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.

Tear Jerker

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.

Ooops!

Boy don't I feel silly. Actually, horribly embarrassed is more like it. You know how I have been ranting and raving about getting Mary's IEP done, well I decided to give them until yesterday before I called and started complaining. Which I did. I asked when, where, and exactly how long it was going to take, because I can't do anything without it! I can't even look into middle schools without the school knowing what her educational needs are. I was so prepared, had all my ammo ready. Then the voice on the other line said, "you have an IEP". Huh? Apparently, the last meeting we had at the school, with all those teachers, school nurse, psychologist, etc.. Well, the nice stack of papers I signed and took home with me clearly say IEP at the top. Honestly, in my defense, my husband was with me and he didn't even know. Those freakin' meetings can be so confusing! Plus, they did say that they wanted her to be evaluated by the school psychologist and update her needs and all that. Which we took to believe was what we needed for a complete IEP. Guess not, because I went ahead and faxed what I had to the charter school at UCP so I can start somewhere with the process of finding her a middle school.

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.

Can you hear me now?....

Update on Mary's hearing. Turns out, there is nothing to worry about. Thank you Jesus! We went to see her ENT, he looked at the schools report, checked her ears, and basically shrugged his shoulders. There is a tiny hole (again!) in her right ear, which he is not worried about, and an infection forming in her left ear. He is actually more worried about her left ear, just because of the amount of puss and wax he sucked out. Yuck.

As far as the right ear, she will never have a normal reading due to the surgery she had to repair the first hole. We will just watch this new hole for now. I guess what her pediatrician was seeing as water in her left ear was actually puss, indicating infection. So we have been doing drops, if it doesn't clear, we have to go back to the ear surgeon to see what he says. Apparently he has more sophisticated toys in his office. As for the school! The doctor looked over their report and didn't feel that their readings were of any concern. Of course considering all she has going on in both ears. He did however, feel that maybe they were just trying to cover their butts, and agreed to writing a letter telling them he is ok with her hearing, and he will take over from here.

I went right over to the school after seeing the doctor, figuring it will all be over. Of course, they seemed reluctant to just stop testing her, until I got a little more than aggravated and told them under no circumstances are they to test her hearing, ever again. "O.k., we will clear it with so and so,"etc.. That was the  Audiology department. I gave them the doctors name, phone number, fax, whatever they needed. I got a call from the school guidance counselor on Friday, she was wondering what was going on. Apparently the Audiology dept didn't tell her. Back to being aggravated. Nobody did anything after I talked to them, so I had to call the doctors office and tell them to fax the letter. I will give it until Wednesday, and make sure we are all clear. These little "bumps" throw me all out of wack. To top it all off, I broke a tooth, my fourteen year old is causing me grief, my son is doing terrible in one of his classes, and my husband is being cheap with me on my Christmas shopping! Everything always happens at the same time. I can't figure out if that's a good thing, or a bad thing. Take it all slowly, or get it over with all at the same time. Thank God there are more "smooth" days in my life!

Testing, testing.....

Tests, I truly hate that word. We have the results of Mary's genetic testing. As suspected, everything is normal. There is no genetic abnormality in Mary's DNA. That is good news, and it only means we are in the same position we were before. My biggest hope for some kind of a result was to ensure Mary receives every possible accommodation for her education and overall well being. I had to laugh, because my first thought on this whole thing was how I was glad we didn't have to pay for the testing! Believe me, I have come a long way! But, have no fear, we have other testing issues. It's always something!

