The Beginning of the End

We’ve been cruising on auto-pilot. Everything has been under control. I haven’t asked Dennis to come to an IEP meeting in years. This time it was different. This IEP meeting was the first in a long line of meetings that will punctuate Ethan’s last year of educational entitlement. Young adults with disabilities can attend public education through the age of 21. Ethan will turn 21 in June of this year.

The goal of the meetings during this year is to begin forming an idea of how Ethan will spend his life outside of the tight, predictable and supported structure that his school has provided him. Most of what we have known and counted on for the past 14 years will end in June. He ‘thinks’ he is looking forward to graduating. He wants to give a speech. He wants to see Mount Rushmore. How these things became inextricably linked in his mind remains a profound mystery.

I know that he does not comprehend that it means that Midland School will be a thing of the past. Hell, I can’t comprehend it myself.

Besides Dennis and I, there are people who know him and people who have not met him yet at the meeting. Sometimes that offends me. I can’t believe that some decisions that will be made are in the hands of people who do not have knowledge of who he is. I cannot honestly say there was much impact of that during this meeting. Everyone there had good suggestions that were in his best interest. The representatives from our local school district that sends Ethan to Midland all wanted and readily agreed to a battery of assessments that will yield a very good picture of Ethan’s ‘Present Levels of Performance’.

I was surprised to hear the reports from the work training center Ethan works in several days a week. He is reported to be a good worker with a good level of productivity (as far as supported work environments go). It was reported that Ethan can work for several hours, with breaks, at repetitive tasks like sorting coloring pens into packages. It was also clear that he seems pleased with this type of work. We were also told that he performs really well in outside settings, like schools, offices and nursing homes, where he has been taught and expected to perform things like filling copy machines, setting up dining rooms and cleaning school buses.

We are aware of many instances where Ethan has been extremely disruptive and non-compliant in work settings. These situations are rare, but discouraging and concerning none-the-less.

In my opinion and to be realistic, ‘competitive work‘ may or may not be a possibility for Ethan. Any ‘work’ will fill only a small part of Ethan’s week under the best of circumstances. But even having the hope that it will be part of comprises this new life was a positive development for us.

Also present at the meeting was a representative from the Division of Vocational Rehabilitation Services. Our understanding is that their services come from a different pot money than the budget provided through DDD that will help us establish services for him in the coming years. I also understand that understanding the roles of both of these agencies is very complicated and I will write about them as I come to understand them.

I was presented with a form on which to print the exact way his name should appear on his district-issued diploma. No. I said no. ‘If I don’t sign does it still happen?’ It was all in jest.

Sort of.

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