Archive | December, 2011

Happy New Year!

Happy New Year!

It’s December 31st, and tomorrow it will be 2012.

I started this blog almost 6 months ago. I am really enjoying being a disabilities blogger, and developing relationships with other bloggers who are passionate about disability issues. I plan to keep writing for as long as people will keep reading!

Asking a Favour from My Readers

As we go into 2012, I have some questions for my readers:

  1. Is reading this blog useful for you? How so?
  2. What would you change about this blog?
  3. Are you experiencing any technical problems with the blog?
  4. Are there any specific disability-related issues that you’d like to see
    covered in the blog?

Please leave your answers as a comment to this post, or send me an email at girlwiththecane@gmail.com if you prefer to answer privately.  Answering the questions helps me to plan the blog’s future direction and to address technical problems, so thank you for taking the time to answer!

Have fun this New Year’s Eve and be safe!  Happy New Year!

New Year

 

 

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Federal judge rules that NYC needs more accessible taxis

Michael Bloomberg’s concerns that accessible taxis are uncomfortable, potentially unsafe, tooaccessible taxi expensive to have on the road, and not really what people with disabilities want will have to be shelved. Federal judge George Daniels has ruled that only having 230 accessible taxis in the fleet of 13 000 yellow taxis in New York City is in violation of the Americans with Disabilities Act. The Taxi and Limousine Commission can only issue new medallions to accessible taxis until it provides a plan for improving access for people who use wheelchairs.

http://www.unitedspinal.org/2011/12/27/judge-rules-nyc-taxis-violate-americans-with-disabilties-act/

Why Accessible Taxis?

From the linked article: “As wheelchair users, it is often assumed that we want to stay home, or that we’re satisfied with the status quo. Nothing could be farther from the truth. We are just like any other American. We want to live, work, play and worship in our communities. These things, which are so often taken for granted, are impossible without on-demand, low-cost transportation, like taxis. We’re proud to be on the leading edge of this issue and look forward to the opportunities that come with it for people with disabilities.” – Paul J. Tobin, President and CEO of United Spinal

News That Makes My Day

I’ve been following developments in this story since I started this blog. I’ve been really disgusted by the dismissive way in which Michael Bloomberg has responded to concerns about lack of accessible taxis, and at his rationale for not considering adding more accessible taxis to New York City’s fleet. He’s demonstrated, it seems to me, a real ignorance of the transportation challenges that citizens in New York (and tourists) who use wheelchairs face on a daily basis, and a disrespect in general toward people with disabilities.

As I’ve said elsewhere in this blog…London’s full fleet of taxis is accessible. There’s no reason why New York City can’t do it.

I’m looking forward to seeing more accessible taxis on my next visit to New York City

More posts on this issue:

http://www.girlwiththecane.com/accessible_cabs/

http://www.girlwiththecane.com/michael-bloomberg-accessible-cabs/

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Lost a Limb…Regrow a Limb?

Hello again!  I hope that everyone had a great Christmas and that you’re all looking forward to New Year’s!lost a limb

I spent Christmas with my family, at my sister’s house. I got lots of opportunities to play with my little niece and work on my techniques for making her smile and laugh, holding her the way she likes (so that she can see everyone), and picking her up. I’m very aware that there are many childcare that skills I that I haven’t yet mastered, but with each visit with her I feel more and more confident about my ability to look after her using one arm.

I think that’s why I’ve been a bit grumpy about a commercial that I’ve been seeing on television recently. It’s one of those commercials where people with various ailments and their doctors talk about how “We *will* find a cure for ____” (cancer, diabetes, etc.), and of course I know that these research efforts are very important. Besides my AVM (which is not supposed to be hereditary, but I’ve stories that suggest that they do seem to run in families), women on my mother’s side tend to die young from cancer, and there’s stroke and diabetes on my father’s side…it’s not exactly comforting.

Lost a Limb? We Can Cure You!

The part of the commercial that annoys me is when the young doctor comes on and says, “We *will* find a way to regrow limbs.”  Granted, I haven’t lost a limb, but I pretty much live one-handed, and I don’t feel like I miss out on a whole lot. I actually wrote about this in article right before Christmas, about how I’d once talked with a woman online who couldn’t understand why her blind date hadn’t told her before their date that he was missing a hand. I suggested that perhaps he was fine with the fact that he was missing a hand and didn’t see any need to tell her. But clearly she’d had a problem with it.