 When Mary was 6 years old, she had surgery to repair a hole in her right eardrum. This however, has not seemed to be a problem over the years. Until now of course. Mary's school happens to be home to the Orange County Audiology Dept? So, in Sept. they tested Mary's hearing. She failed. We went to the Dr., he didn't see anything wrong, gave her ear drops just in case. October, retested, failed. Now I'm getting angry, because until she can pass the hearing test, her IEP is being delayed. The school psychologist won't even talk to her until she passes. We cannot apply for the McKay Scholarship without an updated IEP. I'm running out of time, the deadline is February. I was insistent that she was not passing the tests because of her inability to answer the questions correctly. Today, I went with Mary to the Audiology Dept, where they measured her hearing with a device, as well as having her answer questions regarding what she can hear. Not only is there an indication that she could have another, or the same, hole in her right ear, but there seems to be some partial hearing loss in her left ear as well. Okaaaaay!

I learned a lot about how our hearing works today. Apparently, Mary seems to be losing high frequency sounds. While she may be able to hear part of a word, she might be missing the ending or beginning sound. Naturally, this would affect her ability to learn in a classroom setting, and would of course, require a whole different set of accommodations. Lovely. Once again, we begin another journey. A journey into the world of tests and more tests. Of phone calls, and appointments. In the meantime, I have to look forward to trying to either make sure it can all be taken care of before February, so I can apply for that stupid scholarship, or I have to make countless phone calls to try to get around the cutoff date. What kills me is this, if I would have checked off the little box that said  "no", to agreeing to have Mary's hearing tested in the beginning of the year, I would already have an IEP. Of course I can't regret saying "yes", because if there is something wrong with her hearing, it would have only gotten worse if left untreated. Once again, Mary's angels are looking out for her. Now if only they could make a few phone calls!

Home School?

Home schooling. This is something that has crossed my mind, and immediately went out of my mind. I could never do it. I don't have the patience, and Mary needs to interact with other kids. Besides, she would not want me to be her teacher, she knows that's not the way it's supposed to be. School is where it's at, for Mary.

I am becoming increasingly frustrated with Mary's school. As I was complaining last night, my son said, "Why don't you just home school her?". No thank you. However, it got me thinking. Will I ever be happy with any school Mary attends? Will there ever be a teacher that teaches her the way I think she should be taught? Does my being her mom, trump a college eductated, experienced, special education teacher? What is my main goal here? Am I getting upset because I just want her to be happy, all the time? I suppose that is the truth. I don't ever want her to struggle, or be unhappy with an assignment she has to do. I also want the teachers to always be happy with her. I am living in fantasy land.

I will not go into every little detail about what is bothering me, because I am doubting my reasoning at this point. I am starting to take a step back, and look at myself, my actions, and how much I codddle Mary. Only because I am starting to see some behaviors in her that indicate she just may be taking advantage of my coddleness. (Pretty sure that is not a word). Anyway, I am trying to figure out at what point, and to what degree, do I start making Mary accountable for her actions. Like forgetting to do a homework assignment. I insist if it isn't written down, she will forget, as I told her teacher. Her teacher beleives she does have the ability to remember, as she has demonstrated in the past. See my dilemma? This is a scary realization for me, becaue it means I can't keep Mary happy all the time. I need to start coming up with consequences. It is so much easier with my other children. Mary gets away with murder! I have had this realization in the past, but on a smaller scale. Now, I need to step back and let her accept consequences from other people, like her teachers, without me getting angry at them for doing what they think is right for her.

My first reaction was to start looking for a different school. I don't want to be one of those parents who is constantly complaining, and moving my poor child from school to school, just to make me happy. Fortunately for me, next year is middle school. Which means a new school for Mary. Until then, I will stick it out, work it all out in my head, and help Mary adjust to the changes. Still, I will not entertain any thoughts of home schooling.

What a week!

All I could think about since Mary's seizure on Monday, was how much I have grown since her first seizure 9 years ago. I am no longer panic stricken every time I look at her, I feel fine having her out of my sight. I honestly am not worried. If it happens again, it happens. I know now that there is nothing I can do about it. However, I am still a little leery about being too far from home during the day, home is close to school.

