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!

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.

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.

DCF

O.k., I needed a day to try to figure out how to explain this one. As to avoid sensationalism in my post, I will start with what actually happened, then give you the version Mary told her teacher.

My husband and his business partner Rich, have a couple of rental units in the area. There is one 3 blocks away from Mary's school, on Grant St. Tom sent me a message the other day telling me he was on Grant St with Rich, and did I want to bring Mary by to say hello. Every morning Mary asks Tom where he is going, if he says "Grant St", she asks about Rich. Rich attended Mary's school some 40 years ago, and Mary thinks that is the coolest thing ever. It's been a while since she has seen him, so Tom thought it would be nice for us to stop by. So, we did. When I told Mary where we were going she was very happy, I was worried, because she has a tendency to carry on and on about someone or some things. I asked her to try to contain herself. Well, as soon as we pulled up, Tom and Rich were both in the front yard. Mary and I got out of the car and Mary very enthusiastically ran over jumped up and wrapped her arms and legs around Rich and said hello. Mary is probably just about as tall as Rich, so as you can imagine, this was an awkward move on her part. It was not proportionate to anything that might look inappropriate. We continued our hellos, chatted a bit, all in the front yard of the house. When we got home, I did casually mention to Mary that she should not have jumped up on him like she did. Bet you know where I'm going with this.....

Before our IEP meeting was over, Mary's teacher asked Tom and I to stay for a private conference, which also included the psychologist and another school official. I wasn't concerned until she said she also need the school resource officer to join in. Now I'm concerned. Mary told another student she wrapped her legs around a man named Rich. Teacher gets involved, asks Mary where did this happen, Mary says the house on Grant St. Teacher asks "Where was Dad", Mary says "working". "Where was Mom?", Mary says, "in the car". "Did this make you uncomfortable?" Mary, "yes". I know she said yes because that's what she thought she was supposed to say. I really feel for Mary's teacher, she knows Mary's issues, especially with her preoccupation with boys, and her tendency to not be able to re-tell events as they happened. So, I know this was a difficult thing for her to do, but she said she was obligated to call DCF. DCF referred her to Orlando Police. Now, I'm really freaking out, Tom is a bright shade of red I don't think I have seen him in before. Fortunately for us, the resource officer is there on Thursdays, and rather than call the police, the teacher went to the resource officer so she (she, another plus) could hear our version. Mary's teacher really didn't want to do this. I know it was an awful position for her to be in. I can't blame her, these days you never know, and I would want someone looking out for my children. After telling the story the way it actually happened, everyone in the room agreed that this is typical in children with Mary's disabilities. Great, what happens when someone is innocently arrested! I guess they have ways of knowing things.

You know, it took about three seconds for me to imagine all kinds of horrifying scenarios of my family being ripped apart because of all this. Thankfully, nothing was ever reported. DCF passed it off to Orlando Police, and the resource officer was sympathetic, and believed our version of events. Especially since she has a child with a seizure disorder and ADHD as well as behavior issues, and our kids see the same neurologist. After all of this, we brought Mary in, of course she was a wreck, thinking she was in trouble. We explained to her that what she did was not wrong, it was the re-telling of events that were the problem. We discussed strategies, etc. Of course counseling will be helpful, blah, blah. All is good in the end, for now.
When I think about it, I'm sure that my comment to her about jumping up on him is what made her think it was wrong, resulting in her talking about it. Otherwise, she just would have gone on about seeing him, and not how she said hello.
Just when I think I have seen, heard, and experienced it all.........

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!

Fred

So far, this new year is not turning out so happy. It seems that this is not only happening to me. I know more than a few people who have had a crappy start to 2012. For me, it started with my Mom's car accident, and it continues, with my Mom's accident..... Then we had to say goodbye to our dog Fred. Fred has been with us for 14 years, and as I type this I realize why it has taken me this long to blog about it. It's been almost 4 weeks, and I can think about him without crying, but writing it down and really thinking about it, still, brings me to tears. He was old and tired, we have been through many trips to the vet where we thought it was his last, this time, we had to say goodbye. I feel like I have been in a fog these last few weeks. It's like those first few days when the kids are out of school for the summer, or when they go back after being out for the summer. It takes me a few days to get back into a routine. My life has not been altered in a physical sense by Fred's absence, but I do have that feeling of not knowing what to do with myself. I know all that is happening with my mother has something to do with it as well. Mom's at home now, my brother is there with her, I am not really affected by it in a physical sense. I'm not feeling sorry for myself, nor am I moping around depressed. I can't quite put my finger on it, I'm just going through the motions of the day. I really just want to slap myself out of it. Yesterday was the beginning of Lent, guess I just figured out what I need to focus on to get back to my old self. On that note.......

This blog is about Mary, so, how has Mary taken Fred's passing? Well, devastated, as we all were at first. Then she went to wanting another dog, as everyone, but myself is wanting. Mary was able to recognize that she had an emotion she has never had before, saying "I've never had this feeling before". Wonderful that she can recognize that in herself. This morning she woke up, saying, "I can still hear his collar making noise", as she has stated here and there over the last few weeks. Mary has a wonderful ability to get over things quickly and to forget easily. I don't think she will ever forget Fred, and that is something I don't ever want her to forget. None of us will.