School Work

I have had this 'school' post in my draft folder for a while.

A little while ago Nick didn't want to go to school anymore. He said that it was too hard.
We talked about what was hard. And he was saying that everything was hard. This was a couple of months after his recess was limited to indoors for the short recess. But once the nice weather has returned he comes home with stories about who he played with all day. And while he isn't excited to go to school in the morning, he isn't upset about going anymore.

School is almost done for the year and with his surgery booked in June I think there is a good chance he will miss the last 2 weeks of grade one.

At Easter, Nick got a Star Wars Grade 1 Reading workbook. He was so excited and very interested in it. I wanted to get him the math version, but we couldn't find the grade 1 (but we got a grade 2 one for next year). If there is something he is interested in (and he loves Star Wars) then I want to work on that with him.

Nick has improved his reading over the last couple of months. He is more comfortable and confident in his ability to read. Instead of getting upset and saying that he 'can't' he is trying. He is sounding out words he doesn't know. He still gets frustrated and says he doesn't know. But he does know, and he does read the word.

He brings home a book every night to read at home, some nights the house is too hectic and we aren't able to do it, but most nights we get it read.

He is reading a level 10 (and ready to move up to 11 soon) and has worked so hard to get there! Now that he is progressing in his reading, he is excited to read his book!

Writing has to be the area that Nick has made the most progress. At the end of kindergarten writing was still very difficult for him and took a lot of time and energy. Nick has made incredible progress and his writing is better than Katheryn's!

The subject that Nickolas struggles with most, is math. This doesn't come as a surprise to us as math difficulties is very common in kids with spina bifida. He gives up and says that he can't do it. Nick is learning about coins this month, so I collected all of our coins and we talked about them and he could touch them and feel them and try to learn their names.
We also sing the Bubble Gum  song we learned in camp, to help him to learn names of the coins (only we need to update it with the Toonie and Loonie)

We also got a math game that we can play at night. He tried it in the store and liked it. It is adding numbers from 1-9 with a dice. The object of the game was to roll the dice and count to put your peg at the right number and it is a 2-4 person game. Whoever gets 3 in a row wins. it is a fun way to help to memorize and learn addition. (And on the back is the same thing with multiplication 12x12, with larger dice)

We started on his workbook at the beginning to review the year. We have moved onto subtraction in his workbook and he is having a really hard time. He is having a hard time understanding the concept of taking away without counting anything. So I was thinking, what is small that he can count that won't fall off of his table. Lego is the easy answer.

I think that Nick has gotten better as we've been working on everything.
We have an hour of one-on-one time most nights as we do his bathroom routine. Instead of watching movies, we've been trying to off-set it with working on school work, especially if we can make it fun work. Over the last month or so I have seen improvements and gain more confidence.

How is school going?

School is going well. Nickolas is very social and talks about all of the kids that he played with a recess. (All girls). And Katheryn talks about all of the kids that she plays with  (all boys). But they have a lot of the same friends.

Nick doesn't talk as much about what he has actually learned at school.
But we work on reading at home. Reading his borrow-a-book every night (during bathroom routine). It takes a lot of coaching and Nick says that he can't do it, or doesn't know the words.
He is slowly improving. He started off the year reading at a level 1 and is now at a level 4.
Nick's writing is also improving. He is slow, but he is getting there.
Math (of course) is another area that he is improving on. We are working on simple addition and counting.

I am not sure where Nick fits in with the other kids in the class. But I can see how he is improving. We got his report card earlier in the month and there wasn't really any surprises.

Katheryn is doing great at school too. Her reading is phenomenal. She can read almost anything we put in front of her. She didn't get straight A's this report card, but came very close.
Her writing is one thing she needs to pay attention too. She is in such a hurry to get her ideas across that she scribbles all up and down the page. So we work on that with her.

But both of the kids are enjoying school. They come home and tell us what they played. Usually "Boys against Girls" which seems to be some kind of hiding game. And if they went to the gym and library or had any visitors.

One of the things they have learned is different emotions and colours. If they are mad they are in the red zone and if they are happy they are in the green zone. It is good that it helps them to identify where they are.
I have been trying to use the same concept at home, when they get upset or angry.

Reading and Writing

Nick continues to work on his typing.
He has to write out at least one sentence and some sight words and then can also write out what he wants. We set up the computer when he is doing his bathroom routine.

March 13:

Four

Did

Do

Soon

With

You

Ride

Nickolas

I went on the rides.

Katheryn.

Ridding

At school he uses a program called WordQ. It cues what he is typing and he can use the mouse to hover over the word and it will read it out. If the correct word is there he can either click on it or pick the number with it.

March 14:

I want to grow up to be a ninja turtle.

