Walking to school

Nick wanted to walk to the bus stop today with his backpack

He did it the whole way to Katheryn's bus stop.
He is getting stronger with his crutches.

I don't think he is as strong/stable as he was when he took his first steps. But that is something we are working on. A part of me thinks he might never be able to do this again. I had hoped after the surgery we would be back to that point quickly. But we aren't.
And if he doesn't get back to taking independent steps it will make me sad, but it isn't the end of the world. He is stronger with his crutches. Especially with the higher braces on (which I don't hate as much as I used to). And on the weekends we take the tops of his braces and he is still able to walk with his crutches, but he is a little floppier.

Oops, I just hijacked a post about walking to school...

Last week while we were waiting for Katheryn's bus Nick wanted to get out of his chair and practice standing. When the bus pulled up I could hear a lot of the kids in the bus cheering for Nick (a bunch of kids in his class are on Katheryn's bus). And Katheryn got off and yelled "He does that at home!"
Nick was so proud of himself.
And if that is what he wants to do, then go for it boy!

Today he wanted to walk and run to the bus. So he did.

Yesterday coming home he wanted to be in his chair and his crutches.
I thought it was weird, but whatever. But then I realized that Katheryn and Nick were playing sledge hockey, and Nick was pushing himself in his 'sledge' while Katheryn was the coach

 They went the whole way from Jenn's to our house like that.
Now it just needs to translate on the ice!

School Pictures and School Update

Our school pictures are in!

School report cards came home too.
Not really any surprises. This is just the progress report, so there isn't any ABC's

Katheryn is doing well is everything, and excellent in Math (her report card said she is a risk taker in math!... which is a really good thing). But she needs to work on her organization. Math and reading are Katheryn's favorite subjects. She reads everything in front of her, and she loves to ask more and more complex math problems.

Nickolas's report card didn't have any huge surprises. He is good at working with others, is good with science and gym (his favorite subjects). Independent work, taking initiative are areas he needs to work on (which he needs to work on at home as well). Math and language is still his biggest challenge. Math isn't any surprise, it is typical with spina bifida (but I'm still trying to figure out how to help).
I had hoped language (reading) would be better. Nick is doing fantastic at reading and will read independently with minimal help! Which is a huge improvement from last year. But not enough for grade 2 (yet).

School Letter to student/parents

For the last 3 years I've been making pamphlets to send to school with Nick. Usually it has been to his teachers and last year I made one for the students as well. To help answer some questions and normalize the equipment Nick uses.

When I was looking over Nick's pamphlet for this year I realized that it has a bunch of information that is helpful for the teachers, but not really stuff his classmates need to know. So instead we wrote a letter, with some pictures.

Hi classmate,

My name is Nickolas, you can also call me “Nick” and I am in your class with Ms L.
I am 6 years old and in Grade 2. I love playing Avengers and Star Wars and may recruit you into a game! My favorite characters are Captain America and Darth Vader. I love playing at recess and my favorite subject is gym. I may be quiet at first, but once we get to know each other I like playing different games. I like wrestling and playing sledge hockey this summer!

I was also born with spina bifida and hydrocephalus. But that hasn’t stopped me!

¶¶¶

When I was born I had a hole in my back. This is called spina bifida. My spine was open and the nerves in my back were damaged. These nerves can’t tell my body how to move and what I feel.

I had surgery to close the hole when I was 1 day old. Even though my back is fixed (and I have a large scar) the nerves to my legs and feet are still damaged. I can’t feel the back of my legs or the bottom of my feet very well and have weak muscles in my legs.

I also have hydrocephalus which means I have extra water (fluid) in my brain. I have a tube, called a shunt, which takes the water from my brain and puts it in my belly. You can’t see this tube, but I have a cool scar and a bump in my hair, but you can hardly see it. I also have a latex allergy, which means that I can’t be around any latex balloons or I can get sick.

