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!)

Wednesday, October 28, 2009

Gnome, Sweet Gnome



GNOME, n. In North-European mythology, a dwarfish imp inhabiting the interior parts of the earth and having special custody of mineral treasures.

Almost back

Please pardon me for being away - it's been one of those weeks. I don't have any news to officially report, but I've been trying to get my ducks in a row for what I consider to be an inevitable outcome of one of Esme's appointments this week.

It's been tiring trying to figure everything out.

I am just about to wake Esme to schlep her over to her speech therapy session. We have to take the bus today. And it's raining out. I could call and ask my friend for a ride, but she needs to use my car seat in her car, and I left Esme's car seat out in the rain all night. Of course.

I will post more about what's been going on in Esme's life soon... but until then, here is a pic of Esme at my dad's wedding this past Thanksgiving weekend.


I'll be back with more details and pics soon!

Wednesday, October 14, 2009

Wednesday, October 7, 2009

Colour Matching


"Ah-dit!!"

(translation: I did it!)


Tuesday, October 6, 2009

Growing Pains

Three has brought some pretty big changes to Esme's life. Some have been easier than others. Some are happy changes, others sad. All of them bring with them an adjustment period as we all get used to growing up.

One big change is that Esme is no longer sleeping in a crib. Nope, she has moved into a "big girl bed".

She's hot and cold on the whole thing. While she does like laying in her bed, she is nervous at night and wants me to lay with her. She's been falling asleep sometime around 10 or 11 most nights, and calls for me all the time (just a little brag - she calls for me by yelling "I want Mommy!") She also tries the ol' "I want potty" trick to get out of bed too. And it works every time.
Because her sleep as been off, she has been tired during the day, and has even had a few naps here and there. A nap means a really late night, so that makes things even worse. She's been sleeping in like a teenager (10:45am was the latest this week), which would be fine except that we have to been on the road by 8:45am some mornings to get to therapy. She is quite a bear when I have to wake her in the morning. I wonder where she gets that from (Hint: It's not me.)
She would have had no problem staying in her crib. She was happy there, never tried to get out, and certainly wasn't too big for it (at 27 pounds there are infants who weigh more than she does!). But, after much deliberation, Cameron and I decided to get her the bed. It's so easy to let her stay a baby, to do things for her and to treat her like a child much younger than 3. Esme does not have that preschooler "I do it myself" drive. She doesn't push for independence. But when we give her a nudge, she rises to the occassion and shows us that, yes, she was ready for it.
Or, you know, she falls to peices and we see that no, she wasn't ready for it!
Esme may be just learning to talk, and she may be the size of a 2 year old, but she is a three-year-old now. She is supposed to start kindergarten in less than a year. While there are times when we would like to keep her a baby forever, she is getting older. She is learning and changing and growing every day. Some things come easy to us, some are really challening, and some things (like the new bed) fall somewhere in between.
We've got a lot of growing up to do. Growing pains and all.

Thursday, October 1, 2009

3

zero

one

two

three

Happy third birthday to our best girl!

Monday, September 28, 2009

The Final Vestiges of 2


Can you guess what Esme is doing?

I mean besides wielding that Stick Of Doom.... errr... toy fishing rod. And besides scaring her Grandparents with her sweet ninja moves, taking an eye out, or that 'OT nightmare' sitting position (she loves that W sit!).

Give up?

Why, she's getting ready to turn 3, of course!

We are in the final stretch of 2, with only Tuesday and Wednesday to go before the big 3! Well, I guess she won't truly be 3 until 9:15 at night on Thursday, but since she will be asleep by then we will go ahead and celebrate during the day.

Esme has been enjoying the last moments of 2. She has celebrated her birthday with her Grandparents, Uncles, Muzzie (great-grandma) and her Daddy and I. She has had a bunch of play-dates, and has been thoroughly enjoying school and gymnastics. She has made some new friends.

And she's been doing a lot of this.

Because what says "2 about to turn 3" more than avoiding posing for your Birthday-Party photo by refusing to sit still and running around on Nanny's hot-tub-cover.

Well, maybe this.

Tuesday, September 22, 2009

Lovin' That Noise!


My heart's in the Highlands, my heart is not here,
My heart's in the Highlands, a-chasing the deer;
A-chasing the wild deer, and following the roe,
My heart's in the Highlands, wherever I go.
Robert Burns
(Esme and her buddy at a local Scottish festival, listening to the bagpipes!)

Sunday, September 20, 2009

Clowning Around


This



is why



the world



loves


a clown!

Friday, September 18, 2009

Esme's Bedtime Book Review

Looking for some great books to read with kids? Just ask Esme. Esme is an expert on many, many books. Especially these four. Because she reads them numerous times a day, and has them read to her every night. Every. Night.

The classic "Just Go To Bed". Starring Little Critter, or "Hoppy", as Esme calls him. Hoppy avoids going to bed by playing with all his toys. Dad plays along as Hoppy goes through his bedtime routine, but eventually tires of it and tells him "Just Go To Bed!!" Hilarious, I assure you.
The highlights of this book include finding the mouse on every page, saying what the mouse is doing, the word "pajamas", and, of course, the part when Hoppy hops around like a bunny.
A must read. At least once a day.

