NS Family Fights for Future of Son with Disabilities

This video is making its way around FB with good reason.

It is heartbreaking and a true rendition of what is happening in Nova Scotia right now, particularly to those with more severe challenges, such as Brendon.

Standing on the Shoulders of Giants ...

Trolling through FaceBook today (because I really have nothing else to do, right?!), I was noticing some of my American friends posting their thoughts on the debt they owe to those who came before them and made the ultimate sacrifice.

Which, I honour and respect that, it's just that we tend to save those thoughts for a different day ...

However, it did get me thinking about how much we, as parents, owe to those who came before us. How both we and our children stand on their shoulders.

Pretty much any advance made in the world of disabilities, whether we look to the US, across Canada or right here in Nova Scotia came about through the sheer work, determination, dedication and (never to be forgotten) passion of those parents.

Think about it ... in the US, we need only to look at IDEA; in Canada we could look at the Convention on the Rights of Persons with Disabilities and elsewhere; here in Nova Scotia, I need only look almost literally across the street from my home to see the Flowercart. I can only presume that other sheltered workshops throughout the Province came about through a similar process. Please understand that I'm not suggesting that any of these concepts (particularly sheltered workshops) couldn't be improved on, just that, at the time, they were a giant step forward for the disability community.

It's true, I have had (and shared) such thoughts on many occasions, but what makes this time different perhaps are the four parent-inspired and created innovations I am aware of in my own back yard - both CAPRE and the Alexander Society for Inclusive Arts have been around for many, many years; Kaleidoscope is relatively new; and Rowan's Room Respite and Developmental Centre is pretty much brand new. I am proud to personally know all the families that started these endeavors and of the fact that all four are happening right here, in my Annapolis Valley.

If I may, I am particularly proud (at the moment) of Elizabeth Mason Squires for taking on this huge venture:

The Skills to Navigate
It’s not about fitting in. It’s about giving them the skills and tools to better navigate a world that doesn’t always understand or accept differences. It’s about being who they are but giving them the power to control their understanding of unfamiliar situations and differences, as well as the ability to master their own environment.

Be it with respect to education, day programming, leisure, housing or any other of the myriad of issues facing our communities, the facts remain the same - it so often takes highly-motivated parents and families desperate to find something useful and workable for their family members to create the next bridge forward, to the benefit of so many.

May we never forget that we stand on the shoulders of those who came before us. But equally important, may we never forget our corresponding duty to make life better for future generations.

And while we're doing that, please don't forget to check out the above organizations.

How Do You Know When You're on the Right Track?

"We all have a destiny, a dharma to fulfill, and there are endless opportunities, people and circumstances that surface throughout  lives to illuminate our paths."
~ Dr. Wayne W. Dyer

First, I have a confession to make - I love quotes. I collect them in fact. That's right, 56 pages of quotes in a Word document. But enough about that, I want to talk about this particular quote.

I would like to believe those words above are true, you see. It's not that I believe in fate to the exclusion of free will; no, not at all. I see it much more like opportunities opening up in your life, windows if you will. Little windows of destiny, perhaps, as you make your way through your life.

Always a choice.

Even though my father had been in a wheelchair from the time I was born and I had two severely challenged older sisters (who had been institutionalized before I was born); even though during my last year of Law School, I was diagnosed with a chronic medical condition ... despite all that, before my oldest daughter was born, I had always naively thought that persons with disabilities were taken care of. The whole social contract thing at work and all that; society doing it's part to help those who were not as capable of helping themselves.

My perfect little baby girl was 13 months old when she had her first seizure. The first of many, many, many seizures - I gave up counting after a while. As if these clusters of up to 100 seizures over the course of a week was not bad enough, we discovered that after each bout of seizures, she had regressed, lost some of the skills she had previously developed.

In fact, after her second bout of seizures, which occurred when she was 19 months, she lost all her words except for mama and baby, could no longer climb stairs and had "forgotten" how to play with her toys. She was still interested in her toys; it was just that she no longer knew what to do with them. For every toy that she picked up, you had to take it gently from her and show her how to use it, what it did. After you did this a few times with the same toy, it seemed to start to come back to her.

Although I had no clue at the time and despite my own childhood and family experiences, that was my first real introduction to the world of disability. That was the beginning of a journey that I know so many of you have taken. We each may have traveled our own paths, but our experiences are so similar in so many ways.