When I hear things like, “We *will* find a way to regrow limbs,” I feel the same way. I feel like it’s society saying to people who have lost a limb, “We have a problem with you being like this, so we are going to cure you,” when many of these people may not a problem at all with how they are living.  Society has the problem with the disability, not the person living with the disability.

Lost a Limb: Accessibility Woes

Not that navigating society without a limb isn’t difficult, particularly if one has to use a wheelchair. However, much of that difficulty with being in a wheelchair happens because accessibility is so slowly becoming a priority.  I can speak from experience on this one…it’s not so miserable being in a wheelchair when buildings, spaces and transportation are accessible. Again, it’s been society’s problem with people with disabilities that’s made having disabilities difficult. Thank goodness that’s changing.  It will be interesting to see whether medical science can regrow a limb by the time that all Ontario buildings have to be physically accessible (2025).

Lost a Limb, But Still OK!

I’m fine with having little function in my left arm and hand. There are some things that I obviously can’t do, but I manage. I went through a process of becoming fine with who I am with those impairments, as I imagine I would if I lost a limb.

Perhaps some people would welcome medical interventions that took away their disabilities. I’m not saying I wouldn’t try an intervention myself if it could bring back a lot of function in my arm and hand. But the blanket assumption that all people who have lost a limb want/need to be “cured” bothers me. It suggests that they’re not good enough, or can’t have productive, fulfilled lives,  the way they are right now.

And that’s simply not true.

 

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“My Princess Boy” and My Christmas Wish for the World

I saw a wonderful segment on Dr. Phil’s episode on “Radical Parenting” today. Cheryl Kilodavis talked about her son Dyson and how his love for all things pink and pretty inspired her to write “My Princess Boy”, a book on the importance of accepting differences.

A Little Boy in a Dress

Kilodavis talked about how Dyson, now five, had been interested in sparkle and glitter and dresses from age two. They showed several pictures of him in dresses over his jeans as he played sports, and a video of him showing his three most favourite dresses. He’s an adorable little boy, and clearly seems happy, social and active. Kilodavis said that the doctors that they’d taken Dyson to had told her and her husband that he was a very healthy, well-adjusted little boy, and not to over-encourage the fascination with dresses…but not to discourage it, either. In light of that, the Kilodavis’ decided to support Dyson’s preferences, whatever they happened to be in that moment. If they changed later on, they’d support those too. They would be adults that their son could count on to guide him to be the best that he could be…however he chose to dress.

People Fear “Different”

I like Dr. Phil because he’s very committed to child welfare and because he has taken bullying on as a personal cause. In the interview with Kilodavis, he identified people who are “different” (specifically, people of a “different” ethnicity, who have disabilities or who are struggling with GLBTT issues) as the most common targets for bullying behaviour. I found Kilodavis’ opinion that kids are becoming such bullies because adults are modelling bullying behaviour really intriguing. I was also deeply touched by how she talked about that she’s just trying to support her little boy, who’s secure and happy with who he is, and trying to give others tools to do the same thing, hoping that they’ll say, “Yes, we will.”

Dr. Phil seemed to think that “My Princess Boy” would go a long way toward helping children learn about accepting differences. I will be buying a copy of it for my personal library.

“My Princess Boy” and Other Beautiful People

Between personal experience, experiences of people that I’ve supported, experiences of friends and of their children, and even the experiences of children (and adults) that I hear on the news, I feel like bullying, hate speech and hate crime has taken too much of me. I feel like it’s taken too much of us as a society.

My Christmas wish is that everyone finds people that will say “Yes, we will” while the rest of the world is smartening up about learning to accept differences. Because life’s a lot more pleasant when you’ve got people around you who will love you unconditionally while you’re just being who you are.

Thank you to the Kilodavis family for what they do to educate people about the importance of celebrating our differences.

More on “My Princess Boy” here: http://www.myprincessboy.com/index.asp

Interview with Dr. Phil about “My Princess Boy”: http://www.drphil.com/slideshows/slideshow/6479/?id=6479&slide=0&showID=1694&preview=&versionID=

I’ll see you after Christmas. Happy Holidays to you and yours. :)

my princess boy

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My Brain AVM Story: Leaving Ottawa

I was in Ottawa today, and it brought back a lot of memories. It’s almost 11 years ago to the ottawaday that I walked out of the Ottawa Rehabilitation Centre after being in hospitals since the end of May. I’d be going home for good.

