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!

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!

The short bus

This is one of the things that I found challenging last year. Any time I thought about school, there is was... front and centre.
My son will be riding the 'short bus'.
He will be identified before he even gets off the bus.
As he rides through the neighborhood.

Just this weekend I was watching a movie that brought it all up again.
One of the "funny" insulting lines that one character called another. "Hey short-bus"
Because, you know, it is really witty to make fun of children who are different.

And then almost the very next day one of the my co-workers brought up 'the short bus'.
Her daughter had asked why she had to ride a big bus with only 5 or 6 other kids, why couldn't she ride in the small buses? Wouldn't it be more energy efficient?
And my co-worker realized that she didn't know what the 'short bus' was.

And I have noticed a number of buses through the neighborhood.
It is nice to know that there are kids who are growing up not knowing this derogatory term.

So the anger I felt at hearing the term on a movie, made me feel better that it might hopefully be only my own generation who see this as negative.
And kids these day may just see it as environmentally friendly.

My own feelings about the 'short bus' I continue to work with.
It is here, it is needed, Nickolas loves riding the bus, the bus driver is fantastic. So I pretty  much just need to get over it.
And if people want to make judgements based on what kind of vehicle Nick arrives in, then I probably don't want to know them anyways.
Nick loves his 'short bus' and it meets all of our needs.

 

I will have to deal with my concern with busing next year when he is with Katheryn. But that is a whole year from now!

Getting ready for school

 We had our meet the school day!

We got a bunch of papers and a whole binder for us to all get ready for school

 

 

And not only was it a school binder, with all of the information. But it was actually made for each kid. Or at least the cover was.



 

And inside there was a bunch of information.
All neatly organized!

I will admit that I haven't actually read the material. That is what September 1st is for, right?!
There is a section for parents, reports, therapy programs, pictures, tip sheets and a whole portion for 'All about me'
These are just some of the pages from that section.

Sending your child to school, I worry that they are away from me, on their own and potentially (because you aren't there and never know) with someone who just sees them as a number, part of their day, their job.
But for the entire time we were there, and looking over the material we received, I just didn't get that.
And I'm not worried about sending Nick to school in September.

There is a little booklet that is all about Campbells, with pictures of everyone. This is my teacher... my physiotherapist... my occupational therapist... ect, these are the people that help in my class... With pictures of everyone and names.
(Perfect for a mommy that is horrible with names)

We also got to see what the classroom looks like

At first Nick was very shy and wouldn't say anything.

His teacher and some of the assistants were there and kept talking to him and he sat there with his mouth shut.

They talked about parts of the class, including the half circle desk, where they sit and talking and do crafts and eat lunch.

 

Well Nick walks right over in his walker, then cruises along until he is in the middle. Asks daddy for a chair and says "Where is the food?"

 

 

 

And his shy-ness was over.

He even got to draw a little bit before it was time to go.

 

 

Campbell's is actually in Grandview children's centre, so Nick is used to walking the halls. But he hadn't been in any of the classrooms before. I think they only have 4 classrooms. 

 

 I missed the first 20 minutes, but they had a presentation and went over some stuff (Kyle was there, I hope he paid attention) and each kid got a name tag with a coloured dot on it.
So as we went around the school, other kids had name tags on it with stickers, and the kids with the yellow stickers were going to be in Nick's class with him.

It also gave us the opportunity to meet other parents.

Kind of. The kids come by their shyness honestly, we are not the most out spoken and social people. We didn't approach other parents, just kind of stayed within our own bubble. But did meet some very nice and outgoing parents.

 

 

 The thing that I cared most about was the bus.

How will it work, what time is pick-up. Get Nick on the bus and excited that he is going to be taking a school bus!

 

 

They had a lift, which was loud and bothered Nick a bit. And so I carried/walked with Nick up the bus so he could sit and look around. He did really well going up the steps himself and lifting his feet. But once we got on the bus, he was kind of blah about it.

I guess it's a bus just sitting in the parking lot. Not very exciting.

 

 

 

I didn't realize, but probably should have realized a couple of different things about the bus. 

He can't take his walker on the lift, it is only for wheelchairs. And he isn't 40lbs yet and would have to be in a carseat on the bus if he isn't in his chair.

We have the pick-up all organized about where, and found out probably when, but was told that by September the time will probably change.

And we have to think a little about what will be going to school with him.

 

I had thought he would primarily be using his walker to go to school, play at school, walk around school. Pretty much use the walker the entire day. And on days that they are going for neighborhood walks or some kind of trip he would have his wheelchair sent to school with him.

But now it looks like he needs his wheelchair on the bus.

So he'll be going in his wheelchair and taking his walker every day to and from school.

At least for the start of school (they said they try to get school-equipment so that he doesn't have to travel with his walker).

 

I guess that is one of the things that will work itself out (or not).

But so far I feel that we are pretty ready for school.

 

(Except I forgot to ask about cathing the whole time we were there - who/how/when). I guess I'll have to call to make sure that is set up.

 

3 months or so before school starts.

I'm a little nervous. But feel very prepared.