In typing my blog entry yesterday, I mentioned what a great
experience Cainan had at the Oregon Conservatory of Performing Arts Spring
Break Camp. I realized that I have
never told the full story of that experience.
Shame on me! It needs to be
shared.
If you follow the blog, you know we’ve been working on
Cainan’s IEP and we are advocating for him to be enrolled in a general
education class next school year. As
part of that process I brought up all of Cainan’s success in Sunday school, the
Awana program and all the Vacation Bible School’s he attended last summer. These successes were all dismissed because
they were church related. I think the
consensus was that people at church have to be nice and welcoming. Even though there’s a lot I could say about
that, I decided at that point, I would bring back more data next meeting
showing Cainan could be successful in a non-religious setting. I know the whole scenario is ridiculous but
I didn’t want them to have any excuses as to why he couldn’t be successful with
peers who don’t have a disability.
It was more challenging than I expected to find something
for Cainan to enroll in. His interests
are limited—no sports, arts & crafts or food related activities, all of
which there are a plethora of classes available for. Cainan’s real interests lie in drama, reading and being around
people. I knew Spring Break was coming
up and I was hopeful I could find something for him during that time. As it turned out, the OCPA had a Spring
Break Magic of Theater Camp available.
It was actually the only option available for drama or performing in our
area. I took this as a sign…
Once again, I have PIP to thank for this opportunity for
Cainan. I’m not sure I would have even
attempted a regular
class like this for Cainan. I would have been lamenting why there are no drama classes for
people with disabilities. But one of
the first things that happens at the first weekend of Partners in Policymaking,
is our minds are all collectively blown by the wisdom and information provided
by Kathy Snow. Now, Kathy and I don’t
see exactly eye-to-eye on everything, but she is brilliant in her view of
disability and how people who have disabilities are people first, just like any
of us. (You really should check out her
site: www.disabilityisnatural.com
for lots of great FREE information).
Following Kathy’s advice, I registered Cainan for the class
and did not mention his disability. It
isn’t pertinent to his participation in the class. I attempted to reach the instructor prior to the class beginning
so I could talk to her about how the class was going to be run and what
supports may be helpful to Cainan. I
was only able to speak to the organizer who gave me a run down of how the classes
were run each day, how many kids were registered and what the experience would
be like. I was grateful for the
information and it allowed me to start brainstorming what I could do to help
Cainan be successful.
The morning of the first class I arrived early with Cainan
so I could speak to the instructor. Oh,
did I mention that the class was Monday through Friday from 9:00 AM to 4:00 PM
and that they would be participating in a play from audition to performance
within that week while also learning about acting, make-up and set design? Yeah, this was going to be a pretty
intensive class and I was a bit apprehensive.
Anyway…
I began by letting the instructor know that I provided
Cainan’s lunch and I would also provide his snack because he requires a special
diet. They immediately took me to their
snack stockpile and showed me everything they planned to feed the kids. It turned out most of the stuff was food
Cainan could eat so we discussed quantity and variety. I was pleasantly surprised.
Next, I mentioned that Cainan would probably do best if he
could be paired up with a buddy who could just help him out in following
directions and making sure he understood the tasks they were working on. The instructor said that was her job and she
would make sure he was doing well with the class. I never mentioned Cainan’s disability, specifically, and they
never asked. Following Kathy’s advice,
I focused on the positives, not the negatives.
I never said Cainan can’t…Cainan isn’t good at…Cainan has trouble with… I just simply explained what he would need
to be successful. This whole
conversation took all of about two minutes and I was a bit perplexed about not
having the lengthy conversation and explanations I had envisioned in my head.
Since we had about 20 minutes to wait before the class
actually began, we had a seat and waited while more kids and their parents
filed in. I suggested to Cainan that he
introduce himself to the boy in front of us that looked about his age. Cainan hopped up, went up to the boy, introduced
himself, shook his hand and asked the boy’s name. Then he said, “Nice to meet you.
Will you be my friend?” I was
very proud of him. But then he
proceeded to do the same with every kid that came into the class. Before the camp even started, Cainan had
personally introduced himself to every kid, asked their name and asked if they
would be his friend. It’s a good thing
our hearts don’t burst with pride or joy even when they feel like they’re going
to.
After a brief introduction by the instructor and director of
the play, the parents were told they could stay for a few minutes if they
wished while the class got started. I
decided to stay so I could see what this experience was going to be like and
how Cainan would do with it. There were
a few of us who stuck around. Cainan
asked when I was leaving.
