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

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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.

Brilliant!

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."

Whoa!

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.

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Any Day Now

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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.

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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!

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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!

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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.

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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.

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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

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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!

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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.

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Shelby calls for a more open, accepting world

As our lead up to the International Day of Persons with Disabilities Dec. 3, we continue to ask how we can pull disability issues into the mainstream. Here we speak with Shelby Nurse, a Florida college student and advocate for people with disabilities who spoke yesterday with her dad Thomas at the Bloorview Research Institute Symposium. Shelby is on her way to becoming a child life specialist to ensure that hospitalized kids "remain kids." In a strange twist, her aunt is a dear friend of one of our BLOOM readers in Switzerland. It was an honour to meet Shelby and hear her ideas.

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Mommy blogging -- British style

The Mumsnet BlogFest on Saturday drew about 300 mommy bloggers to London to talk about how blogging is giving a voice to women's issues and "recalibrating the power balance in the world of comment," said Justine Roberts, co-founder of the website that runs an umbrella network for bloggers.

In Finding Your Voice, Zoe Williams, a Guardian columnist and author of two parenting books, said she writes as though she's talking to someone she knows. "If you're expected to write to people you wouldn't want to talk to, it's hard to write. I think of talking to someone I know."

Rachel Cusk, an award-winning author of novels and non-fiction books, called on bloggers to "make contact with their innate authority" in writing about their lives. "If I was wondering about what people were going to think, or trying to mediate the reading experience, I wouldn't be able to be truthful," she said. And later: "Don't try to be somebody else, be yourself."

Panelists noted that it can take years to develop your voice.

In a session about how to handle negative comments from trolls, psychologist Tanya Byron spoke about needing to be prepared for criticism and insults when you blog under your name. You have to have emotional resilience that acts as a form of armour, she said. If you don't, it's better to write anonymously. One panelist noted that you write because it's the truth, not so people like you.

That said the panelists -- a number of whom write for major newspapers -- recounted how challenging it was to cope with hate comments and death threats that went far beyond the bounds of legitimate criticism. Most noted that entering into a debate with these trolls was not constructive.

Louise France, former editor of The Times of London' Saturday supplement The Magazine, spoke about immersing yourself in a publication before considering how to hone a pitch for a story that truly stands out. For example, while she wouldn't be interested in a story from the parent of a child who is bullied, she might be interested in the story from a parent of a child who is the bully -- and who can provide insight from that angle.

There was discussion about the importance of traditional publishing versus online publishing and how both can complement each other.

Mumsnet has led two recent advocacy campaigns. One was called the Campaign for Better Miscarriage Care and involved bloggers breaking the silence on their own miscarriage stories. The other was called the We Believe You Rape Awareness Campaign -- which included debunking myths of rape that lead victims to fear they won't be believed if they report the crime. I'm interested in finding out more about these campaigns and how their success might inform our efforts to raise acceptance of kids with disabilities.

When I asked about how we can bring child disability issues into the mainstream, Blogging Can Change The World panelists felt we had to be very strategic and specific in what we were asking -- versus a general request to increase visibility of kids with disabilities and their families. One suggestion was to align child disability issues with mainstream parenting issues.

The day ended with a talk by Caitlin Moran, author of How To Be A Woman and a columnist with the Times."Writing is about angles" she said, and finding takes on subjects that haven't been written about before. Ask yourself "Why am I writing this?" as a prompt.

She said writers often feel forced to have an opinion or come to a conclusion about a topic. Instead, she suggested simply describing the topic, or writing about your confusion over it. "Let information pass through you," she said.

Sophie Walker is a parent I met who blogs about raising her daughter Grace, who has Asperger syndrome, and her decision to train for the London Marathon. Sophie did this to raise awareness of autism and improve her health so that she could better support her daughter. Her blog grew into a book -- called Grace Under Pressure -- which was released last month.