It's funny, though, I never really picked up and focused on my daughter's developmental delay until she was around 4 years old. I was at a support group (probably one of the last occasions where I sat through a meeting just listening, taking it all in without much to say) for parents whose children had epilepsy and my child was the youngest in the group; all the other children were in school. The discussion that night turned, of course, to school and the challenges these children and their families faced in that system. Up until that point, there had been so much of focus on the medical side of stopping my daughter's seizures that our family hadn't really paid much attention to her challenges. This is hard to explain - she was taking speech therapy and in early intervention at the time. so obviously we recognized these issues but ... they simply had never been the focus. The seizures were the problem, we believed. Stop the seizures and all will be well.

Well, the rest, as they say, is history.

Spoken Word Poetry

An emotional spoken word poem written by a father to his son.




Robb Scott wrote and performed this poem for his son who was born with Down Syndrome. The poem expresses how the R-word changed for Robb and how he hopes he son deals with hearing it as he grows up. The poem expresses how the R-word changed for Robb and how he hopes he son deals with hearing it as he grows up.

Those Least Like Us Have the Most to Teach Us (About Ourselves)

I knew Danny Graham had a child with special needs.
Today I realized that I certainly didn't know the whole story.

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 Free Falling

Those Lazy Hazy Crazy Days of Summer

Wow - my apologies! May 27th - it's hard to believe I've went this long without posting.

But (as usual) I do have a few excuses. Let's see ... where to begin?

• In early June, my husband and I were successful in obtaining guardianship of our oldest daughter. Not only is that, obviously, a significant event for our family but it had added import for me. You see, I've always been quite confident that the a family could use the Nova Scotia Legal Guardianship Kit to successfully apply for guardianship of a high-functioning adult. But now I have proof.
  
  The sample affidavits for a high-functioning adult in the Kit were based on my own daughter, who  at the time was only 16. When the time actually came to apply for guardianship of her (3 years later), I realized that I had to update those affidavits because she had made some significant progress in those three years. And yet, in spite of that progress, the Kit was still more than adequate to found a successful court application.
  
  Can the NS Legal Guardianship Kit be successfully used to obtain guardianship of a high-functioning adult?
  
  
  
  
  
  
  
  
  
  YES. YES IT CAN.
  
  

• In the middle of June, my daughters and I headed out to Manitoba for my niece's wedding. And to meet my brand new now two-year-old grand-niece.  Did we have a nice trip, you ask? Yes, yes we did. A lovely three-week trip it was.

• Ever a sucker for punishment, less than a week after our return home, I wrote rewrote the Bar Admission Examination. And, just for the record, an examination that took one day and was open book when I first wrote it, 20 + years ago is now a two-day exam. And, most definitely, NOT open book.
  
  That's right, I took the first, make that the second, step in that leap of faith we discussed last year. We won't receive our marks for a few months but I must say I do find the whole thing rather exciting. 

So there you have it. A brief synopsis of the first part of my summer.

But never fear, now that I'm back, we will start getting some content moving again on ye olde blawg.

In fact, I already have some ideas floating around my noggin, from discrimination regarding service animals to the right and ability of persons with intellectual disabilities to marry to the import (and importance) of confidentiality agreements when litigation (including human rights matters) is settled.

So stay tuned. I will be here. Unless, of course, this @%$!! heat completely does me in.

And I slowly m-e-l-t ... a-w-a-y ...

Not. On. The. Radar.

I just completed a telephone survey about my impressions on how our current provincial government is doing. But before you go off on that tangent, that is not what motivated me to drop what I was doing (yeah, I was most definitely in the middle of something when the phone rang but what can I say ... I do like surveys) and write this post.

What motivated me is this - the survey was lengthy (to the point of annoyance, really) but as we neared the end of the call, it hit me like a lightning bolt - what was missing.

Anyone care to hazard a guess?

It was us.

Me.

You.

Our children.

Our families.

Oh sure, we were there. Of course, we were there. In everything from power rates to emergency health care to the HST to creating more jobs in rural Nova Scotia to class sizes in elementary school  .... on and on it went. All that stuff is important and relevant to varying degrees to all of us.

But what was missing was any reference to any issues relevant to the disability community.

Interestingly (but not surprisingly), seniors were prominently featured. Children were there. Families were there. Small business were there. But there was absolutely NO mention of the disability community or any of our issues.

