Keep on Dancing: Turning 6

Just like that, another year has gone by and, as is the case with all kids, year 6 brought some interesting changes.

First and sadly, Keira graduated from (read: "aged out of") the intensive therapy program that we fought so hard for her to be a part of. I've probably mentioned it before, but it's a program that Keira attended 3 days per week, for 3 hours each day. It included PT, OT, speech, and feeding, plus lots of social interaction with kids much like her.

The program is open to kids ages 3-6 who are in need of all the services I listed. Though I fought long and hard from the time Keira was 2, she wasn't actually accepted into the program until she was about 4 1/2. The excuse I got was that they didn't know if she had the stamina to endure 3 full hours of therapy at a time. I didn't know how they could be so confident that that was the case and I was frustrated when child after child, often not even 3 years old yet and/or with higher functioning entered the program ahead of her. Note that this is the only program like this in the area and it can only accommodate 12-15 kids at a time. Keira finally got into the program when we agreed to have a one week "trial" to see how she would hold up. She blew them away [gasp!] not only with how she "held up," but how hard she worked and how much she enjoyed the program.

So, at age 6, the program lets kids go and helps support the child's transition into public school. Keira attended preschool last year at the same place where the "medically fragile" kids from our town go to elementary school. As such, I was pretty familiar with the school program and personnel and felt pretty good about her spending more time at school. For one, I perceived, we would spend a heck of a lot less time in the car, driving her back and forth to appointments every day. And Keira would be able to continue seeing all of her therapists, just less intensely. Just an hour per week for each of them.

Keira and Grandpa at the tea party

Still, I was sad for the program to be ending. Who else in Keira's life, I wondered, would ever provide her with the experiences that this place did? While in the program, Keira played with dolls, went camping in a tent in the middle of the group room, had a tea party, was in a play (complete with speaking parts, sets, and costumes), went on an Easter egg hunt, and played baseball. I was stupefied by how they managed any of these things.

Once early on when I picked Keira up, her therapist told me how much she had enjoyed playing with dolls that day. "How in the world?" I asked, because, naturally, my first thought is that I should try to duplicate this at home. Well. Picture this. One therapist to hold Keira in a sitting position and support her head. A second therapist to manipulate Keira's arms. And a third person to move and manage the doll, bottle, and other play materials for her. I was so happy for Keira to get to experience this "typical" childhood activity, but I also realized, and mourned the fact, that these types of activities could not be duplicated in "real life." So when the program's team asked me about how I was feeling about Keira graduating, I was nearly in tears when I said, "Who else is ever going to do these things for her in her life? Ever? I mean, how will she ever play baseball?"

As each child graduates from the program, they have a special ceremony that is unique to the particular child. This was the cutest. thing. ever. Jeff and I, and Grandma and Grandpa sat in the chairs on one side of the group room while each member of the group gathered on the other side with their personal therapist. Keira was rolled to the front by her therapist and her smile grew as she noticed all the familiar faces watching her. The therapist held her green pre-recorded speech button next to Keira's head and with one head nod and one phrase at a time, Keira said something to the effect of, "Welcome to my graduation! Lately, my favorite thing in the program has been playing baseball! So, today, we are going to play baseball. But first, we are going to sing! Repeat after me!"

She began "Take me out to the ball game..." Which we all repeated in song. Keira bumped the button with her head for each phrase in turn, something that they had been working on very recently. And she mostly got the turn-taking idea, but sometimes went ahead with a solo rather than waiting for us to repeat her.

"Now it's time to play." She reported which kids were going to be on which team....

"My team is up to bat first. Who gets to go first?"...

"I do!"

Keira's therapist helped her to hold the plastic bat in her hands. Everyone in unison shouted "One, two, three," at which point Keira was helped to knock the large bouncy ball off of the tee. Keira's therapist pushed her through all the bases while the crowd cheered. The smile on her face was to die for.

Each kid participated in their own measure. Some in wheelchairs. One kid was in a walker/gait trainer. One was lying prone on a skateboard-like contraption, propelling with his his arms. A couple were fully capable of walking, but needed lots of assistance to follow the instructions of the game. The "outfield's" job was to pick up the ball and put it back on the tee. Everybody was a winner.

It was just adorable to see how each kid participated in their own way and with their therapist's assistance. Each kid looked so proud and so engaged. It was a beautiful thing. I wished I could share that moment with the whole world.

After the game, the kids lined up and Keira was guided down the line and, in trick-or-treat fashion, each kid presented her with a laminated page that included his/her own photo, message, and artwork which was then compiled into a very special "goodbye" book just for her.

Soon after that sweet day, Keira started Kindergarten. I was so pleased that, without me even suggesting it, the IEP (special education) team decided that Keira should spend the mornings with an assistant in the general education classroom since she thrives on social interaction. I loved this idea, since most of the other medically fragile kids are unlikely to speak with or interact with Keira much at all. Keira is happy to go to school. Happy to ride the bus. Happy to come back home. And that's all I want. Learning is a bonus.

Here is a picture of Keira when we went shopping for her to get a new backpack and lunchbox for school. As usual, she's cracking up at Liam.

This summer, I discovered that Keira LOVES strawberries.

So for her little party we had a strawberry theme, ate homemade strawberry ice cream, and she wore her strawberry pants. We were happy that Papa felt well enough to join us. Papa is one of Keira's favorite people (and I think the reverse may be true as well) and unfortunately for Papa, the two had a lot in common what with their eating problems and hearing aids. Keira's favorite gift this year was probably her "baseball," bat, and tee.