Archive | August, 2011

My AVM Story: Counting My Blessings

Not Good with Pain!

For almost three weeks now, I’ve a toothache.

It started off as a twinge, and then, the Wednesday night before last, all hell broke loose. I didn’t know that teeth could cause that kind of pain. I took the post-stroke painextra strength generic ibuprofen that I had in the house, but it didn’t make a dent in it. I cried. I called a friend to distract me. I called my dentist the next morning, but he couldn’t see me until Monday.

I lasted until Saturday night before I went to the ER looking for meds.  They gave me *lovely sigh* something with codeine in it.  Which worked wonderfully, but made me feel like I was going to have a seizure every time I took it. My conversation with my dental hygienist on Monday, however, shows how much I value good pain relief:

Me:  The codeine that they they gave me at the hospital makes me feel like I’m going to have a seizure, so I’ve been a bit unsteady.

Jessica: Seizure!  No more codeine for you!  He’ll write you a prescription for something without codeine for you.

Me: (Pause) But the codeine works *so* well…

My dentist established that I need a root canal and prescribed me something called Naproxen (which doesn’t work as well as the stuff with codeine in it, but I’ve survived). But all of this has made me think about how I would have handled my health issues if I’d had to deal with pain on top of everything.

So What if There *Had* Been Pain?

The first stroke, the one that I had in British Columbia, came with a terrible headache, and pain that started in my neck and moved down my body.  The initial pain was definitely the worst in my head that I’d ever experienced, and the worst generally that I could remember. It took two weeks before both kinds of pain completely went away. Apart from that, and some severe headaches right after the brain surgery (which one would expect), I haven’t experienced any pain. Sometimes one of plusses of stroke is that you don’t experience pain. I fell on my left hand two years ago, went to the hospital for X-rays a couple of days later because my thumb hurt, and found out that I’d broken my little finger and didn’t realize it

(As you can imagine, having that little sensation in a finger or limb can also be very dangerous. I’ve heard horror stories about people with very little sensation in their affected hand or limb setting it down on a hot burner, or cutting it badly, and not realizing it until some other signal of skin damage made it obvious. Because people are less aware of a side that’s been affected by stroke, they tend to “neglect” it, or not pay attention to things like where a limb ends up resting.)

But I digress.  My stokes didn’t inherently cause any long-term pain, and I didn’t realize until much later that I’d dodged a bullet.  A young man named Martin showed me how much worse it could have been.

Post-Stroke Pain

Martin was also a stroke survivor.  Just a bit older than me, he’d had a stroke after being in a terrible car accident. Among many other health issues unrelated to the stroke, he had something called “post-stroke pain”, or “neurogenic pain”. The brain damage caused by his particular stroke caused his brain to feel pain when there was nothing there to cause it. He didn’t talk about it much, but he once told me that it was excruciating. His mother told me later his post-stroke pain felt like his fingernails were being ripped out for several hours a day, every day.

I don’t know how I would deal with that now. I certainly don’t know how I would have dealt with it as I was earlier stages in recovery.

Counting My Blessings

I know for sure that I would have found it much, much more difficult to stay positive and to get on with the work of recovery if I’d been dealing with any sort of chronic physical pain. Emotional pain – I can work around that (well, up to a point, but it’s got to be pretty intense before it interferes with my functioning). It’s been my experience that physical pain gets much more in-your-face much more quickly, and I’ve got no end of admiration for people who seem to thrive in spite of it.

I know that I couldn’t do it.

So I count my blessings. A lot of people out there have got it a lot worse than I ever did.

For more information about post-stroke pain:  http://www.emiliemcmahon.ca/englishmrp.html

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To NVCI or not to NVCI, Part 2

Just to remind people…

DISCLAIMER:  I’m not in any way affiliated with the Crisis Prevention Institute or any of the training that it offers. I obviously have some strong opinions about the CPI’s Non-Violent Crisis Intervention (NVCI) training, but they are my own.