The closest thing to our issues was, in fact, rather a stretch - one question on how important I felt it was to help those most in need. In my mind, that includes those in the disability community. But for most many of our fellow Nova Scotians,  I would hazard a guess that the disability community most definitely did not jump to the front of their mind when asked that question.

We, my good friends, are not on the radar.

And, if our issues are not on the radar, how in the world can we possibly expect to have them addressed?

If, when the government assesses public opinion on the importance of various issues, people are never even asked their opinion on the issues so important to us and our families, how will government ever assess (let alone grow) the political will to tackle our issues?

How, indeed.

This is a post about questions, not answers. But, should anyone have any answers, I, for one, would love to hear them.

Because, really, people ... I'm thinking we have a serious problem here.

A Leap of Faith

It's been eighteen years since I've practiced law.

I stopped practicing in 1994 due to the significant health (to say nothing of other) needs of my oldest daughter. And I've always said I wouldn't go back to practice unless I could have just a "disability" practice.

In other words, not unless I could only take cases involving disability-related issues. But considering that most families with a disabled family member can't afford a lawyer and I figure that it will likely take Nova Scotia a good 20 years to get to the point where the government helps subsidize the cost of legal representation for families ... I just couldn't see it happening.

But for the past year or so, I've been playing around with the idea of doing just that ... going back to the practice of law.

What if I went back to practice? Just on a part-time basis?

What if I could offer people the option of either purchasing the Guardianship Kit or hiring me to bring their guardianship application?

What if I could, not just talk about the Henson Trust, but actually do up Wills for people with the proper wording?
What if ...?

Not only would my fees be significantly lower than the majority of lawyers' but people were already asking if they could hire me to bring guardianship applications and I had to explain that no, I wasn't practicing.

So it was that I've been playing around with this idea for a while now.

I tried to talk myself out of it ... after 18 years of not practicing, just how many hoops would the Barristers' Society make me go through before granting me practicing status again? For a while, that seemed like a good enough reason not to proceed any further.

But eventually I realized that I might just be staring in the face (and yet not seeing) exactly what I have been looking for so hard for quite a while now. This has been my passion for so many years now - how long have I been telling people that if I could find a way to marry law and disability (and get paid for it), I would be truly happy? Trust me, a very long time.

And so it was that eventually, very slowly, light began to dawn on marblehead (that would be me, in case you were wondering) and I made the decision to take the leap and return to practice. 

Now I must admit that the time between making that decision and actually commencing the process  has been a little slow but ... I am happy to inform you that yesterday I mailed my aplication to change to practicing status to the Bar Society.

What now, you ask?

Now.

  

Now I sit and wait to hear back as to what, exactly, I will have to do before I can start practicing again.

Wish me luck. Please.

A Fond Farewell to a Very Good Friend

Shortly after noting that writing has been light here, I stumbled across some very sad news. The man who started me blogging in the first place (known as your "blogfather" in the blogging world) died suddenly and very unexpectedly on March 6th.

I know that fact has nothing to do with either disability or the law, but I share it hoping you will understand when posting likely doesn't pick up any too quickly.

And because it only seems fitting in a way - there were two people, totally unknown to the other, whose actions resulted in the birth of this blawg and Lex was one of them. He got me blogging on The Flight Deck, which gave me a comfort level with the whole idea, so that although at first it sounded a little wacky when Blair suggested I start to blog on these issues, it wasn't out of the realm of the possible. Blogging, yeah, I knew how to do that.

It also goes to show, I suppose, that, like all of us, I have (or at least try to have) a life outside of disability issues, way outside of disability issues. Hopefully, we all have other interests or hobbies. Have them. The time we may get to spend on them, being an altogether different matter.

So as a little peak into the other side of my life ... my interest in flight and my love of reading various thriller books (particularly, at the time, those by Tom Clancy) ultimately led to my attachment to a very special blog written by, of all people, an American naval aviator.

I know ... who would have thought it?

But that man, I tell you, that man could write. And not only could he put you in the cockpit with the young aviator trying to manage his first night traps on a carrier, no matter what he spoke of or about, it almost always felt like he was speaking to you. Directly to you.

He wrote a lot on current events (aka politics), too and although we often didn't see eye to eye (his politics being somewhat to the right of mine), it was always done in such a respectful, logical, reasoned and reasonable matter that you couldn't help but listen and at least try to understand from whence he came.

