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.

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.

Making A Difference?

Acting unanimously, the House of Representatives last night approved a bill to remove the terms “mentally retarded” and “mental retardation” from federal education, health and labor laws. The measure, called “Rosas’ Law” in honor of a Maryland girl who has Down syndrome, has already passed the Senate and is expected to be signed into law by President Obama.

“This law is about families fighting for the respect and dignity of their loved ones,” said Sen. Barbara Mikulski (D-Md.), one of the measure’s sponsors. “This change will have a positive effect on more than 6 million Americans.” She said the law will make the language of federal law consistent with that used by the Centers for Disease Control and the United Nations, and will not affect any services, rights, responsibilities or educational opportunities for people with intellectual disabilities.

Rosa’s law substitutes the terms “intellectual disability” and “individual with an intellectual disability” for the earlier terms, now considered outdated and stigmatizing by many self-advocates and their families. It does not cover entitlement programs, which include SSI, Medicare, Medicaid and Social Security.

Sounds nice. Definitely.

And what more could you ask for than the photo op of such a sweet looking little girl with an older brother willing to go forth and do battle for her rights?

Cynical, you say? Maybe. Maybe not.

There's no doubt in the world that words can and do hurt.  And serve to shape our perception of "reality".  And much like the Marcelli household, the word "retard" is not allowed in our house.  Never will be.

And yet, there's something here that bothers me that I can't quite put into words.  At any rate, I do seem to be feeling a tad more cynical on the subject today than I was the last time we discussed Rosa's Law.

Still, it's passed.  And that's a good thing.  A step forward. 

But is it a step that will really matter?

I'm not sure. Kids (and their parents) will still throw around the word 'retard" as a taunt, on the playground and elsewhere.  Parents of challenged children will continue to wince when hear the word.  Some may speak up.  Some may not.  But, most importantly, children who are challenged will continue to be hurt what is said. No matter what the law books may say. 

Still, perhaps one small step forward. 

It may be that I just need to keep reminding myself ...

It's better to light a candle than to curse the darkness.
Eleanor Roosevelt

H/T to On Special Education Blog

Too Good To Pass Up - Village News Back To School '08

Check out the latest edition of the IWK Pediatric Rehabilitation Services newsletter (formerly known as the Rehab News and CP News; now renamed the Village News).

This newsletter is too good to pass up, with information on everything from

• the opening of L'Arche's first home in Halifax,
• an increase in the allowed number of days of facility-based respite,
• the results of the recent 'Creating Respite Solutions Workshop',
• the Children's Fitness Tax Credit and Canada Learning Bond,
• sibling support,
• the latest in the IWK's Psychology For You series (selective mutism and the early detection and treatment of autism), and
• creating support solutions for families of children and adults with special needs
  
  
  

Village News Back to School 08 - Upload a Document to Scribd

Read this document on Scribd: Village News Back to School 08

Camp Triumph 2008

Not Legal Per Se But ...

It's never easy having a sibling with special needs. Just ask a child in that position. Be they older or younger and no matter how much they love their challenged sibling, family dynamics are irrevocably changed. The younger child is now the 'big sister'. The older child is big brother to a child who may never 'grow up'. Time and money are often diverted, by necessity, to the challenged sibling.

The same can be said for a child with a sibling with a chronic illness. And as we all know, chronic illness and disability often go hand in hand.

Perhaps not the solution, but certainly a much-welcomed respite for your other child, Camp Triumph is a FREE residential summer camp located in Prince Edward Island providing opportunities for these children to experience new activities and have fun with childrne who are experiencing similar experiences.

There are still many spaces available for this summer.

What are you waiting for?