NVCI Holds

I’d like to continue the discussion of NVCI training that I started yesterday by talking about NVCI holds, or bodily restraints. You’ve likely seen variations on them in movies, but the NVCI holds are generally less dramatic. They are used are used as a last resort, constantly monitoring the person in the hold, and only until the person has indicated that they’ve regained physical control.

I’ve never had to use an NVCI hold on anybody. I was lucky that I didn’t have to in any context before my stroke, and after my stroke using NVCI holds wasn’t an option for me. Like the teacher in the Facebook conversation that I talked about in yesterday’s post, I really hope that, even if I got to a point where I could safely use a NVCI hold, I never have to.

NVCI Holds and Inaccurate Connotations

When I hear the word ”hold” in the context that we learn in NVCI training, I think “restraint”, and I think of being tied to the bed in the hospital (See the blog entries entitled “Finger Spelling” and “Finger Spelling, Part 2″ for the story about my restraint experiences). The NVCI holds are bodily, with a focus on comfort and safety for the person, but they are still restraints, and they still conjure up the image of restraint for me.

But I was not a person who should have been put in a restraint, according to the NVCI guidelines around restraint.I wasn’t out of control. I wasn’t at risk of putting myself or others at harm. When a person has genuinely reached that stage, when they’re no longer in control of their actions and they’re at risk of putting themselves or other people in danger (and agencies should have criteria even beyond that for whether or not use of a NVCI hold or any other restraint is appropriate in a given situation), it’s not a nice feeling for the person. No one likes being at that point. A NVCI hold, done properly, (which is physically safe for both the person or people doing it and the person who’s out of control) can bring about a measure of security that the out-of-control person needs to become calm. But NVCI holds are restraints, so they need to be used as last resorts.

And they need to be done safely, because the person or people doing doing the hold can also be hurt if it’s done the wrong way.

I remember a situation several years ago in an airport where I believe a man died after being tasered by police. It astounds me that despite having the capacity through NVCI training and CPI-sanctioned means to safely and effectively restrain (and move an individual in restraint), more agencies don’t opt to make that part of the protocol. If the police were close enough to taser, they were close enough to do a safe, effective restraint until, if necessary, a chemical restraint was made available. The man could have lived.

No one wants to see people restrained. But if it must be done, as the last resort, agencies should take advantage of training that will ensure that staff can do it safely.

To sum up:

1) Agencies should have safety for both clients and staff as a priority in all matters, including those involving potential violence from any source.

2) NVCI is much more than the holds.

3) The verbal and non-verbal NVCI intervention strategies are good for anyone to learn, should they get the chance.

4) There’s no reason why staff working in sectors where clients take unpredictable action shouldn’t be taught the means to safely, for them and for clients, deflect any violence aimed at them.

5) NVCI Holds should be a last resort and have agency policy surrounding their administration, but can be done safely and with a minimum of trauma for everyone when done according to NCVI guidelines.

Obviously this is something about which I have strong feelings. This is another area where we have to balance respecting rights, responsibilities, and needs of the people we support, and that brings out strong feelings with anyone in this field.

More about CPI and NVCI:  http://www.crisisprevention.com/

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To NVCI or not to NVCI…

I caught a Facebook conversation recently between two friends about the Crisis Prevention Institute’s Non-Violent Crisis Intervention training, or NVCI training (which, for those of you who don’t know, is training in de-escalating potentially…I’m going to say violent, because it can get to that point, with the understanding that I’m reluctant to because I don’t want to contribute to the idea that certain groups are inherently violent because of a diagnosis…situations in a way that’s safe for everyone.)

DISCLAIMER: I’m not involved with the Crisis Prevention Institute in any way, besides having taken NVCI training in the past. I don’t speak for them. The opinions in this blog post (and the next one) are my own.

