Monday, November 30, 2009


Things at the school have been going well that I sometimes am in disbelief. Could I be dreaming or hallucinating? The teachers have been great. The kids have been really great. The inclusion facilitator is amazing! And the therapists have been great! Is it too good to be true? Am I gonna wake up one day and find out it was all just a dream?
First, let me start with the teachers. The teachers have really come along with figuring out how to include Aidan in the classroom. They even figured out a way to specially include him in their recent Thanksgiving Play! With the help of Miss L, the Inclusion Facilitator, they gave Aidan the job of introducing the class to kick-off the play. Miss L programmed Aidan's communication device with the one line for Aidan, "Room 1 would like to introduce our class play, The First Thanksgiving". With Ms. T's help, he triggered the device to speak out the introduction from the device. I rushed over from Connor's preschool to catch the play. Many curious and proud parents were standing ready with their camcorders and cameras to document their kids' debut performance. To my surprise, they had Aidan situated front and center, in front of the class, dressed in his self-made Indian outfit. The other "Indian" children to his right and the "Pilgrim" children were to his left. He had a huge smile on his face! On cue he triggered the device and made his introduction. The play was very cute; even with a song. I couldn't tell you what the story was about because I was focused on watching Aidan's reactions and still reveling in the fact that they not only crafted a specific role for him, but it also featured him prominently, front and center! That was so cool! Full-inclusion at its best.
The kids have been so warm and friendly. After their initial questions and curiousity, they have just come to accept Aidan and have truly befriended him. The kids now speak up for Aidan. When the teachers are passing out stickers to those that are sitting quietly, the kids speak up, "What about Aidan, where's Aidan's sticker?" There was one particular day that I subbed in for Ms. T and accompanied Aidan to school. One little girl from another kindergarten class came by and asked me about Aidan; I didn't even have to say anything because one of Aidan's classmates explained and answered her questions. Aidan's friend even pointed out his intrathecal baclofen pump (Aidan's surgically implanted drug infusion pump) and said it was for his muscles (to relax the muscles). And also pointed out his g-tube and explained it was for him to eat. Wow! I was impressed that she knew so much about Aidan! And she just explained it matter-of-factly and very simply in a way that the other 5 year old could understand and accept.
And just like one would expect in any school setting; there are social cliques. Aidan's clique is about 4-6 kids that seem to gravitate to him. I spent a little time with one little girl in his class who is supposedly Aidan's best buddy. She is so sweet and warm and friendly with Aidan. She taught me some things that I didn't know about Aidan...that he has 4 favorite things in school. She informed me that his favorite things were: 1) the kitchen outside; 2) the kitchen inside; 3) watching her hula hoop; and 4) the house. The little girl's friendship with Aidan seems truly genuine. She holds his hand, whispers in his ear, and talks to him like the normal comprehending kid that he is. On a recent field trip the little girl's mother had told me that her daughter had woken one morning and told her that she had a dream that she married Aidan. Is that just too cute?! The mom also told me that her daughter shares stories to her about Aidan everyday. I really hope their friendship will carry on beyond kindergarten. It would be great if these friendships he develops now will carry on throughout his elementary school years. That would be really wonderful.
Miss L, the inclusion facilitator, is remarkable! She shows up everyday in the classroom, observing, advising, guiding, facilitating! She coordinates and leads monthly Inclusion Team meetings where she, and I, and Aidan's teachers and therapists all discuss ideas, issues and Aidan's progress. Every week she programs his Dynavox to include the class's "story of the week". Miss L even observes the kids and helps guide their behavior towards Aidan. She advises them not to "mascot" him...not treat him like a pet and to talk to him like a person. Hooray for Miss L! She has even looped Aidan in with the Adapted P.E. teacher, who sounds like another great teacher. The A.P.E. teacher sent me an email about ideas she had for Aidan for P.E. She plans to build special equipment for him like a "bowling ramp" so that he could bowl or kick a ball in for soccer or basketball or pass the ball to a friend. Great thinking outside the box! Hooray for the A.P.E. teacher! I am so floored that she cared enough to come up with an idea that actually creates more work for her and she even wants to include it as a goal on his IEP (individualized education program).

