Friday, October 06, 2006

I want it to be personal

Today two members of T's team (I consider everyone who works with T part of a team) turned down an opportunity to take part in something we are putting together for him. It is a Circle of Support, and I will post on that on a future day. It will consist of friends, teachers, therapists, babysitters/caregivers - essentially, his team and our friends. Eventually, his friends will join the circle (when they are a bit older.) Anyway, back to the two who turned us down. They had a very reasonable, professional reason for not joining us: they can't do this for every kid with autism that they work with, so they won't do it for him. They want to stay in touch with what's going on via email and phone calls - it's not that they aren't interested, but meetings are a no-go. These are two people who have worked closely with him for about 20 months, and it's safe to say know him pretty well.

I was disappointed by their decision, but in a way I do understand. It still bugs me that they said no, and thankfully Rob was home for lunch today and we processed this together. Left to my own devices, I over-analyze, dramatize, and can blow things out of proportion. (Being an opera singer was a good fit for awhile, after all.)

At one point, Rob (who was also bummed that they said no) said that it probably wasn't personal, and that we shouldn't take it personally - that they are doing their job (no more, no less) and they were probably just making sure that they weren't getting too personally involved. Yes, this is true. But as I thought about this, I said "But I WANT it to be personal!" I want people who work with T to care about him and love him so much that they will take time out of their lives to help his life flourish. I want people who are passionate about him because working with him is not for the faint-hearted, and neither is planning for and building his future.

We are spoiled - so many of the people who do work with him absolutely love him. Case in point: A former SLP (Speech & Language Pathologist) came over after school this week for a visit because he kept saying her name over and over - I emailed her to let her know, and she was here, on the floor playing with him ON HER OWN TIME within 48 hours. These are the people I want working with him. Do I expect too much? Perhaps so, but isn't that what I have to do for T? Expect the unexpected, aim higher than I think possible?

Okay, take a deep breath. They want to know about the Circle and be involved, even if it is only by phone & email. I can also understand having to say no to some things. I'm having to do a lot of that myself. But I'm still disappointed, darn it.

3 comments:

lemming said...

Keep asking.

It's not personal.

nonie said...

these individuals probably could not give enough of themselves at this time for T and it is a good thing they said no...keep asking the right people will latch on.
xoxo T's nonie

Elaine said...

Your Nonie is a wise woman!