Differences Don't Matter

The following poem was written by Jessica Mercola many years ago as part of a diversity contest at her middle school. I found in in an issue of Exceptional Parent magazine back in 2002.

While she wrote about a "she", the sibling in her poem is actually a "he", her younger brother, who is 6 years old, has hypotonic cerebral palsy and profound developmental delay, is non-verbal and non-ambulatory and has the most gorgeous smile and eyes of anyone! [according to Mom and who are we to argue?]

I have brown hair.
She has blond hair. 

I have long hair.
She has short hair.

I am chubby and short.
She is skinny and tall.

I have braces and glasses.
She has freckles and cerebral palsy. 

I can draw, ride a bike and read.
She can't do any of these. 

I can walk and sit.
She has a wheelchair,
and tries to talk
but out comes noises,
silly ones. 

I like to chew.
She likes to go for long walks. 

I am stubborn and loud.
She is sensitive and caring. 

I am outgoing and fun.
She is different and interesting. 

I go to dance.
She goes to therapy. 

I drink from a cup and eat regular food.
She drinks from a bottle and eats pureed food. 

I like to play outside.
She likes to play with noisy toys. 

She doesn't make any choices.
We make them all for her.

I think I have a good life.
Hers could be better. 

Every day I watch her grow,
in sorrow, laughter and snow. 

I hope no one takes her away.
I would be lonely and miss her every day. 

I start every day with the positive
attitude that one day she'll be
just like me! 

I don't care what we are.
I love her anyway. 

I don't care what other people say.
We'll always be sisters and
the best of friends.
That's the way it's going to stay.

Cross-posted at A Primer on Special Needs and the Law

Anti-Bullying Legislation a Good Thing, Right?

Following the debacle of the Rehteah Parsons case last year, I was a little unsure of how the noises being made by both the provincial and federal governments about tightening up both the law and the legal process around the issue of bullying were going to work out.

Unsure because, really, can you actually legislate bullying out of existence?

And as far as Rehteah's case went, a sexual assault is a sexual assault is a sexual assault, is it not? Even if the police refuse to properly investigate the matter?*

But be that as it may, I initially thought it was a good thing when the federal government recently announced changes to the Criminal Code making it a criminal offence to spread intimate pictures of someone without their consent. After all, what could go wrong with that, right?

A lot, apparently. At least, a lot when you're talking about a federal government that is willing to be more than a little sneaky and turn its self- this proclaimed anti-bullying legislation into ... what exactly?

Apparently only about one and a half pages of the 65-page Bill actually deal with making it illegal to spread an intimate picture of someone without their consent.

The rest of the Bill varies widely, much of it giving the police new powers to obtain digital information (including lowering the standard required to get a warrant to obtain such information from having "reasonable and probable grounds to believe" a crime has been committed to having "reasonable grounds to suspect" a crime has been committed). And let's not forget the provisions about obtaining production orders against financial institutions for banking records.

But, wait, there's even more.

One section of the bill makes it illegal to use a device to hook up to a telecommunications service without lawful payment. It’s not clear whether computer programs count as a device, or if the proposal could be broad enough to punish something as common as hooking up cable without paying for it or accessing a locked Wi-Fi signal. 

Now whether or not these amendments are "good ideas" is not really the point.

No, the point is this - how dare the government try to sneak in all these totally unrelated criminal provisions under the heading of "protecting children from cyber-bullying"? And how dare the media go along with that characterization, happily proclaiming the new legislation as being about protecting our children from cyber-bulling, full stop, until someone stood up and demanded that the truth be made known?

This is so whether or not one thinks these amendments are a good idea. And I say that despite the fact that one, in particular, I do believe is a very good, appropriate change. Just not one to be characterized as above.

You see, one of the amendments expands the definition of “identifiable groups” that can be the subject of hate speech to include a person’s age, sex, mental or physical disability and national origin. And this particular change, I firmly believe, is a very good thing.

One of the reasons why the writer of this vile hate-filled "letter" could not be prosecuted was because individuals with physical or mental disabilities were not included as an "identifiable group" under sec. 318 of the Criminal Code.  You see, while it is a crime in Canada to "advocate or promote genocide" based on colour, race, religion, ethnic original or sexual orientation, neither age, race, sex nor physical or mental disability was included. From which one can only (wrongly) presume that it is, indeed, okay with Canadians to advocate killing off, amongst others, persons with disabilities.

That it was only after this incident that the government stepped up to amend that section is sad. But the fact that they are willing to do so now is a good thing. Although apparently they were not so anxious for anyone to actually realize they are doing a good thing ... after all, they could have scored points with many Canadian citizens had they proclaimed the fact that they were making this change instead of hiding it among so many other hidden amendments.

By the by, no one should have any trouble with this particular amendment, should they?

Well, the British Columbia Civil Liberties Association, of all people, apparently is not in favour of this proposed amendment.

“Imagine your rant about children today. Your rant about men this, women that. The question is what on earth is contemplated here,” said Vonn. 

“Which is not to condone hate. We don’t do that. But we are talking about some very serious provisions of the Criminal Code. 

In particular, Vonn said she has heard concerns from the Palestinian community that protecting national origin could criminalize harsh criticism of Israel.

Perhaps some legal education is called for here.

First of all, "rants" are not criminalized. Neither before this proposed amendment nor afterwards.

What is (and, just for the record) has been criminalized) is "advocating or promoting genocide" and "publicly stirring up and inciting hatred" against an identifiable group. So unless someone would believe that you're seriously calling for the death of all children or all members of the (presumably) opposite sex you should be okay.

And about those Palestinians - correct me if I'm wrong (and I know you will) but aren't chances pretty good they were already covered by the term "ethnic origin"?

Then again, should I really be surprised?

After all, we have a government that is unethical enough to try to put this one over on the very people it has been elected to serve and a media who was either too complicit or too stupid lazy to actually do its homework (as in, actually read the proposed legislation) and initially call foul.

Why would I expect the BC Civil Liberties Association to be any better? My bad.

* The much-belated recent police investigation falling, in my mind, in the category of "Too Little. Too Late."

When Words Fail Me ...

This video speaks for itself.

But the saddest scariest thing is this woman is not alone. She may be the only one brave enough to actually type and deliver such a letter, but I can guarantee you she's not the only one who thinks such thoughts.


