'Spread the Word to End the Word'

Post by Lindsay Spilker Tate.

Enough said.

Do. Not. Limit. Me.

Wow, what a great video! You tell them, Megan.



So what say you? Let's distribute this far and wide.

Share it on your social networks. Share it with your friends. Show it to your children.

But, most important of all ...

Do. Not. Limit.

Anyone.

H/T to Ashley's Mom at Pipecleaner Dreams

Cross-posted at Free Falling

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

Posted Without Comment

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Curious

I have a question that I am am wondering if some of my readers might be able to help with.

I am wondering how many (if any) of your kids have been turned away from your local mental health service (most likely known as Child and Adolescent Services) due to the fact that they have "special needs" - or, more accurately, because they are mentally challenged.

I know many of these Services work with children and adolescents on the autistic spectrum, but has anyone been turned away because their child is mentally challenged?

I am really hoping I might get some responses here, whether they be yes or no. Thanks.

'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.

Yes, They Can

The Council for Exceptional Children holds an annual "Yes I Can!" competition.

This year 27 students were selected for excellence in one of nine categories: academics, arts, athletics, community service, employment, extracurricular activities, independent living skills, self-advocacy, and technology.



You can read about each of these individual's accomplishments on the CEC website.

And yes, two of them (Jake Anthony and Darlene Jakubowski) were Canadian. Interestingly, both from British Columbia. Something tells me that might just be significant.

At any rate, it reminds me of the old adage ... "Never Give Up".

H/T to the ed Week "On Special Education" Blog

Totally Illegal Not Legal ...

Not at all legally- related but very cool, I think.

Check this out.

The world's first ultra-accessible family fun park/amusement park specially designed for children and adults with special needs. Grand opening is April 10, 2010, San Antonio, TX.

Morgan’s Wonderland ...

• Located at the former site of the Longhorn Quarry
• 25 acres in size, and is the first Ultra Accessible Family Fun Park in the world!
• 8-acre lake stocked with a variety of fish
• Controlled entry and exit
• Features RFID locator wristbands and touch-screen display monitors so parents and caregivers can keep track of family and friends
• Fencing around lake edge as well as security fencing around the park’s perimeter for added safety

Activities & Amenities include:

• Specially designed air-conditioned/heated and oversized ADA-accessible restrooms
• 3 playscapes
• Train rides with wheelchair-accessible cars
• Ultra-accessible carousel
• Amphitheater
• Catch-and-release fishing
• Water cannons & remote-controlled boats
• Gymnasium (basketball, volleyball & tennis)
• Special Event Center for up to 700 guests
• Walk and Roll Path around lake
• “Around the World” – themed rest areas
• Water Works - water play area
• Off-Road Adventure ride
• Music Garden
• Swings (several types including wheelchair swings)
• Sand Circle™
• Sensory Village™
• Garden Sanctuary with Memorial Wall
• Several rest stops, picnic areas & pavilions
• 2 first aid stations & infant feeding room
• Braille signage, 3-D park model & service-animal rest area
• 2 gift shops
• VIA Transit Center

All that plus Morgan’s Wonderland is free of charge to everyone with special needs. And designed for individuals (both adults and children) with a broad range of cognitive and physical special needs, it offers many unique features such as braille signage, a 3-D park model and a service-animal rest area to make the park accessible to those who are hearing and visually impaired.

Go ahead and check out Morgan's story. But I would really suggest you watch this news story on the Park. Then you'll really get it.

Makes me want to pack up the family and hit the road south, it does...

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.

You Are My Sisters

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with sombre telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right.

Then we found ourselves mothers of children with special needs. We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychology.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the state to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have laboured to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis. We have learned to deal with the rest of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "Welcome to Holland" and Erma Bombeck's "The Special Mother". We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbours front doors on Halloween, and we have found ways to help our deaf children from the words, "trick or treat." We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolours, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together we special mothers and our special children, reach for the stars.

By Maureen K. Higgins (borrowed from Daisy's Cafe)

'The Eating Game' - Free Information Session

Remember that post from last year about The Eating Game?

Jean Nicol, a [former?] resource teacher in the Chignecto-Central Regional School Board (who apparently has a degree in nutrition and has spent 25 years working with autistic children) has has created a meal-planning tool to help autistic children overcome fussy eating habits.

It's called The Eating Game (Get Awesome Meals Everyday).

Well, you might just be intereting in knowing that the Provincial Autism Centre is hosting a free information session by Ms. Nichol on Tuesday, September 29, 2009, at 6:30 p.m. at the Provincial Autism Centre, 1456 Brenton Street, Halifax.

Created to support people with a broad range of eating challenges, The Eating Game is a resource filled with planning tools, food pictures and suggestions for use that support and encourage people in making optimal, healthy food choices.