¶¶¶

You may have noticed that I use extra equipment to help me move around the school. I wear braces on my legs to support my ankles. They have Avengers on them! I also use blue Crutches, I need extra space so that I can put the crutches on the ground. I can walk and even run with my crutches. Please don’t try to squeeze around me, because I may lose my balance and fall.

I also use a red Walker that I pull behind me. Please don’t push or pull at the walker because I might fall. I can run and play at recess and gym class with my walker. I also use an orange Wheelchair that I use on class trips and on my bus. I can push myself, but if you want to help push me, please ask me first.

I have an older sister named Katheryn who is in Grade 3 at XX. I also have 2 big black dogs named Rory and Chuva. They are very friendly. My parents are named Amanda and Kyle and my mom writes a blog about spina bifida and our family.

I am excited to meet new classmates and spend the year with you!

From Nickolas and Family



Nick has the same teacher as last year, but only 2 students are the same as last year. He is in another split class, this time being the older grade.
I think it will be a good year for him!

First Day of School

The summer went by fast and furious!

And we did lots on our summer bucket list

And now it is time for back to school!

 

Nick is so nervous about going back to school. He is starting grade 2 and has the same teacher as last year. He was very excited to wear his Captain America shirt!

 

Katheryn, on the other hand, is very excited to go back to school. To learn, play with her friends, meet her new teacher. Katheryn got a new dress for school, but she's worn it twice already and told everyone it was her back-to-school dress

Grade 2 and 3!
How did they get so big!

The kids were very good with pictures before school starts. And I got 3 pictures in 3 shots

School's Out!

Another school year is done!

They have grown so much from the first day of school!

Katheryn is going into grade 3 and Nick is going into grade 2 next year!
The kids are going to miss their friends (and Nick came home with 2 phone numbers) but this is their reaction for the coming summer

Nick is excited there is no more homework! (Little does he know I have some math-plans for the summer) and Katheryn is sad she doesn't have school anymore.

Their report cards are good this year.
Katheryn got 10 As and 6 Bs. Not surprising that she needs to work on her writing (but has made improvement) and her spelling. And she needs to be more organized. And her best subject, with solid As is math (she is playing with multiplication and division right now... yes I said playing), as well as art and gym.
Nick got 2 As and 9 Bs. His best subjects are social studies and drama. Reading still remains a challenge, but he has improved so much (I had hoped his grade would be higher), and math is higher than I had thought it would be. Nick needs to be more independent, and I can see in his card that he has become more comfortable in school.

Nick tells me that he will be having the same teacher again next year. This would be good, except it would also mean that in 4 years of school he has had 2 teachers.

For now we are looking to enjoy the summer!

Get Well Soon!

Nick got some Get Well Cards from his classmates!

He had fun reading all of them

And telling me all about who it was who wrote them

 It was really nice knowing that all of his class (and school) were hoping he was getting better soon!

I am hoping that the he will go to school for a couple of hours on Monday (we have physiotherapy in the afternoon) and then after we see how he is doing decide for the last 2 days of school.

Visitors!

Nick got some special visitors today!

Nick's teacher and 2 of his EAs came to see how he was doing.

They brought him a card and some presents

Of course he shocked them by looking so wonderful!
He was so excited that they came to him house to see him!

I am truly amazed at how he is doing. This is the boy that 2 days ago he walked for the first time and had so much pain, and 4 days ago he was only allowed to sit up! Now he is home he is walking with his walker in the house and hasn't had very much pain.



Now instead of worrying about how he is starting to move, I am worrying about how to stop him from moving too much! With all of his restrictions for the next 2 months (no wrestling, no recess and no gym being the big ones).
At least school is only for another 3 days next week. And we have a plan for him to only go a couple of half days and to stay in his wheelchair for the day.

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.

Winter and Recess

Winter started in full force when the kids returned from winter break. There was snow and ice and it was cold. Often Nick will come home and tell me about his recess and who he played with and what they did.

The first week of January he didn't have any stories. He just said he stayed inside.

