Getting Around

We have a number of options for getting around

I just feel like we are in a getting around slump.

We have the wheelchair - we use this every morning to go to the bus and back, for long distances or trips, the zoo, the grocery store (if for some reason we don't use the cart). We use it for distances and times, so we usually just push it ourselves instead of getting Nickolas the opportunity to push himself.

And as I'm writing this, I know that this is the exact opposite of why we wanted to get Nickolas the wheelchair to begin with - Independence!

The walker - Nickolas is doing great with it.

We still don't have the distance I had been hoping for.
But we use the walker primarily outside of the house for appointments. And Nickolas wants to use the walker outside of the house. We walk to the doctors office, to therapy, to splash in puddles

 

But around the house, not so much. When Nickolas is in his walker in the house he can do a circle. Around the kitchen, around the dining room. Our family room is down a step. So far Nick prefers to crawl, cruise or convince (someone else to carry him). Or we'll walk together, with one of us holding his hands.
I hate being in a place - like upstairs where we don't have a walker, and Nick saying "I want to walk" and he has to wait for us to help him.

I'm frustrated that I can't help Nick more. Or that at times I'm helping him too much.
I don't know.

If I want to be truly honest, I feel like I'm failing in this part.

I have some vague plans to put some kind of ramp into the family room - but space is an issue, and a ramp into the backyard. But we don't have anything started yet.

 

When we went to cut down the Christmas tree we had to have a plan.
Just a little bit of extra planning.
How can we help to get Nickolas around and participate in this fun family tradition, without carrying him.
And without the wheelchair - we didn't think it would be effective at the Christmas tree farm.

 

The wagon will work for now.
And next year.
The year after we might need to think about some other options.

Chrismas Tree Hunters

We continued our family tradition today.

The Christmas Tree Hunt!

 

We had to start the season early this year, this is my only weekend off before Christmas!

We woke  up to some snow on the ground, Katheryn was very excited and wanted to make snowmen!

 

 

We had decided hat the best way for Nickolas to move around was in the wagon, that worked really well for this year; I'm not sure what we'll be able to do next year.

It was cold and windy, but we had lots of layers on.
And we got our tree!
The kids had reached their limit by the time we got it into the van.

But pretty soon we were defrosted and ready to get started.
We might have a little girl with some electricity in her blood

She was very excited to help with the lights!

It's beginning to look a lot like Christmas!! (for the next month)

3 years!

How did my little boy become 3 years old?
I'm not quite sure, but there he is.

A little boy who shakes that bum to the Handy Manny song

Who loves it loud!
And loves to drum and sing at the same time (at the top of his lungs of course)
His favorite song right now - Twinkle, Twinkle Little Star 
or if he is in a pirate mood - Row, Row, Row your Boat

He is a big boy who will still share his brand new toys with his sister
Or will very sternly tell her no (until he's ready)

Is excited to ride his own school bus next year
Even if mommy is a little unsure.

He is a little boy who can watch his favorite shows over and over and over and over again
And was super excited to have a personalized message from Jake and his crew!

Who can't say the word 'bath' without needing to go upstairs immediately

Pretty much ditto for 'Hot dogs'

A little boy who didn't say very much a year ago, but now talks in 10 word sentences!
And he has such a little attitude!
"Don't want mommy say NO to me!"

Who wants to give the penguins at the zoo a time out ( to come and swim near his window of course)

3 years has brought me a boy who can have wicked temper tantrums
And he does not like time outs (luckily  he doesn't need them that often)

But he is still a little boy that loves to hug ... really tight

Who crawls and talks in his sleep - but looks so innocent when he's sleeping

Who drinks A LOT of chocolate milk

I have a little boy that loves to explore and investigate before playing
He was excited that this figure has a wheelchair - "just like me!"

Somehow I have a boy with big boy feet
Just look how big they are!
(They always just seemed so tiny!)

Somehow my little boy has turned into a 3 year old that has attutude, strength, personality all with a spark of silliness and the desire to see people laugh.

If this is what 3 years brings me - Bring it on!

Happy Birthday Nickolas!
You have brought such wonderment, amazement, joy into my life.

In 3 years you have changed our lives forever. And I wouldn't change a moment of it!

A Pirate Birthday Party!



Nickolas has been obsessed with being a pirate.

 

And I have been encouraging this obsession. So we had a pirate Halloween, followed by a pirate birthday party! Complete with the need to dress up (I do love my dress up parties - remember Katheryn's birthday tea party?)

There is a new Disney show called Jake and the Neverland Pirates.

One of the parts of the show has the Neverland Pirate Band singing songs - including this one Never Say Never to a Neverland Pirate!

