Today was graduation day for Nickolas. Nick isn't returning to Campbell's School next year but is transitioning to his home school (with Katheryn) in September.
As long as the Elementary Teachers don't strike.
I have been preparing for this for a long time.
We have been so happy that Nick went to Campbell's for 2 years, to become more prepared and older and more experienced. I think that we all needed that.
But now graduation day has come.
And I think we are ready.
Nick has grown so much, gained so much confidence
I am sad to leave the school. The experiences that Nick has gained in such a supportive environment is fantastic!
A Halloween Parade, meeting the Panam/Parapan mascot, golfing, hockey, meeting hockey players, and going to the zoo are just some of the activities that they have done over the last year
Nick also has therapy during school hours. In types of classes.
Like the Wild Wheelers is a class every week where the kids go around in their wheelchairs (inside and outside) and learn wheelchair skills, computer skills, yoga classes
This is their playground.
And of course one of the best thing about the school is being with kids who are just like him
With a team of people who are with him and supporting him every day.
But now the day has come, and I think that Nick is ready.
He will miss the school and his friends and teachers (and school bus driver). The school is small so he knows everyone, they know him. He gets around without a problem, the classes are small and he is the same as everyone else.
But his new school will be a change, he is still excited for it. He is excited to be at school with Katheryn and he already has some friends who are excited for him to be at school with them (all different ages).
Nick i s definitely going to miss his teacher. Mrs. Meyers has been his teacher since his first day at school last year. We are all going to miss her!
But this guy is ready for Grade 1!
As well, I got creative this year and we made our own Thank you gifts for his teachers, EAs, bus driver and OT and PT.
A mint plant
We had a therapist meeting with all of the T's at Campbell's (OT/PT/ST). It is an opportunity for Kyle and I to get together with everyone (including social work) to discuss what has been going on through the year and plan for the future.
The meeting went well, but he has made such huge progress in all areas that I wanted to focus on each of them. One of the hugest gains is not necessarily in his ability but is in his attitude towards therapy. It also gives us different perspective from the information we receive at the spina bifida clinic at Bloorview (and it makes me miss PT Kim and her experience).
To realize how far Nick has come in physiotherapy, I wanted to take a trip down memory lane regarding where we have been in our journey.
This is a little boy who has been doing physiotherapy since he was 4 months old. And not really liking it... at all
This was the child that some physiotherapy sessions I really wondered if we were doing the right thing by pushing him so hard. And we saw progress (slowly)
But it came... when he wanted it too.
(I just realized there is about 3 months between these pictures (Feb 2011/May 2011) and he's wearing the same pants!)
We had some sessions where he screamed and cried for the entire hour! And not just once, every... single... time. And we followed through, and didn't give up. I pushed for what I thought needed to be pushed for, even if he didn't really want it.
And his walker is a prime example (July 2011)
It took a lot of trial and error to find something that worked for him (this is walker #4 that we trialed in January 2012).
I've continued to help to push Nick through different mobility aids. I think we went through 3 1/2 years of therapy with tears shed at every single session. His stubbornness shining through.
And I have seen Nick realize what his ability and mobility is. With this realization came a change in his level of stubbornness. His energy spent working against us changed.
I have seen Nick transition to actually wanting to do things by himself. And realizing that he can.
This summer, balance and standing has become a game with him. Nick wants to practice his balance all by himself, to show off what he can do. To want to walk and push himself. Phsyiotherapy has moved away from goals and directives that I want, to goals and directive that Nick wants. And the change has happened.
"Look at me" (July 2014)
That doesn't mean we haven't continued to push him. Looking for ways to challenge him and work within our way of life. We've gone through using canes, which we started July 2013. Nick even walked during the graduation ceremony with his quad canes last June 2014.
Which of course meant that is was time to challenge him again
And again with some crutches that I bought in August 2013. And hadn't used with any success for over a year.
But Physiotherapy at Campbell's have really listened to me this year and have been working with him with the crutches. Really working with him, or I should say he has really been working with them.
So lets go back to our meeting this week. His physiotherapist Corrie, said what a pleasure he is to work with.