 


Perhaps most of those who do would never suggest that a child, any child, should be euthanized or his "non-retarded body parts" donated to science. But they wouldn't hesitate to express their belief that such children should not be going to their neighbourhood schools, should not be participating in the same extracuricular activities as their "normal" children do; perhaps, even should not be taking up scarce dollars in our healthcare system.

We would like to believe that human beings are inherently good. That, most of the time, if we just give them the chance, they will do the "right thing".  Maybe we're right - maybe most are.

But something like this has to make a parent wonder how many more monsters are hiding in the darkness or behind the annonimity of their keyboards. And shudder at the thought.

H/T to Krista Lettues for the video

Cross-posted at A Primer on Special Needs and the Law

World Record

I think we just set the record for the world's shortest IPP meeting. Ever. Well, at least the shortest one I've ever attended in 15 years of being involved with special education.

The funny thing is how I walked out of the world's shortest IPP meeting feeling quite good about the whole thing. Better than I have in the past 3 years of IPP meetings, in fact. And that after half an hour as opposed to the usual 1.5 - 2 hour meetings.

The reason, you ask? Might shorter, in and of itself, actually be better?

No. No, not at all. In fact, we have another IPP meeting scheduled for next week (minus the subject teachers who were present today but with the addition of the autism specialist) that I am sure will run much closer to what I am use to.

No, here, my dear friends, is the difference. Today's meeting was (finally) chaired by a Resource teacher that gets it.

Previous Resource teachers, although extremely experienced, who should have (and, no doubt, did) know their stuff, were so stuck in their ways of doing things that there was absolutely no room for anything different.

Did I mention there was no room? Because, really. There. Was. No. Room.

I'm sorry, but the term dinosaur does come to mind. While they may have been very good at what they did many years ago, they clearly couldn't (or, I'm thinking, more likely wouldn't) adapt to the times. It was their way. Or the highway.

But our current Resource teacher, while relatively new to "Intensive Resource", has family members with disabilities and he really seems to get it. To get the importance of life skills for a young adult like the Blue Jay. To get the importance of life skills for so many of the students in that class.

I can actually see him building a resource program that will be so much better than what this school previously had. I can actually see it benefiting so many more students. My only real complaint is that the Blue Jay didn't have access to such a program three years ago, when she first entered high school, as she should have.

Well, that and the fact that when our previous dinosaurs teachers ruled the land, nobody (and I mean nobody) seemed to have any issue with the way things were done or the way they insisted things had to be done. They were backed up all the way.

Nope, nobody had any issues with them. Nobody except me, that is.

Interestingly enough, now that they've retired, I am finding people starting to agree with what I've consistently been saying (and thinking) for the past couple of years - that things didn't have to be (and, in fact, shouldn't have been) done their way. That, dare I say it, these particular teachers were the problem.

Apparently, now they are. But then they weren't. Go figure.

Telling It Like It Is

Kudos to Dr. Brian Hennen for telling it like it is when it comes to life for persons with developmental disabilities in Nova Scotia.

I met Dr. Hennen and his colleagues for the first time the end of May when I took the Blue Jay to a transition clinic for young adults in Halifax. And I must say that I was very impressed with what they were/are doing - armed with the latest clinical guidelines for the care of adults with developmental disabilities, Dr. Hennen (a psychiatrist) and Dr. Clarke (a family doctor), joined by a supporting cast of a few other doctors and nurses offer a complete assessment of the young adult's physical and mental health, making appropriate recommendations to the family doctor for continuing care and, where necessary, referrals to other specialists.

Yeah, I was impressed - because really, how often do individuals with special needs (particularly adults) appear to be after-thoughts found on the side of the road, left to fend for themselves best as they can? Whether it be the health system, the criminal justice or elsewhere, this sadly appears more likely than not.

So I guess I shouldn't have been surprised to see Dr. Hennen's op ed in today's paper - an op ed which essentially sets out Nova Scotia's history (the good, the bad and the ugly) over the past five years in dealing with persons with developmental disabilities.

Offering both kudos and criticism where appropriate, Dr. Hennen notes the self-assessment undertaken with much fan-fare in 2008 by the Services for Persons with Disability (SPD) program, following which fewer than half of the resulting recommendations were fully implemented to the two reviews conducted by that same program following reports of abuse at a residential care centre in 2010 and the terrible treatment of an autistic young man in the Braemore Home in Sydney in 2011; both resulting in numerous recommendations, few of which were actually acted upon.

From research showing that half of the 156 adult Nova Scotians with developmental disabilities interviewed were unhappy with their living arrangements to the April 2011 report to the Standing Committee on Community Services concerning the inadequacy of residential options available to Nova Scotians with developmental disabilities (including the fact that one-third of individuals referred with developmental disability and psychiatric or behavioural challenges did not actually have mental illness, but were troubled by the inappropriate residential situations in which they had been placed). Kudos to the committee’s members who actually had the guts to admit their lack of awareness of the key issues.

From the Early Intensive Behavioural Intervention program for pre-school children with autism started in 2005 (for which demand far outstripped supply) that five years later finally opened its door to allow access for all such children to the highly successful Access to Community Education & Employment (ACEE) program, piloted in 2007, that offers a one-year program in life skills and vocational experiences to youth following the completion of high school, which was finally awarded secure funding in 2009.

Alas, Dr. Hennen fails to note the ACEE program (like so many) is only available to youth who reside in the Halifax Regional Municipality, leaving many, many who could benefit from it out in the cold (and most likely stuck in high school until they are 21 due to the lack of any other options).

Looking forward, Dr. Hennen notes that although that five years ago teaching programs for health professionals had little developmental disability content, the new undergraduate curriculum provides medical students with a minimum of 13 hours of such content over four years, with a further six hours of inter-professional learning about developmental disabilities planned. Family practice trainees will also have defined learning experiences in each of two years of training.

Leaving us exactly where, you ask?

I could do no better than offer Dr. Hennen's final words in reply.

As are other jurisdictions, Nova Scotia will be judged by how well it supports its citizens with developmental disabilities in their bid to live independently and contribute to our community. As care providers, teachers, advocates and government departments, we know we can do better. 