Another mom I met is Hannah Postgate, who is about to launch a business bringing together products that support families of children with special needs. Her daughter Rosy has an undiagnosed genetic condition. Rosy and Bo should be off the ground in a few weeks. She plans to give tips on how to adapt products to meet specific special needs.

Check out the Mumsnet list of special-needs bloggers. Tomorrow, the forum is hosting a live chat with Edward Timpson, Minister of State for Children and Families, to discuss reforms in special education in Britain.

This is something I'd like to see us do at BLOOM, if we can figure out the technical side.

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Emily likes 'all the typical teenager stuff'

Meet Emily Chan, our role model in the next BLOOM magazine. Emily, 16, has a rare neuromuscular condition that creates general weakness and breathing problems. She uses a ventilator and a power wheelchair. Here's a sneak peek at part of our interview.

At six months, when Emily was in an acute-care hospital, her parents were asked if they wanted to stop her medical treatment.

“They told me I have a choice,” says mother Peggy Chan. “That I don’t need to keep her. The doctor said they had families who choose to give up their baby because they won’t have any quality of life. I was very mad and I said: ‘Are you crazy? As a mom, you’re not even giving me a chance to try to raise her?’ If I had given her up I would have regretted that decision for the rest of my life.”

Emily lived for six years at Holland Bloorview before her medical condition improved and she was able to move home with her parents. She now uses her ventilator mostly at night. Emily says she likes “all the typical teenager stuff” and wants to go to university to become a child psychologist.

BLOOM: How do you define quality of life?

Emily Chan: It’s living each day to the fullest, being happy. I think everyone deserves to have that chance. The purpose of life is to be happy, to be happy with yourself and what you’ve done and hopefully make a difference somewhere.

BLOOM: What is your life like now?

Emily Chan: I have a great life. I have everything – family, friends, cute guys to look at. Everything is going great in my life. I have pretty good marks at school – an 82 per cent average. I like Facebook and I’m really into (Korean)-pop. I play the guitar and piano and really love doing that. Whenever there’s stress in my life I pick up my guitar and play my worries away. It’s a great stress reliever. I like talking, hanging around, going shopping, going to see movies – all the typical teenager stuff. I love Harry Potter.

BLOOM: What about reading. Do you like those teen romances?

Emily Chan: No, that’s so cliché. I like the deeper, darker stuff. I’m just finishing The Hunger Games.

BLOOM: What are your dreams for the future?

Emily Chan: I want to become a child psychologist. I also want to have a family and drive a Ferrari – don’t we all? But right now I just want to get to university. Living in a hospital for the first six years of my life has given me a broader perspective of things. I got to interact with adults more than the average kid, which made me mature faster. It’s like my brain is 20 when I’m 16. I’ve known a lot of people who had to go through really difficult situations and I’m less quick to judge. I know that even though a person may appear a certain way it’s because of something that’s happened to them in the past. You have to see the person, not just the person they appear to be or how they act. I understand the feeling of being isolated, which will help me understand someone who feels alone for different reasons.

BLOOM: How do you view disability?

Emily Chan: It’s just a part of you. God made you this way for a reason and you have to learn to love yourself. You have to realize that a disability isn’t going to hold you back. My mom always told me was that it doesn’t matter how you do something as long as you get it done. If you have a wheelchair it just becomes another part of you. And sometimes you can use it to your advantage – like running over people you hate!

BLOOM: What advice would you give parents?

Emily Chan: Don’t give up on your kid – no matter how grim the situation might seem. Always stay positive. You have to put in the time and the effort. Kids need their parents to give them love and support. Nurses and doctors will have sympathy, but it’s not the same as a mother’s hug that gives you that warm feeling. Every kid needs that. What got me out of Holland Bloorview was the constant pushing and love and support of my parents. They got me the treatment and the help I needed to thrive. My mom had a drive to bring out my potential and I think every parent should have that. In my opinion, many parents don’t have that devotion anymore.

BLOOM: Is your condition usually progressive?

