Wednesday, December 30, 2009

IBI Not-So-Happy Ending

Well, it's official. We figured as much, but right before Christmas we found out that Esme does not qualify to have her IBI therapy covered by the government. The reason? She's doing too well. The reason? (Among other things) Her IBI therapy.

It is so ridiculous and disgusting. The fact that we have paid for therapy for her, that we have spent every extra dollar we have (and some we don't), have asked friends and family and strangers to help us provide for our daughter only means that now she is considered to be "moderate-low" in her abilities, and thus is ineligible to receive IBI.

We asked if it meant anything at all that a mere 8 months ago she was diagnosed as non-verbal, severe autism. It doesn't. Because we don't "know" that it was the IBI that helped her get better. Even though research shows that IBI is the most effective therapy, even though the government only funds IBI therapy, we can't be sure it was the IBI that has helped her progress. I think I should put a call into the local hospital... we are paying for all this chemo and radiation for cancer patients, but how can we be sure that its the chemo getting rid of the tumour? Sometimes they just get better by themselves, after all. Think of the money we could save! Ridiculous.

So, according to the IBI center, Esme is best served with community supports. You know, the 30 minutes a week of group speech therapy she receives. Oh, did I say every week? I meant every other week.

The worst part of it all is that the lady who gave us the news actually said that its kids like Esme, who have the skills she has, who do the best with IBI. Who go on to attend school without a ton of (or any) support. Who go on to have jobs and live independent lives. Who really bloom with IBI therapy. But in Ontario, that comes with a big IF. They do the best IF their parents have access to an extra 50000 plus a year to fund a full-time therapy program.

We do not.

And so we are at a cross roads. We cannot indefinitely fund IBI programs for Esme. Even another month is out of the question right now. The choices we have are all difficult, and there is no real light at the end of the tunnel, money wise. Raising enough to fund a full time IBI program is more than I have energy for right now.

We have a few new therapy options we are looking in to. I will continue to do IBI type activities with Esme to try to build her skills.

It makes me so sad though, to know that as hard as Esme has worked, she now falls through the cracks. Our kids deserve so much better than this.

Tuesday, December 29, 2009

Wednesday, December 16, 2009

Untitled from Jane McRae on Vimeo.



Esme at her Christmas Concert (she's the one in the pink shirt and grey dress on the far right).

Sunday, December 13, 2009

Piano

Esme tickling the ivories

Wednesday, December 9, 2009

Snowed-Out

We were ready to go.
I was prepared to deal with whatever they said.
Cameron took one of his few vacation days so we could go together.
One of our friends said she would watch Esme while we went to the appointment.
We were prepared.
It snowed.
The appointment was cancelled.

Sheesh.

On the plus side, Esme and Cameron made a snowman this morning and threw snowballs, which made Esme very happy.

We are waiting to hear when our next appointment will be. Call me crazy, but I am feeling January or February. Parents of kids with special needs should be required to have a university degree in Waiting.

Tuesday, December 8, 2009

Tomorrow

Tomorrow is the big day. Well, maybe not THE big day, but it's A big day. Tomorrow we go and meet with "The Man" and find out if Esme qualifies for government covered IBI therapy. I don't want to be all negative, but I really, really, really think they are going to say that she is doing too well to receive IBI. And that will suck.

Yes, Esme is doing well. She is potty trained, she can tell us what she wants in the moment, she enjoys playing with other people and is learning lots of new words.

But she isn't able to speak about thoughts she might have. She has never asked a question, ever. She doesn't play with toys at home, she just walks around. She doesn't pretend. Learning new things takes time and work, and lots of it. Her friends are taking off, and will soon be leaving her behind. They want to play together, and she gets angry and confused and shuts down.

I want more than this for Esme. Not because I am not happy with who she is, but because I have seen the potential in her. I know she can go so far. She learns quickly when she is motivated. She wants to learn things, and use her knowledge and new skills. She can go far. She has gone far.

I don't expect Esme to be "normal". I love her and accept her just as she is. But I will not accept anyone telling me that she has come far enough. That the most I can ask for is potty training and not self-injuring. Since the moment we said "Esme isn't developing normally" back when she was 19 months, we have received eighteen 45 minute occupational therapy sessions and six 40 minute speech therapy sessions (in a group with 3 other kids). That's it. Esme is over 3 years old now, and was non-verbal at the time of her diagnosis (at 2.5 years old). That is the therapy we have been provided. We have paid for 30 minutes a week of speech therapy since she was 20 months old. We have paid for 9 hours a week of IBI. We have paid for preschool. We have paid for our naturopathic doctor and the supplements he prescribes. We have paid for it and Esme has improved. And because she has improved, we might hear "We aren't going to pay for it" from OHIP tomorrow.

It will be so much easier if I know that Esme is on the waiting list for IBI. The wait list is years long, so our work with her is far from over. Regardless of what they say tomorrow, we will continue to fund Esme's therapy ourselves, with the help of family, friends and everyone else who has supported Esme.

It will just be so much easier to know that help is on the way.

Monday, December 7, 2009

Santa Claus Parade

Esme loved the Santa Claus Parade!
She especially loved the creepy people in semi-filthy costumes...
and dancing to the bands, of course! (note that Esme is in mid-jump in this picture.)

Thursday, December 3, 2009

Playing Catch Up... part one

Yeesh, where has a month gone?!? Life has taken hold, and I'm afraid that blogging has fallen down quite low on the "Important Thing To Deal With" list.
I will try to do a bunch of posts to catch up on all the things that have happened this past month...
First, we went to Toronto to spend the night at a hotel and attend an Autism conference. The conference was great, and Esme really enjoyed the hotel. She would totally be a great vacationer if, you know, we had money to do that kinda thing! She was really into the whole hotel thing.
See?

Since the conference fell over Halloween, we did some Trick or Treating at the hotel. Esme didn't really 'get' the whole thing, but she enjoyed walking around and seeing the hotel.


Mostly she loved the hotel playroom, which was well-stocked with toys and crafts. And the pool, of course. The girl loves to swim.
Oh, and they had fish.
We also hung out at the university, where Esme and her Nanny (Cameron's mom... Nanny like grandma, not childcare person!) snuck into buildings and generally hung around while Cameron and I finished up at the conference.

It was a great weekend, and so informative. Afterwards, Cameron and I really felt like we knew a lot more about the biology of Autism, learned about some different therapies we wanted to learn more about, and felt like we got our game plan a little bit more solid when it comes to helping Esme be the best she can be. Which, if you ask me, is gonna be pretty darn great!

(Please pardon the crazy spacing on the pics in this post... after 20 minutes fighting with Blogger to let me put a space after the text, I give up. You win this round, Blogger!)