The therapists at this school have also been very impressive. I find the therapists at this school are much better than the ones at Aidan's former special ed school. This is contrary to what I would have thought. You'd think that the therapists at a special ed school would have the most experience and know how to work with disabled kids. But, the occupational therapist at Aidan's old school just did not know how to work with him. She limited his therapy time to 1 hour per month, breaking down to 15 minutes per week -- what can you get done in 15 minutes?! I met Aidan's new school's occupational therapist and at our first meeting she recommended to me that she wanted to increase his OT services to 1 hour per week....asking me if I was ok with that. Are you kidding me? YES!! Finally, someone that knows what to do and how to work with him! It's been my experience with government-funded therapies is that when they see little to no progress, they are quick to cut services. To my pleasant surprise, this OT wanted more time with him and knew how to craft a reasonable, achievable goal. Hooray!
If I am dreaming, don't let me wake up!

Sunday, November 15, 2009

Just one of the kids...

Aidan is sitting in his new classroom chair. It's the third one the school district has purchased for him. The two chairs previously purchased for him at his old school were very expensive, hugely bulky, impractical and uncomfortable for him. This mobile floor sitter was purchased for use at this new school. This chair has worked out wonderfully. It has adjustable tilt, has wheels and brakes, wipes clean, and is low to the ground, great for kindergarten classroom rug time; and best of all - was only a fraction of the cost of his two previous chairs!
Aidan gets put in his adapted bike by his physical therapist. The kids in his class love his bike and always ooh and aah when he's in it. Aidan and his bike usually draws a crowd of kids around, so much that he usually can't get pushed very far because of the traffic created by the kids around him. Aidan loves it.
The adapted bike was purchased by the school district for Aidan's use. On the urging of Aidan's old preschool teacher, this adapted bike was surprisingly approved for purchase by his new school's physical therapist so that Aidan would be able to socialize and be included in recess activities with the other children.
Aidan in his gait trainer. This piece of equipment helps him with weight-bearing and supports him in initiating steps. The kids seem to love and marvel when he is out of his wheelchair.

Sunday, November 1, 2009


A good partner makes all the difference. Ms. T has so far, proven to me, to be a wonderful partner for Aidan. She is really the biggest key to making this full-inclusion experience work. She has been with the district for 15 years as a health care assistant. And for most of those years she has been working with special needs children in full-inclusion. When I first thought of having Aidan fully-included in a regular school, I strongly considered hiring my own private assistant for Aidan. My thought was that I could have complete control and monitoring of my own hired aide, and that person would have complete accountability to me. But for various reasons, I decided to go with the district provided assistant. Though, Ms. T wasn't just assigned to Aidan, I specifically requested her. I became familiar with her from her summer working at Aidan's special ed preschool in his classroom. Aidan's preschool teacher thought very highly of Ms. T and she recommended Ms. T to me to consider to be Aidan's future aide. Before Aidan's school year at his special ed shool ended, Ms. T and I connected and we were both enthusiastic and excited about working together.
Now that school and their partnership have been in full-swing, I think getting Ms. T was the best thing that could have happened! She is enthusiastic, diligent and caring. She accepts suggestions and directions well. And she even doesn't mind when I ask for the details of the school day....though, she is often more detailed and long-winded then I need. When she reports back to me how things went at school, I am often surprised at the things she does with Aidan. she has proven to not be intimidated or put off by Aidan's idiosyncracies. She has gotten good at reading Aidan's body language and knowing when he would be feeling uncomfortable. She has proactively gotten him up and out of his chair and sat him on her lap for classroom rug time. I've often seen other adults who don't know how to react or don't know what to do when Aidan gets into his hyperextension, stiff posturing. Without my telling, Ms. T knew exactly how to handle him and help him relax. She has been good about getting Aidan into his special equipment. She has even been mindful about maintaining Aidan's integrity. One kid had asked, "Is he wearing a diaper?" And Ms. T responded, "No, it's a pull-up," making it sound a little less babyish. Since Aidan has been vocalizing more, she's really encouraged the children to continue to talk to Aidan and embrace him to get more out of him. She really gets him in the mix and mixes it up with the other children. I learned from her that Aidan likes to play in the play kitchen with the other kids in his class. Who knew? Apparently, younger brother Connor likes to play in the kitchen at school too...little known facts that Dad is not too pleased about or willing to brag about his boys!?
I hope Ms. T is willing to stay with Aidan for a long time. She's told me that she has been with her past kids for several years and usually until the kids change schools for one reason or another. But, I always secretly worry about the future though....what happens when Aidan gets too big and heavy for her to continue to lift for diaper changes, and getting him in and out of equipment? Will they try to assign a male assistant for Aidan? Aidan is probably different from the other kids she's had since he requires maximum assistance, complete lifting for all transfers and positioning. Regardless of what the future holds, at least Ms. T has helped us get off to a great start.

*Certain names have been changed to protect individuals' privacy.

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