Thinking About Inclusion and Paradigm Shifts

I was honoured to be one of the panelists at the screening of the incredible documentary, Including Samuel at the University.  There were four of us sharing our responses to the film and our hopes and fears about inclusion for our children.  I was invited because Aidan is just beginning his journey into the system.


Photo courtesy, Dan Habib: http://www.includingsamuel.com/home.aspx


What stood out for me the most was the answer to the question, "Where does inclusion work?" 
The answer, drumroll please.....
"In the family." 
Whole heartedly. 
Proudly. 
Rewardingly.  
As I watched the film I kept thinking of my father in the 1970's and how he wasn't included.  He was sent off to a hospital where he wore his pajamas all day while watching television in the sitting room. Our family watched as the paradigm shifted.  As patients began to be dressed for their day.  Still watching television, but given some dignity while doing so. 

Things changed at the hospital, so my dad's entire ward  was re-located to an institution.  The Funny Farm - people in our town called it.  A different ward than that for the insane or mentally challenged: this ward was a chronic-care ward which housed mostly very old people. Dad was the youngest one there, at first, until a teenager who had been in a car accident and was paralyzed, and speechless was admitted and shared a room with him. 

Over time, as the paradigm continued to shift, people in the chronic-care ward were taken out into the community to do "regular" things.  Bowl, with a trough-like plank on their knees to push the bowling ball down the alley from their wheelchair.  Shop at the mall, and eat in the food court.  They were even taken on the Chi-Cheemaun ferry cruise from Owen Sound, up to it's summer spot in Tobermory. 

For those outings, I skipped school and went along too.  It was fiercely important to me.  You see, Dad had been a Captain and Pilot on the grain ships before his illness stopped him in his tracks.  So, the trip on the ferry was very important to us.

Photo Courtesy:  http://www.flickr.com/photos/bobolink/4764169129/

I would go along as a helper, and during one of the earlier trips I pushed my dad's wheelchair to the bough of the ferry so he could look out the window and enjoy the scenery of Georgian Bay.  A group of "typical" people were sitting nearby, and when they saw us coming, they looked disgusted; like we were going to ruin their ferry-cruise experience.  They ended up moving seats to be further away from us.

I remember being so hurt by that.  I didn't know how to handle it, I just felt it like I'd been kicked in the stomach.

Fast forward fifteen years.  The trips continued - but I was living out West at the time; so I didn't go.  Mom always told me about it, and sent photos.  On one occassion, the Captain of the ferry invited my Dad up to the wheelhouse to visit with him.  It took several workers to lift dad up the narrow stairs; but they did it. 

That's something else I'm fiercely proud of.  That times change.  That attitudes change. That individuals like my dad were finally given a fair shake and the respect they deserved. 

I've got more to say on the Including Samuel documentary and Aidan, but that will have to wait for another post.

Change

Your family is perfect.
Take heart that more and more people are becoming aware.
Change is slow, but so worth educating for.

I wrote that on Bethany's blog, and realized it's what I needed to hear too! 
I send that message out to everyone who is spreading the word to raise awareness about how much the "R" word hurts us.  People are hearing the message; it's making people think - which is always a good thing.

Of Paints and Brushes and Owls and Stuff

This post was also published on Another Kick at the [Paint] Can.  Why?  Because I'm a mom, and I like to multitask.... a lot!
When I started painting, it was for myself.  I wanted to try to capture the images that floated through my mind; and I wanted to play with acrylics, and learn how to use that medium.  When I looked at works of art by illustrators like Rose Cowles,  something in my heart would long to do that too.


So, I bought my first paint set with my Christmas money.  I've probably already mentioned that in an earlier post, but it really was a pivotal moment for me.  I'd been aching to get my hands on the paint, the canvas, the brushes, the ideas, for over a year.  When the time came to jump in, I was ready. 



Then came another pivotal moment: when I realized that I could make my paintings into cards and sell them to help raise awareness and funds for our local Down syndrome society.  I approached the Board, and asked if I could. The Board was on board (awful pun intended), and so The Little Gull Project began. 

To say I am very proud of The Little Gull is an understatement. 

I'm very proud.  But, I'm also quite aware that my paintings are at the experimental stage.  There are a lot of wonderful artists out there, like Diane Duda, and I'm happy to learn from their creations.  Dianne uses text in many of her paintings, and that inspired me to try it too.  Take this little guy, for example:



This painting is an experimental project on paper. What do I like about this painting?  I'm pretty happy with the text collaged onto the owl's belly.  I think I could have done better with the bleeding hearts.  I should have used canvas instead of paper, as the paper buckled from the thickness of the paint.  I'm not happy with the background because of that buckling.  I'm thinking a different colour for the sky might be a better plan.  I'm tempted to cut the owl and tree out, and collage it onto a canvas, or wooden block (something I have yet to try).

If you have any advice on how to make this owl better - please leave a message.  I'm happy to learn! I'm in need of a mentor, or two, or ten....

The Little Gull has a lot of room to grow, and I'm okay with that.

Where Poetry and Tae-Kwan-Do Collide

Aidan gets a lot of air time on the old blog....maybe because he's the smallest, and I spend the most time with him (the big boys are at school). Perhaps it's because he has Down syndrome and it seems right to write/advocate/share/chronicle, etc., about Down syndrome on the blogosphere.  I don't think the big billy goats mind that they aren't written about as much.

But, every so often an anecdote comes to mind about the other boys, and I want to put it down so I remember. 

So....
This is a story about the middle-est billy goat,
Liam.
Age 9. 
And poetry. 
Oh, and a little tae-kwan-do too.

Liam is a fidgety boy.  He bounces, spins, fidgets, plays drums on his knees, does strange things with his cheeks, and we love him whole heartedly.

We put him in tae-kwan-do to try to learn some self-discipline and self-control.  Also for some physical activitiy which he was craving.

He's doing great.

At school, he is fidgety, and not getting down to work.  I went in to talk to his teacher.  She explained that they were writing two word poems.
She said that he right away wanted to do his poem on tae-kwan-do.
No surprise there.
His poem was as expected, about a dojang, white dobak, high kicks....
and the last line of his poem was difficult to read,
but it looked like: "bar fights."

Bar fights?

Hmmmn.  His teacher looked at me.
I looked at her.
We chuckled and shrugged.
I was thinking did he get that from Bugs Bunny?

Later, in the car (on the way to tae-kwan-do), I remembered his poem, and told him I thought it was terrific...but that I couldn't quite read the last line.  How did it go, again?

Bare foot.

Oh, right. :o)

Little Operation

Today we took Aidan to the hospital for minor surgery.  He got tubes put in his ears.  The hope is that he will hear better and be able to reproduce speech sounds more accurately. 

If this doesn't help, then we're pretty sure there's another issue.  Perhaps apraxia?  Time will tell.

He wasn't very impressed with not eating or drinking this morning.  He made his way to the Cheerio cupboard 8 times, only to be turned away empty handed.  Poor pumpkin. 

He was polite with the nurses, up until a point. The point being when they held onto his arm or foot firmly to put numbing cream on the back of his hand and a monitor on his big toe.  He yelled out, "ooooo," and "owie."  It would have broken my heart if it wasn't so darn cute.

I was impressed that they let me take him right into the operating room, and wait with him until the anaesthetic knocked him out.  I held him and sang "The Owl and the Pussycat" for old-times sake.  Just like  I did 4 years ago when he went under for heart surgery.  Ah, good times.

Aidan plays a Christmas Carol

Make an on-line slide show at www.OneTrueMedia.com

Holidays are Over, sigh.