  

Trying to ask Nick about why he didn't go out for recess he said he didn't know, and then it was that there was snow, or the gate wasn't plowed.

I spent some time back and forth with his teacher about why he wasn't going outside for recess. I was upset that he might be excluded from normal school activities like recess.

 There were a number of different reasons. First is the time of getting him ready to go outside takes longer than the other kids and it cuts into school time. Second is that they are worried about him falling on the ice. Third is that he gets cold easily

After discussing I understand. I don't want him missing classroom time to get ready, on top of his cath time. So he will be going outside with has classmates at lunchtime recess and for the short recesses he will stay inside and get to pick a friend to play with him.

I did say that if they are worried about the ice and his walker, then he can go outside with his wheelchair. As well instead of getting his snow pants on, he could cover himself with a blanket and sit in his wheelchair.

We will see what we end up with. But I want to hear more stories about his friends.

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.

Meet the Teacher

Nick has really been enjoying going to school.

He wants to go every morning and is upset on the weekend when he finds out he doesn't get to go and see his friends.

I hear from Katheryn and some of the other kids how Nick is always surrounded by girls in the playground (which evens out, because Katheryn is always with the boys).

It is actually working out really well (socially) that Nick is in a split class. Because all of the grade 2s are friends with Katheryn. 

We had Meet the Teacher night tonight and one of the other parents told me how well Nick is doing in class. She told me how much her son talks about Nick and how excited her son was to have a new friend. It is funny, because he son is the little boy that Katheryn has been talking about since JK.

It was really nice to hear how well Nick has been doing in his new school.

For meet the teacher we got to visit the classrooms

And see some of their artwork

Katheryn is in a split class as well (2/3)

Katheryn really wanted me to take a picture of the inside of her desk

And we got to pick out which of the self portraits was Katheryn (I picked right)

Then we all went to to gym for assembly. It was really nice to see how much Nick is adjusting to his new school. 

I feel so much better about Nick being in school

Grade One and Two... First Day of School

The day arrived. The first day of school.

After getting all my thoughts and stresses out on 'paper' yesterday, and a good night sleep we were all ready for today!

Both the kids got up and were ready to go in the morning. The bags were packed, lunches were done, clothes picked out, new shoes all ready.

Katheryn was very specific about what she wanted for her hair style. And wanted me to take a picture so that she could show it off.

Katheryn was very excited to start school and see all of her friends. She couldn't wait to get on the bus and start grade 2!
She told me that I could take 3 pictures of her, but she only wanted to do one pose.

We weren't sure how the bus schedule will work with the kids. So Kyle and Katheryn went together to Katheryn's bus stop. He got  back to the house in time for Nick's bus, so there is enough time to get to both stops.

Nickolas is excited as well to start school. Not nervous a bit (or if he is, he isn't telling me). When Nick got up in the morning, he was happy that he was going to see his friends today. When I reminded him that he was going to his new school, he told "I know that, I am happy to  meet my new friends."

The bus driver called me yesterday to confirm pick-up time, and was there in time at our house. So there wasn't any delay in Nick going to school. Nick got in the bus and then was gone.

 I went into the school right after first recess to watch Nick's bathroom routine and offer any suggestions. Nick looked so happy there and everyone said he was doing well. I never got to see Katheryn (I didn't want to interrupt anyone too much).

When the kids came home. They said that they had a great time at school. Nick said he made lots of friends, and seems to be in class with all of Katheryn's friends. Katheryn is also in a split class of grade 2/3, which I am very happy about. I think she will do great in a split class.

Both of them are very happy to be back in school!

Life is a Beach

And not in a good way. In fact, you can maybe change out the ‘ea’ for a couple of other letters.

 Life is usually good. Playing on the beach, splashing in the water. But this past week it feels like I’ve been dragged into the ocean and I just have wave after wave trying to pull me down. One of 2 things, ok I can handle and still stay on my feet, but I just feel that it is one thing after another this week and I’m stressing.