Cross-posted at A Primer on Special Needs and the Law

Purple Passages

Monday, March 26, 2012.

Here it is. Yet another Purple Day.

The thought of which, at the moment, leaves me feeling totally exhausted.

Please don't get me wrong - I love Purple Day. My family loves Purple Day. In fact, it is the only one of the few only things we all do together.

But it's been a hell of a ride the past few weeks - flat out with too many things to really mention here (suffice to say, I am working with an amazing business/public speaking coach who is really helping me rework my flagship presentation - but it's a lot of work I am trying to accomplish by the date of my next speaking engagement on March 31st. While, you know, working. And doing everything my often interesting life can entail).

And then, of course, there was is Lex. Which, although that pain will be felt for a good long while, at least I'm thinking (hoping) that the worst of it is over.

But back to Purple Day. For a moment, please.

There were purple things that simply had to be done.

Such as getting everything to our neighbourhood daycare who so graciously agreed to do a Purple Day Bunny Hop (fundraiser) on very short notice. Thanks to yours truly. The short notice part, that is.

And cupcakes. Let us never forget the cupcakes.

Five dozen for the Blue Jay's high school - where Purple Day (complete with the provision of purple cupcakes, for a donation, of course) has become an annual tradition.

Then another three dozen for Purple Day at the Mall. Which, unlike the ones for school (part of Purple Day at the high school involving the students in the Blue Jay's resource room decorating the cupcakes they sell), these particular ones required decorating. So decorate we did.

In between working in Halifax on Friday and returning to Halifax on Saturday for a Circles workshop and before Purple Day at the Mall. On Sunday. Which would usually be done on Saturday, but I am still working on that whole being in two places at one time thing. To date, results have been ... shall we say ... mixed.

And so we spent yesterday afternoon at out Purple Day table in the Mall. Sunday was of course a bit slower than a typical Saturday, but a good time was had by all.

But when the Blue Jay and Kit Kat headed off to the Blue Jay's school this morning with their 5 dozen cupcakes, to meet up with the teachers who had agreed to provide another four or five dozen, I breathed a sigh of relief, rolled over and went back to sleep. Feeling like I deserved it, after all.

So although I am all decked out in my purple finery today and did manage to get to the grocery store to transport the Purple Day Cake I had ordered, special-like, to the little ones at the Daycare to thank them (because, let's face it, all that hopping can take a lot out of a body and it requires a  high dose of sugar to replenish itself), that is about the extent of my energy for this particular Purple Day. And for anything else today, too, I'm sad to admit.

But life goes on.

Indeed it does ... I know that for a fact because Kit Kat turned 16 a couple of weeks ago and the Blue Jay will have lived on this earth a full 19 years, come Thursday at about 3:30 in the morning. Yes, I do believe I remember that.

But 19? Really?? You've gotta be kidding. And speaking of such things ... ummm, I guess that means I better get shopping soon, huh?

Alas, there's more to being a 19-year-old Blue Jay than cake, friends, bowling and gifts. Nope, that would be too easy. You see, it's also the time my darling daughter transitions from the child to the adult system. Meaning it's the time that she is "assessed" to see where she might be placed "fit" in that lovely "continuum of services" offered by the province's Services for Persons With Disabilities program.

So that was interesting, it was.

While I met with our caseworker's supervisor to discuss the issue of how guardianship might affect the Blue Jay's eventual eligibility for the Independent Living Support Program, the Blue Jay, herself, worked through the assessment tool with the worker. They had made it about three-quarters of the way through when I returned to join them. And I must say that I was very, very impressed with the Blue Jay - with her unexpected (at least to me) insight into what she could do on her own and where she needed help. I do believe she might just be growing up. With or without my permission, apparently.

That interview took a lot out of her, though.  After a full day at her one-day-a-week work placement through school and that rather lengthy appointment, she was pretty much (understandably) wiped out for the rest of the day.

And so it goes, I suppose. We move into the next phase of her life, ready or not.

And thus it was, that driving home from that appointment Thursday afternoon, I couldn't help but think ... It's been a wild ride, honey. Hang on for Part II.

Heartbreaking

UPDATE: Today, Monday, January 23, 2012 is the first annual International Day of Mourning, born out of Dave's original blog post featuring this video. Spread the word, please.

 

The video speaks for itself when it comes to the issue of institutionalization.

The only comment I might make that many, many years ago (longer than this video might portray), the world was a very different place. Without even the often sadly-lacking services that we have now. For the parents that made that decision in those times, they don't need to be characterized this way.

Of course, that, in no way, justifies the money governments continue to pour into institutions (including the building of new ones) for the current generation. Because that ... Is. Just. Wrong.

H/T to Dave at Rolling Around in My Head via Ashely's mom at Pipecleaner Dreams

Success

About our little adventure in trying to get out youngest daughter into that private school for learning disabilities ... I have only one word to say.

Success.

Okay, maybe nine words ... Thank you Lord. And Thank you Dept of Education.

And, trust me, the latter are not words you would ever often hear me say.

Next up is applying for the Tuition Support Supplement and seeing how much of a bursary she migtt be eligible for but we are definitely over the biggest hurdle...

Hard

So it's been a bit quiet around here the last few weeks. Meaning quiet at Free Falling. Not exactly so quiet in my life.

Having made a very last minute (although not because it was left to the last minute) decision to try and get the Kit Kat into our local, extremely expensive private learning disabilities school, it has, in fact, been rather crazy around here.

This was something we had been contemplating two or three years ago but because our school board refuses to give IPPs to students with learning disabilities and, without an IPP, a student in Nova Scotia isn't eligible for the substantial chunk of funding available through the Province's Tuition Support Program ... it pretty well seemed out of reach at the time.

So imagine my surprise when, sitting in a meeting with the Minister of Education a couple of weeks ago on what I thought were totally practically unrelated issues, I happened to spontaneously bring this issue up in a  discussion concerning inequality between school boards and I was told that students in our particular school board didn't need an IPP to access the program.  After picking my jaw up off the floor, I made a valiant effort to move on with the meeting because, trust me, I couldn't actually say out loud what I was thinking at the time. 