There.  Now that we’ve got that out of the way. :)

Philosophically Against NVCI training

The school at which I received my training to work with people with intellectual and/or developmental disabilities wouldn’t do NVCI training with us. They may have changed their stance on it now that more and more agencies require it. But when I was a student, we were free to pursue the certification outside of school, but it wasn’t a training that they’d offer in-class due to the section on “holds” (physical restraint). Their philosophy was that they were against physical restraint in all circumstances, so they wouldn’t offer the training as part of the curriculum.  One of the friends involved in the Facebook discussion that I mentioned earlier was lamenting that teachers now have to have NVCI training and hoped that she’d never have to use a “hold” on a child. While I do understand both lines of thinking, I don’t know if they’re realistic for support workers today.

Being Pragmatic – Use the Tools

First, I would hope that any agency or government institution (a school or a hospital, for example) that does NVCI training with staff hopes too that the holds won’t ever be necessary. If staff has to use a hold on a client, then the most important parts of NVCI training, the parts that make up the bulk of the training, have failed, and a situation has gotten much more out of hand than it needed to be. Most of NVCI training is about learning to defuse anxiety in a person or a

Tools for defusing anxiety and frustration…

situation the moment it    manifests. Trainers teach  course participants  verbal and nonverbal  tools to de-escalate  situations where it looks  like a person has the  potential to behave in a  violent manner, before  the behaviour itself  begins. These strategies  are the most important  part of the course, and  I’ve used them even off of  the job site, just to  reduce another person’s  anxiety or frustration – a  lot of it is common sense  about working with people, not just people whose anxiety might move their behaviour to a level that becomes a concern.

However, when I’ve taken the NVCI training, it’s been in positions where I’ve been required to work with people who, for a variety of reasons, *are* prone to anxiety and frustration and who sometimes behave unpredictably. Sometimes it’s been a pattern that anxiety or frustration mounts because they have difficulty communicating and making their wishes known, or letting people know that something’s wrong.  Sometimes it’s been because of medical or hormonal problems. Sometimes it’s been because of mental conditions. And while I’ve been lucky enough this far in my career not to have been the object of violence, I know that it does happen.

Using What Keeps Everyone Safe, Given Certain Realities

My school and I disagreed vehemently on this, but I saw (still see) no reason why workers in the developmental services field should be required to absorb violence from people that they support. It may be on the worker that he or she didn’t catch a situation soon enough or do a good enough job of defusing it, but I’m not going to begrudge *anyone* instruction on how to safely (for both parties) deflect an assault because he or she is still learning good verbal/nonverbal conflict de-escalation skills.

The key there being *safety*. NVCI violence deflection skills, if they absolutely must be used (assuming they are used properly) keep both people safe. And for something like this, agencies should strive to make the safe way to deal with violence, for both people, the instinctive way of dealing with it.

More on this in the next post.

For more information on CPI and NVCI: http://www.crisisprevention.com/Resources/Knowledge-Base

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Internet and Youth with Intellectual Disabilities

This post goes out especially to parents of teens with intellectual disabilities.

A Whole New World: Facebook

This post came to mind because I’m doing a project on social media sites such as Facebook and Myspace for an agency right now, but I’ve long had concerns about these sites when it comes to users with intellectual disabilities. I’ve worked with youth with mild intellectual disabilities who have profiles on sites like Facebook and MySpace, and some of them manage it quite well: they know what information to make public and not to make public, they know all the people on their “friends list”, and they’ve had someone look at their profile and make sure that their security settings are such that only authorized people can see what they post.

More often, however, I was dismayed by what I’ve seen when I searched for (and easily found) their profiles on Facebook (I can’t really talk about MySpace, as I’ve never used it, but I’d imagine that the situation isn’t much different there). For most youth that ended up on Facebook, I could see what they and others had written on their “wall” without being a “friend”, indicating lax security settings. Some include personal information on their profiles. And Facebook, as a general social force, causes no end of trouble, because this demographic doesn’t generally have 1) the discernment skills to be able to determine, “I should not be talking to this person” and 2) sufficient knowledge and skills to get out of a situation that they can’t can’t handle when their discernment skills let them down.

