My Minutes From The March Special Education Advisory Panel Meeting

There was a speaker from KU that is working with DESE on some project for transition.

To be honest, I lost track of what she was talking about because she made it known from the beginning that parents should have little to no impact on decisions regarding programming.

At some point one of the folks on the panel asked why all of these state agencies never have parents as members on these panels.

Heidi Atkins Lieberman spoke up and said that parents aren't normally on these panels because they only want people that have decision making rights on these panels. They don't want people that can't put the ideas into action. (Translation: you have no power).

The woman then stated that parents need to have their concerns voiced. Heidi said that Mary Kay is a parent and she is on many of these committees. The woman said that she is on these committees as part of an agency and not as a parent.

Heidi said that she felt that Mary Kay would be offended by that statement because she is a passionate parent. The woman apologized and stated that she meant no harm and certainly had the utmost respect for Mary Kay, but she felt that the panel should have parents that are not a part of any other agencies.

At that point the woman from KU said that most parents couldn't possibly make the commitment to attend these meetings and that they were highly technical and then she looked at me and said, "I'm sure that you find these meetings boring, Sherri, and that you don't like attending them."

Now I have never spoken at these meetings and tried to just sit back and take it all in. I just really wanted to see how the machine worked. But, I was a little off of my game and probably a little miffed because the city was taking down my campaign signs.

I said, "I don't find these meetings boring and I attend because I want to. Parents need to be a part of every agency. I will tell you what I tell folks when I speak before them. You can read all that you want to about autism. You can study all that you want to about autism. You can get a master's degree in autism. But, until you come into my home and live my life, you don't know anything about autism."

She then interrupted me and tried to get back on track. But, she started the ball rolling and it wasn't going to be stopped that easily. I went on, "I will explain it to you in the only way that I know how. It's like going to a male gynecologist. He can read about cramps. He can understand scientifically about what causes cramps. He will never know what cramps are because he has never had them."

Later in the meeting (and I was giving it my best effort to remain my usual silent self) we were going over our committee reports. One lady said that she would like to see DESE limit the number of advocates (she couldn't pronounce the word) that come to IEP meetings. She also stated that there should be some wording about how they would be forced to behave.

Ok, folks, it's been a long week and frankly I don't have much faith in the system. I said that parents never go to their first IEP meeting with an advocate. They do that after they have tried to work in the system. I told her that I speak as a person that goes to IEP meetings with families and sometimes we take 8 people with us. It evens out the odds and levels the playing field.

I told her that you can not legislate good behavior. I told her parents would not become adversarial if they weren't backed into a corner.

Heidi then mentioned that they are trying to get MPACT into schools to do parent training. I told her that MPACT is already doing parent training and all one has to do is go online and look at their schedule and class list.

Heidi said that parents didn't know how to find the information and that's why it is going to be so great that the districts will host the trainings. Wouldn't it be great if the districts just told the families about the training without they and DESE having to get credit for hosting the training? How about the districts and DESE just do what they are federally mandated and the whole discussion would be mute?

Another member of the panel spoke up and said that she was a special ed teacher and that she understood the district side of it and that it could become adversarial. She is also a parent of a child with a disability and has to hire an advocate to go with her to meetings. UMM!!

By the way, the panel is supposed to be made up of mostly parents, but they find ways around that by getting parents that work for school districts that have children with disabilities. There were two people there yesterday that had no other agenda other than our children. Not very good odds.