Tuesday, April 20, 2010

it's official.

Let's start with I'm a loser. I mean, here I am all tough girl and of course I get teary and emotional at the iep meeting today. Needed a tissue. Great, I'm one of 'those' parents. I know they will talk about me afterwards.

Here's the deal, we went to a lawyer.  Great lawyer. super nice. We gave her information and all the the results and some money and she coached us and prepared us for the iep meeting. She would have represented us at the meeting, but that was too much cash for us for now. We got the information and were prepared that if it did not go well, we would NOT sign it, then pay her the retained fee and go from there.

Her coaching was good. We felt prepared and knew what to say. Adam will have what he needs, but it should be noted that we have been to numerous meetings as teachers and are more informed about this stuff than the average parent. I would say that this process is not designed for the poor or uneducated and it would easily be intimidating for a parent.

I mean, there's a whole lot of professionals, they give you reports and go over test results with no glossary of terms. I mean, what it you don't know: norm-referenced, percentile vs. percentage, domains, true developmental functioning, scaled score, quotient, or confidence interval.

I guess, you'd ask, or be intimidated or not even ask for fear of being seen as dumb. Also, what if we hadn't paid the attorney, because you didn't have the money? Yes, there are clinics and advocacy groups, but when I called those, there are long waiting lists due to our budget cuts in state right now.  If we didn't pay the lawyer, I think we would have inadvertently screwed up the feeding and medical components and would not have had the knowledge to use particular phrasing.

Also, it was a really emotional thing. Which should be noted and no one really addressed this to us as parents. I mean, up to this point, we knew he was disabled, special, had medical issues and diagnosis which contribute to developmental delays, but no one ever said. "Your son is disabled".  We had (up to this point) all kinds of medical labels: subclottic cysts, failure to thrive, chronic lung disease, etc.

Today, Adam was given a legal label. He is now a preschool child with a disability. A disabled preschooler. This is a label that we agreed to. A label that may or may not be overcome. I don't know if at the age of 5, he will have made gains or will this label prevent gains. Will he only achieve to this level? It is a serious thing. It is also a very emotional thing.

It is an emotional label and no one addressed this at all today. No one warmed me this sadness would come. Yes, he needs the label. He needs the services. He needs the help and without the label he will not get the services or help. But it's a crappy label and I wish services would be given without labeling my child. I wish all children would get the education they need without legally labeling them. It also hurts my heart to have such a feeling of permanence.

1 comment:

  1. As a non-parent, I expect I will never know how you feel. As a friend and follower of your story I do know that your child will perform to the utmost of his abilities. He will achieve more than anyone ever thought possible. No label put on him by anyone will change that. I know this because the label that has defined him from the beginning is this one: "son of Alaina and Philip". That label makes anything possible for him.

    ReplyDelete