged because my son isn't integrated. He understands the barriers. But too often I find people who promote inclusion have zero tolerance for anything less than 100 per cent.

Last night, Ellen at Love that Max posted about how one of her readers was challenging her to send her son to a regular overnight camp – vs. the special-needs sleepover camp she had planned. "I wouldn't nag if I didn't think you had it in you to challenge your own thinking and be open to a different path for Max," this reader wrote.

My own experience is that families whose children are not in regular classrooms or camps have made this decision not because they have an attitude-problem -- or are close-minded, as Ellen's reader suggests -- but because they simply can't find a regular class or camp that is resourced to support the complex needs of their child.

In other words, the town, city or country they live in is not as far enough along in investing in well-supported, inclusive environments.

Sometimes we families may choose inclusion anyway -- even when it comes at a cost.

For most of elementary school, Ben went to an alternative school for typical kids precisely because I wanted him included. On the plus side, he made some authentic friends and was relatively well accepted. On the negative side, although he had an EA, the school didn’t offer any special-ed or sign-language support, the building was an acoustic nightmare for a child with hearing loss, and he didn’t get the structured learning environment he needed.

I’m grateful he had that time in a typical environment, but I can’t say that the friendships he had there lasted. I’m sure some inclusion experts would say that’s because I didn’t try hard enough to maintain them – perhaps by setting up a formal friend circle or being more proactive in keeping in touch when he left the school.

We did make efforts, but because my son can’t pick up the phone to talk to someone, or easily e-mail, it was hard to keep in touch when we didn’t see each other through school.

What I believe was Ben’s best year of education happened in Grade 8, when he went to the Metro Toronto School for the Deaf. The contained program was part of a larger regular school, and in addition to the students in his class, Ben got to know some of the kids who took the bus with him.

The class was small and combined speech and sign language. The teacher had high expectations and knew how to teach kids with hearing loss or learning problems. The other students were mainly ‘regular’ kids who were deaf. The teacher promoted a very inclusionary environment where students looked out for each other.

Unfortunately, Ben aged out of that program after one year. In the Toronto board, students with complex needs are taught in contained classes at high school, not included in regular classes. We were given the option of a segregated school for students with mild intellectual disability – in a deaf/hard of hearing class – or a contained class in a regular high school for kids with developmental disability. The latter was in the basement, no windows, and most of the kids didn’t use sign language.

Ben spent three years at the separate school, and this year we decided to look at other options when we realized his program was almost entirely life skills.

I’m going to visit some MID classes in the Toronto board, and am also meeting with the Catholic board. But there are few options that meet his multiple and complicated needs – and none are based on inclusion in the regular class. I’ve been told the Catholic board doesn’t have an MID class that uses sign language, and that their deaf/hard of hearing classes are segregated. And I assume theirs are the same as the Toronto high school classes, where the students sign but don’t speak.

Ben needs to be in an environment with speech and sign, with primarily one-on-one teaching, and where he is physically safe: he has severe short stature, bone problems, is weak and can’t walk for any distance.

I will visit a number of programs and check out our home high school. But as much as I would like to have him in some way included with typical students, I have not seen a regular high school class that is resourced to support children with complex, multiple needs in Toronto.

Perhaps someone reading this will enlighten us – I’m happy to add another program to my list.

I know that from a legal perspective, I could show up with Ben on our home school's doorstep and demand they take him. But at what cost? Him having only one person -- maybe an EA -- who understands his sign language? Tiny Ben, with bones as fragile as an elderly person's, being knocked over by regular, strapping 17-year-olds? And at our home school they will not put him in a regular class anyway. He will be put in a contained class.

I believe that inclusion in all parts of society is where we need to go.

But sometimes, I find myself caught between a rock and a hard place in terms of what is available – at least in the school system – and what inclusion advocates say is “right.” Too often, as a parent, I feel judged.

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The downside of special

A few weeks ago Sue Robins e-mailed me a copy of The Downside of Special: Parenting a Child with Special Needs.

'Stress, guilt and uncertainty are the norm for parents of children with developmental disabilities,' reads the deck. 'But instead of doling out pity and those can’t-you-control-your-kid? glares, one mom asks for your support and a little understanding.'

Sue, a recent chair of the Canadian Family Advisory Network, told me this piece in Canadian Family magazine (image above from its website) was generating a lot of conversation in the special-needs community in Edmonton.