Emily Chan: I’ve done some research about it and read stuff online about boys who have the diagnosis. It’s rare for a girl to have it. For the boys it’s a progressive condition and it keeps getting worse and worse. I’m really healthy now and I don’t have issues with pain. I think part of it is living at home and not being in a depressing hospital. I have more room to grow and expand on new things and explore what’s out there.

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Mixed messages

Sometimes my brain feels like it's going to burst from trying to make sense of the mixed messages I read every day about disability.

Today I was working on the next science roundup for the BLOOM magazine. Here are a few headlines:

On the one hand:

A child's disability benefits family and society, parents say

On the other hand:

Risk of violence almost quadrupled for disabled children, report finds (i.e. my child is almost four times more likely to be the victim of violence than a typical child, based on data from 17 studies in five high-income countries)

And:

Isolation strongest predictor of depression in youth with special needs

While:

Study questions value of inclusion for youth with autism

No wonder it's hard for the general public to understand what it means to raise a child with disability or to live with disability.

In other media news, an Australian government inquiry is looking into the practice of sterilizing disabled people, which is legal in that country. A briefing paper by Human Rights Watch on forced sterilization of girls and women with disabilities gives a picture of the practice internationally.

And while pondering this, we read great reviews of the film The Sessions, about the true story of a man who relied on an iron lung to breathe and hired a sex surrogate to help him lose his virginity (let us know your thoughts if you've seen it -- and an important question: are there male sex surrogates for women with disabilities, or surrogates for gays with disabilities? We know men with disabilities are more likely to have romantic partners and get married than disabled women).  

In other news: An Israeli entrepreneur has created a cardboard wheelchair made out of less than $9 worth of recycled cardboard, plastic bottles and recycled tires. This could make mobility affordable to disabled people in developing countries.  

And a BLOOM reader told me about an incredible story of how Westjet employees bent over backwards to help a family whose daughter with Down syndrome refused to board a connecting flight due to anxiety. This included putting the family up for a night in a hotel, providing food vouchers, giving the girl a private tour of the plane and allowing her to try out the intercom and choose her own seat.

Sometimes the extremes of compassion and oppression evoked by disability are simply too much for my poor little brain (and heart) to fathom. Louise

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Great resources for sex education

Woodbine House has produced two excellent guides to puberty and sexuality: The Boys' Guide to Growing Up and The Girls' Guide to Growing Up. The books are written at a Grade 3 level with illustrations and the information is clear and positive.

They're targeted to youth with intellectual disabilities but I think are great "Coles Notes" versions for any pre-teen or teen -- cutting through jargon and delivering the facts kids need to know.

The boys' guide includes everything from what to do about zits and body odour to crushes, masturbation, keeping yourself safe and what's private and what's public.

The books are written by a sex educator who has a daughter with Down syndrome.

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College student speaks at our research symposium

There are a few spots left at the Bloorview Research Institute Symposium here at Holland Bloorview on Nov. 13. The keynote is Shelby Nurse, a Florida college student with cerebral palsy. See her video! Register online for the symposium at http://www.regonline.com/builder/site/Default.aspx?EventID=1136488 by Nov. 7.

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Seeding ideas at OACRS

I was at the annual conference of the Ontario Association of Children's Rehabilitation Services today.

It's always a treat to see parents from across the province who I only get a chance to catch up with once a year. It's amazing to be around people who understand what the "parenting a different kid" part of my life is like. I feel heard and understood.

Just a few quick observations.

My friend Amy Baskin, co-author of More Than A Mom, gave a great talk on taking care of yourself. She had us do the following quiz (questions were answered with "always, often, sometimes, rarely or never").

I'll give you my answers:

I get regular exercise (at least 30 minutes most days) -- sometimes

I get enough sleep (seven to eight hours) -- always

I eat a variety of nutritious foods -- often

I make medical appointments to look after MY OWN health (physical, eye checkup, dental) -- rarely to never

I see my friends on a regular basis -- sometimes to rarely

Amy referenced Anne Snowdon's research on friendships for teens and young adults with disabilities and how increased isolation as children grow is mirrored in their families.