Ottawa, December 21, 2000

My last day at ORC was marked by my infamous tantrum about a day nurse that lied about me at a previous meeting being scheduled to represent Nursing staff at my discharge conference. Administration eventually declined to send someone from Nursing if I refused to have her there. This was fine, as far as I was concerned. My psychologist read Nursing’s notes, and the nurse who’d thrown me under the bus (as far as I was concerned) didn’t get to speak. It was a win-win for me, really. The whole sordid story behind that is here:  http://www.girlwiththecane.com/brain-avm-4/

All of us on the unit were leaving that day, because the unit was closed over Christmas. Some people would be returning in the new year for more inpatient therapy, or for outpatient therapy. I wouldn’t be, so I said good-bye to all my friends: Nick and Angela, and Helene, and Alison, and Katie. Some of them I’d see again. Angela and I spent a week together at her home in Ottawa in the next year, and I saw Katie a few times when I went to Kingston to visit my sister. The others slipped off my radar. I’ve tried to find some of them through the Internet, and haven’t been able to. Angela kept in touch with some of them, as she went to ORC for outpatient therapy. But some even she lost touch with some of them. Perhaps they wanted to forget that time in their lives.

I said good-bye to all my physiotherapists and occupational therapists, and my social worker and my psychologist, and the doctor that oversaw my team. I was nervous. The hospitals were friendly places for disabled people. The buildings were accessible and people were okay with me moving slowly and I knew that if I had a seizure I was surrounded by people who knew what to do. I knew that the “real world” wasn’t always like that.

Good-Bye Ottawa Rehabilitation Centre

I walked into ORC using a cane. I was shaky and I didn’t get very far before I needed to use my wheelchair, but I walked in. I was a lot less shaky when I walked out, but my wheelchair was right behind me. I needed to use it when Dad took me to the mall so that I could do my Christmas shopping before we left town.

Today, nearly twelve years later, I did my Christmas shopping without a wheelchair. I walked into McDonald’s without my cane, in fact. We don’t need a disabled parking placard for Dad’s car anymore because I simply don’t qualify for one.

It’s taken a lot of hard work, and I know that there’s still hard work to come. But things are very different than that day that I walked out of Ottawa Rehabilitation Centre, and that really struck me today.

I think I needed to remember that today – that I’ve faced challenges before and worked hard and gotten to a good place, and that I can do it again.

What reminds you that you can get through the tough times, when you need that bit of encouragement?

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Decisions, decisions…

Elizabeth McClung and I have been having a conversation via comment on my essay “Get Up” decisions(from my 2006 book “Run, Run Because You Can”), which I recently posted last week. It’s got me thinking about decisions. Specifically, it’s got me thinking about how everyone has the right to make bad decisions.

Elizabeth Said:

“Trying 10 times and failing might mean setback right?

I can’t stop thinking about the complicit attitude and acts of visitors, nurses, and others in keeping this man who wanted to not be in a wheelchair to force him to be there…..for his own good (determined by others).

You wrote that your safety when climbing a mountain is not assured. So why did you get to climb and he got locked down against his will? Without further information I don’t know but it doesn’t amuse me or delight me, it makes me alternate between nausea and anger, as it seems a recorded discrimination based on age, not on will.”

I always appreciate Elizabeth’s feedback, because she often helps me to view things in different ways. I’d never viewed the story in the way she suggested. I’d always assumed that the staff had what they considered a good reason for keeping this gentleman from leaving, which was obviously what he wanted to do. Her comments made me start to think about what I would I would have done as this man’s worker if he was person with an intellectual disability.

What Would I Have Done?

It’s difficult to say, truthfully, because there’s a lot of information that I don’t have. Perhaps, like I was right after my stroke, he was confused about the new limitations on his body and didn’t realize that he couldn’t walk anymore.  Perhaps he had severe dementia and didn’t even realize where he was. Perhaps he was simply too ill to go home and didn’t want to accept it.