"I don't agree with all of the sentiments in the article, but I like that it tackled this topic," Sue said. "What I thought was interesting was that it looked at how it's hard for me as a parent of a child who's different -- because that makes me different too! I feel different in public, and especially different at my son's school. And I find that hard. I haven't seen that written about before."

I was delighted to see a mainstream parenting magazine raising awareness of the needs of parents of children with disabilities! I thought the author nailed a number of the emotions and situations we experience, though her tone was a bit flippant in places.

Some of the comments that resonated with me:

Driving home, I watched my son in the rearview mirror, and he looked the same. Yet I saw him differently; his beauty had been violated, somehow, by Miss P.'s words. But my overriding feeling was one of shame. I hadn't heard concern in her voice,... only judgment: I'd produced a problem child.

There's also, for many parents, a  profound sense of loneliness. You feel you're out in the cold with your nose pressed up against the glass of normal experience, watching as your friends sail past, merrily oblivious, with their typically developing children.

...Family and friends may pull themselves away...A more subtle form of rejection occurs when people try to minimize your child's issues...When others deny your reality, it no longer feels safe to talk about it.

No one talks much about the anger, the embarrassment, the despair -- or the mind-blowing cost of treatment and the extreme difficulty of navigating the school system. All of this helps explain why parents so often feel as I did: cut off, with unacceptable emotions best kept to themselves and no clue what to do next.

Having fun and playing with your child often fall by the wayside because there's so much work to do and so little help.

Having a child with special needs radically changes the texture of motherhood...many moms become uber-researchers, activists and tireless networkers. "You go from mother to case manager," says Tess.

Love is there, fuelling your determination, but so is bloody-minded detachment, the same kind you see in personal trainers.

The strain all of this puts on a marriage can be extreme.

Once my son had a major meltdown, raging, screaming and crying as though he were being tortured, right outside the door of the kindergarten where several parents were already agitating for his expulsion...I felt a range of emotions, but the strongest was not empathy for my sweet, complicated little boy, who was clearly in profound distress. It was embarrassment...I wished at that moment not to be his mother, not to have to deal with this. This is another hard truth about having a child with special needs: The things that are most endearing and lovable about the child may be invisible to outsiders, while the things that are mortifying are all too visible.

Read the article and let us know what you think. And leave a comment -- there are no comments yet! I was disappointed that the author didn't use her real name -- and none of the people interviewed did either. I was surprised given the whole point of the story was to raise awareness and generate more understanding of our experience in the general public. How can we do that if we're not open about who we are?

Let us know your thoughts! Thanks, Louise

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Dads and depression

The story below is from Disability Scoop, an excellent online resource for issues related to developmental disability. I think the mental-health impacts of raising children with disabilities are still a bit taboo. And I was just talking to one of our dad readers about how it's harder for dads to connect with each other -- for information and emotional support. Thoughts? Louise

Autism takes heavy toll on dads
By Michelle Diament, Disability Scoop

More than 30 percent of fathers of grown children with autism experience symptoms of depression so severe that they warrant clinical attention, first-of-its-kind research indicates.

In a study presented Friday at the International Meeting for Autism Research in San Diego, researchers found that fathers of adolescents and young adults with autism experience high levels of depression and are pessimistic about what the future holds for their son or daughter, much more so than dads whose kids have other disabilities like Down syndrome and fragile X.

“Fathers of adolescents and young adults with autism are really faring the worst,” says Sigan Hartley, a University of Wisconsin-Madison researcher who led the study, which was recently accepted for publication in the journal Family Relations.

Hartley said her findings mirror what researchers already know about mothers of those with autism — that they experience higher stress than other moms and that stress remains even as their children age. But this is the first time anyone has looked at how dads cope as their children get older.

For the study, Hartley and her colleagues looked at self-reported data collected between 2000 and 2005 from fathers of 240 individuals with autism, Down syndrome and fragile X syndrome ranging in age from 10 to their early 20s.

After controlling for the child’s age, family income and the marital status of the father, the research team found that dads of those with Down syndrome fared best out of the three disability groups while those with a child who had fragile X syndrome fell in the middle.

Factors such as the child’s behavior, the likelihood of having more than one child with a disability, the father’s age and the mother’s well-being did seem to play a role in fathers’ experiences. But Hartley says more research needs to be done to better understand what’s leading to elevated levels of depression symptoms in dads of those with autism in particular.

“This is the first step to drawing attention to dads,” Hartley says. “We need to get away from just looking at moms.”

