Saturday, August 25, 2012


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....


1 comment:

Zibilee said...

Oh man, what a confusing set of events! It seems like everyone is contradicting each other, and that leaves you skeptical of everyone that you see, which is totally understandable. I think it's easy for a doctor to say that she is this or that, but as a parent, you know a little more. After all, you spend the most time with her. I am going through some stuff with my daughter as well, and am not getting any answers that seem to fit either. It's frustrating, and the things they are telling me don't always add up. I can understand you just wanting to know for sure what is wrong with her, and it seems like everyone has a different answer. It's been a long journey for you. I hope that something comes from it soon.