yes, Virginia, Santa Claus is everywhere

There have been a number of Santa and Santa like sightings this week. It seems the spirit of giving is alive and well. So I have to agree with the old quote "Yes, Virginia, there is a Santa Claus.

Maggie and I just returned home from school. It is the last day before the two week break for the Holidays. Like every other classroom in America the day ended with a party. I'm not sure how many of these other parties were dance parties featuring mostly wheelchair users, though. It was hilarious and the kids had a great time. Teacher Joe, who was Maggie's middle school teacher,  took Maggie out of her chair and danced around the room with her. Maggie loved it.

Earlier in the week the class took the streetcar out to the Stonestown shopping mall to shop and check out all the decorations. In past years they've headed downtown to Union Square, but the weather was questionable and the mall was warm and dry. I didn't join them on that trip, but I know Maggie cam home from school very tired that day, and that is a good indicator that she spent a lot of energy jumping and laughing.

Maggie's friend Juan found something that caught his eye at one of the kiosks in the mall. It was a remote control helicopter. He was looking at it carefully. The kids were gathering for a photo with Santa and the kiosk was right near Santa's hangout. Juan went with everyone else to get the picture taken but returned to the Kiosk afterward. Mr David, (the same guy who wore the horse shirt in yesterday's post) helped Juan count out his money in the hopes of buying the helicopter. Juan did not have enough money to buy it, the gadget cost $35. David was explaining to Juan that it cost more money than Juan had. Obviously, Juan was disappointed.

That's when it happened The Christmas spirit, the kindness of strangers, whatever you want to call it. The guy in the kiosk simply gave the helicopter to Juan. A $35 toy was just handed over. Juan went from disappointed to over the moon. What a nice thing to do. That vendor absolutely made Juan's Christmas by doing that. I wonder if he knows what a big deal that was.

Perhaps catching some of that spirit, Santa Claus himself was very accommodating to the class. He let everyone in to take a picture together. Maggie, who claims not to believe, was convinced Santa was the real deal when she was allowed to touch his beard.

Maggie will miss her friends over the Christmas Break, This is her social circle and, without them she gets very bored. I can see why, they are a good looking group.

Robert, Maggie Santa, Juan and Tyre 

On behalf of these amazing kids and the amazing people who teach them and help them and love them, I wish you all the best Holiday season and I hope you too find Santa Claus everywhere you look.

Maggie was a perfect angel while I was at school. We also discovered a likely physical reason for her acting oug. It appears she is getting a UTI, and that makes everyone uncomfortable. It's no wonder she's protesting during changing sessions.

While I was there I snapped a couple of pictures with my phone. I'm still trying to get them over to the computer. Here's Maggie and Juan with Robert in the background. Maggie and Juan use their talkers to greet each other. She must have said "juan" 20 times and he would respond "Maggie." It was hilarious. It is also hilarious and very endearing that Juan, who is latino, has a talker with a British Accent. It makes him VERY exotic.

High School

Maggie has been a high school student for a full week now. She loves it. She loves the kids, the noise in the hallways, the bus ride, the teacher, everything.

Except the new schedule.

The morning bus is here at 7:10 A.M. That means she has to be dressed, cathed, fed, in her chair, hair brushed, talker programmed, oxygen tank filled, suction machine charged, everything loaded onto the back of her chair, down the elevator, through the basement and out in front of the house 75 minutes earlier than last year. Most of this happens while she is asleep. I finally wake her to put her jacket on and get her into the chair. She gets on the bus half-asleep.
This ungodly hour is forcing me to get things ready at night. I have a new system. I program the talker, put it in the bag and on the chair and park the chair where it can reach the charger. Same thing with the suction machine. That way they are charged and ready to go and already loaded. I have to do the oxygen in the morning because it would just bleed out overnight. That only takes a minute, though.

Her new classroom is very different from the middle school. The setting is a very large very bright room, which is great. It is a kitchen – two actually - and hearkens back to a day of better budgets when schools offered cooking classes. Apparently, an occasional class utilizes the ovens etc, and it will be part of the curriculum for Maggie’s class. That will give Maggie and her classmates the opportunity to mingle with the typical student population on their own “turf,” which is good.

There is another distinct change this year. Maggie is not the only student with a communication device. For the last two years in middle school, she was the only one routinely using the “talker”. She received A LOT of individual attention, which was great, and she was the QUEEN BEE for sure. Now, five of the six students in her class have them and use them. Maggie will have to earn the Queen Bee role now. (I have little doubt that will happen). Instead of the individual attention, Maggie will have to keep up with the other kids and that will likely result in huge strides in her abilities to manipulate the device.

When I went into the classroom, I was greeting the students. Three of the boys I know from before. There is one other boy and a girl that I did not know. I was greeting the girl and I heard a synthesized voice say, “Hi, my name is Juan. Hi my name is Juan.” It took me a minute to realize he was talking to me. (There is LOTS of activity). I went over to him and said “Hello Juan, I’m Sally, Maggie’s mom. It’s very nice to meet you.” He shook my hand, beamed at me and stole my heart.

I hope he and Maggie go to the prom.

End of the Rainbow

Transition day. Summer school ends today. Maggie will move on to high school next month. One of her classmates is also moving to high school, but he will be in a different class. Maggie will not be alone in the new class, however, she will rejoin friends from years past. There just are not any that many students in Maggie’s situation – that is kids with significant physical disabilities who have good cognitive skills. The few that are near her age in the San Francisco School district have generally been in her class since kindergarten. There are a few just older than Maggie who are already in high school and those kids will be back in our world once again.

Not all of the physically involved kids are in special day classes. Those that can handle it are in full inclusion (regular classrooms) so they are not in Maggie’s class. Maggie could not keep up with that and would be miserable. She would make everyone else miserable too. She’s a smart kid, but she needs things to be paced in a certain way and presented so that she can process them visually etc. It is a laborious task, but when it is done correctly, she can really demonstrate her intellect. Often kids as physically involved as Maggie also have significant cognitive impairment. Maggie’s impairment is not significant. I am certain that the damage to her brain and the repeated surgeries and illnesses have affected her cognitive abilities somewhat, but she is a pretty smart chick. She wants to interact and show everyone what she knows.

This past year she was the only one in her class who had the ability to use the communication device. That meant a lot of attention was focused on her, but it also meant she did not have any peers using a similar device. There was plenty of communication with her girlfriends and with the other kids in the class, but having a peer using a similar form of communication challenges her. And she rises to the challenge. In the class she will enter, I know at least two other kids use these devices. Maggie will love that, even if it means she is not the Queen Bee for a while. It may be bumpy getting adjusted, but I am looking past that and expecting a good experience.

Before she gets there, though, we have a month off school. Rather than a week at the beach, we will spend part of it trying to get to the bottom of whatever these medical issues are. The school nurse called again today with more alarming news that necessitated a call to the pulmonologist. They are scheduling the procedure to scope her airway and lungs and her GI tract as well. There are some freaky colors coming out of her various tubes – but she is smiling and generally healthy. Go figga. I have learned from experience, however, that anything strange is a harbinger of problems to come. You cannot ignore it; you have to deal with it.

When they investigate strange occurrences with Maggie, you always get a very strange answer. It inevitably starts with, “Well, Mom*, this is something we’ve never seen before.” And my knees get weak. I can hear the rest now. “All these strange colors…. Maggie seems to actually BE the end of the rainbow. Good news: We found a pot of gold. Bad news, it’s in her right lung. Oh, and she’s allergic to it.”

*cringe – I hate it when they call me mom