"I have a dream.."

Returning from the winter break, Ms. T told me she had to take that first week off to stay home to care for an ill family member. She told me that the district would send a licensed vocational nurse to be with Aidan at school, but I declined it and chose to accompany Aidan to school myself.

It actually turned out really good for me to spend those days with Aidan at school because, I got to talk to his therapists and see what it is they work on. It was also good for me because I got to see Mrs. B and Mrs. S teaching on their respective days. From what I saw, it seems like the teachers are getting into the groove of including Aidan and treating him as one of the kids. When Mrs. S reviewed the sight words with the class and called on students one-by-one, she even paused and asked me about Aidan and his computer. Miss L, the Inclusion Facilitator, had input all the sight words on his Dynavox, and on those types of activities, Aidan uses the Dynavox to participate. Unfortunately, I had forgotten to bring his Dynavox to school that day. Ugh!

I also got to see Miss L in action too. I can't say enough good things about her! She worked with us during Science. I followed her lead. Since the science teacher had the kids stay on the rug in little groups, Miss L took Aidan out of his wheelchair and sat with him on the rug with the kids. The science teacher talked to the kids about paper and had them touch and feel different types of paper - tissue, corrugate, cardboard, etc. Miss L sat with Aidan in her lap on the floor and helped Aidan to touch and feel each of the papers. It was so pleasing to see! Aidan was attentive and engaged. While they were in Science, I had to step away for 15 minutes, and when I got back, Miss L had Aidan in his gait trainer out with the kids at recess. I was so impressed! Apparently, she feels comfortable managing him with transfers and handling his body. Not many people do. And because Miss L is not a therapist, and surely, Aidan is more physically involved than the other children she's worked with, it's even more impressive. Her presence has truly made a world of difference for Aidan's school experience. I'm going to have to say, "I heart my Inclusion Facilitator!"

Interesting because Mrs. S told me that Aidan is like "Charlie" of Charlie's Angels. Apparently, he has a few kids that are his "angels" - his helper buddies. So when they do table time activities Mrs. S seats Aidan with his "angels." I think that is very sweet and thoughtful of her to do so.

Because it was the second week of January, and the Martin Luther King Holiday was coming up, Mrs. S read a book about MLK to the class and taught the children a little bit about MLK and how he was famous because he fought hard to end segregation of Whites and Blacks. Mrs. S asked the class and gave parallels if they could imagine a world where people were separated by the color of their skin. She gave examples of how people should accept differences. In my mind, I thought this was a great opportunity for her to use Aidan as an example for them accepting him even though he's different. But, I realized that Mrs. S was probably more wise not to single him out publicly. It was probably more politically correct to not mention it.

So Mrs. S created a class activity inspired by MLK's "I have a dream..." speech. She gave the kids paper clouds and directed the class to think about a dream that they have about the future and draw it out on their cloud. Though, she caveated that the dream could not be superficial and about material goods, like... wishing for a new Transformer toy, etc. She wanted the children to think about their own dream of something that would help people. Kids raised their hands with examples that their dream was: "... to not fight with their sibling any more," or "to clean up their room," or "to recycle more." When we got to the tables to do the activity, the kids were quietly doing their drawings on their cloud. I talked about it with Aidan and since it was going to be difficult to do it hand-over-hand with him, I started to draw it out for him. Although, I felt a little inadequate because my drawing skills are so poor. One of his "angels" asked me, "What's Aidan's dream?" I told her that Aidan's dream is that one day he will be able to run around and play his brother and his friends. She smiled and said, "That's a good dream."

It was strange though because when I showed Aidan the drawing and described it to him, he seemed to get a little sad. A little sad, upturned lower lip came over his face. I wondered if perhaps, it made him sad to think of not being able to do such things? Maybe he wishes it to be so much that it makes him sad that he can't? I can't know for sure, but I think that may explain some of his reaction. Aidan frequently amazes me at how much he does know. Sometimes its difficult to tell, but he is usually quite expressive with his emotions.

A trip to The Magic Kingdom

We took the boys to Disneyland to celebrate Connor's 4th birthday. It was their first time. We made it a 2 day venture with a night's stay at the Disneyland Hotel, so that we would get a chance to see the night time activities too, and possibly visit California Adventure the next day. I don't even remember the last time I was there! I forgot what a huge fortune it was to go there! Can you believe that for a family of 4, 2-day park hopper tickets costs nearly $600....just for admission! And...most of that time you spend standing in line and spending money on subpar park food! But...we do it all for the kids, right? Connor was beside himself with excitement.