There is nothing that you can't do! Definitely a motto I want to take to heart 

 

So Pirate Party here we come!

We had a big pirate ship balloon - that Nick just wanted to stare at!

Some more pirate decorations

 

For the swashbucklers who didn't come in costume - we were all ready!

And for the added authenticity - a whole pile of temporary tattoos!
We tried to put some on Nick, he completely freaked out and said he didn't want to be a pirate! (30 minutes before a complete pirate-themed party)

 

 

Katheryn liked the tattoos (even if she doesn't look very happy)

 

 

And if only I had a pirate ship lying around somewhere for kids to play with?

Oh yeah, I do!

 

My only rule for the pirate ship - they cannot destroy it before the party!
(and yes both kids are in there)

Then it was time for our costumes!

Even Sammie got into it!

Baby "peter pan" is wearing the pirate hat

We even  had a couple of pirate grandma's!

Somehow we were too busy for a pirate family picture - but this is what I got

Better than a bouncy castle!

We had some quiet time to open some pirate presents

Nick got something he's been wanting for a long time!

Now he is a real pirate rock star!

(and I anticipate posting some concerts)

 

 



The base for a birthday party of course came with the birthday cake!
I had the idea for it for a couple of months (and it turned out great - took me forever to find the right characters to put on it - never did find the right boat)

But Nick didn't care, he thought the cake was great!
Was a little unsure about blowing out the candle...

Then we had a very tired little boy.

Until the sugar rush started, and then he was good for round 2!

School Help

Over the last month I have been trying to find resources online to tell me what steps to take to make sure that Nickolas will get everything he needs in the school year. Knowledge is power.

Because we are going to the Catholic School System I started with the school board website. This has had some challenges to begin with. They have a special education section with links. I thought great! This is info available online. Except most of these links don't work, and when I contact the webmaster (because that it was it says and there is no way to contact an actual person online) I am told this email does not exist.

The whole thing has me even more worried now! If their website links don't work for 'exception students' then what does that really say about what the board thinks about these students and the importance of assisting parents.

I did some more digging on the site and came up with a couple of more links a document about exceptional health conditions, as well as Parents Guide to Special Education - which can only be viewed online, not in pdf format. There is information about roles and responsibilities in regards to special education, that says what is expected by everyone involved.

Everything that we have considered in regards to school has been to get the most out of the school experience for Nickolas. And the beliefs about special education in regards to accessibility and diversity makes me think this is the right school of thought.

 We debated both the catholic and the public school board. The Catholic school board was very specific in regards to inclusion of children with exceptional needs. The Public school board said that they will attempt to integrate children (with all the flowering talk) but I just felt that the Catholic school board had the support that we wanted.

 
When I'm stressing out about things I want to collect as much information as I can.

There is a whole bunch of new words and terms that I need to learn about.

• Exceptional student, this is the government etc that is trying not to say disability. I think I like the terminology.
• Special Education
• I.P.R.C. - the Identification, Placement, and Review Committee - this is who determines that a child is exceptional and needs a special education program. It consists of at least 3 people at least is the principal.
• this includes facilities, resources, support people and equipment
• S.E.A.C. - the Special Education Advisory Committee
• I.E.P (individual education plan); meant for every identified student, including students with physical exceptionalities. I take this to mean it is appropriate for kindergarten (regardless of what certain secretaries may think).
• Specialized Health Support Services - nursing, OT, PT, ST, catheterization, toileting are all on the list.

The principal seems to be the go-to person right now for us.

It looks like this is all of the information that I can collect for now.

SBHAO resources (just scroll down to Education) has a number of resource links as well:

• IEP samples, including what resources were used to develop the samples

General Guides (PDF):
the IEP - a resource guide
IEP standards for development, program planning and implementation

I am concentrating that Nickolas will need help because of physical issues. At the moment Nickolas is still age appropriate for other developmental scales and even though I have worries about letters, writing and language I'm reassured this is still within limits for 3 years old.

There are a number of resources concerning learning disabilities and I am just not ready to go there. Spina bifida and Hydrocephalus are associated with learning disabilities. I am aware of this and will keep my mind open to the possibility that this might be something we need to further explore. But not yet.

There are other resources for support for people who are trying to figure out education issues.
Precious Minds is a support for families with children who have barriers to learning (learning, physical, developmental and behavioral disabilities)
Learning Disabilities Association of Ontario, help parents with advocacy.
Holland Bloorview Resource Centre, links to meet education needs

 

I think this is the end of my research for now. I think I have a lot of reading for the next couple of months.