I have been through so much in the last several years. I truly believe that all the suffering I have had with my own health issues, has helped me. I have always believed that everything happens for a reason. Could it be that I got sick, just so I would be able to handle Mary's issues without fear and panic? I realize I could have been a lot worse off, and there are people with much worse health conditions. For me, what I went through was extremely traumatic. I was not near death, but it did make me think about death. I realized I have no control over anything, and all I do is worry myself sick. Not anymore, if I get sick, or my kids get sick, there is nothing I can do about it, except pray and ask God for strength. Granted, my initial reaction will always be panic, but the panic now goes away. After Mary's first seizure, I had my body in panic mode all the time, for years. Always waiting for that next seizure. After my last major surgery, I finally got rid of the baby monitor by my bed. I was holding onto "what if she has a seizure during the night and I don't hear her". I know all those years of worrying contributed to my health issues. You can do the research, stress causes inflammation. Inflammatory bowel disease, coincidence, I don't think so. I do believe some people are more susceptible to certain illnesses, me being one of them, but I also believe how you handle them makes a big difference. Maybe had I not been such a worry wort, I could have held onto a few more organs. Who knows?

So, the thought of the baby monitor crossed my mind on Monday night, and I thought, "nah, it will happen when it happens whether I'm with her 24 hours or not". This seizure happened at school, the school nurse was right next door, so the teacher (a first for her) was not alone. I just got home from the grocery store, and was there in minutes, as well as my husband being close by. What really goes through my mind is how she went down, literally. When I picture it in my head, I know that there are angels close by, making sure everything is o.k. Mary did not fall on the floor, she was standing, but there were two chairs by her side, the teacher was able to get to her as she slid down to the chairs, and carefully placed her on the floor. Mary's first seizure was in my arms. I know with much certainty, that it will all be o.k. I will not worry myself sick. Even when things seem to be at their worst, and I believe, I have been there. Maybe not my last time, but I know I will get through whatever else might be in store for me. A bottle of wine also helps!

As I started this post, I was wondering why I am sitting here not knowing what to do with myself. I realized its because Mary had her braces put on yesterday, and is a bit uncomfortable. I told the teacher to call me if she wanted to come home. Of course Mary wanted to go to school today to show all her friends. I also realize that my worries now are of the normal variety, I can let them go, and not let them eat me alive. Oh to have so many revelations in one week, it's exhausting!

Halloween 2011

The second scariest day of my life. After nine years, I cannot remember the day or month, but very clear in my head are the feelings. Mary had her first seizure when she was 2, her second on Halloween 2011. This date, I believe, will stick in my head.

Mary had a grand mal seizure during class yesterday. I had just returned from the grocery store, and was busy trying to get my house in order after being away for a few days. Someone from the school called me from her cell phone, to tell me Mary was having a seizure "right now". My heart fell into my stomach. I dropped the phone and jumped in my car, and was there in 3 minutes. Thank God I was home and we live so close. When I arrived, Mary was not seizing, but she was in a dazed state, which is typical afterwards. My entire body was shaking, my heart was pounding, my brain was zooming. Then I saw Mary, I got down on the floor with her and all those feelings left. I was calm, my Mom mode stepped in, and all I wanted to do was hold her, touch her, just be with her.

911 was called, and arrived shortly after I did. When my husband arrived, I was so thankful, he is always level headed and can think straight, even when he is clearly worried. I knew we probably didn't need to go to the hospital, and was surprised at myself for questioning the paramedics. They of course, highly recommended we go of course. If we took her home and she had another one, there could be complications, blah, blah, blah. Of course for the school, it is also a concern. Everybody is afraid of lawsuits, and it is so sad that it has to be that way. At this point Mary is alert and very scared, and very exhausted. Thankfully the fatigue helped keep her calm. They let me ride in the ambulance with her, and we were at the hospital in minutes.

We were in a room and within minutes, the first person to come in was the business person, looking for our insurance card, and ready to collect our copay of $250. Nice. Mary was checked over by 2 Dr.'s. Nothing was done, since she is already being treated for a seizure disorder, they saw no need to do blood work and all that. Thank God! We were out of there by 2:30. Halloween was on again! Mary was going to be "cool" Sandy from Grease.