Strategy and Preparation

Please don’t take that to mean that I don’t believe there’s a place for people with intellectual disabilities on Facebook.  I think that all social media applications present a marvelous opportunity for people with all sorts of disabilities to network, educate, and make new friends (see “My Name is Sarah” in the blogroll to read a delightful blog by a young woman with Down’s Syndrome, assisted by her mother). But safety has to be considered. I’m of the parenting school that believes that it’s okay to insist that you have your teen’s Facebook password, whether they have disabilities or not (up until 18, and I’d prefer that they agree to let me have it longer than that if they have an intellectual disability, but I can’t force them), but you’ll have to decide what you feel about that.

If you have a young person with an intellectual disability in your life who wants to be involved with Facebook, please do the following for their sake:

  1. If he’s in school, get in touch with his teachers. Find out what he’s learning about the internet and services like Facebook. Is he being taught about Internet safety? Is it being taught once and then the class moves on (information this important needs repetition and reminders).  What kind of internet services are the students signing up for in computer classes? Are the students blocked from accessing any services from school?
  2. Talk to your teen. Why does she want a Facebook account? Does she know what it means to use it responsibly?
  3.  If you don’t feel comfortable having his password, does he know that he should come to you if he comes across something that he can’t handle?
  4. Does she know about the Facebook features that she can use to deal with conflict with others?
Heck, have these conversations with *all* your children.  Social media is good for a lot of stuff…but it’s best to make sure that everyone is using it safely.
Have any parents of kids with disabilities out there had some experience, good or bad, with the internet?  What’s your number one concern? What’s your number one suggestion?  Someday I’d like to write some sort of curriculum that agencies could use to educate people with intellectual disabilities about internet safety, so I’m interested in hearing about peoples’ experiences…
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Engineering Your Future

Some people want it to be perfect.

The Shopping List

When I got involved with online dating, I also posted, for a time, on a dating advice site associated with one of the dating sites. *That* was an experience, for many reasons.

One of the more puzzling attitudes that I came across was the idea of the “preference”, or set of standards that people had for a perfect partner.  Now, I have preferences: I like tall guys, I like guys whose politics are on the liberal side of the spectrum (to match my “bleeding heart” politics, as one guy I dated put it), and I like guys that, if don’t enjoy, will at least tolerate my occasional foray into movies relying on dark and/or juvenile humour that women my age shouldn’t find funny.

However, I’ve dated outside all of these preferences and had great relationships. There’s a group of people in society who have preferences from which they simply won’t deviate: If he’s not tall enough or doesn’t have enough hair, or she’s not thin enough or doesn’t conform enough to female gender roles, or he/she doesn’t make enough money or has something in their history, like depression, that causes discomfort (pick any one of them; these seem to be the main “deal-breakers”, if there are going to be any), it’s not going to work. End of story.

Inevitably, in a thread where this was being discussed, I or someone would come along and point out that peoples’ bodies change as they get older, people get fired from jobs or move on to new ones where they make not make as much, people get sick…circumstances just *change*, and if that preference that you predicated the entire relationship upon the other person having was once there and suddenly isn’t, what do you do?  Building a relationship on something transitory just doesn’t work.

But there was always a group of posters that didn’t want to hear that.

You Can’t Always Get What You Want

I was thinking about this the other day as I heard my sister  talk about how a couple she knew was progressing through through the process of adopting a brain avmbaby through the Children’s Aid Society. It’s a long process involving reference checks from the police, family and friends, home visits from an adoption worker, parenting classes, and sometimes fostering for the CAS before becoming adoptive parents. Rachel”s friends were finally getting to the top of the list for becoming adoptive parents.