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A letter to Mrs. Zhuang

Many of you read the news last week that Ran Zhuang of Boston was awarded a $7 million settlement because her daughter was born with a genetic disorder. Zhuang says she would have aborted the child, who is now 3, if she'd been offered prenatal testing. I asked Amy Julia Becker (above with daughter Penny, who has Down syndrome),  to respond, and she did, with the following letter to Mrs. Zhuang.

Let us know what you think! Louise

Dear Mrs. Zhuang:

A friend sent me the Boston Globe article about your recent lawsuit: “A superior court judge approved a $7 million settlement yesterday in a lawsuit brought by a Shrewsbury woman against four medical professionals at a Worcester hospital, whom she accused of failing to offer or explain tests that could have prompted her to have an abortion rather than carry her now-disabled child to term, her lawyer said yesterday.”

When I read it, I felt a tightness in my chest. I felt defensive of our daughter, who has disabilities caused by Down syndrome. I felt angry. And I felt sad. The only thing I wrote to my friend in response to the article was, “Ugh.”

I have two competing thoughts when I hear about your situation. One is that every human life is valuable and meaningful, no matter the form it takes, no matter the genetic problems involved, no matter the degree of disability. The other is that I should feel empathy and even love towards you, that I should try to understand. I guess the second point is really the same as the first. Just as I believe your daughter has intrinsic value, so too do I believe that you are a person who deserves my respect, my compassion.

Maybe you were frightened by the conversations we have had recently in this country about health care. Maybe you thought this lawsuit was the only way to ensure that you would be able to care for Annie in years to come. I imagine you are very sad about some aspect of your daughter’s life. I don’t know if she is experiencing pain and you desperately want that pain to go away. I don’t know whether she can walk or talk or smile. I don’t know if she keeps you up at night. I don’t know if she calls you Mama. I don’t know if you feel worn down by the care she needs. I don’t know. But I have to imagine that some of those things are true and as you look ahead to decades together, you not only feel frightened and overwhelmed by what those years will require of you, but angry and saddened by what those years may require of your daughter. I have to imagine that you love her, as only a mother can.

And yet.

A spokesman for the hospital said, “Events of this nature impact patients, their families, and the providers of care, and we strive to learn from them." Your decision to sue sends ripples that reach beyond your personal situation. Doctors and nurses and genetic counselors, fearful, might be more inclined to push for prenatal genetic testing and even abortion of fetuses. Your story may incline individuals who read about the case to think that children with disabilities aren’t wanted by their parents, that children with disabilities are a categorical burden on society, and that genetic testing offers control over the outcome of individual lives. Your individual decision to sue has consequences for the entire community.

Of course, the impact goes both ways. A child with a disability requires a community of care. I can only imagine your situation based upon what I read in the paper, but I wonder if you feel isolated. I know you are from China and English is not your first language. I wish I could say that everyone in America wants to offer support and inclusion to children and adults with disabilities. Unfortunately, it’s not true. But there are many people in this country who care deeply about families like yours. There are many who would love to get to know Annie. And so I wonder whether those of us who, like you, have children with disabilities, might be able to welcome you into our community, whether we might be able to offer support in the hard times, whether we might be able to share your joys and offer some comfort in your sorrows.

Amy Julia Becker blogs at Thin Places, where she writes about faith, family and disability.

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A weekend escape

Joanne Barker wrote to me about a Moms' Camp run by Easter Seals in London, Ontario. "I'm a mom of a special needs child and I can say honestly that the Moms' Get Away Weekend is the one real break I get every year. It really is a chance to connect with other moms that have 'been there.' We let loose a little, get the much need rest we've been missing and build friendships that last."

It sounds like this model would also work well for dads!

Here are a few more details from Joanne:

As a mom, you know that there's never enough time in a day to get all the things done that need doing. As the mom of a child with special needs, that sense of pinching time is only heightened. Between medications, appointments and life, your day may start at dawn and end well after midnight. A break never comes -- not that you regret it cause you love your kids -- but burning out always hovers in the offing.

Moms' Camp is exactly what it sounds like -- a quick getaway for Mom. It starts on a Friday evening and for two glorious days moms who spend 24/7 caring for a child with special needs get a chance to not cook, not plan, not worry and not clean.

Moms' Camp is a-once-a-year chance to enjoy a weekend of rest, relaxation, idea sharing, networking and life experiences with other Easter Seals moms. There are organized activities or you can just sit by the pool, read a book or rest. There's no obligation to participate in activities.

What you're going to find at Moms' Camp is friendships you weren't expecting, people who understand what you're going through, a sizeable support network, and that much needed rest that allows you to be the very best.