And he was always open to a different point of view; discussions could become heated at times but he would never allow them to denigrate into anything even remotely resembling those hateful swear-filled debacles that anyone who has spent much time online is all too familiar with. Not in his house.

"Attack the message, if you must, but not the messenger", he would say. And "We're all friends here", he would remind us.  Yes, friends we all were.

After 6+ years I came to know Lex more than a bit, from email correspondence, from reading his blog and from blogging on The Flight Deck.  I came to know how much he loved his family, how much he loved his country. And what kind of man (and officer) he was. And I am very, very sad to see him gone.

Rest in peace, Capt. Carroll "Lex" Lelon, U.S. Navy, Ret'd. And, from the bottom of my heart, thank you for everything.

I wish you knew my friend. Might I suggest you could do far worse than spending a few minutes reading this.

*  *  *  *  *  *  *

So. All that being said, I came across this great article today, via Linked In, and I just had to share it with you.

Many (most, all?) of us are familiar with IPPs, no? And we know that the same documents in the United States are generally referred to as IEPs. Well, have you ever been motivated to write one yourself? Perhaps for your child's school? To, you know, help them meet appropriate outcomes and overcome their challenges?

Check out Gregory Branch's article entitled "If Schools Could Have IEPs..." and don't forget to read the additional "outcomes" set out in the comments. I needed a chuckle today. Perhaps you do too.

Where I'm At ...

A friend recently pointed out that I haven't been posting much on the blawg. No surprise there, I knew that. But after giving it some more thought, I thought an explanation might be called for.

First things first, I have not given up on this blawg. I cannot imagine ever doing so ... strange as it may sound, it's my baby. I have been doing this for over 4 years now and will continue to do it for many more. Perhaps for as long as it's needed. Wouldn't it be nice to work myself out of a job? Well, a girl can always dream...

But the reason I've been posting less often recently is two-fold:

• I recently took on some new temporary contract work. The work will only last a few months (and I'm pretty well half-way through it now) but it seems to be incredibly time-consuming. I'm actually enjoying the work (Learning Guide Facilitator for a portion of the Bar Admission Course - fancy way to say teacher/marker) but it seems to suck up the little "free time" I had. Fortunately, however, it won't be permanent.
• Secondly, my work situation is in a bit of state of flux at the moment. Between now and the end of April I will be ending my work as a digester for the Barristers' Library - sadly, they have made the decision to get out of the publishing business. But on a practical level, that means I am trying to do as much work for them as I can at the moment. The well will soon run dry.

So that's my story and I'm sticking to it.

I feel bad about not posting as much as I would like (as I've said before, the problem I generally face is lack of time, not lack of material) but I am doing my best to keep the "Places To Be" section  in the sidebar up-to-date. So might I suggest that if/when you check in to see there are no new postings, you scroll halfway down the page and check out "Places To Be".  You might just be plesaantly surprised.

HACL has been (and continues to be) busy with a series of workshops for parents - personally, I am looking forward to the Circles workshop on Saturday, March 24th.  There will also be an "Emotions to Advocacy "workshop on April 21st (material from Wrightslaw - I hope everyone is familiar with that site).

I will be giving another series of presentations on The Henson Trust and Supported Decision Making and Legal Guardianship in Nova Scotia on March 31st, this time in Clare, so if you happen to live down that way, I would love to meet you!

And who could forget the Autism Awareness Centre's Workshop coming up April 13th and 14th.

And for something totally different (at least I've never seen such a thing before), a Big School" Here I Come! program will be held August 21 -23, with orientation on June 9th. For children with a physical disability or acquired brain injury (psst ... my experience is nobody sticks to those guidelines all that much - I would suggest giving them a call if you have a child with autism or intellectual challenges or ... you get the picture) entering elementary school in September 2012, the program is to give them a chance to work with a team of rehabilitation professionals on skills to increase their independence and prepare them for “Big School”.  Sounds cool... wish we had something similar when my two started school. Would you believe my youngest turned 16 today?  Where does the time go?

And that's just a taste of the items in the sidebar under "Places To Be". So please do check them out.

And hang in there with me ... we will be back! After all, where else would I go?

The End of the Road ... or A New Beginning

Regular readers might have noticed that I've been crushing a bit recently. Blog crushing, that is.  On Kilometres for Communication.

Their journey started in April of this year and Skye and Gail officially hit the road on May 20th, with Skye dipping his bike tire in the Pacific Ocean.

