Saturday, March 31, 2012

Here We Go Again....

So, the general consensus between all Mary's teachers is that she is classic Aspergers. We are still waiting for the official report from the school. When we were told this during her IEP, we said, o.k. whatever. Just make it so we can get as much funding as we can. Mary has always been "on the Autism Spectrum", it states exactly that in all her evaluations, but nobody has ever really committed to it. Then we did the genetic testing, which did not show any abnormal genetic links. Again, we just brushed it off, Mary is just Mary and that's that! Tom and I realized a long time ago that she had an overwhelming abundance of Aspergers symptoms, and left it up to the Dr. and professionals to figure it out. All say, yes, could be, blah, blah, blah.

I recently took Mary to a therapist at the Greater Orlando Psychiatric Society. We were referred to this person because of her reputation working with kids. We were hoping to get her to sort out all these obsessive thoughts about boys, etc. If you remember, we have tried "play therapy" in the past. Didn't work, Mary does not know how to pretend. I went in armed with every evaluation and test that Mary has ever taken. I chatted (cried) with the therapist for the first visit, and went over all things Mary. At this point, she tells me that Mary sounds like an Aspergers child, and she does not have any experience working with children on the Autism Spectrum. Mary needs someone who specializes in that area. I then explain that we haven't had that official diagnosis, and we currently have her enrolled in a social coaching class, and can she please talk with her and see if there is anything she can do.

Mary's visit comes around. Mary did not want to go, insisting to me that her life was not crooked. Whatever, and where she came up with that, I don't know. I told Mary she did not have to talk to her, and I would go in with her and we could explain that this is not what she wants. I figured I owed the woman the courtesy of the second visit. When we get there, Mary jumps up, goes in to talk and tells me she is o.k by herself. I'm extremely nervous, Lord knows what that child will say in there! I'm still afraid of DCF tearing my life apart. After about 30 minutes, Mary comes out, I go in. Judging by the look on this woman's face, I can tell it was an interesting conversation, one in which Mary dominated with all sorts of mixed up topics. Diagnosis?" Why in the world has this child not been tested for Aspergers?" After reading all her evaluations and tests, it clearly states all the symptoms, but nobody seems to want to commit to giving her that "label", "and if I were you, I would insist on getting her tested". Hello, I thought that's what we were doing!

We won't be going back to therapy. Mary does not need, nor can she respond to regular talk therapy. Mary needs exactly what we are giving her. Social skills training, and finding a school that specializes in kids on the spectrum. Of course, there is a Dr. in the area that does specialize in Autism and all it's accompanying disorders. It figures, it was someone her neurologist recommended when we had her first psychological evaluation. Unfortunately, this particular doctor didn't accept our insurance. We did not want to spend thousands, yes, thousands of dollars for testing for something we already knew, so we went with a Dr. in our network. What did this Dr say? Further testing needed to rule out Autism Spectrum Disorder. This was the point where we gave up, and said no more testing. As luck would have it, the Dr we were originally referred to now takes our insurance. I am going to call them and pray that he can see her and look at all the other tests we have had, maybe talk to her, and finally have someone tell us, "yes, your daughter has Aspergers Syndrome, you can go out and get a ribbon for your car now".

It's funny how when things are all jumbled and confusing, and I feel like I'm drowning in a sea of unknowns, I can say, it doesn't matter, I don't need a "label" for Mary. But I do. I so desperately need to have a reason for all her differences. I know that if I can say she has this or that, then I can relinquish all control over having to feel like I need to "fix" it. Sorry, not my fault, it's the disorder. I know all the psychology behind my thinking, and all the therapy in the world can't undo everything dysfunctional in my head. I am just thankful that I can acknowledge it. So, I will continue to do all I can, and even if I do get that Aspergers diagnosis, I know my journey will not end, but I do feel like it will put an end to trying to find a diagnosis. And no, I will not be putting a ribbon on my car.


Sandy Nawrot said...

No, no ribbons. And while labels are not the answer to everything, it can really assist I think when you need funding and specified help. It is hard to find a doctor to work with when there is no label to direct you to the area of expertise. So I REALLY hope this bird helps you get some answers.

I would love to have been a fly on the wall in that office!

Zibilee said...

I know just what you mean about your need to have a specific diagnosis, and it sounds like it has been an incredibly hard and repetitive journey for you actually find one. I wish you a lot of luck with the new doctor, and in finally getting a diagnosis. The label won't change anything, but it may go a long way in how you feel. Good luck, my friend.