I asked if the process went faster if you were willing to take, say, a child with Down’s Syndrome. Rachel said that it definitely did, but that her friends had specificed that they didn’t want a child with disabilities.  Apparently most of the children looking for adoptive homes in her friends’ area have Fetal Alcohol Syndrome.

On the one hand, I can understand not wanting to end up adopting a child with Fetal Alcohol Syndrome. FAS causes brain damage that not only leads to impulsiveness, diminished judgement, extreme mood swings, lack of self-discipline, and difficulty with social cues, but also causes physical damage to the eyes, ears, and teeth. A child will FAS will likely need interventions into adulthood to work and live independently, as symptoms often intensify with age. If a family is looking to adopt and doesn’t feel that they can handle that, best to be honest and say it right from the beginning.

However, the other part of wants to say to these friends of my sister’s, if I could: “You could get a perfectly healthy baby, take it home, have something happen somewhere down the line that causes a traumatic brain injury…and you’ve got a kid who’s struggling with impulsiveness, diminished judgement, mood swings, lack of self-discipline, and difficulty with social cues.”

“You might get a baby who ends up being on the autism spectrum…or mental health issues as a child or teen…or severe learning disorders…”

“Just because you said that you didn’t want a baby with a disability…is no guarantee that you’re not going to get one. I really, really hope you’ve thought about that.”

And I’m sure that they have, because they’re those kind of people.

But it still hurts a bit…most people who are adopting want a perfect baby.  Few people consider that the perfect baby *for* them might not actually be perfect.

If I’d had to be adopted, and they’d known that I’d had a ticking time bomb in my head…would anyone have adopted me?

For more information on FAS:  http://www.faslink.org/

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A Perspective on Congenital Impairments

I don’t have a whole lot of time today, but I thought I’d share this excellent commentary on how

society looks at  disabilities that people are born with. It certainly gave me  some things to think about.

http://blobolobolob.blogspot.com/2011/08/disability-hierarchy-2-born-this-way.html

Have a great day. :)

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Wheelchairs and Airline Travel

Let’s talk about physical disabilities and air travel.

“Up, Up and Away…”

I didn’t do any air travel when I was in my wheelchair, but I’ve traveled several times with my cane. Besides the fact that I’m slower going through the security scans (it takes me more time to put my cane through, take my shoes off, get myphysical disabilities computer out of my carry-on, get myself together again on the other side) I haven’t really encountered any difficulties beyond what someone with physical disabilities and a mobility aid might expect to experience: my gate has been changed at the last minute and no one’s told me, and one time I tried to get on at pre-boarding as instructed at the ticket counter, was told to to sit down and then was later told I should have gotten on at pre-boarding.

But the airlines were also more than willing to deal with those little errors by immediately offering me a ride on a cart to my correct gate, upgrading me, and just generally being pleasant and very nice to deal with. I really have no complaints.

Others with physical disabilities haven’t been so lucky.

“…taking his legs and dismantling them and giving them back broken.”

I had no idea that they dismantled wheelchairs to make room on flights.

http://www.kfor.com/news/local/kfor-airline-returns-mans-wheelchair-in-pieces-20110817,0,6355799.story

As long as my journey back to mobility was, I’ve never known what’s like to have to give up my walking aid to a stranger, knowing that they’re going to take it apart and trusting that they’re going to get it back to me in one piece. I imagine that if you fly a lot in a wheelchair, you learn to live with that reality, but I would think that there’s always got to be some anxiety behind it. We talked in the posts about disability sensitivity about how even having another person even touch or lean on a wheelchair can be anxiety-producing for its owner, because the chair really is a part of the owner’s personal space. Imagine being presented with that part of yourself in pieces at the end of a flight by people that you’d entrusted it to.

And apparently this happens more that we hear about, when in many cases it’s not necessary to break down the chair.

Before dismissing this story as a man being a “victim”, as one of the commenters did, just think about it. Think about feeling physically powerless for a few flight, on the understanding that you’ll get your power back when you land – and then you don’t.