77 days later (yes, 77 days of cross country travel), he reached Cape Spear, Newfoundland, the most easterly point in Canada. Yep, that's 77 days of blog posts and trust me when I tell you they all are worth reading. 

But may I direct you to one in particular, Day 76, the second to last day of Skye's and Gail's journey. Skye's words on why he chose to do what he did, what (or more accurately, who) motivated this 18-year-old young man to give over two months of his life (and a good chunk of one of our much-valued Canadian summers) to this project are, might I suggest, profound.

Late last year, I posted a review of a book entitled Being The Other One: Growing Up With a Brother or Sister Who Has Special Needs.  The first part of the book focused on a wide range of issues that effect both siblings and parents when a child in a family has a disability. It then went on discuss ways in which adult siblings can gain understanding, learn to express feeling and gain support; strategies for parents to build stronger families and support younger siblings; and the necessary awareness and strategies that service providers and practitioners can use to help families.  I highly recommend it, it's a good book, written by somebody who has walked the walk.

But perhaps the one thing it could have focused more on (and in all fairness, I am relying on memory as I don't have the book in front of me at the moment) are the absolutely amazing, stunningly beautiful ways that having a sibling with special needs can affect a person.  I don't for one minute mean to downplay the hardship and emotional upheavals for the entire family (which is an issue Skye explores somewhat in his Day 76 post) and yet, let's never forget the positive effect that having a challenged sibling can have on a young person.

Let's face it, without my daughter's challenges, I wouldn't be doing the work I do today.  This blawg, quite simply, would not exist.  For the simple fact that I was naive enough to believe that the needs of people with various challenges were taken care of in Canadian society. Until I learned, the hard way, otherwise.

Without Kerr as a sibling, it is highly unlikely that Skye would have been motivated to make the journey he completed only yesterday.  And yet, as he so rightly recognizes amidst his mental and physical exhaustion and rightful pride over what he has accomplished, the journey he took on earlier this year is far from over.

As I mentioned in yesterday’s blog, this journey is not over. I may be on the eastern coast of Newfoundland, but the journey towards empowering the voices of Canadians who have little or no speech is still back in the Prairies fighting headwinds. We want to expand our network further and create an inter-provincial coalition to advocate with strength. We want to develop our website further and keep it as a resource of stories and educational info on AAC. We want to continue teaching people.

But that we all could have the strength of character, conviction and endurance that Skye has demonstrated these last few months when it comes to taking on the issues that affects our family members.

If nothing else, when we're feeling down, tired and depressed and wondering if we can do much more or if any of it really makes a difference, let us turn our minds to Skye, Kerr, Gail and Burns - a lesson in courage, conviction and love.

Well Said

I've mentioned fellow blogger, Ashley's Mom at Pipecleaner Dreams on a few occasions before.

Today I popped over to catch up on a few older posts and thought this post about inclusion was simply beautiful.

But, no, she speaks not of our children or others with disabilities being included, she speaks of true inclusion - among parents.

Some snippets:

. . .  .

There grows in communities groups of parents who have children with disabilities. These groups may grow out of shared hospital experiences or shared school experiences or maybe just through word of mouth from one family to another. And the adults in the groups come together for support and to share their stories that usually only others in similar situations will understand. More often than not, the children represented by these groups have very similar disabilities – parents of children with deafblindness, parents of children with Down Syndrome, or parents of children with trachs, for example. But what if you are the parent of a child that just doesn’t quite fit the same description of other children in one of the groups? What do you do and where do you find your support?

. . .  .

I know it’s difficult for true inclusion to work, and I know that there are many, many facets to inclusion. I know I may never see it fully bloom in my lifetime, but that doesn’t stop me from dreaming about it. I suggest we try to envision the inclusive world we all desire while at the same time finding the support we need. I fully realize that it is much easier to bond with another parent whose child is on a trach if my child is on a trach. But let’s try setting aside the specifics of disability and concentrate on the specifics of humanity – regardless of ability.

Head on over and read the rest of it. Please.

Most Excellent

I've done a fair bit of political lobbying in my life, from way back in the way back, when I worked with a group dedicated to ending poverty for third world children until I took on the job of advocating for my own children and others in this Province.

The problem with policitial lobbying being, as I know many of you can attest, that you can do a whole lot of lobbying and get no very little results.  Which is why so many of us (are tempted to) give up, no?