What?! This is the same kid? The one we've just been talking about? No crying, or fighting or being subborn? Actually doing new things?! Wow. I would never have believed years ago that the child who just turned his face red and couldn't catch his breath from crying so hard during physio would be a pleasure to work with.
And I am so beyond happy!
With this new kid they can challenge him without the fight. And he can really show off and learn what he is capable of.
They have moved onto the crutches. (Not the best picture I know).
A fall spent working with the crutches let Nick work hard on something. And then show off what he could do.
This past Christmas concert (that I missed and couldn't get the time off for) was the opportunity to showcase how all of the kids were progressing. Not just all of the kids but Nick especially. They changed the Christmas concert around to show off Nick and his crutches!
A group of kids (I think their Wild-Wheelers group) came in during the sing along of Rudolf the Red-nosed Reindeer. Nick was the last one in during the song...
And he really showed off! My parents went to video tape everything for me. For the video I took out the background noise, and the other kids
THIS is all I need to know about how Nick is doing!
He is doing something different, working and trying. He has come a long way!
This has come at a time when physiotherapy has become a challenge for me as well. The hope that I had years ago that Nick would be a functional walker (without assistance) has disappeared as he has been identified as having L3 function by PT at Bloorview. I have written a number of times about my feelings about this label.
I have been feeling that physiotherapy has all been very negative for us for a while. And to take the time to look at how far we have been and where we are right now has helped to put everything into persepctive.
Physio at Bloorview during out clinic visits have revolved around hips and glutes and extenders and stuff like that. I try to get it, I really, really do. I have the charts and the muscle groups and the rating scales. But I really need the reports to understand it all. And while we are trying to look into the future to try to plan. And while Physiotherapy expectations play a huge role in that, it isn't what physiotherapy is about.
Physiotherapy at Campbell's has been all about hope and work and showing off how far we have come, working towards a goal.
Katheryn is all ready for real school now! Grade one!
She started last week (and still enjoys going), which is always a good sign.
She gets to sit at a real desk (surrounded by boys), and her favorite parts of the day are recess, gym class, and the library. She has all of her friends in the class with her and she likes her teacher.
I've been trying to ask how school is going without asking the same questions every day.
What was your favorite thing you did today?
Did you have fun?
What was your favorite thing you learned today?
Who did you play with?
Nick's first day of school was today.
His second (and final) year at Campbell's Children's School for senior Kindergarten
Nick had a great day at school. Some of his friends were still there (including a little girl he talked about all year) and some new friends, including Alejandra that we've known for a couple of years (and who also has spina bifida).
Nick wanted to have a Ninja Turtle picture. So this is Nick with his nun-chucks
Nick is just jumping right back into school-mode. He is in the same class, same teachers, EA's he knows, same bus.
Today is Nick’s last day of school. School has been good this year. I was worried about it, about giving up control and trusting someone else to do it. I spent 4 years being in charge of everything, spina bifida related especially, and then you send your child off to school and give some of that control over. School involves a lot more than just putting your kid on a bus and waving good-bye.
There were all kinds of considerations and worries that I had in September. The bus was my first challenge to get over. Your child must be able to get up and down the stairs independently to ride the bus without a wheelchair. So Nick took the wheelchair every day (even days I forgot it in my car after a night shift and I have to take him in myself). In the end his bus driver was amazing and I wasn't worried at all.
Then is the question about mobility in the school. How will your child move around the school? Is the classroom accessible? Is there enough space for a walker or wheelchair to move around? Now the bathroom question. Catheterizing, who and when and how are they trained to do it.
Again, Campbell's is built for kids with walkers (and more) and has all the space needed.
There is the social aspect of schooling, including the fact that your child might be the only one with diapers. Can he keep up with his peers? Will his classmates be accepting? Will you child be social or shy? What/who assistants does Nick need to have in the classroom? And therapy. Nick continues to have his 3 therapies (OT, PT, ST). The social part we had more trouble with, especially around the diaper issues.
In the end Nick had 3 really great friends that he talked about all the time.
And today is the big day. Graduation Day
Because not every child is returning in the next school year. The last day of school is a graduation for all of the kids.
