Guardianship Presentation # 4 ... But Whose Counting?

Nothing like very last minute news but ... we do say better late than never, right?

Just a note to let anyone who might be interested know that I will be giving another presentation on Supported Decision Making and Guardianship in Nova Scotia tomorrow, Friday, April 1st, at 6:00 p.m. at Acadia University in Wolfville during the weekly Friday evening SMILE time. You can find a little more information on the sidebar under the heading "Places To Be".

That's all for now then.

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?

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.

The Art of the Possible

My youngest daughter and I attended the Values, Vision and Action Workshop this past weekend, the first in a series of workshops in the Coming Together ... To Create Change: A National Family Leadership Workshop Series.

Co-hosted by both the CACL and the NSACL, it was billed as an exploration of who "we" are - as a movement, as family leaders and as agents of change.  And although the history of the Community Living movement was discussed - where it came from as a movement and the milestones that have shaped its history - as was the future of where we want to go, at the heart of the weekend was a discussion about creating good lives for our sons and daughters and all people with intellectual disabilities and what is needed to make those dreams and aspirations a reality.

I have been to many different workshops on various disability-related topics over the years and while all most have been valuable, I have found that the vast majority have tended to consistently fall short at the end of the day.  Although powerful stories and valuable information are often shared and many possible solutions are brainstormed, there never seems to be any concrete action plan created.  Instead, we all go home and individually return to the task of slogging our way through the fight of trying to ensure that our loved ones are meaningfully included in society.

And that is where this workshop felt different. 

But before we got there, I would like to share with you a realization I came to Saturday evening; namely, that for me, personally, the Saturday afternoon  program could have easily been renamed "The Art of the Possible".