P-P-P-P-P-Purple. Again.

Purple Day is fast approaching.

And Purple Day is a bit of a big thing around here, as you might recall.

Meaning right at the moment I am up to my eyeballs in posters, buttons, wallet cards, Purple Daisies, brochures, pamphlets, bookmarks, pens, stickers ... the list goes on.

And cupcakes, of course ... right, never forget the cupcakes!

So while we prepare to do our small part in the grand endeavour to paint the world Purple ...

Please remember to Wear Purple on March 26th.

And have A Very Coole Purple Day.

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 my life, 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?

Supporting Epilepsy Around The World

I can't believe that Purple Day is tomorrow. And I haven't even posted on it yet!

Not because I've forgotten about it - it's just that we've been too busy doing stuff for Purple Day.

Last Saturday was spent at our local Mall with a Purple Day table. We sold bracelets, handed out lots of purple pins, ribbons, cupcakes as well as information on epilepsy and had some great chats. It was so cool to see people walking around the mall wearing the Purple Day pins and the epilepsy ribbon. Especially since the vast majority of them had never heard of Purple Day before.

And besides painting both blogs purple, we've had our local Village Council proclaim March 26th as Purple Day, we have three local schools (elementary, middle and high school) participating and a local day care is involved in the Purple Day Bunny Hop.

Oh yes, my oldest daughter will also be selling purple cupcakes (with the help of some of her friends and the resource staff) at her high school tomorrow, there will be special PPP draw for the kids wearing purple at the middle school (grand prize being a Purple Day Cake for that student's class) and, yesterday, the Kids on the Block landed at the elementary school to put on a presentation for the Grade 5s at the elementary school.

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

Now for any of you wondering what this Purple Day is and what all the fuss is about ... you should have been here last year!

Just teasing ... Purple Day is about a very special young Nova Scotian. It's about speaking up and stepping forward. About not being afraid. About bringing epilepsy "out of the shadows". And about what one person can do when they make up their mind to something.

9 year old Cassidy Megan didn't want to tell her classmates that she took seizures. That she had epilepsy. She was afraid they would make fun of her.

But when members from the Nova Scotia Epilepsy Association came to Cassidy's classroom and did a presentation, it empowered her to speak up for the first time in front of her classmates and admit that she had epilepsy.

And yet Cassidy went beyond that. She realized that people needed to learn more about epilepsy, "especially that all seizures are not the same and that people with epilepsy are ordinary people just like everyone else". She also wanted kids with epilepsy "to know that they are not alone". And with this realization, Cassidy became a spokesperson for epilepsy.

She went to the principal of her elementary school and asked if they could create and celebrate Purple Day ~ a day when everyone would wear purple to increase awareness about epilepsy. With the help of her mom, Cassidy began contacting politicians, celebrities, non-profits and corporations, asking them all to spread the word about Purple Day and epilepsy.

And with that, Purple Day was born.

From students in classrooms around the world to Paul Shaffer on the Late Show with David Letterman, people wore purple to spread the word about epilepsy on March 26, 2008. Cassidy was interviewed by news outlets across Canada and was even featured in a South African epilepsy newsletter.

Last year, we brought Purple Day to the Annapolis Valley. And to the combined approximately 700 students at a local elementary and middle school. And like I said above, this year we expanded it a little.

How can you fail to be be awed by a story that starts with a 9 year old Nova Scotian girl and ends with purple tea parties and pizza parties, purple cocktail parties and fundraising events, purple art shows and pool competitions, a Calgary City Hall Purple Day Proclamation Celebration and a purple-lit CN Tower and Niagara Falls?

So on behalf of our family and the 300,000 Canadians and 2.5 million Americans and countless others around the world who live with epilepsy each and every single day, we offer a very heartfelt thank you to Cassidy.

I wonder how many people are aware that epilepsy affects more than twice as many Canadians as those who live with cerebral palsy, muscular dystrophy, multiple sclerosis and cystic fibrosis combined or that one in 100 people has epilepsy? I wonder how many people are aware of many epilepsy issues?

Well, thanks to Cassidy Megan, I am sure the answer is many more now. And that number is growing every year.

Going Purple ... With Pride

This isn't the usual type of post you will find on A Primer on Special Needs and The Law.

But I hope you will bear with me as I share with you with a very important event for one portion of the disability community ... a portion that's near and dear to my heart.

Epilepsy aka the seizure monsters have played a big role in our family's life. For a very long time.

My oldest daughter had her first seizure when she was 13 months old and she was diagnosed with a "seizure disorder" when she was 2 years old. Despite the doctor passing me a pamphlet from our provincial epilepsy association when he gave us this diagnosis, it was quite a long time before I actually put two and two together. And realized that "seizure disorder" was just another way of saying epilepsy.

It's amazing how huge language is. How it can so easily hurt. Come with so many stigmas attached. Can be used to build someone up . Or tear then down. Sometimes without the speaker even realizing it.

