Signing Off....

This post has been a long time coming, and will be my last. I have had many opportunities to update you since my last post. Each time, I can't seem to think of anything to say. I feel like each situation I have come across, has not felt like a big deal. This in itself is a big deal, I know.

Mary has been tested and has been officially diagnosed as being Autistic, as well as intellectually disabled. Which means on top of the social issues that come with Autism, she has a very low IQ. There are more than a few descriptions of this, but the politically correct term is "intellectual disability". Still, this is nothing new, it just means we have the paperwork when we need it, for proof that she is entitled to every possible service available in the world, forever and ever.

Mary's new school is a wonderful fit for her. There is horseback riding on Monday, Martial Arts on Tues. and Thurs, which is a self defense/therapy type thing. And, she gets to go to either the YMCA or a local pizza place each week for job skills training. All of which she loves, except maybe for shoveling horse poop at the stables. There is also the opportunity to go to the Special Olympics, play sports, music therapy, occupational therapy, and most of all, 2 behavior therapists on campus, full time.

Every time I thought to post was because of some injustice I felt Mary was subjected to at school. Each time, I thought it through and realized I had a pattern of thinking everybody was out to get her, and nobody understood her but me. With the help of the behaviorists, as well as numerous family members, I began to accept that I have been coddling Mary. When I was told to put her on the same level as my other kids, I began to see things differently. I have always let her get away with certain behaviors, mostly being rude and disrespectful to myself and her siblings, because I thought she didn't understand. I was wrong, and created a monster! The beauty of private school versus public, is that the staff is not afraid to tell you like it is!

So now, things happen, and I just don't stress over them. I think I also got tired of hearing myself complain. Even when I talk to people, I always bring her up in conversation, sometimes I can't stop myself, and know I ramble on about her. I'm trying to stop that. I love Mary, and there will always be something special about her, but aside from a few quirks, she is no different than my other 3 children. There is so much more to my life. It is wonderful, I am so blessed with a wonderful family. My children are happy, healthy and kind to each other. My days are filled more with laughter, than concern or sadness. Blogging was a wonderful outlet for me, it got me through so much. Being able to write about my struggles helped me to see them more clearly, and to realize that it's really not that bad. Maybe I'll start a new blog, something more upbeat, because even still, there is never a dull moment in the Murphy house!

 

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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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Independence Day!

I realize I'm a little late on a post for the 4th of July, but so far it has been a busy summer ! Mary has been going to summer school, so for the most part, all things Mary have been uneventful. We spent one week at the beach, which was wonderful, we didn't do much of anything except, lay on the beach, read, swim, and of course, eat. Mary is always apprehensive when we leave home, it takes her a good couple of days to finally get comfortable in her new surroundings. For those days, I have to literally force her to come down to the beach with us, otherwise she will stay by herself, in front of the television, or computer. After that, I leave her alone, and ultimately, she will come join us on her own.

I don't know what makes me more sad, the fact that the rest of the family is together and she is inside by herself, or the fact that it doesn't bother her. Mary never has that feeling of being left out. When she is off doing her own thing, and we are all together, it just doesn't feel right. I want her to want to be with us. I think I force her to do things with us more for myself than for her. I believe in doing this, and not giving in to her complaints about going somewhere, or doing something, is part of the reason she is as (struggling with a word) "functional", as she is. Mary is a puzzle, and we are the parts that fit perfectly together.

That was June, now let's talk about July! We had a big breakthrough on the 4th of July. Mary had been working herself up for our big annual party. There was going to be lots of people, noise, and of course fireworks. Before the anxiety of fireworks pops up in her mind, there is the anticipation of seeing certain people. The whole social aspect of the day gets her excited. I wish I could say its the kids that come that she gets to hang out with, but no, it's the adults. However, things went a little differently this year. Mary spent the early part of the party as usual, afraid to go outside because of the fireworks, hanging around whatever adults were in the house. After more than a few reminders from me to hang out with the kids, she eventually wandered outside, and even went swimming. I could tell, this was a forced action on Mary's part. There is just a look she gets, I'm sure only I can read, when she is scared, but really trying to fight her way through it. Mary has always been afraid of loud noises, and fireworks are the biggest noise of them all. Especially when she doesn't see where they are coming from. By the time it got dark, and my husband was ready to shoot of his arsenal, I frantically searched for Mary, to make sure she was securely away from the noise. As the bombs were bursting in air, I found her, outside, sitting with her fingers in her ears, and huddled closely to a friend of mine, watching the fireworks! The look on her face was pure terror, and joy, at the same time. Afterwards, we were all jumping for joy at this breakthrough. Mary was so proud of herself, she talked about it for days. Now let's see what happens at the next sporting event, when the buzzers blare.