You see, back when this issue had come a few years ago I had approached the Dept of Education with the fact that our Board refused to provide IPPs for LD students and was told that no, I must be mistaken, that wasn't allowed but they would check into it and get back to me. When they finally did get back to me, a few months later, I was given the brush off with some comment to the effect that perhaps my daughter didn't require an IPP. 

Given that my Mom had been recently diagnosed with a terminal condition (this was about six to eight months before she passed away), I wasn't in any position to take on the battle so I let it slide.  And then, suddenly there I was being told that this change in requirements about the necessity of an IPP had been made right about the same time as I had made my enquiries of the Department. Imagine that ... funny how no one had bothered to let me in on that little secret.

At any rate, such began the mad rush to once again check out the school and begin the stack of paperwork needed to 1) apply for admission; 2) apply to the government for Tuition Support funding; and 3) apply for a bursary.  Because given our current financial situation, unfortunately there's very little we can contribute at the moment to the cause. Although I might point out that, ironically enough, back when I had initially inquired about this (and was turned away), we had actully been in a position where we could have contributed something to the cause.

And, oh yes, lest we forget, one more little detail to be taken care of ... the person who had advised me in that meeting that students from our Board didn't need an IPP to qualify for the Tuition Support program quickly backpedalled when I phoned him up a few days later; no, of course, he hadn't said that; what he had had meant to say said was that new program parameters now allowed a student to be "working towards an IPP".  Whatever that means. 

Well, apparently that meant that I had to very quickly call a meeting of the Kit Kat's Program Planning Team at her former school (wait, did she even have a Program Planning Team??!!) to see if they would agree that she should be working towards an IPP. 

But all things come to those who wait work hard enough ... or so I hope, anyway.

The private school agreed that the Kit Kat could start with the other students the first day of school even though we didn't (and still don't) know if we will get any funding from the Province.

And the Kit Kat ... well, let's just say she's working on "adjusting" to her new reality, tenuous as it might be.  She had been completely behind this move and I had warned her to think long and hard about it before I put the works in motion because once I started, there would be no turning back. I had also pointed out that her biggest challenge in the new school would most likely be her lack of friends.  Because it's hard for any teenager to change schools and make new friends.  And it's even harder for a kid with a learning disability. And harder again still for a kid with a nonverbal learning disability.

So, while we still don't know if we will get the funding to make this work, we remain hopeful.  And if the answer is no, there is, of course, always an appeal process. Oh joy, oh bliss.

In the meantime, while we await word on that and the Kit Kat adjusts to some very big changes in her life, I have now begun the even larger stack of paper work necessary to get some additional services for the Blue Jay. Because, one thing about my kids, they never want to play second fiddle to the other. Meaning if one is demanding all of my time and attention, the other one will be sure to soon follow.

Headwinds and Tailwinds *

I have become quite a fan of a new blog I discovered a few months back.  The name is Kilometres for Communication - you can find it on the sidebar.

What's it all about you ask?

This blog is about communication. It’s about a special kind of communication called AAC. (I personally struggle with this term; it stands for Augmentative and Alternative Communication, which is too much of a mouthful for me. AAC is simply an alternative way to communicate when someone has limited or no speech.) This blog is about disability, and navigation of disability in a society which orients itself towards people who are able-bodied. But this blog is also about ability, diversity, capability, possibility, hope. It is about our humanity, and about our connection–one person to another. It is about community and inclusion, and about how wrong it is for any of us to exclude and to make the decision that someone does not belong because he or she is different. So this blog is also about the importance of accessibility, because accessibility is a key to inclusion, belonging and community.

A family affair - the 17-year-old younger brother of "an artist, educator, social activist, writer, story teller, gardener, community facilitator [who] happens to travel in a wheelchair and communicate with AAC" proposes (family in tow) to cycle across Canada to ... well, how about if I let them tell you?

We would meet with people who speak in creative and diverse ways, and with the help of the media, introduce them to Canadians so that never again could they equate not being able to speak with not having anything to say. We would invite people to wheel, walk, run and cycle with us, and we would invite organizations, small groups of people and individuals to host events across Canada to raise public awareness and funds to empower voices and to make accessibility and inclusion a national priority for the more than 3 million Canadians with disabilities.

Although a lot of people have walked, ran, biked, etc. across Canada to raise money and awareness on issues like cancer and for other "good causes" and the man in motion is back at it (actually I'm not sure he ever really stopped), I've never heard of anybody doing quite this. I've never heard of anyone giving a voice to people who struggle to communicate in our world quite this way.

And, as if that weren't enough, Skye (the main writer of the blog) often amazes with such a beautiful voice for such a young man.

The blog sets out his cycling journey from West to East coast (he is currently in Manitoba) but he ends many of his posts by connecting the logistics of his travels to the point of his journey.  Such as he did on Day 4 - West Vancouver to Mission BC, traveling through the mountains in British Columbia.

We all need to be explored. It’s a tragedy that there are people on this planet whose speechlessly brilliant summit will never be discovered because the people around them don’t realize that the hike is worth it. Remember this: the hike is always worth it. Always assume ability, and listen with the patience, care, and effort that you would want anyone to listen to you. Often, the hike is the best part.

Even though I have friends whose young adult children are non-verbal, the world of AAC (augmentative and alternative communication) remains foreign to me.

And so it is that, as if through a lens, I follow Skye's blog and observe and learn and think more and more about what it must be like to have people assume you have nothing to say simply because you find it difficult to communicate or to have them walk away as you struggle to communicate because they don't realize that's what you're doing (or maybe they just don't care) - I mean, it's a busy, busy world we live in and I can only stand here and wait so long, you know.

Tick. Tock. Tick. Tock.

But today's blog post was written by his mother, Gail, and titled "Headwinds, Tailwinds, Lessons Learned" (* hence the title of this post).  It was these two paragraphs that really caught my attention - and made me reflect on our own life with the Blue Jay.

It is now a number of days after I originally began writing this blog entry. I’m sitting in the RV by the side of the road in Moosomin, Saskatchewan, waiting for Skye to appear on this windy, rainy afternoon. By the time he arrives, he will have pedaled 48 kilometres since we last met. The promised tailwinds that are supposed to assist Skye on his journey have been elusive. Tomorrow, they are supposed to blow tomorrow, just as yesterday, they were supposed to blow today. It’s a mental challenge, waiting for these helpful tailwinds, yet getting back on the bike to pedal in the face of more headwinds.