When I had the boys pose by this Mickey statue for a photo, two other girls were waiting along side for the next photo opp. I told Connor to say, "Hi" to the girls and he introduced himself; "Hi, My name is Connor, This is my best friend Aidan." Inside, I thought to myself...Aawwww, that is so sweet! As much as Connor so often infuriates me with his strong-willed, rambunctious, defiant toddler behavior, I can easily forget those misbehaviors when he has moments like that. All things considered, Connor is actually very sweet and considerate of Aidan. Whenever we walk around anywhere, Connor insists on holding Aidan's hand, thus we have to push the stroller and wheelchair side-by-side so he can hold Aidan's hand, which sometimes makes it difficult to get through a crowd of people. But...we don't want to discourage Connor's affection for his brother. I am often amazed at Connor's constant consideration and genuine affection for his older disabled brother. It may have started with our parenting at home. When Connor is excited about something and shows me something, I tell him to show Aidan too. When Aidan lets his head fall forward and he needs help putting it back, I tell Connor to help Aidan put his head back. When Aidan is coughing and gags and looks like he might throw up, I tell Connor to help and grab the red throw-up bowl. Connor willingly and happily helps. He has even started to whisper secrets into Aidan's ear and even used Aidan to support his arguments with me! Connor will say, "But, Aidan wants to watch Thomas!" when in fact, Aidan hates Thomas. Like most parents, I constantly struggle to raise my children to be well-behaved and considerate of others, and its those special moments when he displays that kind of thoughtfulness, that I feel just a little bit of assurance that maybe I am doing something right...

I often ponder at what point Connor will become conscious that his brother is different. Right now at home, I don't believe that he is truly conscious of it yet. Since he has always known Aidan to be the way he is, it's nothing out of the ordinary to him. Though I am sure that when Aidan and Connor attend the same school and Connor's friends meet Aidan, they will probably start to ask him, "Why doesn't your brother walk or talk?" I'm not sure how Connor will react but, knowing Connor, I think he will just shrug it off and say, "I don't know, but he's my brother, that's the way he is," and he'll just go on with his day.

Here's Aidan in his mouse ears hat, displaying his recently mature smile with one less top front tooth...this is the first tooth to come out with maturity. Somehow with less teeth...I think he looks a little more mature...funny, huh?

Here's Aidan getting on the special handicap accessible boat on the It's A Small World ride. It was one of just a handful of attractions that he was able to enjoy. The other attraction he was able to ride was Jungle Safari. These two attractions had special handicap accessible boats that the wheelchairs can be pushed on to. We first tried to ride on some ride at Toontown and got turned away right at the loading point. I had even offered to pull off the special seater and strap it in the ride, but they turned us away saying it would be unsafe. At first I was annoyed and felt discriminated against. But...when Kevin and Connor came out of the ride and said that the ride was scary and a little jerky...it was probably wiser that we did not ride it. It surely would have freaked out Aidan. He's not too crazy about the larger than life characters too, e.g., Mickey and Minnie. He'll completely tense up and start tremoring when he sees the characters come his way. I basically have to shoo the characters away from Aidan.

I had emailed Aidan's teachers and therapists that he was going to be absent the 2 days for a trip to Disneyland. So they all knew about his trip, and in case the kids were going to ask where he was for the 2 days, I wanted to give Aidan something to share with the kids when he returned to class. So when we got back, I printed out a few photos for Aidan to take to school and told Ms. T about them so that she could share with the kids if they asked. I also recorded a brief message on his voice output device spoken in first person as if Aidan were saying it, saying that he went to Disneyland for the first time to celebrate his brother's birthday and that he had a great time. Ms. T and Aidan got back from school that day and she said the kids loved the pictures and the message. She said the teacher, Mrs. B, gave them the opportunity to share the pictures and the voice message to the entire class. I thought that was very cool of the teacher. In the back of my mind, I always empathize for Aidan because he cannot speak for himself, thus I try to fill-in-the-blanks for him whenever I can. Especially, in this case with the other children in his class, I want them to accept him and see that he is a cool kid and does cool things. I have high hopes that one day...when his communication is figured out...I am sure he will have lots and lots of things to express.

Hooray!

Things at the school have been going well....so 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!

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.

Partners

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.