Well, they say there is a first time for everything and today I might just be a believer.

Some of you might remember, back in March, when I asked for your help in writing to your MLA and the Minister of Community Services concerning the "gap year" faced by families in Nova Scotia when their young adult children are between the ages of 18 and 19.  Lose the Child Tax Benefit (including the Disability Supplement) from the federal govertnment with nothing to replace it from the Province until the child turns 19.

You might also recall a post last month where I expressed hope that maybe, just maybe, we had been successful in that regard. My MLA, Ramona Jennex, had told me that even though there had been no media coverage (and nothing apparent on a review of the gov't website), there was indeed a line in the budget to address the gap year issue. But we all know how that goes, seeing is believing, right?

Well, my good friends, I am overjoyed to tell you that today I received an actual (snail mail) letter from the Minister of Community Services, Denise Peterson-Rafuse, herself, advising that

... this issue will be addressed through a transitional allowance for families in the Direct Family Support for Children Program and has been apporoved for implementation. While the details of the funding allowance have not yet been finalized, it is our intention to make this funding available to families in the Direct Family Support for Children Progam starting on July 1, 2011.  Eligible families will be contacted with further details once they are finalized.

So that, it would appear, is that.

Good on us, I say. 

Give yourselves a pat on the back, maybe crack open a bottle of something bubbly this evening.  Take a deep breath and relax.  Enjoy.  Something tells me we just might need this feeling of accomplishment for what lies ahead.

And, of course, I would be terribly remiss not to offer many, many thanks both to Ramona Jennex and Minister Peterson-Rafuse. I know that Ms. Jennex personally (and repeatedly) brought this issue forward with the Minister and I really appreciate her efforts on our behalf.

Political Success????

Update: I see Jim Morton, MLA for Kings North is to be making an announcement at 11:00 tomorrow this morning (Monday) at the Flowercart on behalf of the Minister of Community Services. 

Whazzup, you ask?  "Expanded support for Persons with Disabilities in Nova Scotia", they say. We shall see ... we shall see ...

Is it actually possible?  Possible to successfully advocate with our politicians and see positive change - direct positive results?Ask me that question a few weeks ago and, depending on my mood, I might have spouted the party line ("Never doubt that a small group committed people can change the world.  Indeed, it's the only thing that has.") or you might have gotten a more cynical response.


Ask me today and ... you will get guarded optimism.  Tinged with a bit of excitement. 

You might recall my recent blawg beg post, asking for your support by writing to your MLAs and the Minister of Community Services to request that the provincial government deal with one aspect of the "gap year" families face when their children reach the age of 18.  An "adult", according to the feds.  Still a minor, according to the Province.

At any rate, I was informed by my MLA, Ramona Jennex, today that even though there has been no media coverage (and nothing apparent on a review of the gov't website), there is  indeed a line in the budget to address the gap year issue.  Now who cool would that be?

Notice I say "would that be" ... because when it comes to politics, even seeing isn't necessarily always believing.  Forgive us if, as a population, the disability community, as a whole, tends to be a little sceptical of all things political. 

Please don't get me wrong, it's not that I doubt Ramona's word for one minute (and she did say she pushed and pestered until she saw the budget line with her own eyes), but first said budget will need to be passed into law.  Which, of course, shouldn't be an issue in a majority gov't situation.  Then, as Ramona pointed out, the Department of Community Services will need to figure out exactly HOW they will implement this change - will there be some procedure put in place whereby people will have to apply for this extra funding, etc.

So, yes, guarded optimism would best describe it at the moment.  Okay, maybe, more accurately, guarded but very optimistic.

And although I think Ramona (and yes, perhaps even, the Minister of Community Services) deserve a well-earned pat on the back, perhaps it's best if we wait to pat ourselves on the back until we actually see the change in effect on the ground.

Still, who ever said that a small group of committed people can't change the world, even if it is only one small step at a time?

Blawg Bleg - Gap Year for Young Adults with Special Needs

I would like to request your assistance with my current project du jour.

Our kids who are eligible for the Disability Tax Credit receive a Disability Supplement on the monthly Child Tax Benefit cheque. This can be quite significant - in my case, both my daughters get the Supplement and it doubles the amount of our monthly cheque. But when they turn 18 (which my oldest does in March) they lose the Child Tax Benefit (including the Disability Supplement) and the Province doesn't kick in with Social Assistance benefits until the person turns 19.