In so many ways, this is the story and the feel of Kerr’s [Ed. Sky's brother] life—the hope and promise of helpful tailwinds; the disappointment when instead he is met with headwinds: the funding that doesn’t come through, the education that doesn’t happen, the waiting lists that never seem to get shorter, the well-trained assistants that need to move on in their lives. How does Kerr—and how do we with him—get back on the bike and keep pedaling?

Headwinds and tailwinds, indeed ... that would be a good way to describe our current experience with attempting to help our now 18-year-old daughter master that transition from childhood to adulthood, which can be hard enough for any adolescent but so much more challenging when you're ... well, challenged.

I must admit that I have felt somewhat like a bull in a china shop of late as I struggle mightily, furiously (and yet often it seems in vain) to help her access the services she currently so desperately needs.  Transition planning and more work on life skills at school.  And counselling or meds (but why would you choose medication when you have a pretty good hunch that counselling would do the trick, if only she could access it?) in managing her emotions, letting go of obsessive thoughts and learning better social skills.

But she's too high-functioning.  And yet not high-functioning enough.  She is too old.  Or she doesn't qualify because she's mentally challenged.  Or she doesn't meet some other criteria for service to this or that group because ... fill in the blank. I've pretty much heard it all as of late.

And yet, despite the headwinds I seem to battle, on a daily basis, at every turn, every once in a while I will find myself screaming talking to the right professional, a person who can and does seem willing to make that extra effort to find the Blue Jay the help she needs.

Talk, of course, is cheap.  And the proof is (and always will be) in the pudding.

But when I somehow stumble upon those rare individuals who actually seem to hold out hope (of doing baseline testing and setting appropriate work and life goals at school or the elusive referral to the psychiatrist that specializes in adolescents with various challenges or ... is it really too good to be true ...the possibility of a way to access funding for one-on-one counseling), it's like suddenly coming around a bend during a seeminly never-ending uphill climb and unexpectedly finding the headwind you've been battling might just be gone.  And perhaps, just perhaps, the wind might actually be at your back for a change.

I'm hoping Skye will soon find those elusive tailwinds.  And that people will pay attention to his cross-country journey and, more importantly, the reason he is doing what he is doing.

At the same time, I hope this isn't just some trick or sleight of hand and my own headwinds are finally diminishing.  Wish us all luck. We will need it.

They Never Had A Chance

Our provincial newspaper has just wrapped up a five-part series looking at "care options available to vulnerable person with intellectual disabilities across Canada".  The series was well done (the writer, Canadian Press reporter Michael Tutton, writes a fair bit in regard to issues around persons with disabilities) and it was an interesting, albeit hard read.

From the woman in Nova Scotia whose 20-year-old grandson spent 15 days locked alone in a constantly lit room at the Braemore adult residential centre with only occasional breaks, urinating in a corner when he was unable to get a staff member’s attention...

... to the aging mother in Newfoundland who worries who will care for her severely-challenged adult son when is was no longer around to do so...

... to the 16-year-old with a severe case of fetal alcohol spectrum disorder (making him impulsive, easily frustrated and with very little short-term memory) whose increasingly violent behaviour deteriorated to the point where his adoptive parents could no longer care for him in their home but whose current life in small group homes has been a disaster, allowing him to stay out all night, drinking and doing drugs...

... to the issues of aggression that can stem from poor housing options and lack of access to mental health services for those with intellectual disabilities (an issue I can personally speak to when it comes to the Blue Jay being denied access to our local child and adolescent mental health services for the simple fact that she is mentally challenged).

To the one bright spot, the what can could and should be - namely, the positive effects of housing and care options that actually work, like L'Arche.

A happy, safe home and community involvement - at some level, isn't that all any of us really want for our children when they mature into adults, whether they be mentally challenged or not?

And yet, I write not about any of those stories today. 

Instead I write about a baby boy "who never had a chance". 

His young mother squatted on the bathroom floor to deliver him while the baby's father stood in the doorway, smoking a cigarette and ignoring her pleas to call an ambulance. Finally she reached over to the bathroom sink, grabbed a pair of scissors she believes her boyfriend used for his dope and cut the umbilical cord.

The baby wasn’t crying. She left him on the floor, went out into the living room, sat on the chesterfield and watched television as Cunningham cleaned up the bathroom.

The infant was dead at birth, she said. "He wasn’t crying or breathing or nothing."

Oickle testified at Cunningham’s preliminary inquiry last December that she saw Cunningham put the baby into a box and then put the box in a derelict oven in the hallway outside their apartment.

The body stayed in the oven for five days until family members found out about the birth and persuaded Oickle to take the baby to nearby Queens General Hospital.

As sad (and depraved) as this is, unfortunately, it's not uncommon. And, thus, it was this part of the story that really grabbed and held my attention.

A neuropsychological assessment and a forensic report found Oickle fit to stand trial and criminally responsible for her actions, although she has an extremely low IQ — in the bottom one percentile of the population — and limited coping and problem-solving skills.

Bryson said those factors help explain Oickle’s actions.

Defence lawyer Franceen Romney, who represented Oickle, said the assessment shows Oickle is able to handle routine situations but not complex ones. In such cases, her reasoning, judgment and ability to make decisions are impaired.

An IQ in the bottom one percentile of the population means that this young woman "officially" qualifies as being "mentally challenged".

Given that we have no information about the boyfriend's "mental capacity", I can make no judgment in that regard although I must admit that a great deal of my anger is directed against him. He who callously stood by and refused to make a simple phone call (or even allow his girlfrind to do so) while his own child was dropped onto a bathroom floor and then scrubbed up that same floor, placed the baby's dead body in a box and leaving it in a derelict oven in the hallway of their apartment building.

I am deeply saddened by this young woman's story.  Fortunately, some sort of justice seems to have prevailed in that although she was convicted of failing to obtain assistance during childbirth, she was placed on probation for three years, during which time she must have no contact with her boyfriend, get mental health counselling and live with her parents.

Am I too easily "letting her off the hook" for her actions?

Or am I looking at my own 18-year-old daughter, with similar ability levels, for whom I fear a society that would just as easily manipulate and hurt her?  I must admit that I think that being "forced "to live with her parents is likely the best thing that could possibly happen to this young woman. 

