Headwinds and Tailwinds *

I have become quite a fan of a new blog I discovered a few months back.  The name is Kilometres for Communication - you can find it on the sidebar.

What's it all about you ask?

This blog is about communication. It’s about a special kind of communication called AAC. (I personally struggle with this term; it stands for Augmentative and Alternative Communication, which is too much of a mouthful for me. AAC is simply an alternative way to communicate when someone has limited or no speech.) This blog is about disability, and navigation of disability in a society which orients itself towards people who are able-bodied. But this blog is also about ability, diversity, capability, possibility, hope. It is about our humanity, and about our connection–one person to another. It is about community and inclusion, and about how wrong it is for any of us to exclude and to make the decision that someone does not belong because he or she is different. So this blog is also about the importance of accessibility, because accessibility is a key to inclusion, belonging and community.

A family affair - the 17-year-old younger brother of "an artist, educator, social activist, writer, story teller, gardener, community facilitator [who] happens to travel in a wheelchair and communicate with AAC" proposes (family in tow) to cycle across Canada to ... well, how about if I let them tell you?

We would meet with people who speak in creative and diverse ways, and with the help of the media, introduce them to Canadians so that never again could they equate not being able to speak with not having anything to say. We would invite people to wheel, walk, run and cycle with us, and we would invite organizations, small groups of people and individuals to host events across Canada to raise public awareness and funds to empower voices and to make accessibility and inclusion a national priority for the more than 3 million Canadians with disabilities.

Although a lot of people have walked, ran, biked, etc. across Canada to raise money and awareness on issues like cancer and for other "good causes" and the man in motion is back at it (actually I'm not sure he ever really stopped), I've never heard of anybody doing quite this. I've never heard of anyone giving a voice to people who struggle to communicate in our world quite this way.

And, as if that weren't enough, Skye (the main writer of the blog) often amazes with such a beautiful voice for such a young man.

The blog sets out his cycling journey from West to East coast (he is currently in Manitoba) but he ends many of his posts by connecting the logistics of his travels to the point of his journey.  Such as he did on Day 4 - West Vancouver to Mission BC, traveling through the mountains in British Columbia.

We all need to be explored. It’s a tragedy that there are people on this planet whose speechlessly brilliant summit will never be discovered because the people around them don’t realize that the hike is worth it. Remember this: the hike is always worth it. Always assume ability, and listen with the patience, care, and effort that you would want anyone to listen to you. Often, the hike is the best part.

Even though I have friends whose young adult children are non-verbal, the world of AAC (augmentative and alternative communication) remains foreign to me.

And so it is that, as if through a lens, I follow Skye's blog and observe and learn and think more and more about what it must be like to have people assume you have nothing to say simply because you find it difficult to communicate or to have them walk away as you struggle to communicate because they don't realize that's what you're doing (or maybe they just don't care) - I mean, it's a busy, busy world we live in and I can only stand here and wait so long, you know.

Tick. Tock. Tick. Tock.

But today's blog post was written by his mother, Gail, and titled "Headwinds, Tailwinds, Lessons Learned" (* hence the title of this post).  It was these two paragraphs that really caught my attention - and made me reflect on our own life with the Blue Jay.

It is now a number of days after I originally began writing this blog entry. I’m sitting in the RV by the side of the road in Moosomin, Saskatchewan, waiting for Skye to appear on this windy, rainy afternoon. By the time he arrives, he will have pedaled 48 kilometres since we last met. The promised tailwinds that are supposed to assist Skye on his journey have been elusive. Tomorrow, they are supposed to blow tomorrow, just as yesterday, they were supposed to blow today. It’s a mental challenge, waiting for these helpful tailwinds, yet getting back on the bike to pedal in the face of more headwinds.

In so many ways, this is the story and the feel of Kerr’s [Ed. Sky's brother] life—the hope and promise of helpful tailwinds; the disappointment when instead he is met with headwinds: the funding that doesn’t come through, the education that doesn’t happen, the waiting lists that never seem to get shorter, the well-trained assistants that need to move on in their lives. How does Kerr—and how do we with him—get back on the bike and keep pedaling?