 

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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!

The Power of Music

I love music. Who doesn't? I can think back to my childhood, to certain songs that made me feel a certain way. Lyrics that made me feel everything from happiness, sadness, confusion, confidence, and even fear. Even today, a song can change my whole outlook on either my day or my life. How in that moment of singing out those lyrics and listening to that beat, you can either instantaniously be uplifted or brought down. For me, this is a wonderful, however short lived, feeling. You turn off the radio, go about your day, and that's that. For Mary, music is everything. Mary is a walking, talking fact machine on music and artists of all genres and decades. Instead of watching cartoons all the time, she watches the cable Music Choice channel. Every decade, every genre. Mary loves it all, and obsessively watches youtube videos of songs with the lyrics flashing on the screen, she wants to know all the words. If she's not doing that, she's plugged into her ipod. How she can know what artist died tragically in a car crash, leaving behind a two year old, but not be able to add 1+1, is beyond me. Believe me, I have tried to get her to listen to all sorts of math songs, and different musical math videos, to no avail. They simply do not have the same affect. I can't imagine how she feels when she can't understand something, but I believe, that when Mary listens to music, she gets that feeling, and to her everything makes sense. It doesn't matter if it is a song with meaning, or a song that just has a funky beat, Mary can make sense of it, and wants to hold onto that feeling all the time. There have been countless studies on how music affects the brain. I have also read about studies that state we all have parts of our brian that we just don't access all the time, and people like Mary are just using the parts we don't. I'm glad her obsession is with music, something that maybe, can help her sort out feelings. I love to hear her sing, especially when she has her earphones in, and can't hear herself. It sounds awful, but it is music to my ears. If you are a fan of early 80's hair bands, click on this link. http://youtu.be/ZoS0DGrovCs This to me, says it all.

My Week with Mary

I am more than a little late with this post. My intention was to write about the week I spent with Mary during my other two's Spring Break. Which, at this point was two weeks ago. Mary had her Spring Break a week and a half earlier than the others, so when their week came, my husband took them to Virginia to visit his family, while I stayed home with Mary. Mary was very excited to have me all to herself for a whole week. I, on the other hand was bracing myself for a week of crazy mood swings. All ready to blog the craziness away. I had a busy week scheduled, appointments, outings, school, one very anticipated concert to see Daughtry. I was sure Mary was going to be off, because that's how she is. Any change in the normal routine, makes her turn into Sybil. Our week came and went. Absolutely nothing crazy happened. Yes, there were a couple of weird things. Mary spent 3 nights sleeping in her brothers bed. That is unusual because Mary will only sleep in her room, she never wants to participate when her siblings all want to gang up in one room for a sleepover of sorts. Also, for some reason, she thought we had to eat out every night. I couldn't argue, why cook for two people? The highlight of the week was the concert. Mary was beyond excited, I couldn't wait either. Just to see her experience being at a concert of that magnitude (to her). I was worried about taking her because I didn't know if the general loudness of it all was going to freak her out. All went well, we had a nice dinner at the Hard Rock, bought her a Daughtry t-shirt, got to our seats early. Once the opening act started, I was freaking out. One thing I never thought about was that there might be strobe lights. Boy were there strobe lights! All I could think was, "what kind of mother takes her epileptic daughter to a light show?!" No, I wasn't that hard on myself, but I was obsessively telling her to close her eyes, look down, turn away from the light! I think I scared her a little, as well as the people sitting around us. I realize the chances of her having a seizure were probably slim, but knowing strobe lights can induce a seizure, had me a little concerned. Instead, Mary had a seizure of a different kind. I can laugh about it now, but at the time I was shaking my head, wondering, what the heck is going on. During the concert, the singer, of both acts, would periodically shake hands with the people in the audience below. We were in the balcony, no way, no how, were we going to have Daughtry come up and say hi. Nor, could he possibly see us waving to him. Try telling that to Mary. She was getting downright pissed. At one point I had to threaten to take her home. Of course that worked for about a minute. Last year we took Mary to see Air Supply at Epcot. In Epcot's amphitheatre, we had seats close to the stage, and the guys did notice her waving and waved back, and would even mimic her arm waving. I guess she expected the same attention. By the end of the night, Sybil was in full swing. I realized that it was late, and the excitement of it all was probably too much for her. Sensory overload in a major way. We couldn't even get through teeth brushing she was so moody. That night she went back to sleeping in her own bed, I'm sure she needed things to get back to normal. So did I!