While I was carpooling C to swim Thursday afternoon, one of the assessors from the DCN (The Diagnostic Center Northern CA). called. R, the hubby, took the call. The assessor was cleaning out old files or something and came across F's file. He wanted to check and see how he was doing.
I haven't thought about the DCN since 2010. Here's what I know about them. They were described to me as the "experts" on the hardest to serve special education students, the most complex of children. The was supposed to the best place to do F's assessments in all areas of need. We were referred by our District because I had requested so many assessments. Appropriate assessments were seriously lacking in his IEP documents. I'd have to pull the big box of records to review the list, but I can tell you it was in any and all areas of potential need. Thanks to our advocate, we tried to be as thorough as possible.
Here's what F experienced. To be assessed by this "highly skilled team of experts" F had to travel. The trip was over a 100 miles and 2 hours for him. F hasn't traveled in years. F hadn't been on a school campus in over a year when they referred him here. F has asthma complicated by the typical lung issues that come with having such severe cerebral palsy. It was the first few days of June he was scheduled for two days of testing. We would arrive the day before. He would test over the next two days. I'm sure I tried to negotiate with them coming to us locally, but they I was told no. This is how it's done for these kids. Strike 1 against F for good assessments.
F's van was packed from top to bottom with all of the supplies he needed to care for him for that short period of time. Thankfully, our nurse, Beth was able to come with us. I couldn't have made the trip alone. It's a challenge to care for him out of our element. We loaded up the day before arrived at the designated hotel, which wasn't close to the DCN. I literally had to rearrange furniture to accommodate F. We were all exhausted. F did not sleep most of the night. I'm sure he probably awoke a little disoriented since he hadn't traveled in so many years. I wake up that way sometimes when I'm really tired and someplace new. So it's reasonable to believe he would be too.
Exhausted the next morning we are expected to show up bright and fresh for the assessments. I called them to tell them we were running late. I really didn't want to go. F was wheezy and congested. I'm sure it had to do with trees being in bloom and all the car exhaust from the drive and traffic. I am completely anxious and stressed and can already tell F isn't feeling his best, strike 2.
We finally arrive the team greets us. They introduce themselves. Then take us to these little rooms that barely accommodate F's wheelchair. Then they send us to the assessment room and it's even smaller. We barely fit. They have me read the paper to him. He is wheezy and congested and sounds horrible. He's refusing to open his eyes and interact. I can't blame him. We do our best. Then they have me leave and Beth come in. They try to work with the two of them. I don't think much changed for how F was behaving. Why should it? He's legally blind and in an unfamiliar environment with tight spaces and bright lights, not optimal for him. He's having difficulty breathing. It's already documented in all of his school records that he fatigues easily. So lets see didn't sleep, difficulty breathing, recovering from long drive... conducive to accurate and appropriate assessments? In my mind I hear these words "We are the experts on the hardest to serve children" Really? It doesn't take a rocket scientist to figure out that so far you've set him up to fail!
The other unimpressive thing about this agency that "specializes in assessing the hardest to serve children" is that there was no accommodations on site for someone with such significant physical disabilities. There was no room available to get F out of his chair for changing or to stretch out. They came up with a solution by sending us to some apartment on campus, but we had to walk by all of the landscapers cutting hedges, using mowers, and blowers. One word, asthma.
They insulted him. Strike 3. If you want my son's attention. Don't baby him and certainly don't try to make him do preschool stuff. He won't do it. They tried to have him match colors using dishes, a plate and spoon or something. This was when Beth, his nurse was with him, because I interfered with the process. Did they not pay attention to the fact that he's had a g-tube and feeding pump FOR HIS ENTIRE LIFE? Really dishes! How about something more appropriate and relevant to his life? I seriously doubt that someone who is NEVER going to sit in front of a plate of food or hold a spoon really cares about what color the plate and spoon are or that they are a plate and spoon. But I bet if they'd played a cd or a cassette, he could correctly identify which one was which. Perhaps an audio story, a mystery, sports story, biography, etc. I'm sure he could tell what type of stories they were. But they chose dishes and his name.
I could go on and on about this experience, but I won't. My point is that the "experts" may not know crap about a child like yours because they are so unique with their group of disabilities, method of communication, and coping skills. The only experts for these children tend to be those that are close to the child. The ones who see their potential, believe in them, inspire them, and love them.
If your child has been assessed at the DCN or any Diagnostic Center, I'm curious how it worked out for your child.
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