Saturday, March 31, 2012

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.

Friday, March 2, 2012


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.........

Thursday, March 1, 2012

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!