Our PT found out that there was a giant swing that she thought he would be able to do. I stewed over it. Colin has done the giant swing at camp and it's fun but the way he's positioned wasn't ideal. And, at camp there are docs and RTs and nurses and outdoor extreme people who all know their jobs very well and take them very seriously. A lot of time is spent on safety and lots of precautions are taken.
Long story short, it was decided that Colin would use his evac sled or stokes sled and be able to lie down in it with all of equipment. We tried it at home and took pictures. Our PT sent the pics to some of the leaders so they were aware of what entailed Colin to be able to swing. And, she brought the sled over early so they could see it. So, that was settled. We planned to have him go up early so we could make sure he got his activity done before we all pooped out.
Leading up to the day Colin was nervous. He even told Priscilla that he'd rather stay at school and do MATH! But then he got used to the idea and even thought it would be fun :)
OH, and the field trip day coincided with Nurse Nancy's last shift with us. After 12 years of working with Colin she and her husband are leaving Vermont and moving to Florida.
As I said on my Facebook status:
"End of an era here. Nurse Nancy Lanza just finished her last shift here. She was with us for 12 plus years. She started doing baby visits with Colin and eventually became a shift-care nurse when we started getting nursing coverage for him. She and her husband are moving to Florida. We are all very saddened here. We'll get to see her one more time on Tuesday at a little gathering for her but I won't want to say good-bye then, either. Colin says she'll miss her but I don't think he has a clue as to the huge hole that will be in his life without her. She was the best video game player and they conquered lots of Nancy Drew PC games, as well as others. She knows him like a book (well, as much as anyone can figure him out, lol!) and it will be tough goings without her. Of course, we wish her the best :) "
Colin's teachers wanted Colin to go on the bus with the kids so Nancy, Colin and I got a ride over to school in the van by Gene. He was going to drive the van up to Northern Lights later on so we could leave earlier than the kids. We got to school and went to the bus. Yay, there was a handicap bus! But, don't get excited, the lift didn't work. Tried and tried. The bus driver said he had been taught to use it earlier and it worked. I asked him if he knew how to use it manually, and I pointed to the bar that you use. He picked it up and wanted to know where to put it. I won't even go there. I said forget it.
And, yes, the bus company will be getting a letter from me ;-)
The kids were all on the bus and restless. Priscilla was on the bus with our bags while we were outside with the teachers and the bus driver. Priscilla came out, at one point, and said, "Unfortunately, one of the kids wanted to know why Colin had to go." I was pissed. Kids suck sometimes! I said, not very appropriately, "Who is it and I'll kick his ass!" She said it was a girl. Huh. I'd still kick her ass. But, being the diplomat that she is, Priscilla didn't tell me who it was. I was very frustrated and sad and my emotions were already running high because of it being Nancy's last day. Colin was undaunted and was just his happy self. I called Gene and had him come BACK to school with the van so we could drive up. Colin's teacher really wanted to wait and have them send another bus or fix it because "we're a team" and all that and I appreciate that but I didn't want the kids to have to wait any longer.
Gene picked us up and we dropped him back off at our house and we headed up to Northern Lights. We've very lucky it's only about 15/20 minutes from home. We got there not too long after the class. Christina, the PT, met us up there. Colin and Priscilla joined the group while Christina and I chatted with some of the leaders/guides. They were very awesome people--reminded me so much of the staff at Double H. Young and enthusiastic and very in tuned with the kids. AND, they were very excited to include Colin and get the kids to understand INCLUSION.
We broke up into small groups. About 6 kids in our group along with Mr. Dabritz the humanities teacher. Started off with a team building activity. The kids had sections of half pipes and they had to work together as a team to pass a ball around the circle. Lots of talk about teamwork and citizenship and talking things out and including every one.
Colin was also able to participate on the Whale Watch. It's a super huge, rectangular, wooden teeter-totter. They lifted Colin right up onto it and set him in the middle and put his brakes on. The kids had to get on one by one and try to balance it by working out who should go on what side of the teeter totter. They never did get it balanced but had fun trying.
Colin got to watch the kids climb poles and leap off and that kind of thing. Then when the kids were still doing an activity, we went over to the swing area and got Colin settled on his sled and all strapped in. Then the kids came over and the leader had everyone grab onto the sled and lift Colin up so he could get hooked. Then they all gathered around and watched him swing! Colin liked it and enjoyed swinging high in the air and flying through the woods. When he was done, he said, "out, out." Then the leader had the kids hold the sled over their heads while he got unhooked. When he got down, everyone cheered. Again, they talked about inclusion and how people have different abilities but everyone wants to be included.
That was that. It was now lunchtime and we were ready to head home. Gene headed out to go to lunch with Grandma, Grandpa and Julia, and Uncle Bill and Aunt Jean who were visiting from Texas. We headed home to unpack and unwind and get ready for Priscilla to come back and finish the afternoon of school with him.
I hate that Colin (and Casey) is so different than his peers. I honestly think it hurts me more than him. He isn't a very social kid but I'm sure he'd love to have a friend who could understand him and hang out and play wii with him. Someone who would not have any qualms about being around someone who needs to be suctioned, repositioned and basically needs help with everything. But then, again, he's never known anyone like that so maybe he doesn't know what he's missing. I wish I could be that friend, and in a way I am, but I'm still a parent but I am his best friend, too. Casey is his friend/brother, too, but there are many times that Casey annoys him so there are times he'd rather be with me, than Casey, ha ha.
Another thing that Colin has going on for him is that he is emotionally younger than his years. In so many ways he is much more naive than his peers. He tends to like books, movies, shows, toys, that most kids of his age have long forgotten. That's okay with me, too. I get to keep my boy younger for a little while longer. AND, we don't have to deal with the drama of being a pre-teen. But, then again, Colin has been exposed to so many more medical things than most of his peers. How many kids his age have been taken in an ambulance and rushed to the hospital because they 'plugged' and went into respiratory arrest. How many kids have been intubated and spent weeks in the hospital in the PICU. How many kids need to use numerous machines every day to stay healthy. So in this way he is more mature than them.
All of these things add up to my boy being my boy so I'm okay with that. I just wish I could have a tougher exterior so that I wouldn't think about what others think of my boy. I'm okay with him. I wish everyone else could be.