This year's camp runs June 10-12 at Woodeden Easter Seals Camp in London. Space is limited to 70 moms and the cost is $70. While the camp is primarily for moms whose children are registered with Easter Seals, all mothers are encouraged to apply.

For more information, click on this registration form or e-mail Joanne at jbarker@trebnet.com.

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She shoots, she scores!

I received this moving story from David and Carol Fisher who run a hockey team in Peterborough, Ont. for players with physical, emotional or neurodevelopmental challenges. David and Carol have two adopted sons with disabilities and their eldest daughter, who has cerebral palsy, attended Holland Bloorview's nursery school years ago.

Check out a very special moment in hockey history, described below by the Fishers and coach Dale Lowe, on this Youtube video.

We are called the Kawartha Komets Special Needs Hockey program. We now have 35 players on two teams aged six to 41 years of age. We are part of an organization in Canada called Special Hockey International and we just returned home from a tournament in Boston. This event was attended by over 1,000 hockey players who were part of 68 teams from across Canada and the U.S.

As the undefeated Junior Komets entered their final game against the Steel City Icebergs of Pittsburgh, it was clear that our team was faster and more skilled than its opponents. Realizing this, our juniors quickly adapted their game, showing a tremendous amount of empathy for the Icebergs. Then, the most incredible, spontaneous act of sportsmanship happened in front of the Steel City net.

Brandon of the Kawartha Komets gave the puck to 6-year-old Nicole Mullins of the Icebergs. As you will see in the video, Nicole uses a custom-made walker created by her father, fully equipped with her hockey stick. Nicole was born with hip dysplasia. She has two dislocated hips, two short-bent femurs, and two club feet. But, special needs hockey has allowed her to be part of a team and achieve her goals.

After Brandon put the puck on Nicole's stick, the entire Komet line skated the length of the ice beside her, and watched her score a goal -- as fans from both sides cheered wildly. Afterwards, there were tears running down the cheeks of many of us who had witnessed this unprompted, unscripted act of sportsmanship. We have never been so proud to be part of a sports program.

Brandon, the young man who passed the puck to the little girl, has lived in group homes since age five and was always told he could never play hockey. He has a developmental delay and is a natural on the ice. He has never played hockey before and is incredibly intuitive and versatile.

We wanted to share this story with you to encourage parents of children with disablities. Some time ago you had an article on the BLOOM blog about a father who had a little boy who suffered a stroke in utero. The father expressed concern about the challenges his little guy would face in life with one side of his body paralyzed. Our junior goalie also has hemiplegia and plays goal without a goalie stick. He is very good because his father and his brothers, who are very athletic, have been taking shots on him since he was a toddler. He is the goalie in the video and his name is Colin. I would love for that father to see that video because I feel it would be very encouraging for him to see that sometimes children learn how to compensate for the challenges in life that they face.

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Repetitive strain

I've been diagnosed with repetitive strain in my hands and wrists, so I'm hoping to get speech-recognition software!

When I thought about the diagnosis -- repetitive strain -- I couldn't help thinking that the words 'felt' a lot like the experience of raising a child with disabilities. And the strain doesn't come just from the child's challenges, but from attitudes and physical barriers and cultural expectations about what matters.

I read two moving posts by parents this morning that I want to share.

A meandering rant about how more is less and less is more spoke to me. Jennifer Johannesen writes:

We like our disabled kids and their families to be working on stuff, to be improving, to have goals and accomplishments. To be all they can be! Don’t get me wrong – where we were 50 years ago is unthinkable. But why is it that families with disabled kids, and the kids themselves, are encouraged and rewarded for working harder than everyone else around them? The tasks are one thing – compound them with expectations, grief, lack of sleep, managing schedules, integrating team members, medical emergencies…

I drank the kool-aid for many years before finally, happily, giving it all up. Contrived, monitored, critiqued exercises gave way to joyful, authentic, meaningful experiences. Are you wondering, Is she really saying this? How could she not want these things for her son?!

Trust me, it’s not that I didn’t. I just decided that the cost was too high. For both of us.

And Elizabeth Aquino had this to say on Mother's Day: Tonglen

When I am near to despair over Sophie's seizures I practise tonglen by breathing in the sufferings of all the mothers I know who have children that seize and all the mothers I don't know who have children that seize. And then I breathe out. I breathe out love and compassion and health and happiness for all those mothers and all those children. I believe that embracing suffering, meeting it, accepting it and even embracing it might lead to understanding it, and that understanding connects me, deeply, to others.