I realized after thinking about this that I really don’t know much about the policies for keeping someone in the hospital who doesn’t have awareness of how ill he or she is. If there are psychiatric factors associated with the person’s diagnosis, then the doctor may choose to keep him or her in the hospital on that basis.  This man may also have had a power of attorney making decisions for him. Or he may have been waiting for transfer to a physiotherapy unit. I had to wait awhile.

But, assuming that none of these were variables, did the hospital really have a right to keep him in when he’d so strongly expressed a preference to leave? Plenty of people without disabilities choose, for a variety of reasons (some of them not-so-logical)  to leave hospitals against medical advice.

The Right to Make Bad Decisions

I’d need someone who works in a hospital to answer me for sure. And I know that on some days I certainly wished I could “save” the people I worked with from making decisions that I knew were going to make life infinitely harder for them, especially if I couldn’t understand why they were making those decisions. But making decisions for people wasn’t my role, ever, and I would never want it to be.  It wouldn’t be fair of me to say, “This is better.” I just tried to present options, emphasizing that the choice was the person’s.

Everyone’s allowed to make bad decisions, no matter how much we wish they wouldn’t. I hope that if I’d been this man’s worker, I’d have fought for his right to make the decisions he wanted, even if they were ones with which I didn’t agree.

And I certainly would have had a conversation with the staff about the belt restraint on the wheelchair. Restraints should *always* be a last resort.

Thank you for the conversation, Elizabeth. I always enjoy talking with you.

Check out Elizabeth’s blog at http://elizabethmcclung.blogspot.com/

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Practicing My Auntie Skills

I’m blogging from my sister’s house today. I’m visiting with her to help her get ready for Christmas.

Practicing being “Auntie Sarah”

brain avm

Rachel and Gillian

Of course, this means that I get to spend some time with my adorable little niece, Gillian, and practice my “auntie” skills. She’s now almost four months old. She grows and changes so much that she’s practically a different baby every time I see her. Now she’s very strong: she holds her head up, and tries to roll over when she plays on her floor mat, and screws up her little face and tries to pull herself out of her ExerSaucer when she’s had enough of bouncing around in it. She looks around the room to find the source of new sounds, her blue eyes wide and alert. She loves looking at faces. When she’s in a good mood, she’ll smile and giggle when I make funny faces at her.

I could play with her for hours.

auntie

Me and Gillian (first thing in the morning)

You Never Know What You Can Do                           Until You Try

However, it’s still felt strange, when I’m around her. I always feel like I’m the only adult who can’t pick her up  and soothe her when she cries. But today Rachel talked about how she often scoops Gillian up with one arm      while she has to carry something else, and speculated on how I should easily be able to do that given the strength   in my right arm. So I gave it a try. And I was thrilled to discover that, yes, I’m able to scoop Gillian up from a lying-down position using my right arm, bring her up to my shoulder, and even turn her around to have her lie over my arm (her favourite position, and Rachel’s favourite position as a baby as well, come to think of it).

I was over the moon. Rachel and Gavin were very        pleased. Even Gillian was happy, once I got her in her favourite position.

So, to date, I can change Gillian’s diaper with one hand, and also pick her up from a lying-down position. I also gave her an afternoon bottle.

I feel much more like an auntie.  It’s a very nice feeling. :)

 

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Involuntary Sterilization: Never Again

Several feminist bloggers have recently written about a story out of Tanzania involving the involuntary sterilization of a woman with several children.  As an American doctors helped her to deliver another child, there was a problem with the epidural injection, and the woman stopped

sterilization

How much is the option to have a child worth to you? How would you feel if someone forcibly took it away?

breathing. The American doctor did chest compressions to save her life. Another doctor performed a tubal ligation, saying, “I think she does not need another baby after this.” The American doctor later called the second doctor’s actions “heroic”

Not Acceptable

When the story broke on the “Femnomics” blog, he defended his stance on the second doctor’s actions by saying that it had to do with realities of life in remote parts of the world and that the sterilization was done with the risks in mind of what could happen if the woman got  pregnant again. But all I could think about was large group of women who were sterilized “for their own good”.