Headwinds and tailwinds, indeed ... that would be a good way to describe our current experience with attempting to help our now 18-year-old daughter master that transition from childhood to adulthood, which can be hard enough for any adolescent but so much more challenging when you're ... well, challenged.

I must admit that I have felt somewhat like a bull in a china shop of late as I struggle mightily, furiously (and yet often it seems in vain) to help her access the services she currently so desperately needs.  Transition planning and more work on life skills at school.  And counselling or meds (but why would you choose medication when you have a pretty good hunch that counselling would do the trick, if only she could access it?) in managing her emotions, letting go of obsessive thoughts and learning better social skills.

But she's too high-functioning.  And yet not high-functioning enough.  She is too old.  Or she doesn't qualify because she's mentally challenged.  Or she doesn't meet some other criteria for service to this or that group because ... fill in the blank. I've pretty much heard it all as of late.

And yet, despite the headwinds I seem to battle, on a daily basis, at every turn, every once in a while I will find myself screaming talking to the right professional, a person who can and does seem willing to make that extra effort to find the Blue Jay the help she needs.

Talk, of course, is cheap.  And the proof is (and always will be) in the pudding.

But when I somehow stumble upon those rare individuals who actually seem to hold out hope (of doing baseline testing and setting appropriate work and life goals at school or the elusive referral to the psychiatrist that specializes in adolescents with various challenges or ... is it really too good to be true ...the possibility of a way to access funding for one-on-one counseling), it's like suddenly coming around a bend during a seeminly never-ending uphill climb and unexpectedly finding the headwind you've been battling might just be gone.  And perhaps, just perhaps, the wind might actually be at your back for a change.

I'm hoping Skye will soon find those elusive tailwinds.  And that people will pay attention to his cross-country journey and, more importantly, the reason he is doing what he is doing.

At the same time, I hope this isn't just some trick or sleight of hand and my own headwinds are finally diminishing.  Wish us all luck. We will need it.

Interesting Take

I've always liked this song, despite it's seemingly political take.

But I found this at Pipecleaner Dreams this morning and it made me stop and think. Even though it's hard to interpret the 'war' reference any other way, it never hurts to realize that perspective is everything.

Enjoy!

Sharing Our Lives, Our Memories, Our Selves

Retirement after 30 years of service in the US Navy. It's staring Lex hard in the face. All of his writing is good but in some places, it just seems to really shine. This would be one of them. Well worth the read.

But it was this particular comment that really caught my attention.

In a week, maybe 10 days the whole rig will go in a closet back home. Every once in a while it’ll catch my eye when I’m looking for something else. I wonder now what I’ll think about in those moments. What I’ll remember. Some day, hopefully very far in the future, it will fall to one of the kids to clean out the closet. Not knowing what any of it meant to me, because I’ve never found a way to talk about it that didn’t seem like boasting.

As any regular readers would know, we are going through a bit of a difficult time right now in our family. Although, come to think of it, I guess I haven't fully spelled that out recently. Following Mom's last hospitalization, we got some bad news. The kind of news you really don't want to ever hear. So, she's home now, and we deal with it day to day. Good days and bad days. With the goal of keeping her at home as long as possible.

Which takes me to part of the reason why Lex's comments above struck me so. I've known for a while now, in my heart, that I wouldn't have Mom much longer. This last diagnosis only gives a name to it.

But couple that with her intermittent dementia (intermittent in degree of severity but always there now to some extent) and I've found that more and more often lately some thought, some question will come to my mind about my family and I will think that I should ask Mom about that. Only to immediately realize that there likely isn't much point. Chances are that she will just say that she doesn't know or doesn't remember. And I know that, in the likely not too distant future, she won't be here at all to ask.

