Friday, April 9, 2010

Here today...

How is it that we went from this on the weekend...

... to this today?

OK, so that isn't Cameron standing outside our house. And maybe that isn't a totally accurate picture of the weather today. But still. It's snowing here.

And isn't that bad enough?

Monday, April 5, 2010

Hans Lady

Esme has auditory processing difficulties. Which means that she hears (or interprets) words differently than most people.

Esme uses a lot of echolalia. Which means she repeats things she has heard over and over, often for no apparent reason.

Together, these two things make for some interesting (if not confusing) phrases being repeated over (and over and over) around these parts.

Such as...

It's time sit by ba-fa-day. ("Its time to sit by the wall today" - a song they sing at dance class)

Oh! Oh! Oh Hans Lady! (no idea)

Wha-mama!! (There is no way to type how crazy this sounds when she says it. It started as Chip from Beauty and the Beast saying "What's there mama?" and its turned into a monster scream of "wha-mama!!!")

Tins-ol-time, tins-ol-time! (Tale as old as Time, from Beauty and the Beast)

Here it goes! (no idea)

Make a me! Make a choice! (our best guess is The Little Mermaid, but its still a bit of a mystery)

ohnooooo Watchoutnooooo! (no idea)

Wait wait please! (Cinderella)

Surprise! Surprise! (Cinderella)

My fave it the 'Oh Hans Lady' because I have absolutely no idea what its from. And because its so cute. And because I like the Star Wars reference.

Like most Esme things, every now and then I get all caught up in how much I wish she wouldn't repeat these things over and over, how.... 'not-normal' it is. But I mostly I enjoy hearing her voice, and laugh when her words make absolutely no sense to anyone but her - and laugh even harder when her strange words suddenly make more sense than anything anyone else is saying! And like everything else, one day these strange words will stop. One day she will say more meaningful things and less random things. One day I will miss hearing about the 'ba-fa-day' and 'tins-ol-time' the same way I miss being called "My" or talking about "Lodie" babies. Now I'm Mommy and the world if full of "little babies' to explore.

Until these strange words change or fade away, I will smile whenever she starts going on (and on) (and on) about "Grumpy, Sloopy, and Doc." I will sing "There may be something there that wasn't there before" just to hear her scream "Wha-mama!!!".

And I will delight in every "Hans Lady".

Friday, April 2, 2010

99% of the time... or maybe 80%... ok, I'm not 100% sure of the percentages, but lets just say MOST of the time I am totally at peace with Esme's autism. I am totally at peace with who she is and what she can do.

I don't define Esme by her autism, because anyone who knows her can see that she is so much more than that. I love her feisty spirit. I love the way she yells "Mama, Mama, Mama!" whenever she is upset, even though she calls me "Mommy". I love the way that she takes her clothes off as soon as we walk in the door and puts on her princess dress up clothes - every time. I love the way she always matches her dress up shoes to her dress up dress. I love the way she is becoming her own person - hating all the clothes I like her to wear and pitching a fit when I try to put something brown or green or blue (read: not pink or purple) on her. I love the way she has become so far removed from who I am and who Cameron is and has totally and completely become who SHE is.

But I would be lying if I said I didn't want more for her. I want her to be able to do anything she wants in life. I want her to make and keep friends as they get older and more sophisticated in their social skills. I want her to be able to tell me what she is thinking and what she is planning. I want her to feel comfortable in her own skin. I want to be able to assume that she will be able to live an independent life. I want to be able to assume that she will have the opportunity to become whoever she wants to become.

Its that part of autism that drives me crazy. I feel like I can't prepare myself for caring for Esme when she is an adult because I don't know how far she will progress. I can't totally enjoy her as-is when everyone is telling you that more intervention means a 'better' adult outcome. I don't want her childhood to be seen only as a precursor to adulthood - a time of therapy and work to get to the part of life that 'really matters'. I want her childhood to matter, and to be whatever she wants it to be. But on the other hand. I don't want to short-change her and not give her every opportunity to succeed.
Sometimes I do wish I had a crystal ball so I could look into the future and see what it holds for Esme. Because if she is living in a group home and volunteering at the Humane Society, if she is living with a roommate and working a simple job, if she is in university getting her PhD, I would be ok with all of that. It's the not knowing that makes me crazy. Maybe not so much not knowing as not-being-able-to-assume. Or dream.

But Esme keeps us living in the present. To Esme, there is only the present. And so we spend our presents dancing to "Tale as old as Time" (or "tins-ol-time"), playing with 'prin-tense' dolls, watching 'Beauty Beast', and matching our purple shoes to our purple dresses.

One thing I am sure of is that this is not what I was expecting when I was expecting Esme. This is not the life I planned. This is not the child I imagined.

She is 100% more wonderful than I ever thought she would be. And that is one percentage I am sure on.

Monday, March 29, 2010

We begin to find and become ourselves when we notice how we are already found, already truly, entirely, wildly, messily, marvelously who we were born to be.
- Anne Lamott

Sunday, March 28, 2010

Friday, March 19, 2010

Long-Overdue Esme Update

We will be starting a new therapy with Esme (called RDI - Relationship Development Intervention) in April. We are really looking forward to having another structured type of therapy going on in the house.

Esme has been enjoying her preschool and seems to have made a couple of friends - they like her and say hello to her, and she ignores them. Unless they are running around, then shes right in there!

We have offically decided not to send her to kindergarten next year, and I am really looking forward to having her home with me.

Esme has been attending dance class since February. She is getting into it and is actually doing some of the things the other little girls are doing. She loves looking in the mirror though, so the huge wall-sized mirror in the dance room is a pretty big distraction!

Esme has spent the last week very sick with a flu, and all that weight we worked so hard to put on her has fallen right off. Back to square one!

We have been loving the spring weather and have gone on more than a few walks along the river, to the park, and just around the block.

Now that things have settled down and we are back into a good routine, I am looking forward to getting back into posting regularly on the blog.

Pictures soon - including dance class! A must-see.

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.