We don't know what or why she had the seizure, it's been 9 years. A few weeks ago, we increased Mary's medication for her OCD and anxiety. One of the side effects is seizures, I knew this, so does the doctor, but the chances seemed to be slim. I suspect the increase was too much for her, so we will be tapering off and stopping that immediately. I don't care what the dr says. This medicine is not making such a huge difference that I want to ever experience this again. Of course I don't know if this is the cause, but why chance it? The neurologist is going to increase her seizure meds. Fine, the more the better.

I spent the rest of the day like everything was normal, I held it together through the day and into the evening. For some reason, I thought consuming an entire bottle of wine throughout the evening was a good idea. It was happy trick or treating time. By the time it was all over, and everyone was cleaned up and put to bed, I broke. I would not recommend ending a particularly stressful day polishing off an entire bottle of wine. I was a babbling lunatic. I guess it all just got to me. All of a sudden I'm replaying the events of the day over and over in my head. I knew there was a possibility of this happening, but after so long, just kind of forgot about it.

This morning, everything is back to normal. Mary was anxious to get back to school to let her friends know she is alright. When I had to go back to get my car at school yesterday, it was dismissal time. I stopped inside to let everybody know she was fine. Mary's friends all came up to her, gave her a hug and asked her if she was o.k. I know it was a scary thing for the kids to see. Even the boy she was having problems with asked her if she was o.k. This morning all she did was talk about how worried everybody must be. That's my Mary, in a rush to get to school to reassure everyone. Plus, I think she like the attention.

Separation Anxiety

I have been bugging my husband to take me on a trip, one that he has planned himself, that doesn't involve visiting family, or going anywhere we have already been. I particularly wanted to see the coast of Maine in the Fall. Well, I got my wish, we leave in the morning for 4 days in Maine. I am so excited, so why have I been tossing and turning the last few nights? That's right, Mary. Mary has been exhibiting a bit of anxiety, knowing we are going to be gone, which she usually does. I also have a little anxiety over leaving her. For some reason, this time feels different. It actually feels like a physical pain, almost to a point that I don't want to leave her. Honestly, as much as I want to go, if for some reason our trip had to be cancelled, I would be o.k with it.

I think it's because I feel like there is so much going on right now. Mary does not have school on Friday, so I know I don't have anything to worry there. We have just started a whole new acne regimen, one I am really hoping works. We saw a new dermatologist, and he immediately said she needed antibiotics. So with that, a new topical treatment and face wash, we've got quite the routine. It's funny how all the testing, medically, academically, and socially, I know not to get hopeful, and feel like I can take any result. This however, has got me really hopeful. I want her face to clear so badly. Maybe I'm afraid it's going to clear up while I'm gone and I'm going to miss it? Nah, I don't think so, although it would be nice, I don't think it works that quickly.

I always miss Mary when I am away from her. I can't remember the last time I felt like I needed a break from her, although I know we both need a break from each other every now and then. When she was little, my husband and I would take turns doing for her, since she has developed, it's just been me for a long time now. Sure there are still things he can help with, but I just do automatically, and so does Mary. I also am the one with the patience. I have never been a patient person, but with Mary, I am. Leaving this time makes me feel like a piece of me will be missing.
I am not expecting much sleep tonight either, hopefully I can catch some z's on the plane. Mary will miss me, but as long as she knows I will bring her home something, she will be alright.

Back to Normal

So, it looks like everything at school is calm for now. I did receive a phone call last week from Mary's teacher, however this time, Mary instigated the confrontation. Mary walked past the boy who was calling her names and gave him a look, and a shrug of the shoulders. I know this look perfectly, we get it all the time when Mary is not happy with us. Hopefully, she has learned her lesson, to just stay away! Mary may not like being teased, but she also lacks a certain bit of fear. I don't want her to be afraid of anyone, but I also don't want her provoking anyone either.