The Eating Game is being used around the globe, not just by individuals and families, but by Occupational Therapists, Psychiatrists, Psychologists, Speech Therapists, Nutritionists, Early Interventionists, schools, preschools/daycares, Public Health and Group Homes.

Based on Canada's Food Guide, this solid and balanced approach to daily meal planning will leave you wondering what took you so long to start using The Eating Game.

For adolescents or adults who don't need the visual support provided by the food pictures in The Eating Game, the solution might be found using The Eater's Choice Daily Meal Planner.

The Beauty of the Games

The beauty of the Special Olympics isn't found in the ceremony and pageantry. It's not in the visiting dignitaries or those waiting to be introduced on the main stage. It's not even in the medals (purty as they are).

No, the beauty of the Games lies in the fact that it's the one place in this world of so-called "normal" that these youths and adults not only get to just be themselves but are celebrated for being themselves. Where, for once, they are not trying to 'fit in' to what everyone else thinks is acceptable, appropriate behaviour. It's the one time a year when they are celebrated for who they are. And celebrate they do.

I will never forget the first time I attended the Games, three years ago. The one thing that struck me so much on that occasion was how every single athlete was roundly cheered through to the finish. How that very last swimmer, who could still be a very long way behind after his fellow athletes had finished the heat, was still cheered just as heartily on to victory as was the first-place finisher. Cheered on to his victory.

And yet it's not just the athletes who flourish in such an environment. Rereading one of my favourite books this past weekend, I came across what struck me as the perfect words to describe why the Special Olympics are so vital, not just for the athletes but also for their families.

In the chapter aptly-titled "Acceptance", Barbara Gillis writes:

We all need people who see us as good and competent parents and who do not blame us for wrong is 'wrong' and difficult about our child. We all need places to go where people look past the fact that our child doesn't talk or doesn't respond to our directions. We need people who admire his physical beauty and his curiosity, or who recognize how clever he is in his mischief. We all need to go where our family is accepted as it is, and delight is taken in us and each of our children. And we all need people who show us the way, leading us by their example to the confidence or pride we have been struggling for. An ounce of this love can offset a pound of criticism and hostility. In its presence we open up like a day lily to the sun. If it isn't there, we have to find it...

The day lily survives the night, closing its bloom, protecting itself until morning, when it again shows its fullness to the sun. We can protect ourselves and exist in the places where people deny our child and us the sun of acceptance, approval or praise. But we and our child must have our sun. We must have people who shine on us and places where we can relax, open and grow.

This past weekend my oldest daughter and our family basked in the warmth of the sun. There are no better words to describe it.

Parent To Parent

It struck me last night that perhaps this should have been my very post on this blawg. Better late than never I suppose ...

In rereading my copy of "Changed By A Child - Companion Notes for Parents of a Child With Disability" (which, by the way, I highly recommend - notice I said rereading), I was once again reminded (as if I could ever really forget) of the importance and strength of the connection between parents of children with special needs.

Many years ago I learned that the absolute best source of information on what resources might potentially be available for my children was another parent. Not a social worker, a doctor or some other professional who is paid to help and support our family but another parent. One who has walked in shoes that fit at least somewhat similarly to my own. And while I lamented (and still do) about how hit and miss that made the process of any particular family ever discovering exactly what resources or programs were out there, I remain awed by how well that network can and does work at times.

On a related note, a large part of what motivated me to sit down and start writing this blawg in the first place was the realization, which also came to me long ago, that parents of children with special needs who also hold a professional degree in some area (be it medicine, education, law or some other profession) are in a unique position to make a difference for our kids.

For example, not only can the parent/lawyer bring a wealth of background knowledge as to what it's really like to live this life and how school boards really operate to their advocacy for a child with special needs, they can also connect with the client/parent at some deep level which can, I think, bring a sense of assurance to that other parent that they are finally dealing with a professional that really 'gets it'. That not just talks the talk but also walks the walk. And it certainly cuts down on the amount of background explaining that the parent/client must do.

Substitute the word teacher, psychologist or doctor for lawyer above and you get the picture.

READ MORE

Just A Reminder ~ "Adolescent Brain Development: Why Do They Do That?"

Do you ever wonder ... "Why in the world must they act that way? What has happened to my child? Will I ever get them back again?"

I know I have. Fortunately for us then, the next IWK Psychology for You Session will be held on Monday, May 11th.

“Adolescent Brain Development:
Why Do They Do That?”

But what I really wanted to remind you of, and what I often forget that, is that this session, like the others [see the sidebar under the heading "Places To Be -Upcoming Events"] is also available through the Nova Scotia Telehealth Network, a video conferencing communications network that connects health care focused facilities across Nova Scotia.

