A Life Apart: Parent Perspective on Living with a Child with Asperger’s

LESSON THIRTEEN: Looking at Post - High School options

OBJECTIVE: Defining what potential agency support might be available

Keeping in mind that each of our children is different, I will tell you the decision we made, for better or worse. My son had completed his credits to graduate. Was he truly ready? No. He had only been mainstreamed in a few courses and then with modifications. But deep down, I knew the school had nothing to offer. The only option that was worth consideration for what we believe to be his true needs was a residential program combining supported education and life skills. Nothing was a “fit” and I knew we would have had a big battle on our hands. He marched in with his classmates and took the diploma. It was a bittersweet day.

A year later, this is where we are:
He works very part-time at two jobs at minimum wage. The tasks are routine but the environment is right for him and incorporates his interests. One is a large art supply store and the other is a video store. Even to reach this point has taken tremendous effort. It is a start. It is one of what we hope will be many small steps to foster whatever level of independence we can help him achieve.

An Alphabet Soup ADMQVRDMR DMH PDD MRC

There is no one agency that takes the lead in our state. The first question the Department of Mental Retardation wants to know is: “What is his IQ?” Because of the diagnostic criteria of Asperger’s Syndrome, the young adult with the diagnosis will not be retarded. DMR, as it is known by its initials, does not buy my response: “Well, you see, “I start to say, “his IQ average to slightly above-average, but that does not translate into such a high level of daily functioning…And the IQ is really meaningless when you see the level of his daily coping skills…” Not interested. They only want to hear a number, an IQ of less than 70.

The other agency is the Department of Mental Health and Asperger’s or autism alone does not qualify, unless a co-existing disorder and hospitalizations can be documented. So, other than that, the Asperger’s Syndrome population in our state is left with one agency in the alphabet soup of services: the Massachusetts Rehabilitation Commission. Although Asperger’s Syndrtome and related disorders are not new to MRC, this is not the population they know so well.

Like any state agency, its caseworkers are overloaded and money is tight. Out of sheer frustration that my young adult was some watching TV and sleeping most of the day, unable to self-structure, I thought long and hard before I wrote the Commissioner a letter. I was not sure he would read it. He did and months later I received a reply that federal and state monies had been set aside to work with this population around their employment needs. A small victory.

This agency, though, has a narrow focus: get people with disabilities employed. There are many other needs, including housing, transportation for those who don’t drive, socialization opportunities.

EXERCISE:

If employment for your child is an imminent goal and if you could have a face-to-face meeting with the head of your state’s rehabilitation commission, what would you say your young adult needs and what the caseworker or job coach needs to know?