Some other interesting links:

Life and the Cosmos, Word by Painstaking Word

A New York Times interview with Stephen Hawking:

"My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with," he says. "Don’t be disabled in spirit, as well as physically.

'Holy Nonsense:' Autistic artist's work intrigues (see image above).

Hope builds for treating intellectual disabilities

Condo blocks mom from installing wheelchair lift for disabled daughter

600,000 adults could have autism that has gone undiagnosed

New Disability History Museum website

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BLOOM one of best non-profit blogs

BLOOM is named one of the nine top non-profit blogs by Mark W. Schaefer, a well known blogger at {grow}, social media educator at Rutgers University and author of The Tao of Twitter.

Mark partnered with  Helen Brown, whose company teaches non-profits how to raise funds, to "examine more than 250 blogs from some of the largest and most important charities anywhere. We looked for the blogs that were engaging an audience, offering superb content, and aligning with the organization’s strategies."

This is what Mark says about BLOOM:  This blog brought tears to my eyes. If you’re a parent, it will probably have the same affect on you. Bloom is about parenting special needs kids. It isn’t fancy. In fact it’s just on Blogger. But what it lacks in sophistication it more than makes up in courage and heart. Writer Louise Kinross has something unique and personal going on here. She has nurtured an active, loyal community and with good reason … this is blogging at its best.

I am honoured that we are recognized here and thank you -- dear readers and writers -- for enabling us to grow a worldwide community of families and professionals who share the joys and challenges of parenting children with disabilities, talk frankly about difficult subjects and celebrate our children!

I hope this is a place where you feel heard and understood. Louise

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Happy Mother's Day!

Ben took this shot of D'Arcy and I at Cherry Beach! The other kids refused to get out of the car (there was an infestation of bugs). Happy M's Day! Louise

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'I'm not no one, I'm his mom'

I think the most engaging presentation at the patient- and family-centred care conference in St. Louis was by Jim Conway, a lecturer at the Harvard School of Public Health.

Jim has held senior positions at the Institute for Healthcare Improvement, the Dana-Farber Cancer Institute and Children's Hospital Boston.

Jim talked about an experience in the 1970s that woke him up to the essential role of parents in the care of hospitalized children.

He was an administrator in radiology at Children's Hospital Boston and explained to a mom that she couldn't accompany her child into the x-ray room. "I don't care who you are, I'm staying with my kid," she said. When he pointed out the sign that said "no-one" was allowed through the door, the mom said: "I'm not no one. I'm his mom."

During his 27 years at Children's Hospital he learned that if there was a discrepancy between a child's hospital health record and the mother's account, they were to go with what the mother said, because "we were only taking care of a piece of that child and she was taking care of the whole child."

Since that time, hospitals that are committed to partnering with families have stopped viewing parents as 'visitors' and allow 24/7 access.

Jim said family-centred care occurs when patients and families are treated as partners in care at every level: from their participation on key hospital decision-making bodies to their input at the bedside. "Patient- and family-centred care isn't an advisory council," he said. "That's just one piece."

Leaders play a critical role, he said, communicating in words and actions that the patient's safety and wellbeing guides all decision-making. The entire system is organized around the choices and needs of patients and families.

Jim shared research that shows that patient- and family-centred care reduces length of stay; lowers cost per case; reduces adverse events; improves employee retention; reduces operating costs; decreases malpractice claims; and increases market share.

A recent study in the International Journal of Health Care Quality showed that hospitalized patients who participated in their care cut adverse events in half: "Among the 788 patients with both patient survey and medical chart review data, there was an inverse relationship between participation and adverse events."

Some leading patient- and family-centred care practices include having patients and family members on boards, starting board and hospital meetings with family stories, and including patients and families in bedside rounds. "Nothing builds will more than meeting your patients," Jim said.

Patient- and family-advisory councils are now mandatory in Massachusets hospitals and 93 per cent of health leaders surveyed in 2010 said the patient experience was one of five top priorities (35 per cent said it was the top priority).

Jim concluded by saying that patients and families are the only people who know the ins and outs of your hospital and that if healthcare is on the table, patients and families have to be there too.

He shared a quote about the evolution of patient- and family-centred care from advocate Martha Hayward:

Do it to me.
Do it for me.
Do it with me.

The conference was run by the Institute for Patient- and Family-Centred Care. They have excellent materials on their website.

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What disabled children teach us

Read today's New York Times book review of Ian Brown's The Boy in The Moon. Ian is contributing a piece to the June issue of BLOOM.

