"There is nothing more difficult to take in hand, more perilous to conduct, or more uncertain in its success, than to take the lead in the introduction of a new order of things."

~ Niccolo Machiavelli, historian and writer

Friday, October 22, 2010

Mulligan Stew

Or perhaps this post most would more accurately be named bean soup ...

At any rate, I am heading off to Bean Town Boston for a week (a rare and wonderful opportunity for me) sans husband and children. 

I'm not quite sure why but I have always wanted to go to Boston.  So off I am with plans to meet up with a good friend from Pennsylvania.  It will be a true Girls Week Out!

And yet I feel the slightest tinge of guilt.  There have been a few articles I have stumbled across recently which I thought might make good blawg folder.  But, which, unfortunately I never got around to actually blogging about.

So, in no particular order, for your weekend (and next week's ) viewing pleasure, I offer you the following:

Taking the Next Step
Although this is an American article, I believe it is, at least somewhat, relevant  to us here in Canada.  Because what happens in the US eventually will happen here.  Perhaps a toned down version in some way, but, make no mistake, it will happen here.

Witness the Regulations made pursuant to Nova Scotia's Education Act and Special Education Policy Manual (see link on the sidebar under "Helpful Links - Education").   Both of which refer to a student's right to an "appropriate education". 

Wording copied directly from the American legislation (IDEA) which provides that all students have a right to a "free and appropriate" education.   Alas, our legislation and policy has the wording but not the teeth behind the American legislation to back it up. 

Still, I have seen recent moves within my own school board to move IPPs more towards the American model in that now finally we are suppose to have "measurable goals and objectives".  "Measurable goals and objectives"?  Who woulda thunk it?

On no doubt related note, I offer you More Intellectually Disabled Youths Go To College

Some good news perhaps for your higher functioning challenged young adult.  But which, unfortunately, also receives The Disgusting Quote of the Week Award:
The infusion of federal money has generated some criticism. Conservative commentator Charlotte Allen said it's a waste to spend federal tax dollars on the programs and insisted that calling them college dilutes the meaning of college.

"It's a kind of fantasy," said Allen, a contributing editor for Minding the Campus, a publication of the fiscally conservative Manhattan Institute. "It may make intellectually disabled people feel better, but is that what college is supposed to be all about?"
Some people just don't get it, do they?

But, for those who have given up all hope in our provincial education system, there's always this.

First Virtual School in Mass. Opens Thursday
I've often been curious as to the exact number of students with special needs who have been pulled from schools that simply cannot or will not meet their needs and are now being home schooled, whether formally or informally.  And yet, something tells me that's a number that neither the school boards nor the Education Department wants us to know.  After all, we all know that sort of thing simply Does. Not. Happen.

At any rate, perhaps, some day, a "virtual" school for our children?

Nah, I can't really see it either (not unless they also provide "virtual" educational assistants - which, come to think of it, would likely be far better than what many students with special needs receive in school today) but, still, it was an interesting thought in passing.  After all, something has to give.  Doesn't it?

But let's move on, shall we?

Mother's Fight For Jailed Son Exposes Special Education Gaps
Although there is also some related commentary, it's really the above article that deserves your attention. 

Quite an amazing story, really.  How far and for how long will a parent advocate for their child's right to a free appropriate education? Reminding me us yet once again that anything we do for our one child often benefits the many.  First requirement - DO.

And, last but certainly not least.

Family to Receive $1.5M+ in First-Ever Vaccine-Autism Court Award
Which makes me wonder - if the long-suspected link between vaccines and autism has been so thoroughly debunked, why would a court order a $1.5 million damage award?
In acknowledging Hannah's injuries, the government said vaccines aggravated an unknown mitochondrial disorder Hannah had which didn't "cause" her autism, but "resulted" in it. It's unknown how many other children have similar undiagnosed mitochondrial disorder. All other autism "test cases" have been defeated at trial. Approximately 4,800 are awaiting disposition in federal vaccine court.
Oh, okay, now I get it.  "Aggravated an unknown mitochondrial disorder" ... but isn't that exactly the risk?  The end of the article has a link to the actual court decision.  For those so inclined.

And on that note, I will bid you a fond adieu.

Have a good week.  I know I intend to!

Tuesday, October 19, 2010

'Educational Reality Check' - A Parody

Province accepts all recommendations from report on black special education students, commits to track, improve performance

The province has accepted all 68 recommendations in a 2009 report that called for improving support for African-Nova Scotian  special education students.

But the onus will be on individual schools and school boards to make those improvements, Education Minister Marilyn More said at a news conference Monday in Halifax.

The 2009 2007 report Review Committee Report and Recommendations report, called Reality Check Minister’s Review of Services for Students with Special Needs, singled out the poor job that the education system does in tracking the successes and failures of the province’s 4,000 black special education students. Education consultant Edna Lee, based in California, also said more must be done to combat racism ableism in schools and that the role of support workers who help black special education students be expanded.

