Thursday, March 24, 2011

Including Aidan - and things that keep me up at night

I recently spoke to an elementary special education class at our local university as a follow-up to the viewing of the documentary:  Including Samuel.   I was invited as someone at the beginning of the school journey; and, was joined by two other moms whose children had been in the system for a while. The professor had this poster outside of her office door:

I must say, I smiled wide when I saw what (and whom)she'd added to it. Funny, but when I first saw this poster, it was in the hallway at our local elementary school, and I remember thinking, "that's interesting, we should make a similar poster with Aidan on it."

Then, during our discussion, one of the guest speakers spoke about "normalcy" and not separating our children with special needs out.  She is an advocate for as complete inclusion as possible.  Her daughter is not pulled out of the class for most therapies - those are done at home.  She spoke about how important it is to her that we NOT make our children the "poster child" for disabilities.

Hmmm.  Suddenly I had to re-think everything I've been doing since Aidan was born.  So far his photo has been on the side of a bus, in the paper, and he's been on television three times (twice about Music Therapy, once for the Telus Flight with Santa).  I post his photo all over our flickr family page, and have joined three flickr groups about Down syndrome, and started one myself called Down syndrome in the Family.  Not to mention blogging about Aidan and Down syndrome in the 31 for 21 challenge, and posting on Facebook about Spread the Word to End the Word campaign.  I even went so far as to have my on-line friend Erin make this poster for me:

Why have I done all this? 
For advocacy, ironically. 
To show the world how much we love Aidan; and to show the world just how amazing and capable he is.

Now, have I been inadvertently achieving the opposite of what I set out to do?  Have I been moving Aidan backwards instead of forwards?  Have I kept Aidan in the box on the shelf labeled "disabled?"  Have I opened the doors for inclusion to happen naturally and effectively, or have I placed hurdles in Aidan's path?

I have to keep thinking about this.  It's good to get different perspectives, and it's good to question ourselves sometimes. 

At any rate, these are the thoughts that keep me up at night.


Becca said...

Ah. Very interesting point you make there, Carol. I think we should continue to advocate for our children in exactly the same ways we've *been* advocating for our children. Awareness has to come first before total acceptance by society, and without our efforts, that won't happen. We can strive to keep things as "normal" as possible with regards to our children's upbringing, education and place in this world, but the awareness piece, the "more alike than different," is too important.

Kasey M (Summer 2011) said...

Carol, I too have been thinking a lot about the same situation. However, I have to stick with my personal teaching philosophy; a combination of "it depends" and "everyone is different, not less". What I mean by this is that everyone has a different life situation, and we all strive to have what is best for us. If Aiden is the most content as a person in the mornings, maybe that's a perfect time for him to see his specialists. If not, then maybe it's the evenings that work best for him, right? I have very little experience here, but I am inclined to think that simply doing what works best for him is the best way to go about it; it doesn't have to be advocacy vs. inclusion... In my opinion.

Carol N. said...

Becca, as someone I met early on in the journey - I appreciate your insights. If we didn't have the on-line community we built up through flickr, blogging, and now facebook, I would have felt isolated.

Kasey - as someone I've recently met, I appreciate your support too! Sometimes I'm so distracted by the big picture (inclusion, advocacy, normalcy, etc) I forget what is most important. Aidan's needs, and being in the moment right along with him.

Thanks for that :o)

Smilen Champ said...

My name is Jenna and I am from BC. Canada. One of my friends is on the hi compain, which is the poster that aiden is added to. She has her picture on the hi posters and is one of the spokes person for the campain. Her name is Tracy Jo. I was born with a rare life threatening disease, which also causes developmental delays which I have.

Carol N. said...

Hi Jenna - thanks for visiting our blog - and for telling me about your friend, Tracy Jo! I think it's a great campaign :o)

Can you tell why I smiled wide when I saw Aidan's picture attached to it? I think the Professor that thought to do that is brilliant!