First armless pilot: 'My feet were more efficient and faster'

BBC World Service has this fabulous interview with Jessica Cox, a 33-year-old Arizona woman who is the world's first licensed pilot with no arms. 

She talks about "feeling lighter, freer and more empowered than I'd ever felt in my whole life" the first day of Grade 8, when she left the prosthetic arms she'd worn for 11 years at home. "It was my statement of independence and my statement of authenticity. My feet were more efficient and faster."

Jessica said her prosthetics were "hot, heavy and cumbersome, and weighed close to 10 lbs." In addition to flying, Jessica also drives, plays the piano and has her black belt in Tae Kwon Do. "I use my feet the way other people use their hands."

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How to work with your child's teacher and school

By Alison Morse

Parents of children with special-education needs face extra challenges in helping their kids succeed at school.

Sometimes we assume that a teacher will automatically know how to teach our child. But every child is different. It’s important for the school to focus on your child’s individual needs—not just what they assume based on a label.

These strategies will help you support your child by taking an organized approach to your relationship with the teacher and school.

Know your child

-Get educated on your child’s strengths and needs so you can speak about them

-Understand your child’s diagnosis and how it may impact learning

-Collects articles and information that may help school staff understand your child.

Understand the school system

-Learn about special education services and programs—and your role—by attending information workshops at your child’s school, the school board or community agencies. The school board’s website is another good source of information.

Develop and maintain a relationship with the teacher

The classroom teacher is a very important person in your child’s life. Maintaining an open and honest relationship means that you can quickly raise concerns and work together to solve them. The following tips are intended to help you with this relationship with the school.

Communicate effectively

Talking about our children is emotional and sometimes we focus on what we want to say without really listening to the other person. Remember to:

-Pay attention and listen to the speaker

-Ask questions about words and procedures you don’t understand

-Repeat information to make sure you understood what was said correctly

-Speak clearly and present facts in a logical order

-Ask for a break or to reschedule the meeting if you become emotional.

Learn to problem-solve and negotiate

The school doesn’t have unlimited resources and there’s usually more than one way to solve a problem. As a parent, you want to show that you will work with the teacher to find a mutually beneficial solution. Try to:

-Brainstorm new ideas without judgment

-Evaluate each idea and identify consequences

-Select best solutions and plan details for how they will be implemented

-Evaluate results and decide whether to continue or to try another option

-Recognize the resource limitations faced by school staff

-Look for areas of agreement and compromise.

Share successes

A healthy relationship with the teacher means that you don’t just approach when there's a problem. You need to celebrate successes and let the teacher know that you recognize their skills and expertise. To do this you can:

-Share good news about your child with school staff

-Thank the teacher for their efforts and be specific in your comments

-Attend school social events and volunteer to help in the classroom or on trips

-Let the school principal and others know when things go well in the classroom.

Preparation and follow-up

Working with the teacher and the school will include meetings, phone calls and e-mails. It’s important to organize the information you have about your child and prepare for meetings. Here are some tips:

Prepare for case conferences and meetings

-Make sure you understand the purpose of the meeting

-Find out who will be attending the meeting and why they will be there

-Take someone with you to help you by taking notes or speaking on your behalf

-Be prepared to share information about your child

Keep records and notes

-Make notes of key discussions from phone calls and at meetings

-Record the names and positions of people involved

-Ask for copies of meeting minutes and other documents

-Keep your notes and records organized in a binder or filing system

Follow-up on phone calls and meetings

-Before the end of the call or meeting, reconfirm next steps, actions and future meetings

-Send a thank-you note with a summary of your expectations

-Complete all the tasks that were identified for your action (e.g. make appointments, provide information, etc.)

-Monitor changes and track progress for future meetings.

Find help in the community

Advocating for your child can feel overwhelming. It's important to remember that you're not alone and many other parents have been through similar situations. As a parent, your knowledge and skills will grow over time. In the meantime:

-Seek out information about your child’s needs and strategies that may help

-Attend workshops or meetings that will provide information or support

-Contact community agencies that provide support to families

-Connect with other families of a child with similar issues.