The department’s response to that report released Monday agreed or "strongly agreed" with each of Lee’s recommendations.

"We must work as a team to gather the necessary data and adjust our strategy to ensure African-Nova Scotian special education students have a richer educational experience," More told representatives from black special education and community groups.

A monitoring committee has been established to ensure all recommendations are carried out, she said. The committee includes representatives from the Council on African-Canadian Education,  a special education advisory group to the Education Department, the Black Educators Association Equal Education Association of Nova Scotia and the Education Department’s African-Canadian services Student Services division.

The department has also committed to bolster the staffing at its African Canadian services Student Services division. For example, an elementary curriculum consultant position will be created, as well as a consultant who will evaluate data on the black special education student population.

No additional money will be set aside for the new positions or any potential costs related to implementing the recommendations, More said. Resources will be reallocated from budget savings from such things as administrative retirements.

As for tracking the performance of black special education students, the first step will be to encourage students and families to identify themselves as African-Nova Scotians requiring special educational services, the Education Department’s report said.

From there, it’s simply a matter of better using the data collection expertise and supports that already exist, said Lee, who also spoke at the news conference.

Her report includes a checklist for principals to help them support students and guide them toward the appropriate resources.

"We are encouraging each school to look at not only who’s in school but also the conditions that exist in that school," she said. "For instance, the kinds of curriculum, the role of support workers educational assistants in the school, connections with family. All of those elements make for success."
I would suggest that you to go read the rest but, alas, there is no more.  There wasn't even this. 

Although I am relatively happy to see the Province promising to move forward with improving support for African-Nova Scotian students (I say "relatively" because pardon me if I tend to be a bit cynical regarding any of these reports), as I was reading this article in today's edition of the Chronicle Herald I fantasized what the same story might look like in regard to supporting students with special needs in Nova Scotia.  Fantasized because I'm not sure that I've ever read such a news story. 

So I thought I would take a stab at seeing what that would look like.  At least on paper. Now we know.

Update: I really should note that few things irritate me more than a divide and conquer strategy, whether it be between different disabilities or between students with disabilities and any other group of students.  That is most definitely not the intent of this post.  This is not about "us" versus "them" - it's about all students in the Province having their needs met.

I was actually playing with the idea of sending a portion of this post tin a letter to the Education Minister.

So what do you think?

Friday, October 15, 2010

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.

Saturday, October 9, 2010

LD Awareness Month

"Dear Grandma and Grandpa," I wrote. "I felt like writing you, but I couldn't think of much letter-talk… I mean besides the fact that it is snowing. School is fine. So is Girl Scouts. And, of course, I love and miss you. But, I still want to write you a nice long letter. So, I decided to write you about my life."

The big problem
Well, I've got jumbled memories of being scolded because of my sloppiness… of being moved next to a girl with neat writing to teach me neatness… of taking scissors, cutting up my lunch sandwich… of cutting a fringe around my spelling paper… of wondering why everyone didn't have their crayons broken up… of being lost in a big city on a field trip.

The bad day
I suppose this day started as usual. Barbara, our next door neighbor, started taking me to school. I don't remember any of these walks. Then I entered. I sat down at my desk.

I sat and sat and sat. I wiggled. I remember raising my hand. The teacher called on me. I stood up. "I'm tired of just sitting here," I said.

"Well," she told me. "You're a big girl now. You have to sit and pay attention to learn." I sat down.

Came reading. I did the paper. It was especially neat. So the teacher gave me a 100 percent. I felt so happy and wanted it to look pretty so I took a pair of scissors and fringed it. The class let the teacher know. She tore it up. I wasn't happy.

The next lesson was worse. So, the teacher moved me by Robin, the "little peanut," I called her gaily, for she was quite small. Robin was very neat. She pulled out her workbook. The pages were white–not like my pages. All of mine were smeared and sweated. I had asked and asked for another workbook, but the answer was always, "No."

Soon it was lunch. We lined up. I tried to line up. I tried to line up behind Martha. The reason was, I thought she was quite pretty. I wish she'd pay attention to me. But then, no one else did.
You can read the rest of Dale's letter to her grandparents here.  Finish reading about her bad day.  Then learn about what makes a good day for a child who knows she is different than everyone else.

October is Learning Disabilities Awareness Month. 

And there's no shortage of workshops available to on relevant issues.  Whether you need to know more about the Program Planning Process and Assistive Technology or, perhaps on the slightly more practical side, you seek information on positive parenting, how a learning disability affects a child's behaviour or teaching social skills, they've got it covered. 

Teaching social skills ... now there's a workshop we could really use at my house.  Where's that sign up sheet?

Monday, October 4, 2010

First Book Review

For what it's worth, I've just posted my first book review which you can find  ... under the Book Reviews tab, of cousre!

It's a book written by a sibling of a person with disability.  And it's written not just for other adult sublings, but also for parents and others who work with families with disabilities. 

The book, itself, can be found both on amazon.ca and at the offices of the Halifax Association for Community Living.

So check out the book review.  Then check out the book.