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.

School Report

We had a parent-teacher interview this week.
I didn't really think that much about it. Go to school, see how Nickolas is doing. No big deal.

Except that I kinda feel like I was punched in the gut.
Nickolas is in Senior Kindergarten, getting ready for grade one next year.
He is learning his letters and counting, even some basic addition. Reading his book at home and recognizing his sight words. I thought he was doing good.

His teacher showed me a video. In it he was talking to another boy about what they learned about an apple. The different parts.
On the video he wasn't able to do it.
This was something that they had learned, and he wasn't able to talk about it.

We talked about his letter recognition. She said that he lost some of his letters and sight words over the summer. I will admit that we didn't work on them. Instead we went to camp, had surgery and recovered. Should we have worked on letters? I guess so

There are still letters that he doesn't recognize, specifically "G, H, b, g, h, p, q, u, y"
He doesn't draw. He still prefers to scribble instead of actually making shapes. I have this picture he drew a month ago. But it is one picture, the rest of his pictures are scribbles.

I came out the interview discouraged.
How far back is he?

What can I do to help him? Is this part of it? Is this part of spina bifida?
The difficulty learning? Is he showing a learning disability?The ones they talk about at conferences, related to spina bifida/hydrocephalus. They talk about IQ and standard deviations below average. Is he showing that?

But he isn't. He is smart. He loves to read, he has some difficulty but he will still try (with encouragement). He counts, and he sings. He writes his name, he will tell me sounds and numbers.
When we got home, I pulled out an apple for him. He did tell me about the apple and some of the parts.

I talked with his OT about the writing and letters. She said that he works so hard on making the moves for writing when he has so many thoughts he wants to get out. We talked about a laptop as an educational aid. So he can show off his knowledge about letters and numbers separate from the skill he is still working on to write.

Nick got his report card as well. Personal and Social development, he got 2 out of 10 marked as an expected level, the rest developing. Nothing under science and technology, half of the arts, for language, another 2 out of 10 items.
Kyle told me that developing is what he is supposed to be doing. That it is too early to start worrying and getting upset. And it gives us areas for improvement

But I still have this heaviness in my heart when I hear about the limited progress he is making in school activities. With the physical, the mobility and the bathroom issues does he really need to add intellect to this list of things Nick has to work extra hard.
Can something come easy to him? Easy like it is to everyone else?

School News

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!

Counting

Nickolas is being a show-off again!

Nickolas is counting to 15!

Like everything in Nick's life, he kept this little secret to himself, and then blasted his poor mommy out of the water!
We've started to use potty time for some learning, we did colours and then this week I thought we could move onto numbers. The potty is a great time to work, because it is quiet time, usually without big sister who likes to give him the answers.
When we started this week I was so happy that he counted to 3! Or counted 3 things that we had around the tub.

Then yesterday I had 10 toys all lined up for us to count.And he just kept going, all the way up to 15! (or five-teen).
I asked him if I could go and grab my camera, not really 100% sure that he would give a repeat performance for the camera. But off he went! I'm sure in his head he was saying (oh mom!)

There have been a number of things that I have been worried about developmentally with Nickolas. He didn't know his colours - or I should say, he refused to say his colours (saying that everything is blue) for the longest time.
But I was worried about his numbers, he didn't know them (or so I thought).
I guess this means we will tackle the alphabet next!
Sorry kid, no rest!

Fast!

I think I need to get a better pair of running shoes!

Speaking in Tongues

I have talked about how Nick's language has blossomed! OK, he's a boy, so I guess I should say boomed!
He talks all the time.
And it has meaning.
I just don't always know what it is.

One morning he's eating breakfast and just talking, talking. I have no idea what - it's like I can pick up a couple words here and there. I swear he was talking in French! (a language I took all through school and know how to say "je ne parle pas francias". Anyone who knows french I'm sure just realized I butchered their language.)

There are alot of words that I understand. I started making a list, but everyone day there are so many more to add to the list that I can't get them all. He probably has 100, maybe more. And sentences.

I know other moms said it would happen, and I know that at the time I knew that it would happen (most of the time I knew it would happen), and I find it magical that it is actually happening now.

This is of course after we finish our block of speech therapy for 6 months! where we worked on communication and not actual speech.
Right at the very end of our block Nick was just starting to get his words, but he was still shy about it. Still not talking that much outside of the home.

