School Transition

Our 2 years at Campbell's Children's School is coming to a close.
I am so incredibly thankful that we were able to have our time at Campbell's with the support and therapies and inclusion.
Nick is not the kid with the disability and the wheelchair and other equipment in the class. The one that is different. Nick is the same as all of his other classmates, there are many classmates with equipment and wheelchairs or walkers. They have a group called Wild Wheelers every week!

His class only has 10 kids, 1 teacher and 2 EA's. So there is a lot of support.
And I don't have a lot of concern when Nick is in school.

So we had a transition meeting with Campbell's and Nick's home school.
The school board, CCAC (which is community nursing), the principal of the new school and the special education teacher (called a SERT) where there to learn about Nickolas and his needs. Nick's therapists (speech, physio and occupational) as well as his class teacher were there to tell everyone about Nick's needs and experiences.

I was ready with my updated pamphlet for everyone. And printed out enough copies for everyone to have.

School Pamphlet - 2015 - Confident

And then everyone had an opportunity to talk. It was good for us to learn where Nick is as well.

I had my whole binder all ready and prepared, and also had resources from the spina bifida and hydrocephalus association for educators. 

Speech therapy will not be a problem, he will be discharged from them in June (as he ages out) and she doesn't think he needs to continue. Which is good, because the waiting list is 2 years (so that means 2 years without therapy, unless we pay for it privately).

We talked about his needs for the classroom, and what kind of equipment he will have. That is all OT, so we will have an OT assessment and recommendations. Nick will have his computer and his walker that will go to the school. He also uses a stander, which we don't have at home, so I'm not sure if this is his or not for school or just a loaner.

Nick will need enough room to move around the room.

The SERT teacher and principal also needed to know about what kind of help he would need. This is for EA requests. The EAs are part of the school and not assigned to any individual child. Morning, recesses, lunch and home time would all be times he would need extra help getting shoes/boots on and ready to go outside. Transferring between stander he will definitely need help, but I don't think he will need help to get in and out of his wheelchair to walker.

It's hard, because we want to plan for needs he will have for the school year. And like a lot of stuff when you are applying for government things you want to be harshly realistic. There is a lot of support that he currently gets at Campbell's and we need to remember that he will now be 1 kid in 30, instead of currently 1 in 10 (with 2 EAs), but all of those 10 have special needs.

It is so hard to know what we don't know.

I'm worried that we are missing stuff (and even now I can't remember half of the things that we talked about) so we are trying to have another organization (Resources for Exceptional Children) come to school meetings to help to support us and help us with the system. I'm hoping that at an upcoming PA Day for Nick we can go to the new school and explore a bit. Nick already knows their yard (including the accessibility issues with the yard) from Katheryn's Sparks nights.

I think there is going to be an OT assessment to try to address some of the issues; like only one independently accessible exit, and one other door but a pretty inaccessible yard door, which has a ramp with a step up and a door that opens over the ramp. They will also look at the classroom and other (?bathroom) issues we might come across.

I am so glad that we have Campbell's because they pretty much are able to talk to all of the issues and Kyle and I were just there for the ride. And they will continue to be there for a resource for us and the school as needed.

Both Nick and Katheryn are excited to be together next year!

Therapy Progression - Physiotherapy

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).

And finally the one that works (April 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.