Think about how it feels to be respected so little, that people hand your legs to you in pieces at the end of the flight and just say, “Sorry”.

Soon after returning home from Ottawa Rehabilitation Centre, I had to call the Ontario Disability Support Program. I don’t remember who I talked to. I’ve since had many, many positive dealings with them, through work and in my personal life. But I wasn’t used to dealing with government services at all that point; I was overwhelmed by my new circumstances and the new information being thrown at me. When I got off the phone, I started to cry.

“What’s wrong?” Dad asked.

“They made me feel disabled,” I sobbed.

Let’s do that to as few people as possible, and let’s start by treating people in wheelchairs with respect on the airlines.

 

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So, What Are You Thinking?

Sometimes I wonder what the people I’ve supported who have intellectual disabilities are thinking.

What Lengths Would You Go to in Order to Make Your Wishes Known?

The people with profound intellectual disabilities, who don’t communicate verbally and need a lot of assistance with activities of daily living…I’m convinced that if they were suddenly given the to communicate verbally, they’d probably ask us why the hell it takes us so long to pick up on the other ways that they try to tell us things, and then promptly tell us to fuck off.  I probably would – for all the times that people insisted on feeding me food that I didn’t want, or sat me in front of the TV when a show that I hated was on, or didn’t realize that I was crying because I had a toothache, not because I was sad and needed a hug.

Just imagine a scenario where you have a strong preference about what happens, and imagine the frustration on not being able to communicate if someone *gets it wrong*. Over and over. Of course, they can’t help it that they can’t understand the ways that you try to communicate your preference, so it’s not their fault

But it’s your fault, either. Did you ask not to be able to talk?

Sidebar…

(Just for the record…working with people with the sorts of profound intellectual disabilities that I talking about can be very difficult. In my attempt to illustrate a point, I don’t mean to imply that the people that provide sensitive, compassionate care at home and in group home, hospital, and school settings don’t do a good job, because there are certainly many, many people out there who take that job very seriously are excellent at it. I did a personal care placement in a group home; I know it’s not the area of support in which I’m strongest, even when I was working without disabilities. It takes a special person to do that important work, and thank God there are people that love doing it.)

Giving People with Intellectual Disabilities Control by Watching for the Ways in Which They Communicate

I worked one summer at a camp for adults with intellectual disabilities. One week, I worked with Gertie, a woman in her 70’s. I liked her. She was in good shape for her age, she was tough, and despite a speech impairment, she let it be known what she wanted (which was mainly a cup of tea after every meal and an afternoon nap.)

But her programming notes indicated that in order to have her cup of tea at a meal, she had to have at least two glasses of milk, juice or water at the meal, to be sure that she stayed hydrated. She didn’t like that, and drank very grudgingly. During lunch on our third day together, when she was working on her second cup of juice, I started to notice the glares she was giving me. They got meaner and meaner.

“Uh…anyone want to switch it up this afternoon?” I asked. “I’m kind of getting a vibe that Gertie has had enough of me. Is that it, Gertie?  Are you sick of me?”

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“Tea,” said Gertie.

Thankfully, another counselor was willing to spend the afternoon with Gertie if I went to Swimming with her group. By supper time, Gertie had stopped glaring at me. But if I’d been her, three days of some youngster not letting me drink my tea until I’d forced down two glasses of sicky-sweet juice would have left me glaring too.

Another man that I worked with for just one day that summer arrived with a notation in his file that said that although he didn’t communicate verbally, we would know that he was anxious because he would grind his teeth.

“How am I going to know if he’s grinding his teeth?” I thought as we unpacked his bag together.

I found out soon enough, when he started grinding them so violently that I could hear him on the other side of the cabin. This continued the entire afternoon.