So it occurred to me that I hope that at some point soon Lex does at least attempt to let his kids know exactly 'what it any of it meant' to him. No matter how much he thinks it might sound like boasting or in some other way be inappropriate. Because even though at their ages, it would likely seem incomprehensible to them even if ever it crossed their minds (which chances are it won't), someday their Dad will be gone. And if he hasn't really made an effort to try and share the importance, the value and emotion, that he carries deep within him about his military service before then, a part of that very important history will be lost to them. And that would really be sad. A loss. Both for him and for them.

It didn't really seem appropriate to post this over in the comments at Lex's. So I think I will just leave it here on the off chance he drops by and it happens to catch his eye. And to remind the rest of us that no matter how disconnected or incomprehensible it may seem to us now, in the midst of the hustle and bustle of our lives, someday we, too, will be gone just like our parents before us. And our children will be left with that same emptiness, longing and sense of loss.

When that time comes, what do you think they might they wonder about? What sort of things might they wish you had shared? What questions might linger for them? And, if you had the chance, what would you wish you had shared with them?

A morbid way of thinking of perhaps. Or perhaps not.

Perhaps it's just a realization of the circle of life and the chance to do some things differently than we might otherwise would have. A chance to give a gift that at some time in the future our kids (and even our grandkids) might, hopefully, thank us for.

It's at least worth thinking about. That's all.

Grace

Or perhaps a better title to this post might be Never Say Never Part II

H/T to LawEddie

Never Say Never

"It feels like my legs are on fire and a million ants are crawling up my arms," Carly has written about the urge to hit herself.

I watched a recent piece on W5 about Carly. A young girl with autism who, after extensive ABA therapy, finally found a way to communicate. With the use of a laptop.

And although I watched the show with interest, I must admit that it slipped my mind until I read a reference to Carly at Mother of Shrek.

But it's a story that really needs telling.

A 13-year-old named Carly is challenging the conventional notions of autism, demonstrating emotional skills that lay hidden for years, until one day, a computer helped her reveal to the world what it's like to have her condition.

From an early age, it was clear Carly had autism. As a young girl, she would often rock back and forth for minutes on end, flail her arms and hit herself repeatedly. Equally troubling, she never gained the ability to speak.

Never say never. When Carly was 10, after years of intensive therapy, she surprised everyone.

Working with a computer equipped with pictures and symbols, she started typing and spelling words. At first it was just words -- help, hurt, head, teeth -- but soon she was assembling sentences.

She typed slowly, using only one finger, and the words she wrote stunned all who knew her.

As Carly learned to write better, she began describing what it was like to have autism and why she does what she does, such as making odd noises and hitting herself. It's riveting and in many ways heartbreaking to discover what it's like to be Carly, to be in her skin and in her head.

Besides the original story, you can read excerpts from some of Carly's recent conversations with her therapists. Here is just a sample:

My mom asked me a question that no one ever asks me What do I want
I want not to feel whats happening in my body I want to stay at home and not go to the farm I want to be like every other kid But I cant
Because I am carly
I cant sit for long times or even walk past an object with out having figths in my head I no I cant take that but my mind is fighting with me
I want to be able to go to a school with normal kids but not have to worry about them getting up set or scarred if I cant help myself and hit a table or scream
I want to be able to read a book by myself without having to tell my self to sit still and not close the book and follow each word and concentrate
I want to sit at a table with my mom and dad and worry about my body might do that I might not be able to control
I want to be able to talk to people and have them understand me the first time not respell over and over again Its to hard

Would you do me a favour?

If you are fortunate enough to have a 'typical' child in your life, take a moment to stop and reflect. And appreciate, yet once again, what you have. How fortunate you are to have been blessed with what so many take for granted.

And if your life is blessed with a challenged child, be they autistic, mentally or physically challenged ...

Many years ago, a friend made the comment that these kids aren't just 'challenged', they're also 'challenging'. So somewhere in the midst of all that challenging behaviour, pause to take a deep breath and think for a moment about Carly. And what it might be like to be in your child's skin.

And remember ... 'never say never'.