Friday, June 12, 2009

I wasn't going to post this... however...

Originally, I wrote this on Facebook, just to get it out there because it was bothering me. I wasn't going to post it here because it makes me look like a pitiful whining moron. However, I realized that the point of this blog isn't to give me a nice public image- it's here for me to rant, rave, joke, reminisce and all that good stuff. It's not real if I pick and choose which emotions and words to put out there. So yeah, I'm a pitiful whining moron right now. Don't like it, skip the post. Being an autism mom- not always sunshine and butterflies. Sometimes it just sucks.

After the whole horrible IEP meeting, I'm feeling really down. I have never, in Jaymes' 5 years of life, had professionals who work with him purposely read out a list of things he can't do, just to make a point and to tear my argument for inclusion down. I've never had anyone at an IEP meeting take things so personally they need to attack my CHILD and his abilities to prove their point.

I always felt a certain sense of pride in the fact that when Jaymes was diagnosed, I didn't grieve. I have always been proud to have just jumped in and started taking care of his needs. But today I feel like I'm grieving for a child I never had- Jaymes has never been "normal", so it's not like I know what I'm feeling sad about. I guess it just really hit home how much of a mess poor Jaymes is. The teachers listing things the way they did hurt me a lot and really crossed a line. I understand why it was done, and that they did want to make a point, but that was a cruel and disrespectful way to go about that.

I guess I've been spoiled. The therapists and doctors see so many kids who are so much worse than Jaymes, and listening to them talk about him with positivity and caring has kind of kept me in this little bubble of "well he isn't THAT bad, he'll be talking in no time". I know it doesn't make sense. I knew his autism is moderate to severe, but I'm used to him and no one has ever told me "Jaymes can't do it" before.

I wish we hadn't had that meeting. I feel like they took something from me. Even if that something was my stupid little bubble of unrealistic dreams for my son.


Anonymous said...

What a great post. Very honest and sincere. I know IEP's are never fun. We just had ours too.
You think they are doing so great and then somebody tells you that they are developmentally 3 years behind and it feels like a slap of reality.

I have a Facebook page for my blog..would you mind if I posted this link on the page?

Amber DBTD said...

Sure, link away.

I'm not so much upset that they were honest, I'm upset that they seemed like every little thing they named that he couldn't do was some big triumph for them.

Becky said...

I read several of your blogs going back to the first IEP meeting. I'm a special ed teacher, the mother of an LD adult child, and the grandmother of a mildly autistic 2 year old boy. Truly, I sympathize with you. But - don't you hate that word? You say how much the teacher loves your child. How very fortunate you are. It's true you know your child much better in the home environment, but it sounds like she knows him better at school. If I had a teacher who cared that much for my child, I'd go with her instincts. There should be many other ways to allow your child to have socialization with non-disabled peers.

Amber DBTD said...

Hate what word? autistic?

I agree with you, Becky. I've always felt very lucky and secure in the fact that Jaymes is so loved by the people who work with him- but this particular teacher isn't going with him to Kindergarten. He's off to a bunch of new people, who may love him or may be totally indifferent to him. It's a scary thing.

You're right- she probably does know him better at school than I do. I think it's hard for any parent to admit that, goodness knows I'm human and I don't necessarily have the most logical feelings on things. That's the joy of having my blog- i don't need to be right, or even all that realistic all the time. It's a vent type thing.

Honestly, having had some time to think after the IEP meeting, I remain very annoyed about some things, but as far as Ms. A goes, I'm very sad that Jaymes will not be in her class anymore, and I can only hope that someone else will care as deeply for him as she does.

Lorraine said...

I think that "stupid little bubble of unrealistic dreams" is the very foundation of what connects parents with children. We provide their bubble, so they can grow up with unconditional security and love, to help them prepare for the chaotic world beyond that bubble. That's our job. And it sounds like you are doing your job extremely well.

Crystal said...

I totally agree. It's soo hard and nobody but an autism mom can understand that.