I have been dealing with my MLA (Ramona Jennex) on this issue, who has been dealing with the Minister of Community Services on my behalf. Apparently the Minister if aware of the issue but hasn't yet figured our what (if anything) to do about it. So Ramona asked me to write a letter directly to the Minister setting out specifically what I wanted to see happen which she would then hand-deliver. You can find a copy of that letter below the jump.

I haven't heard anything back yet and I think it would be really good if the Minister had letters coming at her from all over the Province on this issue so she could see it's not an isolated thing, but it has a big impact on a lot of families. So I am asking you to please take a few minutes to write to both your MLA and the Minister expressing your concern with this matter. For many families, that lost income can make a big difference over the course of a year.

Although actual written (typed) letters are known to be much more effective than email, if writing an email is all you can do, even that is better than nothing. I believe we can get this issue dealt with if we make it clear we are serious about it. So please take a few minutes and type or write something up to send your MLA and the Minister. You can use the same letter to both (perhaps direct the letter to the Minister and copy it to the MLA) and work off my attached letter, if you wish, but please don't just copy my letter and send it on because we know it takes actual individual letters to have political impact and form letters just don't cut it.

If you're not sure who your MLA is you can go to this page and find out by selecting your electoral district from the drop down menu. Then click on the MLA Information link under the name of your MLA and you will be taken to a page with the MLA's contact information.

This page will give you the contact information for the Minister of Community Services.

Even if your child is over the age of 19 and this no longer directly applies to your family, I would still ask for your assistance. The more letters we get moving, the better chance we will to with deal with this issue. And the way I see it is we have a lot of things that need changing but we can only do it one issue at a time.

... And To All a Good Night

My how time flies ... it seems like Christmas does a better job of sneaking up on me with each passing year!

I must admit that this is my favourite holiday though - the cold and snow outside (although no snow yet this year) and the warmth and love of family and friends inside. 

There is nothing I enjoy better, nothing which gives me more peace than sitting in a darkened room, illuminated only by a Christmas tree and admiring its beauty.  It is a time to muse, review, reflect, renew and rejuvenate.

For no matter what may have transpired this past year (through both the highs and the lows), there is the sure knowledge that hope springs anew for the future. And although there is assuredly much, much work yet to be done in the future, there are also many victories to be celebrated in the past.

So to all my readers, both old and new ... a Very Merry Christmas to you and you family.  And to All  a Good Night.

Water Water Everywhere?

Once upon a time.

Once upon a time, I use to be heavily involved in international development issues, particularly as they related to children.  Yup, that's my catch, children.  Always has been, likely always will be.

But in my pre-disability days, before I knew what an IPP was, long before I had ever heard of a Program Planning Team (let alone knew that I was to be a member of many) ... I was involved with a group called Results Canada.

Results (they are active in many countries around the world including Australia, Germany, Japan, Mexico, United Kingdom and the United States) is a volunteer political action group dedicated to "creating the political will to end global poverty and needless suffering, and to demonstrating that individuals make a difference when they exercise their political influence".  It was pure political advocacy work - coordinating a media strategy; letters, letters and more letters to newspapers and politicians; community outreach and fundraising to keep the mostly volunteer organization going.

It was good work, work where you felt you might just be making a difference in the world.  I once had a politician ask me why I, personally, was involved in this work.  I walked him to my office and silently pointed to the picture on my desk of my then 3-month-old child. Enough said.  He got it.

Can one person really make a difference? Yes, I believe they can.  And how many times is that difference magnified when that one person works in unison with others of a like mind?

But life took over - a challenged child with a significant health issue sucked up much of my time and emotional and mental energy.  And as she grew (particularly as she got closer to school age), I realized that a person can only do so much.  And it seemed that there was much I could and should be doing to help others right here in my own Province.  I still supported (and continue to support) what Results is trying to accomplish but my political activity shifted much closer to home as I focused on assisting challenged children and their families navigate our province's educational and community services, to ensure that they had access to the services they are entitled to.

But then I received an email last week - an email "reminding" me that this year's Blog Action theme is water - access to clean water in developing countries, the over-consumption of water in developed countries, water and the environment and "water solutions".  One item in particular in that list struck a chord in me - and you might just guess why based on my previous involvement with Results.