This week we found out we got funding from Easter Seals for Nick’s porch lift. That is fantastic! $3000 we have towards that. But the difficulty is that now we have to come up with the other $2000 for the porchlift (OK we can do that) and the estimated $5 000-10 000 for the construction. The whole reason it has been such a long journey is the cost of the construction. I think paying $10 000 to put a door into the garage and a deck is insane. We have a second quote which is less, but have had problems getting ahold of the guy, which isn’t good.

OK that is one thing that has been weighing on my mind. How do we get the money to pay for this. We talked about March of Dimes (the home grant that is a one-time use, up to $15 000) and other funding options, but I make too much money (as a RN working full time, no overtime) and we are over a lot of the limits. It doesn’t help that they base funding on what we made last year when Kyle worked all year, but currently he has been laid off since February.

We also had Nick’s PT/OT assessment. It went well and I think the new system of PT/OT will work well. Hopefully in the winter we will look at doing some intensive therapy to get Nick using the crutches for school. But we talked about a home program and what we should be doing at home.

Nick has been using his standing frame this summer and has been doing well in it. They asked about tummy time. This is the first I’ve heard of tummy time to stretch out his hips. So we should be doing that daily. Nick also just got his new computer, so we need to do more work with him on that. We talked about programs Nick can do (karate, yoga, swimming, sledge hockey, basketball) in the community.

All of this is good, but then you think about all of the time. 1 hour standing, 1 hour lying, 1 hour on the potty, another 1 hour for cathing (4x a day for about 15 mintues). That is 4 hours every day! There is also computer time, there will be homework time, learning to read time, extracurricular time. Eating time, socializing time, playing time, school time, fun time and sleeping. So this is another wave that has been on my mind.

We had Nick’s school visit this week. Check out the new school, get his new EAs and teachers ready for him, get him used to the bigger school, bigger class size and all of the new people. Increase his independence because he won’t be supported as much. Hope and worry that socially he does well as a kid that is physically different from everyone else, as well as being shy. The first day of school, this first day of school has been a source of stress for a long, long time.

The visit went well, everyone is very supportive and we tried organizing as much as we could. Then we found out that Nick is in a split-class. And he is only 1 of maybe 5 kids in grade 1 and everyone else is grade 2. This was one of the things I worried about and didn’t want, because he is already a November baby he could be with kids that are almost 2 years older than him. We didn’t make a big deal about it, and will see how he does. But it is another thing I’ve been thinking and worrying about.

Last week (Monday or Tuesday) I contacted the bus company because we hadn’t heard about pick up or drop off yet… you know a week before school starts. Wednesday the bus driver called, but he had the wrong address for pick up. Not actually wrong, he had our home address and it is supposed to be our daycare address, which is one street over. He couldn’t change anything and said that school had to change it. OK, no big deal, went into the school on Thursday and they changed it, they said it may take 3 days to change. I had an automated number to call so I would know if it changed before Tuesday. Again, no big deal the wrong location is our house, we will just stay home for the pick up. Friday afternoon I get a call from the school. Because we changed the location the bus is now cancelled and won’t be picking him up at all. At the time I got called I was trying to sleep for my night shift, just said ok, I am off anyways and I’ll just drive him in for his first day of school. I asked about drop-off, but she didn’t know.

After I got off the phone with the school I started thinking (yes another wave of stress to knock me down). How could they just cancel the bus, like Nick doesn’t need to actually go to school the first day? How am I going to drive him? The parking lot will be packed, there is one accessible spot, the lot will be filled with school buses. I would have to park down the block. At least I am off work and can run around with Nick. Of course it got me more thinking. Why did they just cancel the bus! They put in the wrong address, they waited until the last minute to notify us. All we want is the bus to pick him up one street over! The bus actually needs to drive on that street to come to our house. We didn’t want it cancelled! He still needs to go to school, he is still entitled to go to school on a bus. Of course I also have stress about the ‘short bus’ mentality and stigma related to that, which I have been working very hard on.