On to the medical front. A week ago, we went for Mary's 3 month checkup. We increased the medicine that is supposed to help her with her anxiety and OCD. So far, so good. Since then, she hasn't been obsessively hanging out in the driveway, waiting for her boys to walk by. Hopefully this is not replaced by some other habit. Anyway, on this particular visit, the Dr had just been visited by a representative from a company called Linegean. They do genetic testing for Autism, Intellectual disabilities, etc. This is a $5,000 test, they were offering to him for patients at no charge to them as long as they had private insurance. Whatever the insurance doesn't pay, the patient will not be charged. Good until Oct. 31. So, the Dr offered it to us, a blood test, as opposed to more academic style testing. We jumped on it! Mary was not happy about giving her blood, but we made it through.

This test may not prove anything, as is the case most of the time when it comes to Mary. When we get the results in about three weeks, we will be assigned a genetic counselor who will help us understand what having or not having certain genetic traits will mean for Mary. It will also give us the opportunity to take all the guess work out of all the tests she has taken in the past. Mary is not a good test taker, which is why she has been called an enigma by her teachers. Also, it will determine exactly what services she needs to ensure her success in school and life in general.
I am a little bit anxious to see where this all leads, but not expecting much. I have learned my lesson a long time ago, there is no magic cure. We love and accept Mary just the way she is. I only want to make sure she gets everything she needs and thankful to have the opportunity to give her that chance.

The Honeymoon is Over

Well, I don't even know where to start. Life has been so busy here lately, the thought of sitting down to write seemed to take up too much time. Now, I am at my wits end, I have suppressed entirely too much emotion. I should have been blogging this whole time. It seems when things are going good, I just don't want to sit and write about it. Then, when things aren't so great, I go through a sort of denial process. Ultimately, when things seem to be at their worst, everything seems to surface, and I blow. Today, I blew. In the form of a phone call to Mary's school. With Mary in the car. I was still on the phone when I picked my other two up from their school, (A no-no in the carline). Where, after I hung up, I proceeded to bawl my eyes out. In front of my kids.

School for Mary has been going great. There were a couple of times where she mentioned some kid or the other teasing or just not being nice to her. Nothing too too bad. Then, the math homework coming home was becoming ridiculous. That school, and every teacher involved in Mary's education has been made aware of Mary's math disability. I understand they are still going to give her math, etc.. But this was way too much for her. I was spending over an hour with her, on simple addition. So, I send the teacher an email. Ok, teacher calls me and let's me know that by law, she has to expose Mary to the same math as the general 5th graders, but she won't sent anymore of it home for homework. Great, I'm happy, then she hits me with, "you know, Mary has to take the FCAT, same as all the other students." What??!!!! You have got to be kidding me!. What kind of goofy system sets a child up to take a test they are going to fail? All I can say is, no wonder we read about these stupid tests in the paper everyday. The poor teachers don't think it's right but they have to do it, and then, they, and the school, gets graded on it.
So, now I know Mary is really stressing at school because she has to do this, and, they have been taking mini tests, which she fails.

So, I tell myself, not my problem, we will stick it out for the year, get her right back into a private school next year. I now don't feel guilty using the public school system just to get the scholarship funding from the State of Florida. They deserve to be used! Got past that, then......

Mary's complaints of teasing in the classroom are becoming more frequent. One day last week, she completely broke down when I picked her up and said some boy called her a bitch. Then, someone else threw an eraser at her head. Did she tell the teacher? Yes, she says, they got in trouble. Ok, I'm only halfway boiling. This is happening while she is with the general 5th grade class for science. Why, I have asked, does she need to be included with the regular kids for Science? Because, they say, it's the law. All of the special ed students have to spend so many hours a day being "included" in "regular" activities, as opposed to "special". Sorry for all the quotes, Its my sarcastic interpretation.