And can be viewed at the following NSTHN locations:

· South Shore Regional Hospital, Bridgewater
· Yarmouth Regional Hospital
· Valley Regional Hospital, Kentville
· Colchester Regional Hospital, Truro
· Cumberland Regional Health Care Centre, Amherst
· Aberdeen Hospital, New Glasgow
· St. Martha's Regional Hospital, Antigonish
· Cape Breton Regional Hospital, Sydney

Which means you don't have to travel to Halifax to attend. Just in case you would like to stay closer to home. Which is a good thing.

Instead, all you need to do is contact the Telehealth Coordinator via the main switchboard at the location nearest you for more information.

The speaker, by the way, will be Jason Chatman, Ph.D. a IWK Psychologist who has recently taken a position at the Adolescent Centre for Treatment and works with teenagers with behavioural and/or mental health issues who require 24/7 care and their families.

The session will includes a discussion on what happens to the human brain on the path from childhood into adolescence and adulthood and is to help parents understand why moodiness, quickness to anger, risk-taking, miscommunication, fatigue, and other familiar teenage behaviour problems are so common and how to understand, communicate with, and stay connected to their teens.

And previous Psychology for You sessions are now available online and can be viewed by visiting the “Healthy Families” section or the Psychology page within “Care Services” on the IWK website.

So now you know.

'A Journey of 1000 Miles'

So I attended the AVRSB Learning Disability Conference today.

As I already noted, the speaker, Rick Lavoie, has quite an impressive and extensive resume in the field of special education, holding three four degrees in special education and having served as an adjunct professor at numerous universities. He also served as an administrator of residential programs for children with special needs since 1972 and now serves as a consultant on Learning Disabilities to several agencies and organizations.

This they tell you. What they don't tell you is that he has what describes as "moderate to severe ADHD". Not that you (or at least I) could tell, not until he said it. I had noticed that he looked at his watch quite regularly but the fact that he used a wireless microphone, giving him the ability to move around at will, didn't stand out for me. Not until he mentioned it.

His sons also have ADHD. Which didn't really surprise me given that I've often found that the best professional in the field (be it teacher, lawyer, psychologist) is the one who is also a parent of a child (or himself lives) with a disability.

A few years ago (at the same Learning Disabilities Conference, if I recall correctly) I had the pleasure of listening to Dr. B. Duncan McKinlay, a psychologist who has been diagnosed with both ADHD and Tourette's Syndrome. His presentation was entitled "Life's A Twitch" (go check out his website) and it was an absolutely amazing experience to hear his story and insight.

But I digress.

Rick's topic was The Motivation Breakthrough: 6 Secrets to Turning On the Tuned-Out Child. He's a very good speaker and although I might have appreciated a few less anecdotes and a little more substance, it was an interesting and productive day. I took some notes so perhaps at some point I might be able share some of his thoughts on what exactly does (and doesn't) motivate, not just our kids, but all of us.

Did I mention that he's a very good speaker?

One of the first things I noticed was how he was able to connect with both the parents in the audience and the professionals.

And, it was in that regard, that there was something I really wanted to share with you tonight. But first let me say that I am neither a Republican (thank goodness) nor a Democrat (thank goodness again). Although I have been impressed, on occasion, by Sara Palin, when it comes to issues around disability. For example, if you haven't yet seen this video, I would highly recommend it.

But Rick told the story today of how he was asked to write a newspaper piece during this past US Presidential election with his thoughts on Governor Palin's promise to be a champion for "special needs families" because she "knows what they are going through".

He shared with us his response, which he now has posted on his website, and which I found truly amazing.

As an advocate for families of handicapped children for over three decades, I have taken a special interest in the role that Trig Palin is playing in the Presidential campaign. Trig, now six months old, is nominee Sarah Palin’s son. He has Down Syndrome. Governor Palin often tells her audience that she will be a champion for “special needs families” because “she knows what you’re are going through.

With great respect and empathy, I must say, “Sorry, Governor, but you don’t.” You will…someday. But not now. Not yet.

Trig is – and always will be – a blessing in your family’s life. But, Governor, your journey has just begun. You will understand…someday. But between that day and today, there will be a lot of other “somedays.”

Someday…you and your family will spend stressful hours in a hospital waiting room while Trig undergoes corrective surgery. The doctors will call it “routine” … but that characterization will seem foreign and insensitive to you.

Someday…a relative or “close friend” will suggest that Trig not be brought to a holiday function because “it may be too much for him to handle.” Your relationship with that person will never be exactly the same again.

Someday…some stranger in a store will stare at him and ask an insensitive and intrusive question. Startled, you will give a bland response. But for several days after the incident, you will generate great and clever retorts that you “should have said." (By the way, you won’t be able to recall these “clever retorts” the next time this occurs).