Another classic. In "Where the Wild Things Are", Max is sent to bed (without eating anything!) after a day of acting like a Wild Thing! Suddenly, his room turns into a magical world and Max meets REAL Wild Things. He has a great time, but misses being where someone loves him "best of all".
Highlights of "WTWTA" include; the part where he chases the dog, making Wild Thing noises, the phrase "yellow eyes without blinking once", the whole "wild rumpus', more Wild Thing noises... according to Esme, the whole book is a highlight!
Another classic by Maurice Sendak. In this book, Papa has gone to sea and Mama is pretty despondent about the whole thing. Ida is left to care for her baby sister, but does a poor job of watching her and goblins steal the baby away. To be their bride. Because goblins are weird like that. Anyways, Ida takes her trusty Wonderhorn and sets off to save her sister.
Highlights of this book include; the baby... Esme just seems to really like this book. She reads it to herself all the time.

And finally, One to Ten and down again. The book we dread having to read. Also called "Balloon" around here, this book is Looooong. And repetitive. And its the last on the list of books we read before bed (see books above). We probably wouldn't dislike it so much if we were reading it at any other time, but by the time we pull this book out its usually coming up on 9:00 and we are loosing our voices. I think I can stand it more than Cameron. Nevertheless, in this book, a big red balloon appears in the sky, and any time anyone touches the string... up they go! All ten of them. And you can count them all each time.
Highlights of this book include; remembering the names of each of the people (especially #4 Tom Knockatthedoor), saying what each person says (especially "shoo shoo shoo"), when the balloon smiles, and the baby at the end of the book.
So there you have it. The current Greatest Books of All Time. Or at least of Bedtime.

Wednesday, September 16, 2009

Gymnasts and Babies

Esme has decided that her gymnastics teacher is the Bee's-Knees.

Every Saturday after breakfast, we head out to gymnastics class to watch Esme run around with 15 other 3 year olds in what I can only describe as semi-organized chaos. Semi-organized may be stretching the truth a little bit.
The class has 3 teachers; two female, one male. Esme has apparently (as of her last class) decided that the female teachers are terribly boring. The male teacher, on the other hand, is the greatest-person-in-the-world. Ever.
Esme spent most of the last class standing right next to him. Or cutting the obstacle-course circuit short so she could double-back and do a hand stand with him again. Or casually reaching up and holding his hand.
When her group of kids would move from one piece of equipment to another, Esme would give the new activity a try, deem it nowhere near as interesting as the aforementioned male teacher, and jog back over to his station to hang out.
Oh, and she copied him.
Copied his every movement. Even when he got hit in the.... *ahem*.... you know..... and fell to the ground, there was Esme, rolling around in pain next to him, sound effects and all. She leaned against the wall with him while he tried to regain his composure. She helped him count at 'hide and seek time' rather than hiding. She pretty much did whatever he did.
We saw him do a back flip from standing the other day, without even touching the ground! I'd like to see Esme copy that!
In other news, today I found a little sample bottle of the shampoo I used on Esme when she was just a tiny baby. The smell of it reminded me so much of having a tiny, sleeping baby in my arms... So I spend a little while looking at old pictures of Esme, remembering those quiet (and not-so-quiet!) days.

I must say, I am actually missing having a baby around now that I am living with Miss "No bed! No bed! No rest! No night-night! Go away Mommy!!!!"

Not that I'm complaining. There is no sound sweeter than your child stringing together words on their own. Of course, "I love you Mommy" is a little bit sweeter than "Go away Mommy". But not by much.

Sunday, September 13, 2009

We're back! And first day of Pre-K!

No, I haven't been abducted by aliens or fallen off the earth or anything so dramatic. We have been busy as bees around here getting ready for our home-preschool, starting home-preschool, getting ready for pre-k, starting pre-k, filling out and mailing forms, setting up new therapy program, starting new big-kid-gymnastics class, doctors appointments... oh, I could go on.

Big news! Esme had her first day of preschool. She loved it! She was a little quiet when I dropped her off, and her aide said she cried a bit and said "I want Mommy!" (yay, Esme!), but then she settled in and by the time I picked her up, she was happy and playing!
The next time we went she said "I want babies (the dolls in the doll center), I want Susan (her teacher), I want cake (her favourite cupcake toy)!" She happily went into the class without me and waved goodbye! When I came to pick her up she wanted to go down the slide one more time but told me "No Mommy. I want Lo-see (Lois, her aide)". I watched while Lois helped her down the slide! *cry*! I've been replaced!
Never fear, she was happy to come home and told me the next morning "No Lo-see!". Luckily it was not a school day.
Here are some pics of her first day of school. She was not interested in posing for posterity. Ah well.


The obligatory Thomas the Train backpack.


More updates to come, including... Esme's first crush!