Sunday, December 12, 2010

Two visions, one kid


Sometimes being a special needs parent can make you shake your head.

Last week was our first IEP meeting at msk's new school. This is not a post about a bad IEP meeting. It went very well. There seems to be a plan in place to get to the mod MSA (we were doing an Alt MSA for the last 2 years), classes are generally going well and I now understand how special education services are working. Lots of positive stories were shared and I'm feeling pretty good about our middle school choice.

After the meeting, one of the team members asked to have a little private discussion with my husband and I. There was a lot of hemming and hawing. Eventually she explained that she was concerned that msk was only doing well with lots of support and accommodations. What was going to happen when he aged out of school and all that support? Maybe msk should be in the life skills class. Not because of an intellectual disability - everyone agrees he's very intelligent. The problem is, will he ever be able to live on his own? She was worried that he would spend his adult life trapped in our house or worse yet, in an institution. I explained how the autism waiver was providing services outside of school to work on going out in the community and general survival skills. I explained that we really want to be on the diploma track. I didn't get defensive or anything, but clearly her vision of msk's long term potential was pretty low, and she's trained in the field.

The very next day msk's behavioralist, b-d, pulled me aside. He wanted to tell me how happy he was with the progress msk has made in the six months since he started working with him. Slow, incremental improvements, but on track for meeting his goals. He said what a sweet kid msk was and how much he enjoyed working with him. Then he explained that he was a little sad about this progress, because it indicated that msk wouldn't be on the autism waiver eventually. In other words, he wouldn't be disabled enough anymore. In the long term msk is going to be living independently. I didn't argue, but honestly I have a hard time seeing it. This is a kid who can't tell you what happened today at school; who can't consistently answer any questions, much less hold a conversation. He's going to be able to get a job, pay bills and live on his own? That's hard to visualize for me.

Two experts with totally different visions. I've got no idea how to plan for his future, or my own for that matter.

5 comments:

  1. When my son was much younger an SLT commented on how she and her colleagues didn't always agree on the diagnosis, prognosis of their clients. When I gave a surprised look she said it was fairly common, each person views the child from their own field of expertise and it was good to have different opinions from colleagues to bounce thoughts and ideas off. Have your two experts talked to each other?

    Planning for the future...I know I should be thinking about it but I don't really know where to start....

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  2. Time for you to write. Miss you.

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  3. @emma - they don't talk to each other and come at the issue from totally different perspectives, so I guess I shouldn't be surprised that they have different answers. I know it's wishful thinking, but I'd really like there to be knowable answer for what level of support my child will require as an adult. I hate the thought of planning if it's about setting him up for some sort of non-independant living, but I hate not knowing even more.

    @Anonymous - You're right. I will try.

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  4. this Time for you to write.and i Miss you.

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