One of the many issues we dealt with at Results was access to clean water - can there be any more basic a need?  Monthly actions and ongoing campaigns were picked based on strategic opportunity, political climate, context, and impact and issues were usually ones where there was a proven, cost-effective solution and for which there are not many champions.  Issues like child and maternal health, sanitation and hygiene, primary education and microfinance - that last of which is an amazing subject, by the way, well deserving of its own post. Perhaps for another day.


Did You Know?
Did you know that unsafe drinking water and lack of sanitation kills more people every year than all forms of violence, including war?  Water, or rather lack thereof, causes 42,000 deaths each week.

That more people have access to a cell phone than to a toilet? Today, 2.5 billion people lack access to toilets. This means that sewage spills into rivers and streams, contaminating drinking water and causing disease.

That every day, women and children in Africa walk a combined total of 109 million hours to get water? They do this while carrying cisterns weighing around 40 pounds when filled in order to gather water that, in many cases, is still polluted.

That it takes 6.3 gallons of water to produce just one hamburger? That 6.3 gallons covers everything from watering the wheat for the bun and providing water for the cow to cooking the patty and baking the bun.

That the average North American uses 159 gallons of water every day – more than 15 times the average person in the developing world? From showering and washing our hands to watering our lawns and washing our cars, we use a lot of water. To put things into perspective, the average five-minute shower will use about 10 gallons of water. 

While these facts may be grim, there is hope for real solutions as more and more people around the world are waking up to the clean water crisis. Earlier this year, the UN declared access to clean water a human right and groups like charity: water and Water.org continue to work tirelessly to bring water access to the developing world.

No, I am not advocating that we all dress in ashes and sackcloth and repent for our sin of living in an industrialized country.  I know I'm not going to anyway!

What I am suggesting is awareness - it's been a long time since I, myself, have turned my mind to these issues on anything approaching a regular basis and when I looked today at the statistics on how many children die every day from lack of primary health care and clean water or for the want of simple and cost-effective interventions such as breastfeeding, prevention of mother-to child transmission of HIV, immunization, micro-nutrients, and oral rehydration therapy to treat diarrhea .... it makes me very very sad.  It reminds me of just how lucky my family and I are.  Despite the challenges we face. And it turns my mind back to the obligation we, who have so much, have to those who have so little.

Margaret Mead is famous for the words, "Never doubt that a small group of committed people can change the world. Indeed, it is the only thing that ever has.”  

That's one of my favourite quotes; I often apply it to the work we, as parents, do on behalf of our challenged children.  And yet, every once in a while, I think we must stop.  And remind ourselves of what our children's lives might be like had they not been lucky enough to be born in a country like Canada.  To think for a moment, no matter how much that thought might pain us, of what their life might be like had they been born in a developing country.

Whether we actively work in concert with those of like mind (be it paid or volunteer), teach and remind all our children that there is a much, much bigger world than that they can see from their back yard or direct our attention on occasion to those charities with a proven track record of dealing successfully with some of the most basic of human needs around the world, I believe know we all have a part to play.

If I Had My Druthers ...

A bit of a personal missive this evening - 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.

'Special Needs as a Second Language'

Not exactly legal (although sadly there hasn't been much of that around here lately anyway) but I thought this was too good not to share.

Check out "Special Needs as a Second Language by Lori Miller Fox" where she shares with the rest of the world a glossary of special needs terms and their definitions.

Here's just a sampling:

• Go check on him, he’s too quiet – means go in and make sure he’s still breathing.
• We’re deciding where to go on vacation – means we’re researching the cities that have the best children’s hospitals.
• You’ve really grown, we need to get you something new to wear – means we need to make a trip to the orthotist.
• I’m good thanks – means I got more than three hours of sleep last night.
• I’m an animal lover – means I can no longer stand the sight of people.
• Yes, we are looking forward to graduation – means I’m going to be at home with my grown child and eat pizza every day for the rest of my life until one day they’ll find me buried under a mountain of stale pepperoni and greasy, tomato-stained cardboard boxes.
  He had a good day – means he stayed awake in school and didn’t hit anybody.

Now go check out the rest.

By the way, my two personal favourites:

• I have a school meeting – means don’t call me, or email me, or ring my bell for at least three days while I climb into my very deep hole and comfort myself with chocolate.


• You must be a new Medical Resident – means his name’s not Buddy, and I’m not your Mom and he’s not your Dad ***hole.

Update: The promised Legal Gaurdianship Kit nears completion. Just looking at polishing it up and filing for copyright. And then it will be all yours.