Alison Morse is a parent of a young adult with cerebral palsy and developmental disability. Alison has been a volunteer special education Advisory Committee (SEAC) member representing Easter Seals since 1992. As the provincial coordinator for special education at Easter Seals Ontario, Alison manages SEAC recruitment, training and support and develops information resources for families. Recently Alison started the blog Easter Seals Kids at School. It already has 50 articles about what parents can do to support students. This post Advocacy: How to deal with concerns at school outlines the chain of command to follow when you're experiencing problems. The tips above were collected from parents and professionals across Ontario. 

Photo above by Jodi Ravn. Holland Bloorview staff will remember the Ravn family, which includes Eric, 11, Alex, 8, and Nicholas, 5. You may remember this BLOOM story written by the boys' father Lloyd.

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Why are we so hung up on walking?

By Louise Kinross

Why is a skateboard cool, but a walker not so much?

Why is walking at the top of those child development charts, and crawling at the bottom? And why is the option of wheeling in a chair entirely absent?

Holland Bloorview scientist Barbara Gibson just gave a fascinating talk on how we may limit the way children move because of the social value we place on walking. Her book Rehabilitation: A Post-critical Approach was just released.

“Rehab and other health professions focus on ‘normal,’” Barbara said. “They think about normal function, normal bodies, and, in children’s rehabilitation, normal development. Our interventions encourage uniformity in body structure and how bodies move,” she said, which may unintentionally reinforce cultural values about walking as the preferred way of getting around.

Barbara talked about a number of factors that influence attitudes about mobility.

Walking is seen as an endpoint in child development. Crawling is tolerated in infants, but is disparaged in the older child who “has not grown up.” Even human evolution depicts our ascension from crawling on the ground to being upright. Young children are taught that there are specific times and places where they must be still or move in certain ways. Literature and other forms of media and culture associate a person’s moral character with standing upright. Someone who is stooped is often viewed as “suspicious, dishonest and unreliable,” Barbara noted.

Children internalize these social meanings about the 'right' and 'wrong' way to move. As a result, kids who can’t get around in typical ways are often teased or isolated. 

Disabled kids who prefer to crawl because it's more efficient may feel they need to walk as a way of fitting in. “The child who crawls has to navigate the social rules by which normalcy is judged,” Barbara said.

Being able to walk conveys “membership with other walkers,” Barbara said. “There are issues of identity.” For example, “I’m a walker” a young girl with a disability told Barbara.

Barbara suggested that it would be helpful for rehab professionals to view “difference as the default human condition.” Then we could drop our culture’s baggage about movement and creatively assess all options when a child has a disability.

Should we broaden advocacy for different ways of moving in the world? For example, “Should public spaces be designed for crawlers?” Barbara asked.

Barbara suggested we need to consider whether rehab reinforces cultural norms about movement or transforms them.

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Tommy Hilfiger launches adapted children's clothing

By Louise Kinross

Great news for parents.

Runway of Dreams has partnered with Tommy Hilfiger to produce the first mainstream line of clothing with adaptations for youth with disabilities built in.

The clothing, for children up to size 20, can be ordered online and includes a pair of US$39.50 boy's jeans with these alterations: adjustable waistband; magnet system and velcro on fly, instead of zipper for easy open and close; modified fly that looks like typical fly; and loop button system inside hem to adjust length.

A boy's button-down shirt is opened and closed with concealed magnets in the front and on the cuffs that remove the need for fiddly buttoning.

Girls' t-shirts and dresses have a centre-opening at the back that uses magnets for easy access.

Go to Runway of Dreams to watch their video about how the line came to be.

Photo by Richard Cormin

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Coping while captured (in hospital!)

Jadine Baldwin is a 15-year-old student who's been hospitalized at Holland Bloorview since she had surgery to straighten her spine back in November.  

Jadine has written this acrostic poem to share tips with other youth who may be scheduled to come to Holland Bloorview for rehab. An acrostic poem uses the letters in a word to begin each line of the poem. Enjoy!   

Coping while captured (in hospital!)

By Jadine Baldwin

Come into the hospital with a smile.

Open up to other people who are having the same difficulties as you are.

Practise breathing when you are in pain.

Introduce yourself to one new person everyday.