(Read the whole story on the Tanzania sterilization here, plus the American doctor’s defense of his actions, here: http://femonomics.blogspot.com/2011/11/involuntary-sterilization-cowboy.html)

Involuntary Sterilization in North American News

Meanwhile, North Carolina is currently trying to decide how much monetary compensation is owed to the 7600 people that its Eugenics Boards declared should be sterilized involuntarily between 1933 and 1977. According to a recent New York Times articles (http://www.nytimes.com/2011/12/10/us/redress-weighed-for-forced-sterilizations-in-north-carolina.html?_r=2&pagewanted=2&seid=auto&smid=tw-nytimes), 31 states had such eugenics programs. They were  “an experiment in genetic engineering once considered a legitimate way to keep welfare rolls small, stop poverty and improve the gene pool.” The “feeble-minded”, or people with intellectual disabilities or mental conditions, were often targets.

Not that America has the monopoly on the this. Forced sterilization was widespread in Canadian institutions for decades.  Even after the eugenics argument had fallen from favour, sterilization for women was still favoured as a way to them and the women who support them handle menstruation easily, as birth control, and as a way to protect them from abuse (see http://www.wwda.org.au/steril2.htm for a discussion of this).

Not Enough

North Carolina is currently proposing that the each person that was forcibly sterilized be given $20 000. I don’t think it’ll surprise anyone where I stand on this. There’s a scene in the film “Erin Brockovitch”, which (in case there’s anyone left out there who hasn’t seen it), deals with a lawsuit over a town’s water that’s got a cancer-causing compound in it, courtesy of a very large company. When the lawyers are trying to hammer out a settlement for each citizen that’s been affected, Erin says, (and I’m paraphrasing), “I’d like you to consider what your kidneys mean to you…or your ovaries…or your kid’s health…and times that by a million…and then come back with an offer. Anything else is insulting.”

I think that’s the kind of consideration that’s needed here. These people need to go home and look at their kids’ baby pictures, and think about how they would feel if the choice to mother or father that child was taken away from them without their consent (and quite possibly even their knowledge). And think about just what that sterilization was intended to do. And multiply whatever number they come up by another, substantial number. Then they might be getting close to a reasonable settlement.

And put the laws in place so that this never happens to anyone else again.

Anything else is insulting.

 

 

 

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My Brain AVM Story – “Get Up”

This is another essay from my book, “Run, Run Because You Can”.  You can read the first essay from the book that I posted in this blog at: http://www.girlwiththecane.com/brain-avm-story-20/

Get Up

On my first day on Penetanguishene General brain AVMHospital’s rehabilitation floor, I woke up thinking, “I can’t do this.  I don’t want to do this.”

Decide whether or not to get up after we’ve been knocked down is like standing at the foot of a mountain and deciding whether or not we’ve got the stuff in us to climb it.  Mountains are huge and craggy. They often rise through inclement weather.  Often, what’s at the top isn’t even visible from the ground.  Your safety isn’t guaranteed when you climb a mountain.

So why do it?

Because we must.  Because the human spirit hates to be grounded when it can climb.  Because we’re meant to go without fear and strike a trail that we can be proud of, right to the top of our mountains.

An elderly gentleman on my floor at Toronto Western was famous among staff and patients for repeatedly trying to escape from the hospital.  He could not understand that he was too frail after his surgery to be even walking on his own, let alone living in his own home.  He promised he would sit quietly in the wheelchair if they would let him get out of bed, but the nurses soon learned that he would hop up and make a beeline for the elevator as soon as he thought no one was watching.

He almost made it off the floor one night. One of my visitors mentioned to one of my nurses that he’d just seen an elderly man in a hospital gown heading for the elevator…did she want to know about that?

She dropped everything and ran from the room.

Never Give Up

I never met this fellow.  I never even saw him. I did, however, hearing from my family about his escapades, and the stories delighted me.  I do love people who go after what they want, and this man seemed to concoct a new escape plan every day.  He became so hard to keep seated the wheelchair that the nurses were forced to belt him in it, for his own safety.  He’d sit by the nurse’s station, as he claimed it was too lonely in his his private room, for which he paid.  He would plead with my sister each time she walked past his wheelchair, “YOU will let me out, let me out!”.  Dad once caught him trying to saw through the belt restraint with a plastic butter knife.

Faith, Hope, or a Bit of Both

Deciding to get up and try again needs that passion and conviction.  It’s a decision made in the soul.  When it’s made, heaven itself shifts, though we don’t always see the action that we want here on the ground.   “Whew, that was easy!” you might say when it’s done.  “This is what I have decided.”  That’s how these decisions are.

