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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New Label

Where to begin?... Today we had Mary's big IEP meeting at school. However, on Tuesday I received a phone call that things may need to change regarding Mary's "label". Apparently, when they started going through all of Mary's scores form the different tests they had given her, the numbers didn't jive. Mary has always had a large gap in her scoring due to her ability to read and comprehend so well, but having difficulty in math, this we knew from the previous evaluations we have had. We did not, nor did the school realize that she would not qualify for the SLD label, which is "Specific Learning Disabled". It doesn't even qualify her for the Intellectual disability. So, of course there is another category we can put her under, OHI, which is "Other Health Initiative". This will state that Mary needs extra services due to her health issues, seizure disorder, anxiety, add, etc. So, could I possibly get the Dr to fill out a form verifying her health issues, before we meet on Thursday? Thankfully, my husband is friends with the Pediatrician, and called his cell phone right away. I did not want to drag this on any longer! By Wednesday, I dropped the form off at school, and they had time to add it all into the IEP.

After going over all the scores, some as high as 97, others as low as 35, all 6 of the school professionals taking part in this meeting all determined that Mary does not have a "learning disability", and it must be the medical issues that are inhibiting her abilities. This, by the way, makes her eligible for even more educational services through the State of Florida! If they see there is a learning disability, that means it can be worked through one way or another. Medical issues on the other hand cannot be retrained. I guess the State of Florida is not so clueless after all. I am perfectly fine with all of this, they can do or say whatever they need to to make sure she gets everything she needs to succeed in school and in life. Along with the speech therapy that she now receives at school, they are requesting, physical and occupational therapy, as well as having a counselor come and work with her, which also happens to include family therapy. Believe me, we can all use some of that around here. None of us know what to do sometimes when it comes to Mary. Oh, and did I mention, it's all at no cost to us? I believe the therapy has to go through our insurance, but hey, it's worth it to have it all done at school, and I don't have to make a million appointments every week.

All of this does not come without some serious decision making on our part. We were somewhat, off the record, given the option to retain her for another year. Mary has made so much progress academically this year, we can keep her in 5th grade for another year to ensure success next year as well. This is a tough one. I would be more than happy to postpone middle school, but she will be 12 years old, and 5'4" in the 5th grade. Or maybe she'll stay 5'1? I don't know how this will affect her, even though she has expressed distress over leaving Kaley after this year. At least if we do keep her back, and then see in the middle of the next school year that she needs to move on, we would have already been in the public school system long enough to qualify for the McKay Scholarship, and we can send her to a private middle school. The public middle school that we are zoned for will still never be an option as far as I'm concerned. As I said, decisions.

Stay tuned, there is more to this. Upon discussing Mary's behavior at home as well as school, all 6, again, agreed that Mary may have Asperger's Syndrome. Along with the school psychologists report, we were given a booklet of questions to answer on Mary's behavior. This was also given to her teachers as well. If all of our numbers agree, guess what? Mary gets the Asperger's label, which in turn, qualifies her for even more! And that's not all folks, the teacher had to call DCF for something Mary told her, which was a total jumbling of events on Mary's part. I'll fill you in tomorrow!