"It's not just the child that has no or few peers," Anne said in a BLOOM interview. "It has a ripple effect on families. The families report high levels of stress over years, the caregiving demands are high, and it's hard to engage in their communities. I question whether after a certain length of time parents don’t just give up or don't have time or energy to maintain friendships."

Amy noted that social connections are most predictive of parent health over the long term -- over good food, exercise and sleep.

Yet families like ours are more likely to be isolated.

She encouraged parents to look at their lives as a water pitcher that needs to be kept filled in order to give our kids the best care.

Ways to keep replenished include eating healthy food (especially veggies and fish); exercising regularly; getting enough sleep; calling a friend; getting information on support circles; planning a night out; joining a club; attending a meeting; doing something that brings you joy; taking a soother (everyday activity that's calming like doing a crossword puzzle, knitting, reading, mindful breathing, sipping tea); writing in a gratitude journal; or delegating tasks to others in the family.

"Baby steps" is what Amy encourages.

"When worry and guilt are overwhelming it's a clear signal that you need to take a break, phone a friend or treat yourself," she says.

Alison Morse gave an excellent overview of IPRCs and IEPs and we learned she is now working with Easter Seals as a resource to Ontario parents on questions about special education (contact her at amorse@easterseals.org!). I pulled up the Easter Seals website tonight and noticed it has some excellent Ontario education resources listed.

The keynote was by journalist Ian Brown, author of The Boy in the Moon.

He talked about how we use futuristic science to save children with complex needs.

But then "old-fashioned moral laws kick in" in terms of who's responsible for their 24/7 care: "You had this kid, you better take care of him. Our social structure hasn't caught up to science."

I thought that was a telling comment on how our culture invests in high-tech intervention (with the goal of cure/normalcy), but not the complexity of long-term support that comes with chronic and multiple conditions.

Ian also said our lives were "too private a struggle," that we didn't have enough of a political voice, and compared the oppression of disabled people to that historically of women and blacks.

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Just who is the expert on your child?

I don't expect to find a deep understanding of the complexity of disability in the mainstream. That's why I was taken aback by this piece in The New York Times Magazine: How do you raise a prodigy?

In it, Andrew Solomon draws parallels between child prodigies and children with disabilities -- in terms of how they challenge their parents' preconceived notions of 'normal' and what makes a good life.

And he cautions that common assumptions about what life is like for either group are simplistic and misleading. 

"Having spent 10 years researching a book about children whose experiences differ radically from those of their parents and the world around them, I found that stigmatized differences — having Down syndrome, autism or deafness; being a dwarf or being transgender — are often clouds with silver linings," Solomon writes. "Families grappling with these apparent problems may find profound meaning, even beauty, in them.

"Prodigiousness, conversely, looks from a distance like silver, but it comes with banks of clouds; genius can be as bewildering and hazardous as a disability."

Both of these experiences centre on difference. What may be natural and normal for a prodigy -- or for a child with disability who thinks or moves or interprets the world differently -- is often at odds with the parents' notion of 'normal.'

How much do you try to pull your child in to the world that is normal to you -- and how much do you accept the 'new normal' that your child presents?

This got me thinking about Melissa's blog yesterday, where she wrote about how her daughter Isobel's disabilities are a natural part of her: to Isobel, her disabilities are normal.

I'm always agonizing over my wish to find Ben a better way to communicate. When I read Melissa's piece, it hit me that perhaps Ben's way of being in the world is normal to him (not that he isn't frustrated by it) and that the problem is with my own expectations (i.e. my assumption that my world is 'normal' therefore he must be suffering if he's not in my world).

Melissa noted that her daughter, even as a toddler, is the expert on her disabilities, not her mother.

That's an interesting viewpoint, and I bet one that many parents, if we're honest, haven't adopted. I think most of us feel very much that we are the expert on our child -- even if we haven't experienced our child's disabilities firsthand.