And so it is with the word epilepsy. There's a certain stigma attached. Although it doesn't carry as much baggage as the words "mentally retarded", for some people there's still a certain sting to it. And if you doubt that, try the word "epileptic" on for size and see if you feel any differently. Think of it applied to your son or your daughter. Or yourself.

And so it was understandable that 9 year old Cassidy Megan didn't want to tell her classmates that she took seizures. That she had epilepsy. She was afraid they would make fun of her. Can you blame her?

And yet time and again we have seen that from many dark moments, a light can spring. And so it was when members from the Nova Scotia Epilepsy Association came to Cassidy's classroom and did a presentation. It empowered Cassidy to speak up for the first time in front of her classmates and *admit* (yes, admit) that she had epilepsy. And that by itself, were that the end of the story, would have been admirable.

But Cassidy went beyond that. She realized that people needed to learn more about epilepsy, "especially that all seizures are not the same and that people with epilepsy are ordinary people just like everyone else". She also wanted kids with epilepsy "to know that they are not alone". And with this realization, Cassidy became a spokesperson for epilepsy.

She went to the principal of her elementary school and asked if they could create and celebrate Purple Day ~ a day when everyone would wear purple to increase awareness about epilepsy. With the help of her mom, Cassidy began contacting politicians, celebrities, non-profits and corporations, asking them all to spread the word about Purple Day and epilepsy. And with that, Purple Day was born.

From students in classrooms around the world to Paul Shaffer on the Late Show with David Letterman, people wore purple to spread the word about epilepsy on March 26, 2008. Cassidy was interviewed by news outlets across Canada and was even featured in a South African epilepsy newsletter.

I am sad to say that I was totally unaware of Purple Day last year. My loss, I'm afraid. But this year, I am proud, along with my husband and my children, to be a vocal supporter of Purple Day.

Come Thursday, we will be proudly wearing purple, along with (hopefully) most of the combined approximately 700 students at a local elementary and middle school. That's hoping my youngest daughter and I are successful in our brief presentations on Wednesday to explain to the students why Purple Day is so important. And, equally, why it is so cool.

After all, how can you fail to be be awed by a story that starts with a 9 year old Nova Scotian girl and ends with purple tea parties and pizza parties, purple cocktail parties and fundraising events, purple art shows and pool competitions, a Calgary City Hall Purple Day Proclamation Celebration and a purple-lit CN Tower and Niagara Falls?

On the internet, people like to talk about videos or posts going viral. Might I suggest that thanks to Cassidy and, this year with the help of the Anita Kauffman Foundation, Purple Day has indeed gone viral.

Congratulations, Cassidy. You truly inspire us all. If there was ever a person to prove that one child person really can make a difference, it is you.

And on behalf of the Blue Jay and our family, the 300,000 Canadians and 2.5 million Americans and countless others around the world who live with epilepsy each and every single day, a very heartfelt thank you.

I wonder how many people are aware that epilepsy affects more than twice as many Canadians as those who live with cerebral palsy, muscular dystrophy, multiple sclerosis and cystic fibrosis combined or that one in 100 people has epilepsy? I wonder how many people are aware of many epilepsy issues?

Well, thanks to Cassidy Megan, I am sure the answer is many more now.

Another Resource ~ "Legal Rights of Children with Epilepsy"

I just came across what looks like another great resource, which I will be adding to the sidebar (under the Recommended Reads heading), but I wanted to tell you a little about it first.

As much as I am a Canadian through and through (and proud of it), there are days that I do wish I was an American. For the basic reason that the US has done such a great job of setting out their special education law, providing rights to parents and giving teeth to those rights. Unlike Nova Scotia, where we copy of some of the same language (such as the right to an "appropriate education") but leave it to lie flat on the paper. In other words, good luck trying to enforce that right here.

But my cynical moment aside, my surfing through the Internet has netted me another great find today. It's entitled "Legal Rights of Children with Epilepsy in School and Child Care – An Advocate’s Manual".

Written by an American attorney, Leslie Seid Margolis (Managing Attorney at the Maryland Disability Law Center), it starts with the basics about what epilepsy actually is and the different treatments for it, through all the American special education laws (known as IDEA and Sec. 504 of the Rehabilitation Act) which apply to children with epilepsy and other such disabilities and sets out the rights of the child in both the childcare setting and school setting.

Although some chapters are very epilepsy-specific (dealing, for example, with specific issues surrounding special education and students with epilepsy and the administration of emergency anti epileptic medication in schools ) much of it would apply to any child with a disability in the school setting.

The only real drawback I can see is that it is American, meaning it may well make you salivate when you read some of the many protections and processes available to parents and their children with disabilities in the US. So before anybody asks, no, the majority of those protections do not exist here. Or, at least, not in the easily-accessible manner they do there.

Still, as I noted above, we do use a lot of the American wording and I believe the shift is slowly coming to Nova Scotia to start to make "better and legally correct" (as that term is used in the US) IPPs. You know, what they call SMART IPPs (Specific, Measurable, Use Action Words, Realistic and Relevant and Time-limited). Just don't hold your breath. Change can be slow.


Still, all in all, it looks like a great resource. Check it out. When you have a cup pot of coffee and a lot of time.