I went to my supervisor after dinner and said, “I’m not taking my evening off tonight. I’m the one who’s been with him all day, and I’m not comfortable tossing a new person at him until he’s feeling okay enough that the teeth grinding stops.”  (It didn’t occur to me that maybe I was the one making him anxious, but it didn’t matter anyway. My mother took a turn for the worst that night, and I had to leave camp quickly to go to Toronto).

The Point

People with profound intellectual disabilities especially don’t have a lot of control over what happens to them. Service providers check themselves more and more these days, to be sure that they’re giving people they support as much choice as possible (not that we should have the power to “give” or “take” something that is rightfully theirs, but I hope you know what I mean.)   When someone is highly dependent on others for care, particularly when they can’t communicate, keeping that high level of personal agency present in care is difficult.  But it’s *vitally* necessary.

Because it’s got to be terrible not to be able to make your wishes known verbally. We’ve got to be very observant when we work with people with intellectual disabilities who can’t communicate verbally, to pick up on any signals that may consistently indicate a state of mind or a desire. It’s the least we can do, really.

 

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Democracy in Action

Here in Ontario, we’re having a provincial election in October. Fun stuff.  The Liberal Party is currently in power in Ontario and in my riding. Tonight, I got a call from my Member of Parliament’s office, inviting me to stay on the line and participate in a “virtual town hall meeting” with him.

Ah, the Wonders of Technology

It was really quite something. When I joined, there were apparently 2400 other people also participating on their phones. The Minister of the Environment dialed in to speak about energy issues. People were

intellectual disabilities

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able to indicate by pressing a combination of keys on a touch tone phone that they wished to asked the  Member of Parliament a question, and he was answering peoples’ questions live. I’ve never seen anything like it done.

I was emailing with a friend as I listened. I typed to her, “I’d like to grill him on disability supports, but he’s not going to know anything about it.” Send.

“Do it! Do it!” she sent back.

I considered it for a moment, as my MP talked about energy issues. Then I typed back, “Why not?”, and pushed the buttons on my phone to indicate that I wanted to ask a question. I wanted to ask specifically about the funding freeze on two Ontario programs: Special Services at Home, and Passports.

Intellectual Disabilities: Special Services at Home

Special Services at Home (SSAH) is funding for families with a young person with intellectual disabilities that allows them to purchase respite services. They can use it to pay to send the young person to summer camp, or to hire a respite worker to take the young person for periodic overnights, or to pay for the young person to go to a respite house every few weekends. The money can also be used to implement a program where the young person can work toward personal development goals.  I always suggested that families apply for SSAH because even in families where the young person doesn’t have intellectual disabilities, parents need a break from the kid and the kid needs a break from the parents!

When I first started assisting families to apply for SSAH, there was no waiting list. No one ever got a whole lot of money, but at that point everyone who applied was getting *some*. Around 2008, that changed. Now, not only do no new applicants get SSAH money, there is a waitlist of 7000 families.

Families without this money go into crisis. I’ve seen it happen.

And then there’s Passports funding.

Intellectual Disabilities: Passports Funding

Passports (which has nothing to do with a actual “passport”, but is rather used in the context of a “passport” to adult life) funding was intended for students with intellectual disabilities just leaving school. It was to be used to implement a plan for community engagement – if the young person had a list of 5 things that they wanted to do in the community after school ended, Passports money could be used to help fund it. Passports money could be used to pay for a wide variety of things, from a monthly bus pass and a digital camera so that a young person can join a photography club, to a one-to-one worker who will help a young person prepare for their goal of living independently.

Passports money still gets distributed to new applicants in small amounts, but there are over 4000 people on the waitlist. For families that suddenly find a young adult with intellectual disabilities at home full-time after having them at school for years, Passports money could be what alleviates a crisis situation.

Someone Else’s Turn to Give a Hard Answer

It’s hard to say to families, “We’ll apply for SSAH and Passports, because the government needs to know that there’s a real need for these things; but don’t pin your hopes on them, because very few families get any funding anymore.”  I imagine that it’s even harder to be the family that has to hear that.