The kids circled up and they started doing warm-up
exercises, ad-libbing exercises, voice and speech exercises. The director was full of energy but spoke so
quickly, I could barely understand her. I could see Cainan was having difficulty figuring out what was
going on. I watched to see what would
happen (I’m actually pretty good at observing without interfering even though
the mother in me always wants to step in and fix the problem). I watched as Cainan struggled to participate
appropriately. I watched when it became
obvious he wasn’t understanding the particular activity they were doing and as
the instructor realized it and adjusted accordingly. I watched for an hour and half, until it was snack time and I had
a moment to grab the instructor and speak to her again.
Cainan came over and asked me when I was going to
leave. All the other parents were
gone. I told him probably soon. I asked the instructor if she had any
questions for me or if she wanted me to stay and help. She said no. I rephrased my offer to make sure she knew I could help out with
Cainan. She said no, again. I confirmed that she had my phone number and
could reach me if there were ANY questions or concerns. Then I took a deep breathe and waved to
Cainan. He asked if I was definitely
leaving now. I took the hint and walked
out the door.
That Monday was one of the longest days I’ve had in a
while. I kept checking my phone to see
if I’d missed a call or a message. I
convinced myself not to drive down there and check on the progress. I went to pick him up just 15 minutes early
so I could watch the end of the day activities. Wow, they worked with the kids up to the very last minute.
Cainan was overjoyed after that first day. I knew he had to be exhausted to have been
that active and that focused for so many hours but he denied it. He talked my ear off about all they had
done. He told me about the auditions
and that he had gotten the part of the Frog Consultant. He had the play with him with his lines
highlighted and he was excited to start memorizing them at home (did I mention
that in addition to the 40 hours of class time, they needed to work on their
parts and costumes at home?). He did
finally decide he should take a short rest before dinner and passed out for
about 45 minutes before I had to wake him up.
He also went back to bed, right after dinner and slept through until the
next morning. I figured this would
probably be a regular routine for the rest of the week and it was.
I was better the next days, dropping Cainan off like the
other parents and arriving close to 4:00 to pick him up. I asked the instructor each day how he was
doing and if she needed anything. I
always got the same answer—that he was doing fine and they didn’t need any help
from me. Cainan remained excited about
the play. We worked on his lines every
night. Memory is not a problem for him
but voice projection and articulation are big issues. He practiced and practiced.
I was touched when I saw other kids in the class naturally
including Cainan instead of excluding him.
One morning when I brought him in, the kids were working on a set piece,
a flag for the Wicked Stepmother Guild.
Cainan asked what they were doing and they told him. One girl scooted over and asked if he wanted
to help. She gave him a marker and
showed him where to color. He started
right in, just like all the other kids were doing. There was nothing “special” about him or how he was being
treated. I wanted to weep, but I think
the instructor already considered me a bit odd. I waved to him and left instead.
Friday afternoon was the play. Cainan’s supporters made up about a third of the audience (mom,
dad, both sets of grandparents and friends of our family). The play was FANTASTIC. I couldn’t believe all these kids came
together and accomplished it so well in just one week. Cainan was amazing. His part was funny and everyone
laughed. Afterward, several people came
up to him and told him he was their favorite.
I may have been a bit overcome…
Not once during that week did the words disability,
Prader-Willi Syndrome, limitations or exclusion come up. Cainan was fully included and actively a
part of that group of kids and that camp experience. He loved it. We loved
it. And he would never have done it if
my way of thinking about disability had not been radically changed. I would never have entertained the idea of
putting him in a regular extra-curricular class with same age peers like this. Never.
It just wouldn’t have seemed doable or appropriate. I’m soooooo glad I was wrong.
OCPA is offering two more camps this summer—a bit less
intensive since they go for three weeks and they’re half days. In fact, they are putting on Cainan’s
favorite story: Disney’s Sleeping Beauty.
There is no question I would sign him up for this but we’re still trying
to figure out cost and summer schedules for our family. I’m happy to say those are the only issues
we’re considering. I’m not even thinking
about whether or not Cainan can do it because of his disability. 
I regret allowing my thinking about
disability to make me feel that Cainan was disabled. He is not. He is VERY
able. But like all of us, he faces
challenges. His challenges are
different from mine; they’re different from a lot of people’s, but that doesn’t
make him any less able. I’m so glad we
had this experience. I’m so thankful
for PIP and all that I’m learning there.
And I’m thankful for Kathy Snow, who helped me realize disability is
natural.