After all, what other options are there for her?

Creative Writing - Potential Op Ed Piece

UPDATE: This was published as an op ed piece in the Chronical Herald on May 19, 2011. Not quite the headline I was going for but we will take what we can get.

It's a good thing I'm not Ralph from The Honeymooners because I'm seriously tempted to threaten to send the Nova Scotia Department of Education "straight to the moon" at the moment.

First, the Department amends its Teacher Assistant Guidelines to eliminate any reference to supporting the teaching of students with special needs or providing "support for instructional program", leaving the only remaining job responsibilities of a TA as "personal care" and "safety/behaviour management support". If you don't have a child with special needs or aren't otherwise involved in the school system, that may not mean much to you. But if you do, it’s not hard to picture exactly what that bodes for the future.

Now, we learn that a review of the Province's public education system is calling for the Province to "consider reducing the number of teaching assistants in special education". Does anyone else see any connection here? Is this the beginning of the end of a proper education for our children?

The Province's newest Teacher Assistant Guidelines provide that "Teacher assistant support should be considered only when the student cannot perform prescribed outcomes independently, as determined by the program planning process" but I have to wonder how even those students will receive support when 1) supporting students who cannot meet prescribed outcomes (independently or not) is most definitely no longer part of a TA's job description and 2) the current recommendation is to cut back on the number of TAs when many would argue we don’t have enough to do the job now.

I find Mr. Levin’s concern about the number of students receiving special education services due to an increase in the "soft" areas of identification, like “students thought to have learning disabilities or behaviour problems” rather odd. If he had spent any time at all in Nova Scotia's schools he would know how difficult it is to obtain any special education services for such students. Students are not considered to have a learning disability simply because a parent or teacher thinks this may be so; services won’t be offered (if at all) until a student has been diagnosed by a qualified psychologist. And, given the wait times to be seen by a school psychologist, students can literally wait years for that type of assessment.

Better Late Purple Than Never

Some might say Purple Day 2011 has already faded into the sands of time. I, however, beg to differ.  After all, as long  the EANS will be the beneficiary of the upcoming Lions Breakfast this Saturday, courtesy of Purple Day, I say it's still fair game.  Which is a good thing, considering I haven't had an opportunity to do any Purple posting until now.

So. Purple Day. 2011.

It having been a bit of a crazy few months in the Free Falling world, we didn't manage to paint our little corner of the world quite as purple as we did last year.  But we still made a respectable showing, I believe.

Horton High School once again took up the cause, with the Blue Jay (this year, with the help of the Kit Kat)  and her classmates again selling purple cupcakes, handing out information and taking donations.  She also had the chance to make a school-wide announcement and explain the purpose of Purple Day before the big day, which was nice.  And it appeared that the whole school pretty much really got into the spirit, with Purple Day posters lining the walls and a sizable portion of the student body decked out in their finest purple gear.

We hit the local Mall again this year, actually, we spent all day Saturday as a family affair at the Mall, where we once again sold bracelets and purple cupcakes, handed out information, pins and ribbons and took donations.  Mucho donations.

Well mucho, considering I have never approached our Mall adventures with the intent of them being fundraisers; their primary purpose is to educate people and get a conversation going.  So it was very gratifying to see now only how many donations we got (and how many $20 donations, at that!) but also how many more people were aware of Purple Day this year than last.  The word is clearly getting out there.

Our family has struggled through a long and often painful journey with epilepsy.  Not as long, not as painful as that some families have and will continue to go through but certainly longer and more heartbreaking than any child or anyone who loves a child should have to face.  And no matter what the future brings for the Blue Jay, I will always be eternally grateful for the past several years of relative peace.  The Blue Jay's life is still not easy (and likely never will be) but things are so much easier for her (and, thus, all of us) when the ugly seizure monsters are held at bay.

And yet, really, I think it's the very fact that the Blue Jay's seizures are so well-controlled at the moment that motivates me to be so involved with Purple Day.  True enough, were it otherwise, I would no doubt be equally but differently motivated to take up the cause, both on her behalf and for so many others.  But for now, it's the fact that we have it so much better than so many others, that we have found, even if turns out to be only temporarily, our magic panacea for her seizures that makes me appreciate how lucky we are and how wrong it is that others out there are still in the position we once were.

I suppose we will always be a Purple family.  Actually, perhaps more accurately, I truly hope that we will always be a Purple family.   There are many, many "good causes" in the world and no one person can take them all on.  But person by person, family by family, we all can make that extra effort to support and promote at least one. 

Epilepsy has touched our family deeply and will always leave a scar.  But I believe it has also left us with something else, something positive and good and pure - the requisite empathy that moves compels us to step up and contribute our small piece to the far larger effort needed to help others who continue to fight a daily battle, not only with this often devestating neurlogical disorder, but with the equally, if not sometimes more damaging, effects of public misconception and the resulting social stigma.

So what cause is personal and near and dear to your heart?  And, more importantly, what are you doing to help make life better for those who live it?

The Art of the Possible

Coming Together To Create Change - A Values, Vision and Action Workshop - the name of the Conference the Kit Kat and I attended this past weekend at the Oak Island Inn.

Co-hosted by both the CACL and the NSACL, it was Part One in a series designed to encourage family leadership in the continuing (some might say never-ending) struggle to obtain for persons with disabilities those things that you and I take for granted - the opportunity to go to school and be educated with our peers, to hold a job (true enough, there may be many days when we would rather not work but have you ever considered life on the other side of the coin?), to choose where and with whom we will live ... to live inclusively in society.

And it struck me yesterday evening (as I suffered through the migraine from Hell) that for me, personally, we could just as easily have renamed yesterday afternoon "The Art of the Possible".

We watched three separate video clips of "success stories" from across the country - in the first, a severely challenged young woman, Amber, moved from a group home into the home a former paid caregiver who had now become a real friend. This truly was a win-win situation for Amber as she now lived as a young adult in a room-mate situation as opposed to as a child in her parent's home or in an instiution, developed a second extended family who embraced her as one of their own, was clearly happy and well-cared for and once again lived nearby her biological family.

