Autism

I don't even know where to begin. I mentioned in a previous post I'm sure, that there was a Neuropsychologist who specializes in Autism Spectrum Disorder, that came highly recommended by one of Mary's doctors as well as more than a few school officials. We made an attempt to see him a few years ago, but he did not accept our insurance. Not wanting to spend thousands of dollars on testing, we went to someone under our insurance. The woman did not have it together, but did state further testing needed to be done to rule out Autism. Not wanting to subject Mary to more testing we were sure would result in a negative on the Autism, we moved on.

Then, we had that super genetic test that was available to us at no charge, to rule out Autism. It did, there was no genetic indication that Mary was Autistic. Great, Mary is a puzzle, we love her just the way she is, and we move on.

Mary starts 5th grade in Public School. During her IEP testing, the teachers are confused, numbers don't add up, Mary does not qualify for "Specific Learning Disabled". Let's go with "Other Health Impaired". Mary's seizure disorder qualifies her, and the teachers know she needs all the help she can get. During the first IEP meeting, the teachers all say it sounds like Mary has got Aspergers. O.k., lets answer some questions in a booklet, compare notes with the teachers, and bingo, we have an Aspergers diagnosis. Mary's pediatrician says no, but we'll take it, if it gets her help. Mary had a language delay, so although she has many characteristics of Aspergers, the language delay, takes her out of that category. We did however make an appointment with the expert Neuropsychologist, who now accepts our insurance.

Mary starts 6th grade at The Paragon School. I can't even begin to tell you what a perfect fit this seems to be. I was in tears just observing the behavior of the kids that attend the school. It was like a whole bunch of Marys. Still, I have my guard up, I've been here before, I know I have to give it time. Paragon is a school for "high functioning" Autism, Aspergers, etc. All that the school offers is wonderful. Mary has horse therapy on Mondays, will learn what it takes to own and operate a business, Martial Arts, music therapy, social skills, and more.

Mary had an appointment scheduled with the neuropsych Dr the first week of school. I was hesitant to keep this appointment, at this point I don't want to take her out of school early, only to hear the same thing I have heard for years. I even talked to the principal to ask if it will make any difference whether or not she has an official Autism, or Aspergers diagnosis. Of course not, as far as the school is concerned, Mary belongs there. It may however help her get services further into the future. Who knows what she may need as she gets older. So, I take her to see the expert.

In less than an hour of simple question and answers, for both Mary and myself, the Dr starts talking about Autism. I say, but what about Aspergers, no, no Aspergers, language delay rules that out. What about intellectual disability, low IQ, social behavior, seizures, blah, blah, blah. Of course all these things go hand in hand with Autism. High Functioning Autism. There you have it. Since we have a three year old neuropsychological evaluation, he can do one test for Autism to include with the info we already have, or we can start at the beginning, and fully test her again. One hour of testing or 7 hours of testing? The full test of course will be better, because of it being current, etc. Either way, the Dr is sure of the outcome because he sees these kids everyday, so he is leaving the testing decision up to us.

Just when you think you've got it all figured out, bam! Is this ever going to end? I have always been a firm believer in things happening when, where, and how they are supposed to. I can't figure this one out. I could have used this information not only years ago, but as little as 6 months ago. It would have saved me a whole lot of stress, and heartache. We have always been told Mary is a puzzle, nobody could quite figure her out. Did no one connect the Autism symbol of puzzle pieces and Mary? Is this doctor really the one to finally figure her out? Will I ever be comfortable saying Mary is Autistic? Is this the end of "Diagnosing Mary"? Someone mentioned changing my blog to "Celebrating Mary". I have been giving that some serious thought. Stay tuned....

 

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Survivor

Well, we made it. School is officially done for Mary. As of Thursday, Mary "graduated" from Elementary school and is headed to Middle School. Almost. Instead of holding a ceremony, the fifth grade class had a big "Survivor" themed party. Complete with challenges, contests, and of course, cupcakes. What an ironic theme for me. My first thought as we got down to the last few days, was "wow, I survived!" This year has been full of challenges for both Mary and myself. Mary, I believe, is the clear winner. I would have been voted off the island a long time ago. These last couple of days, I have been reflecting on our Public School experience, and although I have more than my fair share of complaints, I can think of a few positive aspects as well. For one thing, Mary has been "officially" labeled as being on the Autism Spectrum, meaning, we have a diagnosis of Aspergers Syndrome. This is supposed to give us the highest scholarship funding. We are still waiting for that to be updated. Either way, she is going to a private school, and we will pay whatever difference. Another thing that has been validated for me is Mary's ability to learn. I was struggling with what type of school would be best for Mary. Do we put her somewhere she can get just the basics of daily life, somewhere less stressful, easy, or challenge her academically? Clearly, she needs the challenge. I now know, I cannot short change her. It doesn't matter what they say about IQ scores, I believe, if a person is unable to effectively communicate either verbally or in writing, than that score can be different. Do I think she is a rocket scientist? No, but I do believe there is more there. There has always been a huge gap in her test scores, which has made a diagnosis difficult. I believe, that this is the area in which has yet to be discovered. Mary is going to surprise us all one day. It's going to all click for us one day, Mary, of course would have known all along.


 As I stated, Mary is almost headed to Middle School. After a few short days off, Mary will be headed to Summer School, at Kaley Elementary. Mary, of course, qualifies for the extended school year program. This is wonderful. I struggle every summer with keeping her busy. I also try to keep her academics up, which, she adamantly says no to, every summer. Now, I get to send her to school, to the teacher she loves, with no test, or homework pressure, and she will continue to hone her skills. Oh, and there is breakfast and lunch involved. And it's all free! Gotta love that. We do have Friday's off, so I am going to try to make those days fun for her. That will be a whole other post. Stay tuned!

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.