Melissa's comment made me pause. It made me let go of judging the different worlds in which Ben and I live and, instead, motivated me to turn to him for clarity on his world and on what matters to him. And to not be so quick to assume that I know what's best, or that my way of being in the world is somehow richer.

Humbling.

Solomon is a lecturer in psychiatry at Cornell Medical School with a new book -- Far From The Tree -- that comes out later this month.

According to the book description: "Solomon’s startling proposition is that diversity is what unites us all. He writes about families coping with deafness, dwarfism, Down syndrome, autism, schizophrenia, multiple severe disabilities, with children who are prodigies, who are conceived in rape, who become criminals, who are transgender. While each of these characteristics is potentially isolating, the experience of difference within families is universal, as are the triumphs of love Solomon documents in every chapter...

"Many families grow closer through caring for a challenging child; most discover supportive communities of others similarly affected; some are inspired to become advocates and activists, celebrating the very conditions they once feared."

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Disabled child teaches deaf mom a new normal

I'm going to the Mumsnet Blogfest next weekend in London, UK (let me know if you'll be there!). I read about the political influence Mumsnet was having in Britain, and how it touched on issues facing families of children with special needs. Mumsnet has a fantastic list of bloggers who are parents of children with disabilities. Melissa Mostyn-Thomas (above with Isobel) is one of them. You can follow her at The Mostyn-Thomas Journal. Here she talks about how her experience as a deaf woman prepared her – or didn't – for the birth of Isobel, who has cerebral palsy. Thanks Melissa!

A disabled child teaches her deaf mom a new normal
By Melissa Mostyn-Thomas

Disability has much to teach us about humanity – much more than science or religion ever could, because of the way it tests our character. As the disability rights campaigner, model and athlete Aimee Mullins points out, Darwin has been misquoted. He actually said it is not the fittest, or the strongest, or the cleverest – but the most adaptable – that survives.

Certainly, that is what a little girl called Isobel – my first child – has taught me, and she's only three-and-a-half.

When I was expecting Isobel, I told my husband Miles that I would love our baby, no matter what. We agreed that if she had a disability she would grow up unashamed of it. We would create a secure, loving family environment that taught her the value of being confident and unafraid to assert herself.

We both thought like that because we had ourselves grown up deaf. We had a positive attitude towards disability not because we felt we had to – but because it was all we knew. In our world, everyone had their own sense of normality, and ours was living as deaf people.

Miles and I were artists collaborating with disability artists in grant-funded projects that explored how we could use our own diversity to influence creative solutions in architectural and interior design. But although we valued the insights artists with disabilities gave us, we saw ourselves as a world apart.

We labelled ourselves not as disabled, but as deaf – inextricably linked to a community whose social and cultural values intersected with a shared language of our own: British Sign Language. Few other disability cultures - if they existed at all - had this distinction.

I see now that I was more prepared to bring up a deaf baby than a disabled one. I just didn't realize my thinking at the time.

With a deaf baby, we’d instantly have contacts who could work with us to ensure all her needs were met. We’d know who to talk to about ongoing issues, and explore our options with web resources we were already familiar with. Other types of impairment – and the adaptations they required – were too diverse and numerous for me to imagine.

I cannot lie; the first 12 months of Isobel’s life were awful. At 12 hours old, she had her first seizure – which set the scene for months of anxiety, fear, despair and sadness that endured far beyond her first hospital stay as a newborn.

That seizure was the first sign that she'd had a brain injury, the consequences of which would remain unknown for that first year. From six months on, Isobel was in and out of hospital every week with up to 60 seizures a day.

Life went blank, like the walls of the children’s ward we often found ourselves in. I’d listlessly watch the sun’s reflections sweep the floor while visiting doctors blended into one another and the day wore on. Every hospital emergency was the same, because the reason was always the same.

Meanwhile at home, Isobel’s developmental delays encroached more and more on my mind. I can never forget the way her four-month-old arms shot out like a Dalek’s when she was playing in her bouncer. She’d take forever, too, to upgrade to sitting. I was convinced there was more to this than the effects of an extended hospital stay.

