A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Friday, January 23, 2015

Therapy Progression - Occupational Therapy

Occupational Therapy is one area that we slacked on for a long time. Concentrating more on the big physiotherapy aspects.
But occupational therapy is coming into focus now. It is the day-to-day part of life.
The holding a pencil, putting on clothes, doing activities of daily living (like entering your house).

It is also walking and wheeling. Sure physiotherapy looks at the legs and body in the walker, but occupational therapy looks at everything else. Watching areas of pressure in the elbows and wrists, functionality of the wheelchair.
 It is using your hands and fingers. Writing, drawing, dexterity.


 Nick is having a very difficult time with that. Nick has exploded in his interest and ability (surprising how those go together) in regards to language and physiotherapy. But he could really care less about writing anything other than his name or colouring inside the line.




This is a picture that Nick drew in July. One of the first person-pictures he has drawn


 Even drawing pictures, he really doesn't have any interest in it. I have only a couple drawings of Nick's on the wall. The rest are crafts that he has done it school, usually cutting and pasting.


 When we discussed occuptional therapy last month, we talked about how to make things easier for Nick. Yes he needs to learn how to write, but he spends so much time and energy on the actual physicality of making letters that he isn't actually writing ideas. He is just copying. He just got a computer at school (that will travel with him to his new school next year).

This took Nick 7 minutes and 17 seconds to print out


The computer lets him get his ideas across in words, without the struggle to make the letters.
Using a computer makes things easier, but with actual typing, but also with a program called word-cue. With this program when you type a letter "t" it gives you choices of 5 different words "the" and you pick the number associated with that word. "the" may not be the best example. But it helps to get words out.

The computer can also be used for pictures and creativity. This picture he made on the computer for Christmas (of course a ninja turtle)


But even with a computer as a writing-aid, we still work



And we've been working on some hand exercises. Helping to distinguish between different sides of the hands. Moving little and ring finger separate from pointer and middle finger (live long and prosper... or ninja-turtle related high-three)

Nick has a computer for school right now. It will travel with him when he moves schools and has programs for him loaded on it. We are also looking at getting him a designated computer for home. I have my laptop, Kyle has a desk-top, and we have a table, but it just doesn't have what we need for Nick. So we are having a writing aid consultation to see if we can get some type of computer for Nick to use at home.

Thursday, January 15, 2015

Therapy Progression - Speech

Nick's speech is amazing. He is inquisitive and asks about words and why we say different things.
He has the funniest expressions. My favorite right now "I did not see that coming"

He also likes to say bad words. Whisper them really, because he knows they are bad. "What the heck" is the extent of his 'swear words'. And I think that he picked it up from Ninja Turtles (Thanks Raf).
But like I did for the physiotherapy and how far we have come. I want to look at how far Nick has come with his speech.

This is the boy that didn't speak for 2 years.
And I worried and worried. Got him in speech therapy with his sister early, and he just wouldn't speak. He was very happy to just play quietly, watch and listen (and laugh)
It was 18 months before he even started to babble!
(This video is from May 2011)


Katheryn also did speech therapy, and she was Nick's greatest supporter.
There were times that I caught Katheryn coaching Nick to say words "Say Daddy Nick, say da-da-daddy"
Once he started to make sounds you could tell that he was excited to show off! (This video is from July 2011)



Just after Nick turned 2 he would talk, but he wouldn't always answer the question you were asking. Every colour was blue, every number was four. 




And then he finally started to explore his vocabulary (around the same time he got his first wheelchair). And if you watch the video from April 2012 you can hear that attitude and personality that we always knew was in there.




After Nick's words started coming, then it was working on the sounds. But that wasn't really anything new with us. The same sounds Katheryn needed help with, so did Nickolas.


Last year Nick got distracted too easily in group speech therapy. He was quiet and he was shy.

Speech therapy progression showed what we already knew. He is getting more comfortable and overcoming at least part of his shyness. And he wants to work on his sounds.



L is a big one. Leo Leads. And you can correct him, he will try again to make the right sound. He wants to speak well.

Now he sings, he has favorite songs. This is a video of his favorite song "R-E-D red"



We have made up some other songs, but this one is his favorite, and he will sing it LOUDLY, if he sees anything in the song (i.e. firetrucks).

And recently he has an O-R-A-N-G-E song (which of course is helping with his spelling as well)



When Nick was 18 months old and I worried so much about his language, I had a number of fellow parents (of older kids) who told me it will come. It was really hard to believe them at the time!

Wednesday, January 14, 2015

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.

Monday, January 12, 2015

Education Information

I have been looking at psychoeducation testing for a while.
A way to understand if Nick understands things differently, how he can learn and what we can do to help. It can also help to diagnose learning disability (there are some learning disabilities associated with spina bifida and hydrocephalus) as well as improving study habits and school skills. We all know that the sooner you get a diagnosis the better.

A psycho-education assessment looks at learning and academic skills. Academic skills are reading, writing, math, spelling, listening and oral skills. All of the stuff that you use in school that gives you grades.


The psychological part includes intelligence, language skills, memory, how you learn (verbal and visual), concentration, planning, reflective response and eye-hand coordination.This is all stuff that helps you with your own way of learning.

So that is great to be able to assess all of this stuff. But how do they collect that information?

We have 2 appointments next month with the psychologist as part of the spina bifida clinic. We have it divided up into 2 days so that Nick doesn't get overwhelmed.
There will be one-on-one with the psychologist, a written questionnaire we have been left with for Kyle and me to complete as well as his teacher. I'm trying to go with an open mind to information-collect.



Sunday, January 4, 2015

Recharged New Year

To end up our Christmas vacation (which started after Christmas for me) was some time away from everyone and everything.

We had a pile of movies (including all the Harry Potter movies), wii, snow and sleds and lots of warm clothes. We had no plans and the only expectation is to rest and recharge ourselves. And of course have fun


we have our party supplies for new years (along with a ton of finger foods, a bottle of wine and a big prime rib)


We had our treasure hunt, and settled into cottage life. We pulled out our games and had fun


2015 came, we counted down (as close as we could using our phones as a time keeper).


Then it was off to bed (some of us sooner than others)



 New Years Day we all got dressed up to celebrate the start of the year!





At the cottage there has been snow. So we dug out a path for Nick in his walker and all went out, until we got too cold


It wasn't actually that cold, which was nice. Katheryn lasted longer than the rest of us and made herself a snow fort.


We dried off enough wood so that we could have a fire.


And we could even roast some marshmallows



Sammie loves the snow, and I loved the sound of snow crunching (and nothing else)


The snow was one of the best parts of being up at the cottage. Don't have to drive anywhere, don't care about traffic, you shovel what you want to have fun and leave the rest.



And when you get too cold (or your parents drag you inside)... There is hot chocolate and some fun dancing to do.


Our last day was cold and windy.


We couldn't get Nick is his walker down by the lake (they wanted to go down). So Nick went down on the sled.


Once you broke up the ice along the top you had packing snow to make snowballs with!



Nick (and I) went inside earlier for our daily dose of hot chocolate. But Katheryn and Kyle continued to play outside.
I don't think either of them get cold!


Our 5 days away was a great time for the 4 of us (+grandma Ridding for one night). was really great for recharging ourselves. After the bustle of Christmas running around making sure that you see everyone and everyone has fun the time, what we needed was the time to just stop and enjoy ourselves.