What disabled children teach us

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BLOOM on NY Times blog!

Part of my recent blog "In each other's eyes, we are enough" was posted on the New York Times Motherlode parenting blog this afternoon.

Please visit and leave a comment to support their coverage of families of kids with disabilities!

A Perfect Baby

Do we all think our babies are perfect? Did nature build us that way? Louise Kinross thinks so. Ms. Kinross’s son Ben was born with a rare chromosomal deletion that makes him look different. In an essay on BLOOM, a Canadian magazine for parents of kids with disabilities, Ms. Kinross, communications manager for the Holland Bloorview Kids Rehabilitation Hospital in Toronto, wrote of a moment like the one I just had, staring at a photograph and being surprised by what was captured there. She writes...

Thanks! Louise

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Day 1 at family-centred care training

The conference in St. Louis started with breakfast at 7 a.m. this morning.

At a table for family advisors I met two parents who have been working for change for a long time: Nancy DiVenere, president of Parent to Parent USA and Juliette Schlucter, the former project consultant for FCC at the Children's Hospital of Philadelphia. Nancy told me her 35-year-old son had a stroke at birth, but was now a special-education teacher who was married. Juliette has three young adult children, two of whom have cystic fibrosis. One of the latter just ran a half-marathon and the other is an 18-year-old singer recording with producers in Beverley Hills, Calif. Check out her website about curing CF and empowering teens: Singing at the Top of My Lungs.

For a second I felt sad that my son didn't have the same kind of success story, but then I remembered this quote: "Comparison is the thief of joy."

The day was packed with workshops and smaller meetings and I will try to distil what I learned in the 30 minutes I have before meeting the group for dinner.

Family-centred care is about working "with" patients and families, rather than just doing "to" or "for" them.

Our practices need to reflect a continual dialogue with patients and families about what matters. We don't do things because it makes sense for the system, we've always done it this way, or it meets the needs of the doctors.

The key concepts of FCC are: respect and dignity; sharing information in a way that is useful to patients and families; participation in care and decision-making; and collaboration -- not just at the clinical level, but in changing and improving the health-care system.

There is no one formula for FCC because it's based on conversations between patients, families and professionals about what matters at a particular hospital or unit. It has to work in your unique environment and culture. It's not an "add on" but how the organization thinks and operates.

In FCC, the priorities and choices of families drive the delivery of health care. In contrast, we often find the system driving practices (caregivers design it so it works for them); a focus on 'treating' the patient, but not in the context of a family; or a family-focus, where interventions are done "to" and "for" them, but not "with" them.

When families are recognized as equal partners, you get the best health outcomes.

FCC needs to be the strategy and framework for how you improve safety, quality, experience of care and cost-efficiency. It needs to be explicitly stated and part of the strategic plan.

It's not a place or destination, but an ongoing journey.

We must constantly ask: "How does this look from a patient/family perspective?

For example, if we recognize families as partners, we take down signs that suggest otherwise: e.g. Stop! All patients must see nurse first. Please sit on bench until called by nurse.

Families are not visitors and are welcomed at all times. We do not have visiting hours.

One hospital found it saved $1 million a year in litigation fees after it embarked on an FCC culture that promoted partnership and transparency.

"Get started before you're ready." There is no end point, and the sooner you get started, the better.

Here's an example of some patient- and family-centred language used at one hospital in a brochure:

You're #1. We're in a partnership. Involve family in your care.

Too often we have one-way conversations with patients/families.

There were powerful parent speakers who shared positive and negative experiences. One mom described how devastated she and her husband were when they learned their 5-year-old son had to have surgery related to pneumonia after he had endured numerous serious heart surgeries when younger. "The nurse recognized how difficult it was for us and she said: 'Get in bed with your son and you can ride with him to the OR and stay with him till he's asleep.'"

A dad spoke about the difference it made when a doctor openly explained that his adult son was in a coma because he had been given morphine at five times the necessary concentration. "I was stunned that they would tell us. They apologized for the error, and very genuinely. The fact that they disclosed turned us from enemies into allies. We were brought together."

The same dad shared how crushing it was when a brain specialist came to tell them that their son had no brain activity: "He said: 'There's no way. He's as good as dead.' That was a little too blunt and gruelling to be able to absorb."

The same dad spoke about how another physician gave the same news, but in a compassionate way: "She was a parent and she tried to relate to us as parents and said: "The information is not what we all had hoped for."

Personal patient, family and professional stories are the building blocks of FCC. Tell honest stories, we heard, the good, the bad and the ugly.

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