And Nick walked all the way up with his canes for his certificate
Nickolas was very proud of himself!
And even though he is returning next year it was great to see him so excited about graduating into SK.
He said good-bye to all of his teachers and his friends.
But it was hard that he didn't really get that he might never see his 3 best friends again. But next year will bring new best friends, and grade 1 will brings friends in his home school.
We were teasing Katheryn that since Nick finished on the Thursday, and she finishes tomorrow on the Friday, that they are both SK's now.
She didn't think it was as funny as Kyle and I did.
Now it is getting ready for all of our fun and excitement over the summer
Nicholas has a fantastic time in his Campbell school.
He has best friend, he has a girlfriend, he has a boyfriend. He talks about his friends all day, everyday. He wants to invite friends over, to the cottage, in the summer... Whatever we are doing he wants to have his friends along.
When he's home from school he talks about his bus drive. What his bus driver did, what they saw, what songs they sang.
We have beans so happy about his experience at school.
It is not just the social aspect of the school. Nick is learning so much!
He can read books (with a lot of encouragement), he writes name, he spells his name (all the time). He wants to use his walker (but not his wheelchair - which he mainly just uses on the bus) and move. He wants to be independent. In the house there isn't a lot of room for his walker, so Nickolas has be improvising, pushing a chair around the house.
He sings songs, he plays and learns and talks about what he learns.
He needs to work on his letters, so we got him a tablet. When I talked with his OT they said we need to work on his pencil grip, so we bought a big crayon for his tablet. Works great!
Campbell's school has been a great experience for him (and us) I haven't been worried about what he is doing in school, what resources he has and what support he needs.
In January we reapplied for Senior Kindergarten at Campbell's, but we also had to register him for his home school. So I got all of the papers to fill out, and put them in my bag... for a couple of weeks. I always meant to fill them out, but I had already missed the original deadline, so I kept delaying. Hoping we would get accepted into Campbell's again, and wouldn't need to register him.
Luckily we found out he's going back to Campbell's! Now I have another year of breathing room. Another year of therapy in school and school routine and learning in a small environment before he is in the 'real world'
One year before worrying about large class sizes, how he will move around the classroom and through the halls. One year to figure out and get him out of diapers, and catheterizing and EA's. Wondering and worrying about how accessible the playground is, what we need to inform the teachers, how to optimize his learning. One more year to figure out therapies and appointments and what we need and when.
School is going great! Nick is having a great time and learning so much!
Katheryn started SK last Tuesday, and she was nervous at first, we only found out who her teacher was and who were in her class the Friday before.
And Nick started JK today.
Oh my! They look so big!
And for being so good and posing for first day of school pictures.
I get to take some funny face ones too!
We've done lots of talking with Nick about school, and how he was going to have his teacher, and other students. And it would be fun.
So he has started to get excited about going.
(After the initial pictures I let Nick put his sweater on, it was kinda cool out)
Then it was time to wait for the school bus!
When we did our tour of the school in June we got to go on the bus, but Nick had been in his walker, so he didn't get to go on the ramp. But Nick will be taking his wheelchair on the bus (and leaving his walker at school for now).
So we got him all buckled on and ready.
He got a little jumpy when it first started moving, just it goes super slow and I even got a wave!
We got him into his seat and then all of the tying up and seat belts and everything came in.
(notice the canes on the back - yeah I got in trouble for that, apparently it isn't safe to have canes on the back of the wheelchair)
More straps, nice and secure, and closer to leaving...
And then Jennifer (his daycare) and I were going to be going, and he was going to be on his way to his first full day of school!
And Nick started to get nervous, I could still get a smile out of him.
But this is definitely his nervous face...
We talked about his teacher, and the classroom and that he got to ride a bus. So he knew he was going to be having fun, but he was still nervous about the change.
No tears (Nick or mommy). And then he was ready to go
Got another wave through the window.
And my little boy was off to his first full day of school.
I have a year to prepare for this day, and I did my research and know how important this is for him (besides which I have no desire to homeschool).
But it's that milestone.
Now he is going to school, all day, every day.
This is it!
It seems like we have worked hard to get this place, but also that it wasn't that long ago that we were here