In the second clip, we met a young man, Chris, with a keen interest in all modes of public transportation - planes, boats or trains (especially trains); if it moved, he wanted to be on it. After making the move from a group home to his own rented house for a time, he was eventually able to purchase his own home with the help and guidance of his "microboard" - a team of family, friends and service providers who worked together to secure his future. With three paid caregivers, all close in age to Chris, who worked 48-hour shifts (which gave him much more consistency and flexibility in setting his own schedule than the standard three eight-hour shifts per day), he was able to be active and engaged in his community.  And, of course, ride a lot of trains.

And although I had trouble fitting my head around the third clip, it was, perhaps, the most empowering for me, personally. Would you believe that for the past 20 years, students with intellectual disabilities have been attending University in Alberta? Not just community college, but University? Attending and  actively participating in academic classes and intramural sports teams and "graduating" with a certificate right alongside their non-disabled peers?

Yes, I am the first to confess that I have a fair bit of difficulty seeing how that University experience could actually work for these students, but the three clips were certainly an exercise in the art of the possible for me, personally.

You see, for the past few years, we have had this semi-vague, semi-formed plan which involves the Blue Jay attending the NSCC after she finishes high school. The provincial community college system has become much more disability-friendly over the past several years, allowing students with special needs to access the accommodations necessary for them to obtain diplomas in their chosen area of study or, if they are unable to meet all the course outcomes, to participate in those portions of the curriculum that they are able and graduate with a list of employment skills. Since the Blue Jay has a strong interest in cooking, this seemed like a plausible possibility for her future.

But a few months ago, in a conversation with her resource teachers, in which I mentioned this plan (not for the first time) in passing, I was clearly and firmly told that the NSCC was not for the Blue Jay. That those programs were for persons who had an aptitude in a particular area and wanted to develop some more skills. That this was not the Blue Jay.  As I was literally walking out of the room when the comment was made, I simply observed that we would have to agree to disagree on that one. And then exited. Stage left.

And although the comment stunned me somewhat at the time, I really didn't think it had had that much effect on my thinking. But at the end of the day yesterday, I realized that ever since that day, those remarks had been subtly working away at a subconscious level and were starting to make me doubt the appropriateness of our plan. A plan which, by the way, the Blue Jay is fully behind and excited about.

Let's just say that is not so much so anymore. If students who are mentally challenged are successfully attending university with their more typical peers (even if that isn't an option I can picture for the Blue Jay), who are these teachers (or anyone else for that matter) to say that community college is not an option for the Blue Jay, to categorically state that she can not go there?

No, were I to hear those words again, I do believe my response would be much more along the lines of Well, too bad what you think. She has the funding available and if she chooses to go, she will go.

The art of the possible, indeed.

And yet, lest I forget, I witnessed something else equally inspiring and thought-provoking this weekend. Not only did the Kit Kat devote her birthday weekend to attending this Conference (where she was by far the youngest and the only non-parent present), she was actually the moving force in getting both of us there, convincing me that this was an event we should attend.

Yup, I was very proud to stand up today (on her 15th birthday) and acknowledge my daughter in front of our fellow conference participants. She's grown into quite the young lady.  On some days, anyway.

Who Are We To Define DisAbility?

H/T to Ashley's Mom at Pipecleaner Dreams

If I Had My Druthers ...

A bit of a personal missive this evening (I know - most of them are lately) - some of my readers will know that I have two children with special needs.  Two teenage children, to be exact.  My oldest daughter has a laundry list of labels and diagnoses - mentally challenged, PPD, speech/language disorder ... none of which accurately describe her - and my youngest has a learning disability.

As I walked out of my oldest daughter's IPP meeting today and into the bright sunshine, it struck me that many days it really doesn't seem to matter how much or how well you think you know the law or which government entity is responsible for this or that - creating something meaningful and functional for our children seems nearly an impossibility.  The key words here are, of course, meaningful and functional.

It I had my druthers, Nova Scotia's Canada's education law would be very similar to that in the US.  We would have legislation similar to IDEA (Individuals with Disabilities Education Act) - which, admittedly, would be somewhat difficult given that IDEA is a federal law whereas, in Canada, education is a provincial responsibility - which actually had some teeth in it, which actually gave parents meaningful rights and a process to challenge a school or school board's actions (or inaction). 

Yes, that's what we would have as opposed to the current namby pamby wishy washy excuse we have for legislation - legislation which uses much of the language in IDEA (such as guaranteeing our children an "appropriate education") but lacks both the process and the teeth to back it up.

I have definitely discovered that high school is a whole new ball game when it comes to IPPs.  From everything from the way they are created to the way they are reviewed and implemented, it is, quite simply, different.  And much harder, from a parent's point of view (or at least from my point of view) to meaningfully participate, to offer meaningful input that is actually included in the IPP and to get information as to how well the goals, once they are finally created, are (or are not) being met (and no, I don't mean the pathetic excuse for "reporting" that is passed off as report cards).

Although it took a long time for IDEA (as it exists today) to emerge, it also took a lot of parental involvement and advocacy.  And I can't help but think that's the only thing that is going to move Canada's educational systems for children with special needs forward.

In the meantime, I suppose we will all just keep putting one foot in front of another.  And keep hoping that somehow, through it all, we can manage to actually obtain an appropriate education for our children.

There's only one problem with that, of course.

Hope isn't actually a strategy.

How Do You Define Disability?

For some reason I simply CANNOT embed the video but you really need to watch this CBS story about Capt. Scott Smiley. 

Not just another inspirational story of a wounded American soldier, it might just make you question your whole perception of what exactly disability is.  And isn't.

So go.  Promise me you will watch the whole thing. Please.

H/T to Lex

With Friends Like That ...

I just spent the better part of the morning with the Blue Jay, weeding out her "Friends" list on Facebook. We went from roughly 400 "friends" down to 173. Which, really, is just as ridiculous as the 400 number when you think about it.

Yeah, yeah, I know. It's Facebook, for goodness sake. Play the game and shoot for 1000. Maybe even 2000.

Which is all fine and good if that's what you're into. And you don't have various challenges.

A couple of the Blue Jay's "friends" (actually, kids from school that she barely knew, if at all) started having some very interesting chats with her this past summer. About boyfriend-girlfriend stuff. And what you should do with your boyfriend. In graphic detail. If you get my drift. Yeah, that's what I said.