When there’s no choice but to hope that getting up is going to be worth it, everything becomes very clear and very easy.  It’s making that decision again, everyday, over and over, until you breathe it, that’s difficult.  Because you won’t make it once, twice, ten times…you’ll have to do it as many times as necessary, believing that it is going to pay off.  You can call that faith, or hope…personally, I think it’s a bit of both.

Whatever you call it, as long as you hang onto it, in whatever way that you can, you’ll be okay.  I believe that.

To Brighter Tomorrows

That first day, after I asked myself if what I did want was to be flat on the back for the rest of my life, powerless to look after even my most basic needs, totally forfeiting control of my body and my life, I decided I had no choice to but to get up.  And, as hard as it’s been sometimes to trust that whatever is at the top of my mountain is worth the climb, I’ll never regret taking that first step.

I am glad that I can still have faith enough to keep trying, and that I can dare to hope for brighter tomorrows.

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Transition Planning – Wishes and Dreams

This is the second post in a series on assisting young adults with transition planning as they leave high school and enter the adult world.  You can read the first here: http://www.girlwiththecane.com/transition-planning-1/

Community Living Kawartha Lakes developed a transition planning manual several years ago called “Building My Bridges from School to Adult Life – A Transition Planning Manual for My Future”transition planning which includes a page called “Wishes and Dreams”. The idea of people having wishes and dreams sometimes helps students to better understand transition planning.

Everyone has Wishes and Dreams

Many young people with intellectual disabilities haven’t thought about the fact that they could do anything in life other than what they’re directed to do. In fact, they may have been explicitly told that they shouldn’t try something because they won’t be able to do it, or told some activities simply aren’t options for them. It takes a while for some of them to really consider what they’d like to do in life and to start talking about it.

The people that have told them that they shouldn’t try something or out-and-out forbidden it have sometimes done it with the best of intentions. They’ve not wanted to set the young person up for failure, or put them in a position where they could potentially experience disappointment or rejection. Sometimes they have concerns about the student’s safety or well-being, and sometimes those concerns are legitimate. And everyone should be so lucky, to have people who are concerned about their physical and emotional well-being.

But everyone has the right to wishes and dreams, including people with intellectual disabilities. Transition planning is identifying those wishes and dreams, evaluating what’s needed to make them come true, and coming up with a plan to do so.

Transition Planning in Action

A couple of examples…

  1. A student may want to go on to post-secondary education. Transition planning will include working with the school to sure that the student has all the courses that he or she needs to apply. In Canada, going to community college or doing an apprenticeship is an ambitious (but not impossible) goal for a student with an intellectual disability, and may take some time to achieve. There may be significant setbacks and disappoints along the way. But students need to learn to deal with setbacks and disappoints, too, just as everyone else does. Just because dreams are ambitious and may cause a student disappointment are no reason not to include them in a transition plan.
  2. A student may want to live independently. Many students with intellectual disabilities require skill-building and safety training, and sometimes some support services, to ensure that they will be safe in an independent living setting. Transition planning will include working with the school to see what independent living skills the student can learn there, assisting the family to apply for funding for a life skills worker, educating the family on how they can teach life skills at home, and assisting the student and to apply for supported independent living housing arrangements. Transition plan goals should take into account that the individual can learn new skills before reaching the goal.
  3. A student may have a goal that may be unlikely to reach for anybody.  Not many people are going to be professional ballet dancers, for example. But no one told me when I was ten that I couldn’t take ballet, dream about ballet, and learn about what I needed to do to become one. I was eventually disappointed when I learned that I couldn’t be, yes. But I found ways to continue to keep ballet in my life. Transition planning for the student who wants to be a Hollywood director will include researching ways to indulge his love of film in the community, perhaps through a job at a movie theatre or video store and expanding his social network to find friends to go to the movies with. Transition planning should be creative.

Wishes and Dreams of Friends and Family

Good transition planning is person-centred. People who are important to the student, such as family, friends, teachers and support people should be encouraged to talk about their wishes and dreams for the student’s adult life. Ultimately, however, it’s the student’s life goals that should guide planning. As a transition planner, my first responsibility was to the student.

More about transition planning from the National Dissemination Center for Children with Disabilities (American resource):

http://nichcy.org/schoolage/transitionadult

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