Wednesday, March 30, 2011

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 the Free Falling world, 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?

Saturday, March 12, 2011

MIssing You

UPDATE:  We better add former employers launching nuisance law suits to that list below. ~Walks away, shaking head and muttering incoherently ...

I have always really enjoyed reading other people's perspectives on various political and current events. Almost as much as I enjoy sharing my own.

Alas, I haven't been doing much of either lately ... seeing as how I'm lucky to catch up on my daily blog reading once or twice a week and my last post on anything vaguely political being back in October, preceded by one lonely post in September. 

In fact, it looks like I haven't regularly weighed in on anything really substantive since July ... geez, it's hard to believe I could actually be quiet for that long! [Those who know simply nod their heads in agreement...]

And so it is that I miss that discourse.

But it's exactly because I enjoy it and miss it so much that I hold out hope ... lonely forlorn hope ... that one day soon I will make my triumphant return to the land of the blog. 

I will not give up.

I will prevail over government bureaucracies that deny much-needed benefits; former employers who require a serious bitch-slapping; moody, irritable husbands, an incredibly demanding young adult child who desperately needs help from somewhere (anywhere) in learning to regulate her emotions and behaviour and navigate the social world; the energy required to get a new business seriously rolling ... and all the other daily struggles joys of life.

In the words of the immortal Schwarzenegger, I'll. Be. Back.


Monday, March 7, 2011

The Art of the Possible

Coming Together To Create Change - A Values, Vision and Action Workshop - the name of the Conference the Kit Kat and I attended this past weekend at the Oak Island Inn.

Co-hosted by both the CACL and the NSACL, it was Part One in a series designed to encourage family leadership in the continuing (some might say never-ending) struggle to obtain for persons with disabilities those things that you and I take for granted - the opportunity to go to school and be educated with our peers, to hold a job (true enough, there may be many days when we would rather not work but have you ever considered life on the other side of the coin?), to choose where and with whom we will live ... to live inclusively in society.

And it struck me yesterday evening (as I suffered through the migraine from Hell) that for me, personally, we could just as easily have renamed yesterday afternoon "The Art of the Possible".

We watched three separate video clips of "success stories" from across the country - in the first, a severely challenged young woman, Amber, moved from a group home into the home a former paid caregiver who had now become a real friend. This truly was a win-win situation for Amber as she now lived as a young adult in a room-mate situation as opposed to as a child in her parent's home or in an instiution, developed a second extended family who embraced her as one of their own, was clearly happy and well-cared for and once again lived nearby her biological family.

In the second clip, we met a young man, Chris, with a keen interest in all modes of public transportation - planes, boats or trains (especially trains); if it moved, he wanted to be on it. After making the move from a group home to his own rented house for a time, he was eventually able to purchase his own home with the help and guidance of his "microboard" - a team of family, friends and service providers who worked together to secure his future. With three paid caregivers, all close in age to Chris, who worked 48-hour shifts (which gave him much more consistency and flexibility in setting his own schedule than the standard three eight-hour shifts per day), he was able to be active and engaged in his community.  And, of course, ride a lot of trains.

And although I had trouble fitting my head around the third clip, it was, perhaps, the most empowering for me, personally. Would you believe that for the past 20 years, students with intellectual disabilities have been attending University in Alberta? Not just community college, but University? Attending and  actively participating in academic classes and intramural sports teams and "graduating" with a certificate right alongside their non-disabled peers?

Yes, I am the first to confess that I have a fair bit of difficulty seeing how that University experience could actually work for these students, but the three clips were certainly an exercise in the art of the possible for me, personally.

You see, for the past few years, we have had this semi-vague, semi-formed plan which involves the Blue Jay attending the NSCC after she finishes high school. The provincial community college system has become much more disability-friendly over the past several years, allowing students with special needs to access the accommodations necessary for them to obtain diplomas in their chosen area of study or, if they are unable to meet all the course outcomes, to participate in those portions of the curriculum that they are able and graduate with a list of employment skills. Since the Blue Jay has a strong interest in cooking, this seemed like a plausible possibility for her future.

But a few months ago, in a conversation with her resource teachers, in which I mentioned this plan (not for the first time) in passing, I was clearly and firmly told that the NSCC was not for the Blue Jay. That those programs were for persons who had an aptitude in a particular area and wanted to develop some more skills. That this was not the Blue Jay.  As I was literally walking out of the room when the comment was made, I simply observed that we would have to agree to disagree on that one. And then exited. Stage left.

And although the comment stunned me somewhat at the time, I really didn't think it had had that much effect on my thinking. But at the end of the day yesterday, I realized that ever since that day, those remarks had been subtly working away at a subconscious level and were starting to make me doubt the appropriateness of our plan. A plan which, by the way, the Blue Jay is fully behind and excited about.

Let's just say that is not so much so anymore. If students who are mentally challenged are successfully attending university with their more typical peers (even if that isn't an option I can picture for the Blue Jay), who are these teachers (or anyone else for that matter) to say that community college is not an option for the Blue Jay, to categorically state that she can not go there?

No, were I to hear those words again, I do believe my response would be much more along the lines of Well, too bad what you think. She has the funding available and if she chooses to go, she will go.

The art of the possible, indeed.

And yet, lest I forget, I witnessed something else equally inspiring and thought-provoking this weekend. Not only did the Kit Kat devote her birthday weekend to attending this Conference (where she was by far the youngest and the only non-parent present), she was actually the moving force in getting both of us there, convincing me that this was an event we should attend.

Yup, I was very proud to stand up today (on her 15th birthday) and acknowledge my daughter in front of our fellow conference participants. She's grown into quite the young lady.  On some days, anyway.