We only came to find out about it by chance, when the Blue Jay made a comment to her sister about something she wanted to "do" to her "boyfriend" (I could write a whole post on that particular relationship but suffice to say that it's a very safe relationship for the Blue Jay while still giving her that social status of having a "boyfriend").

So. Yeah.

I mean you need to get this - although at times she is pure teen attitude and her body is that of a 17-year-old, mentally she's about equivalent to a 9-year-old. 

She has no interest in this stuff.  At least not until other people instigate it.  And instigate it they do.  And interested she becomes.  For the simple reason that she has been hearing that this is what everyone else does.  And all she wants is to fit in with everyone else.  To be like them and be accepted.

Leaving us suppose to do what exactly?

She is 17.  She doesn't understand why she can't be like other 17-year-olds.  Allowed to do the things they do and have the freedom they have.  Even though she has absolutely no interest in three-quarters of the things they do.  Let's just say that her real interests are at a much younger level.

And so we do our best to protect her from this foolishness.  To keep her safe while at the same time trying to do do the near polar opposite and foster her independence.

I've heard it said that kids don't come with a manual.  No joke.  But neither do kids with special needs and let me tell you - I could really, really use one right now.

Heating Up

Although I'm not totally sure that the above title isn't just wishful thinking on my part (I know it definitely isn't when it comes to the weather ... sheesh), things appear to be heating up on the other side of my life - the legal side.   Or, more specifically, my legal passion.

Assuming I have any faithful readers left, you might recall that I spoke of creating a legal guardianship kit that families could use to obtain guardianship of a loved one with a disability without incurring the exorbitant cost of hiring a lawyer.  Well, I am pleased to advise that said Kit is, indeed, done. 

Silly me, I thought creating the Kit would be the difficult part.  Nope, turns out the harder part comes now.

Although I am not quite ready to release the Kit for public consumption (I am having a couple of lawyers who deal a lot with guardianship review the materials and will then register an official copyright), I now realize I have to figure out how to market the darn thing.  And apparently that means figuring out the who/what/when/where/how of a website where the Kit can be purchased and downloaded.

But (and here comes the good news) yesterday I received a completely unsolicited email from a group who would like me to do a presentation for them on guardianship.  And that is a very interesting development considering I have been scheming to hatch working on a plan on how to do similar presentations around the province, both as a way of educating people on the issues around guardianship and promoting the Kit.

The other interesting development (also yesterday) was an email from a person representing one of the groups that was successful in obtaining the government bid I spoke about earlier (alas, it was not meant to be us).  He had come across the blawg and was wondering if I could assist with finding host groups for their presentations.  At which point it occurred to me that what his group will be presenting about (the RDSP) would actually tie in quite nicely with a disability group offering three separate sessions to their members - one on guardianship, one on the RDSP and one on Henson Trusts. 

So, yeah, a little more scheming thinking going on there at the moment.

To be Continued ...

Why??

Deborah, Ashley's mom over at Pipecleaner Dreams, asked a most excellent question yesterday - Why?

Musing about group homes, day programs and school classrooms one of her daughters has and does know, she simply asks "Why?".

Why don’t people with disabilities deserve lightness, bright rooms, cheery kitchens and the occasional barbecue outside? Why can’t they assist in planting flowers and a vegetable garden at their group homes? Why can’t the draperies be opened more frequently and why can’t pleasant music be playing in the background rather than the constant din of the television?

How can we expect children with disabilities to be excited about going to school when the being there provides nothing visually stimulating? Do school districts think our students with disabilities will learn more if there is nothing but plain green walls to distract them? Why aren't there 'spirit' posters and announcements of school dances in the 'special education' hall? In fact, why is there even a 'special education' hall?

How can we expect our children with disabilities to learn and grow at their day support programs when they dread going there? Why can’t there be celebrations and joy in the places they spend the majority of their day - maybe ice cream sundaes and cupcakes with rainbow sprinkles? Why can't the staff smile more - do they really hate their jobs as much as their faces seem to say? Why must their lives be filled with darkness and gloom? Again, a little paint would go a long way to improving everyone’s moods.

Answers?

Anyone care to take a crack at it? Anyone at all?

After all, if it were typical children housed or educated in such conditions, parents would be screaming bloody murder, would they not? The community would quickly respond and whoever was operating the institution would likely be shamed into compliance. And, if not, their "customers" would soon be gone elsewhere.

And yet that's not the case here. Why not?

I have a few ideas - ideas formed from years of battles, negotiations and compromises with teachers, doctors and bureaucrats. Yes, a few ideas - and they're all quite sad if true.

My first thought is that, in large part, these situations continue because many people "think" that those who are challenged don't notice their surroundings that much anyway, so it doesn't really matter.

Actually, I doubt that many people even get that far in their thinking. Most people likely don't think about it at all. But for those that have no choice but to confront it (those that are perhaps forced into actually facing these conditions day in and day out as employees), I would not be surprised if, for many, that that is their thought process. Or, at least, what passes for a thought process.

Forget the research that shows how important the characteristics of the physical environment are to a child's learning. That only applies to children. Real children. Real people. Like you and me.

Do we really need research to tell us what we already know, to "prove" that which is really only common sense - that a mentally challenged person is first a person; that the physical environment is just as important for him or her as it is for you and I?

I also think that some people condone the present situation as a way to save "scarce" resources - why spend time and money on such things when it doesn't matter much anyway (see above)? And when there are so many other places that need repairing and updating - places where typical children are educated, for example.

The most guilty of all would be those who question why time and money should be spent in such places when they regard (whether consciously or unconsciously) the individuals who live, work or go to school there as "less than".

As in noticing less than others.

Needing less than others.

Deserving less than others.

And although the case might be made that this is not a condition confined to the disabled, that individuals in poorer communities or the aged, for example, often experience similar physical environments, I have to ask how that justifies any of it.

Is it really okay to treat any segment of the population (be it on the basis of ability, age, income or race) as less than, as being as entitled to less than what the community would accept for it's own children or other family members?

Is there ever any justification for any one of us, personally, to consider it acceptable for any segment of the population to be treated with any less care, compassion and consideration than that we would expect demand for our own family members?

How do you justify the unjustifiable?

Anybody?