Go read all of it.

And watch your life unfold before your eyes.

Just Let Us BE

We've talked before about prenatal screening, particularly as it relates to children with Down Syndrome, although it really could apply to any of our special kids.

We've talked about the importance of signing the Petition to have the federal government pass a Prenatal Diagnosed Condition Awareness Act.

And now, now we can watch



and see exactly what we're talking about.

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.

Where Politics and Law Collide

I have intentionally avoided much comment on the US election. It's not like it's all that relevant here and it's far too divisive anyway. Unless, of course, you enjoy spectator sport.

Until today, that is. Although my attention was grabbed by the headline, "U.K. Mother Murders Daughter Because "Embarrassed" by Disability", I really didn't expect to find much more than the usual macabre story of a parent unable to "cope" with their child's disabilities.

I certainly didn't expect this particular political spin.

This trial, which is still in progress, comes during a week in which the devaluation of children with disabilities has been very much in the media spotlight, thanks largely to Gov. Sarah Palin's much publicized decision to carry to term her son Trig, who has Down's syndrome.

Prominent bioethicist Wesley Smith recently commented on the media bias against Palin, and says it occurs in part because, "Palin is viewed as 'the other,' symbolized by her and Todd's (Palin's husband) loving acceptance of Trig."

Smith said he hopes that the unconditional love the Palin's show to their son Trig will be an example for a world that is evermore justifying murder of the innocent.

"I hope that people will decide to emulate the Palins in their unconditional acceptance and love for their beautiful son, Trig," said Smith.

Well, yes, I hope so, too. But, I still wasn't sure I really saw the connection. Until I read Patricia E. Bauer's blog [which blog, I might point out, looks very interesting from the point of keeping up with Canadian disabiltiy issues].

Andre Lalonde, executive vice president of the Society of Obstetricians and Gynecologists of Canada (SOGC), says he is concerned that abortions in the case of Down syndrome may decline as women follow the example of Sarah Palin. Palin’s infant son Trig was born after she received a prenatal diagnosis of Down syndrome.

From the Globe and Mail:

As a vocal opponent of abortion, Ms. Palin’s widely discussed decision to keep her baby, knowing he would be born with the condition, may inadvertently influence other women who may lack the necessary emotional and financial support to do the same, according to Lalonde.

Dr. Lalonde said that above all else, women must be free to choose, and that popular messages to the contrary could have detrimental effects on women and their families.

Then I got it. Remember this?

Last year, the Society of Obstetricians and Gynaecologists of Canada and the Board of the Canadian College of Medical Geneticists issued a recommendation that all pregnant women be offered screening for Down syndrome. Sounds good, right? Until you consider the fact that statistics point to over 90 per cent of pregnancies diagnosed with Down syndrome being terminated.

Which leads to the question of just what exactly parents whose pre-natal screening show that their child will have Downs Syndrome are being told. And perhaps more importantly, what aren't they being told?

It's no real secret that doctors generally paint a very dark picture of life with Down syndrome during prenatal diagnoses. In fact, it's this very situation which has led to the Canadian Down Syndrome Society challenging the ethical implications of the recommendations by the obstetricians’ group. And to the currently circulating Petition for a Prenatal Diagnosed Condition Awareness Act. The Petition we discussed here.

The thing is that if we believe in a right to "choose", if we are ever going to give more than lip service to that concept, we must never forget that the key word is choice. As in making that extra effort to ensure that the choices are promoted in a fair and valid manner. Which means giving giving people all the information they need to such a life-altering choice.

So, please, if you haven't already, read this previous post and give serious consideration to the Petition.

But getting back to Sara Palin, in the words of Krista Flint, executive director of the Canadian Down Syndrome Association:

“We know overwhelmingly the message families get is ‘Don’t have this baby, it will ruin your life,’” Flint says. “And I don’t think people would look at Sarah Palin and see a ruined life. Regardless of politics, I think it’s a good example.”

So love her or hate her (and God knows there's enough of both swirling around the blogosphere), you have to give Ms. Palin credit where it's due ... she might just be bringing into light an issue that has for too long been in the shadows. And that, no matter what your political persuasion, has to be a good thing.

As an aside, it's interesting to note that Dr. Lalonde has apparently attempted to clarify his previous remarks. According to the L.A. Times,

Doctor Lalonde's point of view should not have been portrayed as a concern that the number of abortions would decline but rather, as expressed in the Globe and Mail, that women would be influenced by Gov. Palin's decision to keep Down syndrome children that they were neither emotionally nor financially prepared to care for. Here's a link to the article on which the post, since removed was based.

Which is a good thing, I suppose. Particularly when you consider that one of the principal precepts taught all physicians is "First Do No Harm".

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?