A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Friday, November 30, 2012

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.
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!

Thursday, November 29, 2012

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.

Saturday, November 24, 2012

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)

Tuesday, November 13, 2012

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!

Sunday, November 11, 2012

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!

Monday, November 5, 2012

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.

Friday, November 2, 2012

School Daze

It is November, Halloween is done and the costumes are put back away (until our pirate party for Nick's birthday). It is time to think about school.

The idea of sending Nickolas to school has been a bit stressful for me. With all of the excitement with Katheryn starting kindergarten I tried to stifle the little voice that worried about Nick's journey next year. And when we visited the school for the September BBQ I could see how well Katheryn has adjusted, but also how there will be challenges for Nick. Everything from a single fully accessible door into the school (and a back door that has a ramp, but challenges actually fully accessing the ramp), space to move a chair or walker or crutches around the classroom, and that the back indoor play room is down 3 steps. It has me worried about how it will work for Nickolas next year.

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. It started to really bog down this post - so I'm going to post all of the resources as a separate post.

When I'm stressing out about things I want to collect as much information as I can, and make it accessible when I have more questions!

Starting school feels like when I found out that Nickolas had spina bifida! The waiting and the wondering and the stress and the wait and see. I am really hoping, that like when I was pregnant, the waiting was the worse part; and once we actually get started into school I'll find out that all this worry and stress was for nothing (other than try to be super-prepared).

For the last week, since I've been trying to become more proactive getting ready for school I have felt like I am on the edge of tears! I just want it to be easier, and make the right decisions!
I spent last week calling around and sending out emails.
I talked to the secretary at our school which did not help to make me feel better. I was told

  1. We do not have to register earlier than January (even thought all of the sites say the Fall prior to school). In fact she said a lot can happen in a year and what is the point of taking his name?! -yes that made me feel very good about sending my kid to this school
  2.  Kids in kindergarten don't need an IEP and was told what is the point it's just kindergarten - my head nearly blew off at this
  3. What about a school nurse (or someone to help with cathing), that it doesn't need to be set up that much ahead of time.

I did get a chance to talk to the Principal later in the week and plan to have some meetings in January and have been reassured that 9 months is enough time to get things ready for Nickolas. They do have a couple of kids with special needs in the school, including a girl who uses a wheelchair full time. So I imagine they have experience.

We have been very, very adamant that we want Nickolas to go to this school with Katheryn. Our local children's centre, Grandview actually has a school attached to it. Campbell Children's School. And every time someone mentions that we are eligible for it we declined.
Nick had a reassessment by our developmental pediatrician in October. I wasn't able to be there, but Kyle was and we received a letter outlining the assessment. I think I just read the letter at a time when all I could think of was how are we going to make a smooth transition to school. Because it didn't say anything that I didn't know. But it got me thinking.
If Nickolas was able to attend this school he would be able to get physiotherapy, and occupational therapy 2-3 times a week. It finally hit me that maybe we are compromising the potential for Nick to receive more therapy because we want him to be with Katheryn.
I don't want Nick to go to a special school, I want him to be in the same school as Katheryn, make friends in the school he will grow up in. I don't want him to be different, to be segregated. But just because this isn't what I want doesn't mean that isn't what he might need for now.
Nick is already going to be facing challenges starting school in September. He will be one of the youngest kids in the class, the only kid in a wheelchair/walker/crutches?, he will have his own special bus (which he is excited about - he tells everyone I'm going to have my own bus when I go to school), we will have to readjust his therapies around his school hours. So now I'm wondering if we are pushing Nick to be in our regular school because of beliefs that we have about kids with a disability, instead of looking at what Nickolas' needs actually are.
So Kyle and I are taking a step  back. We are going to go through all of our options. Apply to the Campbell's school, apply to our local school, and if Nick gets accepted (they have a limited number of spots for the kids with the most need) then we will see what the best choice is.
I'm not sure if I'm happy about this. What I really wish is that Nick was a January baby and I had another year to think about it. But I know that Nickolas is excited to start school and whatever school he starts in on Sept 3, 2013 it will be the right one.