We are no strangers to speech therapy.
Katheryn is still in speech therapy. Has been since I referred her at 18 months because she had about 6 words and should have had more than 10. It took about 9 months for her to be picked up, but we have been able to apply everything we have learned back and forth between the 2 kids.

Katheryn we have goals for pronunciation of specific letters (especially K, F, G but other letters as well). For Nick I have to make up my own goals because we just finished our block and the things we learned there just don't seem to apply any more.
I'm hoping that next session we can have the same speech therapist for both kids so we can all be on the same page.
I'm trying to figure out where to start, or if I'm pushing too hard for something that will come naturally on it's own. But i just have to remember how we progressed with Katheryn. I know it will come.

I've got your number!

Actually you don't.

It's taken me a while to write about this. (I think I have written about it in my own journal, but not really here. I had to be ready).
It's all about the letters and numbers.

For those not in the spina bifida world there are actually 2 sets of numbers and letters to work with (actually maybe 4), which represent that lesion (where the spine was damaged) or level. One is motor ability and the other is sensory ability. Then there is actual level and functional level. Am I confusing you yet?

I talk a little about it on my 'learning blog' here.

OK back to the basics: The spine is made up of vertebrae (bones) that have letters and numbers. From the top down we have 8 cervical vertebrae (C1-C8), 12 thoracic vertebrae (T1-T12), 5 lumbar vertebrae (L1-L5) and 5 sacral (S1-S5).
When we got Nick's diagnosis the best 'level' we were told was lower lumbar/upper sacral. When he was born we were told his lesion was at S1. Bonus!

But he doesn't actually function at a 'S1' level. I've known that for a long time. But I was figuring it would be something like L5. (One level up, no big deal). But then Nick has been very complacent when we try to get him to do things that we (I) believe he has the ability to do.

Everyone time I ask about what someone estimates Nick's level to be, it actually takes alot for me to ask. Because I'm afraid of what they will tell me. Even though I know that I shouldn't. I know that numbers are numbers - and nobody has Nick's number, but himself.

Nick's sensory level is pretty good. He feels all the way up his calf, but not his thigh.

His functional level is a little tricky. And when I ask someone to give me a number and letter, they always tell me that it's their best guess. That it will take time to determine. This past spina bifida clinic I asked again what they think his functional level is. Or their 'best guess'.
She did some tests and tried to get him to do some stuff. Much to Nick's dismay.
I asked about how I could do some tests at home. It was suggested I look at some different resources - but they didn't have what I wanted.
What I wanted was a simple test to give me a letter and a number.
What I found is that it is not that easy.

Oh, did I mention that she told me L3!
L3!!!
I was in a funk for days. All I could think of was L, L, L, L, L (OK I already knew that letter) but 3! 3 is just so much higher than I thought. That is actually 4 levels higher than I thought.
Well, I'm not to take that!

So online I went.
I looked at a bunch of articles that talked about flexion and extension and abduction/adduction. Then I had to look up what all of those meant, and then I had to look up pictures.

Abduction

Adduction

 Knee flexion

 Knee extension

Hip flexion

It also helps me to decipher what PT says when they talk about quadriceps, hamstrings ect and what exactly that means!

So what did I do when I was trying to learn about all of this?

I wrote a chart. And this is what I learned:

The reason it is so hard to figure out a level is that different muscles and abilities are from multiple nerves. Hmm. Not so easy!

L1, L2, L3, L4 - thigh flexion

L2, L3, L4 - thigh adduction

L4, L5, S1 - thigh abduction

L5, S1, S2 - extension of leg at hip (gluteus maximus)

L2, L3, L4 - extension of leg at knee (quadriceps)

L4, L5, S1, S2 - flexion of leg at knee (hamstrings)

L4, L5, S1 - dorsiflexion of foot

L4, L5, S1 - extension of toes

L5, S1, S2 - plantar flexion of foot

L5, S1, S2 - flexion of toes

 So now that I know a little about 'physio talk'.
 So lets just say that I'm not taking L3 lying down.
And hopefully I will eventually learn that Nick is too young still to give a number too. And even if that number is L3 (which I don't think it is), it doesn't matter. It was just a bit of a shock when I expected L5 (maybe L4). And I'm going to stop taking about numbers and letters now.