So, my question to my MP was going to be: “You keep talking about how we have to give the children and youth of Ontario a fighting chance. If the Liberals are re-elected, when will they decide to give the children and youth of Ontario with intellectual disabilities a fighting chance, and give their families some support, and lift the funding freeze on SSAH and Passports?”

Unfortunately, the town hall meeting ended before I got a chance to speak. But I got a chance to ask my question into an answering machine.

We’ll see if I get a response. :P

Update:  My MP himself called yesterday morning to answer my question. He needed a bit of information on the programs in question, but was able to talk about them in the wider context of government cuts that have been made over the past couple of years. I didn’t get the impression at all that he was trying to dodge my questions, and he was quite open about the fact that he didn’t know the specifics of what I was talking about but was willing to look into it. I was quite impressed that he even called back, and with his answer, considering that I really wasn’t expecting him to know much about it.

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Keeping up to…whomever…

I’ve read a couple of posts in the disabilities blogosphere this week about the difficulties that come from people with physical disabilities comparing ourselves to others. (This isn’t just the case for people with disabilities, by the way. It’s not generally a good practice for anyone.)

The “People Are Worse off Than Me” Trap

The blogs that I read talked about what happens when people with physical disabilities compare themselves to people worse off than themselves. The Smart-Ass Cripple (one of my favourite bloggers) talks about how his “Prayer of Self-Belittlement” helps him deal with the longing to be out of his room, up on a mountain-top in his chair, by shaming him into remembering that there are plenty of people who have it a lot worse than he does. Ruth Madison (a wonderful fiction writer, by the way) talked about the major pitfall in this way of thinking: when you start thinking, “At least I don’t have it as bad as that person”, you bring your awareness to the fact that there’s likely someone thinking that about *you*…and what do you do with that?

I sometimes tell people that I’m grateful that things turned out the way they did because lots of people have gone through the same surgery and come out a lot worse, but I don’t feel like it’s something that gets me stuck. Going the other way gets me stuck and has gotten me stuck since Day 1.

my avm story

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The “I’m Not Where Everyone Else Is” Trap

There’s a psychological concept called “social clock” – the idea that at a particular time in life, people are expected to have hit certain social milestones. The summer that I had the stroke, I went to a high school friend’s bridal shower. It seemed like everyone there was progressing nicely according to the social clock. They were done their undergrad degrees and either going into the workforce or starting advanced degrees. They were in serious relationships or married. Some of them already had kids. Their adult lives were beginning.

I’d dropped out of university after changing my major about six times, spent the summer goofing off in British Columbia with my best friend and a bunch of hippies, bled into my head during a job interview and was now relearning to tie my shoes. It’d be a couple of years before I tried independent living…working…dating…

I had a really difficult time letting go of the idea that I had to keep up with everybody else, and accepting that I couldn’t keep up everybody else because of my physical disabilities. I could only be where I was, and comparing myself to other people wasn’t going to change that. It was only going to make *me* feel bad about myself. I still struggle with this sometimes, even after God-knows-how-many hours of therapy since the stroke.

“Suck it Up, Buttercup”

But the bottom line of dealing with these “comparing” times is remarkably simple. I know now that they’re one of those times where I have to make a choice: Am I going to let the fact that I’m not where I thought I was going to be when I was…in high school, say…dictate what my mood is today?  Or am I going to suck it up, choose to think about the fact that probably 80% of us aren’t where we thought we were going to be when we were in high school, and just…get on with things?

It’s not an easy choice to make some days.

But ultimately the choice is mine.

The cool thing (well, most days it’s cool) is that I – we – all of us – always have a choice.

Here are the links to the posts I mentioned:

http://smartasscripple.blogspot.com/2011/08/my-prayer-of-self-belittlement.html

http://www.ruthmadison.com/better-than/

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