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.

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