Thursday, November 29, 2012
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!
Saturday, August 25, 2012
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....
Sunday, August 5, 2012
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.
Sunday, July 15, 2012
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.
Friday, June 8, 2012
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!
Saturday, May 5, 2012
Sunday, April 29, 2012
Wednesday, April 11, 2012
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.
Saturday, March 31, 2012
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.
Friday, March 2, 2012
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.........
Thursday, March 1, 2012
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!
Thursday, February 23, 2012
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.
Wednesday, January 11, 2012
Things have been kind of emotional around here for the past several days. My Mom was involved in a head on collision, that has left her unable to walk due to both her ankles being broken. I have been running around, trying to take care of as much as possible, so we can get her to an acceptable rehabilitation facility. This has been somewhat of difficult task, due to insurance and all that kind of stuff. Needless to say, dinners around here have been unappetizing to say the least. Pair that with Mommy not being her usual chipper self, and the children start to take notice. Poor Mary is thrown all off, she knows she should feel bad for Grandma and go with it, but the disruption to her regular routine has made her a bit cranky.
My two older children also know Mommy is off, and they too, don't know exactly how to deal with it. So, they do what they do best, get goofy. Goofy, giggling, talking about silly things they did when they were little. Singing old Barney and Wiggles songs. Mary doesn't know if she wants to be mad at them for making so much noise, or laugh along with them. So she sits quietly. When the other two run upstairs to continue their antics, Mary looks at me, with a frown on her face and tears welling up in her eyes. This is what she says to me. "Mommy, I want to go back to the future (past) and be little again. I want to take back the memories of being little. I want to be a little girl again. I look at pictures of me as a little girl and wish I could have fun like that again. I want the memories back." Now I'm tearing up, and explaining to her that even though she is a big girl now, (11?) she can still have fun. "Look at Daddy, he's a grown man who still plays with video games and Legos, now please get off my lap, as you are crushing my legs." This made her giggle, and she went on as if she didn't have a care in the world.
That's what I love most about Mary, she has her moments of sadness, then quickly gets over them. I know she keeps them inside, but does not dwell on them, only brings them out when she needs help in dealing with certain situations. This little episode, will be mentioned by Mary either a week, month, or years from now. It amazes me what she retains. After about 10 minutes, she looks at me, tells me she is going to go upstairs to see what the kids are doing. "I want to bring back the memories", she says. Listening to the chaos ensue, I now have a smile on my face again.
Thursday, January 5, 2012
I like to think my call did however, put them into action, because I did get an email this morning from the school psychologist stating all was o.k. with the hearing test, and Dr.'s note, and she will begin testing Mary tomorrow. Hooray! If that wasn't enough to make my day, the call from the placement coordinator person at school did. They are going to try to get Mary qualified for an "Alternate Assessment", which means she would not have to take the FCAT. Whoopee! This Alternate Assessment has never been done at Kaley, and is apparently very difficult to get approved. Of course, Mary would be the one. I guess someone finally realized that we we were not making up the fact that she is "intellectually disabled", or "cognitively disabled", some fancy new terms I learned. So, I'm not really sure what my lesson was here, maybe not be so hostile in my inquiries, so I don't look so stupid? But then again, if I hadn't been such a pain, would they have still been dragging their feet? Who knows? Not sure I even care, as long as what needs to be done, gets done.