Thursday, April 26, 2012

First of many meetings, I'm sure...

We had a meeting this morning at the school that Caelan will be attending in the fall.  There were a dozen of us in attendance, which didn't seem like too many after Damian had me thinking there'd be more than twenty!! 

It was heartwarming to see so many people gathered together wanting to learn more about Caelan and enquiring as to how they could help him succeed.  There was a lot of talk about what he would need and of course at the top of the list, as usual: nursing.

Nursing, believe it or not, for the first time ever, is pretty much a non-issue.  Caelan has the right to attend school.  Caelan has a tracheotomy.  Caelan feeds through a g-tube.  Caelan needs a nurse with him at school to monitor his feeds and care for his tracheotomy and CCAC will provide it.  Period.  In addition he'll have transportation to and from school with a nurse as well.  He won't be on the school bus with the girls but will be transported by a private company in a van hired by the school.  It looks like the nurse will have to be at our house for 8 o'clock in the morning, will go to school with Caelan, spend the day with him, and then come home with him after school.  The nursing position will go out to the two agencies that have previously covered our night nursing so there's even a possibility that we'll get someone who already knows him.

Caelan will also get an Educational Aid (EA) - or maybe it's Educational Assistant?  Regardless it's another person who will be in the classroom to help Caelan.  They'll be responsible for all of Caelan's personal needs, supporting his therapy and everything else.  CCAC will coordinate to have OT and PT in the school once every 3 weeks or so and they'll create a program for Caelan and the EA to follow.  I think I mentioned before that EA's aren't assigned until later in the summer and we have no guarantee that we'll get someone who is fluent or even has any experience with sign language.

Our existing Blind Low Vision Therapist and a representative from the Board who fills the same role were both in attendance and seemed pretty familiar with each other.  Obviously not the first case they've handed over to each other so I have every confidence in that being a smooth transition.  It's my understanding they'll do an assessment together before summer.

The Teacher of the Deaf from the Board was also there.  She's ordered a sound system for the kindergarten classroom that will amplify the teacher's voice over the thirty kids already enrolled in his class!!!  It will have to be monitored to ensure that it's having the desired effect and Caelan is able to hear instructions.  She would like to meet with our ASL instructor to compile a list of signs that Caelan knows.  She'd like this done as soon as possible so that it can be shared with the teachers before summer break, allowing them the opportunity to focus on learning those signs over the summer. 

We mentioned that Caelan is also vocalizing some words.  I was wondering at what point we could begin some speech therapy to help him learn how to verbalize more clearly.  It appears that this will have to wait a bit longer but in the mean time we've been instructed to start list of words he says.  Once his vocabulary is big enough we'll be able to start speech therapy.  There's a bit of a gap because speech therapy is something that's covered by a governement funded program (Words in Bloom or First Words) until a child is 5.  The Board picks up this therapy once a child is 5 years old.  OCTC, where Caelan currently gets this therapy would usually stop once he began school.  The government funded program is really not designed for someone with Caelan's needs but we'll have to request an exception to have him continue to be followed by OCTC until the Board is able to start services - or argue for the Board to make an exception if we can explain that OCTC and the other programs are unable or unwilling to provide services.

All in all, I would still consider it a fairly positive meeting.


  1. I am glad that the meeting went well, I was so worried about it and am glad that it is over. I do not know how you guys do it, to be in a room with so many people and keeping everything straight and making sure all the bases covered. I am so proud of you two and feel really blessed that you are the parents of my grandchildren! Love you both more than I could ever express in this little box or with words. xx Gramma

  2. This sounds pretty good!

  3. So happy to read all the good news :-D
    (slightly jealous of his soon to be school nurse though!;-))