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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Crazy People

I saw a crazy lady today in a shopping center parking lot. This woman was walking around, screaming at nobody. I'm not even sure what she was saying. I, like most people I'm sure, grew up seeing people talking to themselves, or just acting strange, and referred to them as crazy people. You see them, you make an innocent comment, or walk by and shake your head, without giving that person another thought. There was a women I saw everyday for three years walking down the same street, every morning, talking to herself. I passed her as I drove Mary to school. My first thought upon seeing her, shamefully enough was, "that could be Mary one day". I also vowed that I would never let her off on her own, without someone to watch over her.

As Mary got older, and became more verbal, we started to see and hear her do certain things that would seem very strange to anyone who didn't know Mary. We have even affectionately called her "crazy pants" at times. Mary spends as much time as she can, standing at the end of our driveway, waiting for people to walk by. Everyone who walks around our neighborhood will stop to chat. Mary knows everybody's dogs name, which children/grandchildren, play what sports, or who is going to this and that college. They all know Mary is special, and everyone is very nice. When there is no one around, Mary talks to herself. If there is something she is upset about, she will stomp around and angrily grumble to herself. Mostly though, if there is music plugged in her ears, she will sing out loud, and dance her little heart out. All by herself, in her own world, off key, clumsily swinging her hips.

Now when I see someone acting strangely in the streets, I no longer shrug them off as a crazy person. I feel sad that maybe they don't have, nor have they ever, had someone to watch over them. Someone to make sure they don't end up in the streets screaming and talking to themselves. I wonder if at one time, they were just a boy or girl in the neighborhood, who danced liked no one was watching.

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Being Different

Today was a big day, it was picture day at school. Mary was very excited about going to school all dressed up. Up until dismissal, Mary had a wonderful day. When I picked her up in the car line, she told me some girls made fun of her. We have been down this road before, sometimes it bothers her, sometimes it doesn't. This time, it really bothered her. Between the tears and the "I'm so ugly" comments, she told me what happened. While in the car line two little girls said her zits made her look ugly. Mary didn't even know these girls, but I suspect she tried to strike up a conversation with them which they were not interested in having. We couldn't get home fast enough. All I wanted to do was hold her tight, and yes, cry with her.

Once I got home and sat down, with this child as big as I am in my lap, I told her to just cry. I did not want to just tell her to brush it off, to ignore it. That's what I always say. This time, I felt like I needed a different approach. Especially when she started saying she wanted to leave that school, everybody is mean, etc, etc. I wish it was that easy. Unfortunately, I told her no matter where she goes, there will always be mean people. I have always tried to beat around the bush with Mary in regards to her differences. I'm done, before I knew it, I told her, "Mary, you are different than other kids". I used her friend in her class as an example. This girl is very different, she actually walks, talks, and looks different. I told Mary that even though she looks like everybody else, she is different. I hate to have to tell my child to stick with her own kind, but what else can I say? If every child was as loving and accepting of other kids as Mary is, then I wouldn't have to. I reminded her of all the people we do know that love and accept her for who she is and how she looks. We know a lot of beautiful people. Friends and family who are beautiful on the inside, which is the most important. I again, explained that people who use ugly words, are ugly inside and out. You know, the usual pep talk.

I never wanted Mary to feel different, and I knew at some point I would have to have a talk with her about her differences. Mary did acknowledge that she understood she is different, and agreed to try to stay with her friends and talk to other kids when she is approached in a friendly way. I think we are still too far off on learning to read social cues for her to be just striking up conversations with random kids. It makes me so sad, and it seems so contradictory to what I have tried to teach all my children. Be nice, have a good heart, treat others how you would like to be treated. We know so many kids that are taught the same things, and are accepting of other kids. Honestly, when I think about it, Mary is not the different one. Mean is different.