Tuesday, March 2, 2010

What is a diagnosis?

I am probably thinking about this because Shea is coming up on his big "6th" birthday and he will be crunched through a whole battery of new testing to define his needs for his new Elementary school IEP.

I was thinking about a diagnosis and what if they decide to change Shea's. Wondering if it will change how I see his needs. Wondering if it will change our plans. Wondering if it will piss me off again.

I have been nervous about this for a while. Typically, I hate standardized testing and the attempt to pigeon hole a child with some test that someone made up and charged the school big bucks for. In reality, these tests are just a brief little window into how the child is doing that day, at that minute. And, may not even be a very accurate one either. But, it is all we have.

It is understandable that the school needs to put the child is some sort of measurable framework. I get all that. But it still rubs the wrong way.

Although, it is sort of frightening how a person gets used to it over time. Now, I am anxiously looking forward to these tests to just see where Shea lands in with his peers. Looking for some clues on how we should proceed with placement for next year. Hoping for a "good news" that mainstreaming will be the obvious choice yet they will not try to deny him speech services. All of the above.

How things have changed. When Shea went through this at 3, I resented every single standardized test. I resented the pigeon-holing. I resented everything. Obviously, I was in a pretty bad place at the time or I might not have literally cried through that 3 year old IEP meeting.

I felt the tests were superseding what I knew instinctively. I felt the test were given more weight than what I saw and felt. I wondered how a non-verbal child could take a predominantly verbal test. And, yes, I was pissed! Pissed at the world. Pissed that we had to do this. Pissed that my kid was being pigeon-holed and slapped with a pre-determined future. Pissed at myself because surely I must have done something wrong. Pissed at the whole damn show.

So, now looking back. Did I cry through the whole IEP meeting because I was pissed? Probably. But, unfortunately, not as simple to define as that.

Parents who have gone through this know. They know that it is a sometimes toxic emotional stew that we fester in as we get used to the idea that our child has special needs and what the hell that will mean for the future.

Literally; a stew. Anger, fear, guilt, indignation, skepticism, disbelieve, annoyance, anxiety, shame.

I remember sitting there needing a constant supply of kleenex. I could not keep the tears in check. I am not a person who cries often. Sure, I will tear up at movies and books and be overwhelmed with emotion at time but I have never NOT been able to stop crying. I took tissue after tissue and shoved them wadded up, snotty and drenched in my pocket.

Over heated, over-stimulated, hyper-emotional, near panicked with fear; that is why I could not stop crying. So, saying I was pissed is a gross over simplification although not completely untrue.

I won't be like that this time, I know. I have learned so much. I am not sitting in the role as a passive person anymore. Advocacy changes all that. Connecting with other parents and organizations change all that. Seeing that life lessons teach us even when it is sometimes sad, changes all that.

But it hasn't been easy, it never is.


Scattered Mom said...

I just wanted to give you a hug after reading this. It IS hard. But it's also a tool, or "proof" that some people will understand when they try to come up with their own "diagnosis".

I just got the results of a fine motor test Jake did recently. People had been saying that his computer was "just a computer", and that he is too reliant on it.

Then I saw the numbers. My Jake, in fine motor paper and pen tasks, scores in the BOTTOM 1%tile. Even half of the kids in the bottom percentile do better than he does.

This was a bit of a shock because I thought he was around the 18%tile, so...um..WOW!

Now I have proof that it's not "just a computer". It's his life line.

Hang in there. Sometimes it feels like they are sticking your kid in a box but the reality is, it can keep people from sticking him into the wrong box, too.

Shea's Mom said...

Excellent point, cookiejar. Thanks for the pep talk.

Sometimes when the sky is dark and you are in a defensive crouch it always seems to be about how misunderstood the whole thing is. Your are right, testing is a tool. Part of the arsenal.

So, nice to hear from you!


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