Nickolas Ridding 

Ran

You

Will

This 

Saw 

We did the words a couple of different ways. The sight words he would pick which ones and copy down. That was working on his typing and learning where the keys were.

March 16:

I went to the museum with Jennifer, Devon, Lucas and Katheryn.

I liked the mummies.

But we also worked on sentences; what did Nick want to write about? What did he do today?

March 19:

I went to the movie theatre with Daddy, Austin, and Uncle Brad.

We saw Sponge Bob Squarepants.

Nick

He also liked writing his name, and Katheryn's name. Katheryn is one of his first words that he knew how to spell. One day I was bringing him downstairs and he just started naming off the letters of her name. I had to get him to repeat it before I realized what he was spelling.

March 20:

Soon 

He 

Into

Brown 

Out

I went to McDonalds 

As he got better at the typing I stopped helping him as much with the letters. Instead of asking him what he wanted to spell out and telling him the letters for him to find, we started sounding out his words.

March 22:

I went to grandma ridding apartment

I had an Easter egg hunt

Maddi and Austin came for dinner

I have noticed a huge improvement in his spelling with this. All day we work on spelling like this. And it works, of course, the other way around too. With his reading. Sounding out letters and words.

Our newest word to sound out... and Nick did it successfully... is Booyakasha

Writing and Education

We've had the finale of our appointments from last month. We had psycho-education testing 

Psycho-education testing and writing aids.

The writing aids appointment is with an occupational therapist. We brought some writing samples and times with us. She did some testing to see how Nick was typing and his typing speed to be able to compare it.

In the end we got to take home a computer that is similar to his computer at school. We want to practice daily and use sight words and practice typing.

Nick has an hour of time in the evening that is perfect to set up the computer and let Nick type.

This is an example of what Nick has typed

Nick spends some time looking for the letters, but he is liking doing typing and is motivated.

The key to everything involved with Nickolas is motivation.
Nick has to want to type and write. And even if it took 45 minutes to get that sentence and words out, he still did it. And was so proud of himself!

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.

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!

Using our hands

Katheryn is exploding! She is writing, she is reading
She loves school - and she makes lists of everything that she likes (Mommy was on that list - along with flowers).

We had our parent-teacher interview and some of the things that Katheryn has to work on; writing with the correct grip, and cutting.
Perfect!
That is our homework with Nickolas from OT as well.

When we had our reassessment of OT at the beginning of the month he was still within normal range, but hadn't made any progress since he was assessed in the spring. So we started a block.

Nickolas has been working at OT - and not really realizing that he is working.

He gets to do mazes!
With his 'birdy fingers'

And cut things outs
He's made improvement staying on the lines

And at the end of the day he has his very own craft he can take home to Katheryn!
(we've  made a robot, garbage truck, penguin and now the pig this month)

So we have a bunch of fun crafts and stuff to do at home with both kids together.

At the beginning of the month I discussed applying for Cambell's school. We started our application for it as well. It is a written and video application. I'm happy with this decision. If we get in I'll be glad, if we don't I'll be fine with that decision too.
But we have our options all lined up!

Picture Perfect

Recently another mother Jill seemed to read my mind. If you haven't already seen everyone sharing her post - please take a minute and read it here.

I wake up every morning knowing how lucky I am and how blessed I am to be where I am today. I know that sounds super mushy. And life isn't perfect, anything but some days. Its not supposed to be - how boring would that be?!

The purpose of my blog is to share the great things that are happening in our lives – and the lousy things too. It is to share my thoughts and it is also to become something greater, part of a larger community. When we first got the diagnosis that something was going to be different online sources helped me to realize what life would be like with spina bifida. Yes there are tough times, and happy times but mostly there are just living times.

It's like when you are having a conversation with an acquaintance about something, and then it comes out that you have a child that was born with spina bifida. This happened to me alot this past week when I was doing a breastfeeding workshop and sharing some of my experiences.

I very often have someone say "I'm sorry" or "I don't know if I could do that". No worries, don't be sorry, and you don't have to know you can do something. It just happens, you just do it.

I love writing, I write the blog and I have journals that I started the day I found out I was pregnant with Katheryn. I feel so creative when I'm writing, like I'm actually doing something. And I’ve always wanted to write a book. I enjoy reading other books and I knew I had the material to write something myself. So this month I decided to start.

Reliving and writing my thoughts of the diagnosis, the birth, those first few weeks. It reminds me how very far I have come and how I really wish I knew how happy our life is.

You know how sometimes the best pictures, your favorite pictures aren't the ones where everyone has their best 'cheese fries' face on. It is the grumpy faces, the funny faces, the unexpected true laughing pictures - those are the life pictures.

Well, that's life. Not those perfect moments when everything lines up just how you always wanted it. The best moments are those ones that you don't plan, you don't expect and just sneak up on you. And turn out to picture perfect.