He's kept me busy

When I'm not spending hours on the phone with different offices, agencies and idiots, I've either been at an appointment, meeting or at work or been on the floor with LarryBoy and Alfred (his asparagus sidekick). Or throwing a birthday party or cleaning up from that party.

Yesterday was a particularly tough day. We had an 8:30 appointment with MHMR's autism unit. They have several services, some we need, some we don't need yet, some that are beyond my wildest dreams and some we hope to never need. We got on about a half-dozen wait lists, anything from 2-3 months for respite care to 18-24 months for ABA therapies to 10 years for job skills and career services. Also got information on music and horseback riding therapy and (how cool is this?) a person that will come in and help your child with autism get bathed, dressed, fed, teeth brushed, etc in the mornings so that you can attend to your other children. This sounds like overkill, but since it has taken as long as 45 minutes to change a diaper while Charlie punches, bites, claws and kicks me, I must admit to being tempted.

I also got information on Medicaid waivers, how to choose what help we need and how to pay for our copays for what we do use, once our name comes up on the waiting list.

Fabulous, right? She was sweet, eager and informative--completely unlike every other experience I've had with a government agency. There was no waiting room, no taking a number and waiting three hours. There was even a Charlie-proof place for him to play while we talked.

Problem? While I intellectually know that MHMR stands for Mental-Health Mental-Retardation and even worked for one in college, gathering data on community services, it never once occurred to me that autism falls under the umbrella of mental retardation. It kind of hit my like a brick that we say 'developmental disabilities' to be polite and politically correct, but that also meets the definition of some not-so-nice words and it was really hard to sign my son up for services under that umbrella, no matter how rationally I know it isn't that.

After some volunteer work at church followed by cleaning house and watching a friend's kid for a few hours, I went to tour a preschool. This school follows the Montessori model, which is supposed to be fantastic for kids on the autism spectrum and I'm not entirely trusting that the school district will do what they are supposed to do in providing him developmental preschool.

Despite being told on the phone that they had experience with autism, even had another student with it, that they were fine with him not being potty trained, that they had openings (including part time) and that they had classrooms that should be suitable for Charlie, it was made clear when I met with the director that Charlie was not welcome in her school. It was also pretty clear from the large rooms containing 30 kids and 3 teachers that Charlie was not going to love that place.

Leaving work, I checked my voice mail to learn that the blood they'd drawn last week was not enough and that I need to take him in to do another draw.

Did I mention that Dixie had a turtle habitat project due today? Oh, and Melody had a birthday?


Kristin said...

That was the hard part, MRDD services.

Ohio recently dropped the MR and each county agencey is now the "Blank County Board of Developmental Disabilities"

I wish all states would follow suit.

Unknown said...

It's sad that as far as our country claims to have come regarding people with disabilities, one little boy with autism isn't welcome at a preschool.

Myrna said...

We just had our experience with the Bellevue, WA district. My son needed to be in a developmental preschool, and the Childfind coordinator made it clear to my husband that my son is NOT welcome because he has autism!