With all of this I needed something to do (you know besides work 3 night shifts on a busy weekend, a hot and humid labour day, which is aptly named). So I updated my pamphlets for school and made a beautiful one (if I do say so myself) to go home with students the first day of school. The morning after my first shift, 12 hours without a break, I went to Walmart and picked up everything I needed for printing, including 2 full ink cartridges. I printed a couple copies and brought them into work Saturday night to show everyone. Sunday morning I started printing everything. After about 7 pamphlets (which is really about 15 pages) the ink ran out (I had printed about 50 pages with the new ink in total).

The brand new ink, that I just bought, that I just bought the last one in the store and no other local stores had it. I could (at 1030 am after another busy 12 hour shift) go to another store about 20 minutes away, pay another $40 and hope there was ink. Or I could get up early to go to the same store before they close at 6pm. Everything was closed on Monday. Kyle is up at the cottage with the kids (I have been home alone all weekend, not even any dogs) so I didn’t think of asking him to go. And Walmart is dangerous for us at the cottage…

I had 7 pamphlets that were usable, and 2 for teachers. There are about 30 kids in the class. The whole point of working on it all day Friday was to have it done for the first day of school.

That was it. I was done. I had a bit of a breakdown, posted on facebook and then went to bed. Kyle immediately responded that he would go and get the ink, so I actually slept instead of continuing to stress while trying to sleep and then stress that I wasn’t sleeping…

My night shifts are done for now, they were busy (they always are). I still have all of these things on my mind. I like things to be perfect and organized and have a plan. I like to know what is happening, and I want everything to go well. I am thankful that I have had a bunch of support on facebook, and reminding me that it works out in the end and that some amount of chaos is normal.

It just seemed that this week a whole bunch of little waves just knocked me down.

That’s ok, I’m a good swimmer!

Getting Ready for School

So the big day is coming when Nick is starting his first day of school and joining his sister

We have done first day of school twice before (JK & SK), but it was sending Nick to a smaller school, with a lot of support. This is sending Nick to a larger school, with less support and with lots of friends and kids who already know him

We had our pre-school meeting this week to make sure that we have everything in place for Tuesday. We had the school Physiotherapist, Occupational Therapist, Nurse, Special Education Teacher, Education Assistants, and Teachers. We went through how he transfers, and moves into his equipment, what equipment he actually has at school (standing frame, walker, school chair,  computer, canes, toilet supplies).

We showed Nick around his classroom and made sure he could get out the fire door (there is a step).

The classroom was set up so we knew where Nick was sitting and could see how he gets around the classroom.

We adjusted his school seat so that he is more supported. One of the things they had on every desk was erasers (which is on the latex list), but we checked and they are all latex free

 Nick was very nervous when we started. There were a lot of people that he didn't know, and he was the center of attention and we were all wanting him to do stuff. They wanted to see how he walks with his walker, so he walked around the room, sooo slowly and carefully. I had to laugh because I said he usually is much faster!
It took a while, but he did become more comfortable and he was soon racing around his classroom and telling everyone all about Ninja Turtles and different Avengers.

They  have a nurse coming in for the first little bit to teach the EA's about Nick's bathroom stuff. I am going to be going into the school on Tuesday to try to give them some pointers as well, all of those little stuff that works for Nick but isn't in any checklist.

Talking with the teacher we also talked about me sending in a pamphlet with some information about Nickolas to go to his fellow students (and parents). The teacher pamphlet is too detailed, and I wanted something with information about the equipment and also that the equipment is not a toy.

I wondered about putting my blog on it. I know from other families that it is findable, it isn't secret. So I thought it wouldn't hurt to have it on as a potential resource.

I just have to print off 30 copies of this for the first day of school. I also have a change of clothes, some gauze and tape (if the MACE leaks), a teachers guide to hydrocephalus, and a couple of the teacher handouts for the first day.

I'm hoping we are ready as ready as we can be for school on Tuesday!