Scarier than the notion that my little girl could have a disability was the uncertainty of what it was. I started talking about Isobel having epilepsy, even though I knew that was a symptom of her brain injury, rather than the outcome. I desperately needed a label so I could move on, instead of dwelling on what on earth was happening in her head.

But when Isobel was finally diagnosed with cerebral palsy at one year old, I found myself dealing with extraordinarily complex psychologies. Yes, I had a label; but it wasn’t what I expected.

I didn't expect my reaction to the diagnosis either. As soon as the tears erupted, I raged against my grief for Isobel. How could I possibly mourn a living being, when I knew many high-achieving and positive role models who had cerebral palsy?

Essentially, I had to understand the reality of parenting a child with a disability – the initial shock, grief, anger, depression, the overwhelming sense of injustice – before I could move on. I had to go with what my heart was begging me to do, even though in my head, I couldn’t see the point. Even so, it took a year for me to finally release my grief.

Knowing lots of people with cerebral palsy didn’t mean I knew how to best support Isobel. I had to go on a crash course, reading as much as I could on the various types of CP, and talking to people constantly. The Internet became my best friend. I’m convinced that I was ultimately able to meet my parenting challenges head-on because I was already comfortable with the presence of disability in my life. In that respect, I was a little further along my journey than parents with no prior experience of disability.

Having said that, Isobel’s epilepsy did scare me, not only because of the risks it presented to her cognition but also her life. If she had continued to have 60 fits a day the consequences would have been devastating.

Thankfully, the seizures evaporated – just before my hope did – when Isobel was 15 months old. They have not reappeared since, although she continues to take anticonvulsants regularly – and at this stage, we are still not 100 per cent sure they will stay away for good.

Of course, those seizures are part of an enormous maze that we are only now – at age three-and-a-half – beginning to navigate with confidence. For a while the older Isobel got, the more twists and turns her development took, and each one forced us into new territory.

First she was hemiplegic; then in March last year an MRI scan revealed her to be quadriplegic, with a question mark still hanging over her cognitive abilities. Would she speak? Would she sign? Would she sit, stand or walk? More importantly – would she ever stand up to the oppressors she was sure to meet in her lifetime?

Sometimes, just when we thought the answers would come, they never did. For example, Isobel would take 48 steps forward one day, and give way the next. One day she could pull herself up to standing, and the next she couldn’t. And so the cycle of hope, despondency, and grim acceptance went on.

Today that cycle continues with far less intensity than before. Instead of wallowing in disappointment, we shrug off new setbacks for another day. When progress does surge, so do our hopes – albeit tempered with caution.

Essentially, my perspective of disability has changed. It's richer. Although I had accepted people with disabilities for a very long time, I didn't really talk to them about their disabilities. I didn't have an incentive to, unless we were collaborating on a project that explored diversity and inclusion. They were just other people in my life – people that I enjoyed getting to know.

Isobel has given me a crash course in her disabilities. There was a lot I didn't know about CP and epilepsy before she came along. I’d never even heard of global developmental delay or microcephaly, both of which she also has.

By learning about her disabilities, and the work she has to put in to adapt to them before she can start meeting developmental milestones – albeit at her own, very individual, pace – I've come to appreciate much more the invaluable contribution disability makes to humanity.

There’s still a lot I don't know about disability. But I think that's a good thing. I don't assume as much as I used to, so I can ask questions with a more open mind.

For me to say that I'm more knowledgeable about CP or epilepsy or even global developmental delay than my daughter would be preposterous. Isobel is the expert of her disabilities, not me. I am still only learning about it, whereas she learnt to live with it from day one. Just as being deaf is our normality, having CP is hers.

It's this that enables Isobel to adapt to her environment with the cool acquiescence of a Darwinian animal – and that’s why she has taught me so much more about what it means to be human than I could ever teach myself.

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