Nothing is better than home-cooked meals (get parents to bring in some).

Get involved in recreation activities!

Watch your favourite movies to pass time.

Have friends and family visit you.

Invest in lots and lots of your favourite snacks.

Listen to some good music.

Encouragement is key.

Catch up on local news.

Advocate for yourself and others.

Physio has to happen, whether you like it or not.

Take pictures and make memories.

Use your time here. Even if temporary… make the best of it.

Read books.

Explore your hidden talents.

Dream BIG!

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Hospitalized: A poem by Jadine Baldwin

Jadine Baldwin (with her mother) is a 15-year-old student who's been hospitalized at Holland Bloorview since she had surgery to straighten her spine way back in November. "I'm not going to sugarcoat it," she says. "This has been the most painful surgery I've ever had." 

Jadine says she uses writing as an outlet for her emotions. "I write when I'm happy, sad, angry or hungry."

It's also a great distraction from pain, she says. "When you're in pain you want to find stuff that makes you feel better, even if just temporarily. Writing makes me forget that I have pain for the moment." 

Jadine's favourite writer is young adult author John Green, who wrote the bestseller The Fault in Our Stars. "He's astonishing," she says. "He doesn't mess around." This is Jadine's poem about what it feels like to be a teenager going through rehab in hospital. Stay tuned for more of Jadine's work.

Hospitalized: A poem by Jadine Baldwin

Being in the hospital as a teen one minute feels like forever

Being in the hospital as a teen pain demands to be felt

Being in the hospital as a teen you understand that life is too short to be unhappy

Being in the hospital as a teen means that physio is not a choice

Being in the hospital as a teen opens your eyes to who your real friends and family are

Being in the hospital as a teen makes you appreciate the little things in life

Being in the hospital as a teen introduces you to so many people who want to see you succeed

Being in the hospital as a teens helps you make memories and friends to last a lifetime

Being in the hospital as a teen where food is the only flaw is not too bad

Holland Bloorview is the place for healing (in any shape or form) at its best.

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Stevie Wonder calls for inclusion amid reminders of dark reality

By Louise Kinross

This is a grim piece today. It's a reminder of the ugly, sometimes violent, discrimination that exists in our communities against those with disabilities.

Social media lit up a few days ago when Stevie Wonder demanded inclusion at the Grammys. "We need to make every single thing accessible to every person with a disability," he said.  

Everyone got behind him, celebrities, media pundits. Meanwhile, these were the dark realities flashing across my screen.

First I read this story about a 13-year-old Winnipeg boy with an intellectual disability who was attacked by men and thrown in a dumpster where he languished for hours in the freezing cold before someone heard his cries. "You don't jump a kid in daylight and nobody see it," his father told The Toronto Star. "My son can't identify them. But somebody can...Be my son's voice, somebody."

Indeed. Can you imagine what it took for these parents to contact the media after having their son thrown in the garbage? Who will speak for this boy?

Then there's the 26-year-old man with autism and developmental disability who's been living in an Ontario hospital for two years at a cost of $1,250 a day. He isn't able to care for himself and there's no housing for him in the community. He had to be put under to have 26 teeth removed, many of them in painful abscesses that caused a fever. No one noticed that his teeth had rotted. This man is one of three with autism living in the psychiatric unit of the hospital.

South of us students with behaviour and emotional problems at a Boston school were restrained "more than 200 times last year, the result of a 'systemic failure' by staff and senior administrators that led to repeated, improper uses of excessive force, according to a state report," reports The Boston Globe. The students, in Grades 4 to 8, were "slapped, tackled and yanked out of chairs for refusing to stand." More than 40 times students were restrained face down on the ground. Big surprise? Staff often didn't inform parents.

And here's a story about an acclaimed mathematics professor who moved his family from Belgium to New Zealand in 2011 because he heard it was a great place to raise a child with autism. After winning a prestigious New Zealand research award, he's returning to Belgium because his 13-year-old son with autism has been denied residency. He doesn't have "an acceptable standard of health" the family was told.

The stories didn't stop there. As I scrolled through Facebook and Twitter they kept popping up. But I didn't have the heart to include anymore.

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