When I pick Mary up today, she tells me this boy pushed her. That did it. I think I stopped the car in the middle of traffic, had to compose myself before I could think logically. Tried to calm down, called the school. Carried on like a crazy women. I don't care what the law says, I'm her mother, I don't want her included with anyone other than the kids in her "special" class. I am sure Mary did or said something that may have seemed odd or offensive to this boy, but he did not have the right to push her. Mary does not know how to read social cues, she is determined to hang with kids she has no business being near, and she doesn't know how to interact. I'm sure whatever she said or did, was just Mary being Mary. Of course, they try to get all the kids to understand they need to be tolerant and understanding, etc. You know how that goes. When they are done evaluating her, they will check with the principal, etc, etc.. Make it so she does not have to go to the regular class. Whatever. Later on, at home Mary was saying pussy, pussy. I asked her what and where had she heard that. Apparently, that is what this little boy called her. Thank God I have low blood pressure because at this point I think a heart attack was in order.

Of course tonight would be the night the school has it's 5th grade program. We had to go watch Mary sing on stage with the rest of the 5th graders. As soon as we got there, I had three teachers come up to me and try to comfort me. Mary's main teacher had no idea, because the Science teacher was told. The guidance counselors assured me of meetings, and classroom sessions on bullying, and this and that. Whatever. Mind you now, Mary got over all of it right after she told me about it. Typical Mary, got it out of her system, and moved on, happy as she could be. I, however, will be chewing on this all year.

I have so much more to tell, that has nothing to do with school. There will be another blog post, just not tonight. I am exhausted. By the way, the 5th grade program was wonderful. All songs about America, from Neil Diamond to Lee Greenwood. Mary sung her little heart out, with a big smile on her face, and a wiggle in her hips.

Success!

I always tell my children, not to worry, things never turn out as bad as it may seem. Well I should take my own advice. As you know I was a bit worried about Mary's IEP meeting today. It went great! I believe I may have been holding my breath as the teacher spoke. Everything was so positive, teachers all say Mary is doing great. She is well liked, happy and works hard. We met with her science teacher, who teaches the "regular" 5th grade class. I was so worried and avoided public school because I was afraid of her being placed with the regular kids. Well, she is doing great, has even made a couple of friends. Needless to say, everyone was so nice and helpful, I did not even have one hint of any tears trying to well up.

How is it, that there are things you say you could never do, then when you do them, you wonder why you were so apprehensive in the first place. That's how I felt today. No I am not beating myself up, but I do wonder why we didn't do this sooner with Mary. Believe me , I know the answer to that question, and it amazes me that one statement made by one person years before, put a fear in me that has guided every decision I have made for the past few years. When Mary was 5, the school psychologist said that putting Mary in a mainstream school would be detrimental to her. Mary knows that she is different, and it would add to her anxiety to try to fit in. Well, I think she may have gotten past that. It was very impressive to have 6 different educators assuring us that Mary was in good hands, how she wont even know when she is being tested, or that being included with the other class is anything but normal. It helps that she has 2 other girls in her class who are 5th graders, so she doesn't go alone. Right now the girls go to PE and Science with the 5th grade class, so I don't think she feels she is different in any way.

Another reason for putting her in public school this year was so we could qualify for the McKay Scholarship, which will fund a private school education should public not be suitable. We are heading to middle school next year, and my first thought was that I do not want her to go to the public middle school that we are zoned for. You know, I think I will give them a chance, and not let my fear guide me. I believe the public school system is probably the best suited for special education. To know that a child with Mary's needs is taken seriously, and that teachers are put in place specifically for her is a great thing. If Mary can handle it, so can I. Stay tuned for next weeks Social Bridges meeting!

I am totally. Prepared

At least that's what I keep telling myself. Quick update, school has been going great so far, Social Bridges is a success. We have all learned a whole new set of "buzz" words to say to Mary to keep her on track and in check. I can't say yet how well they are working because Mary does not like to mix her outside home lessons with her inside home lessons. I have been meaning to write about all of this but time just gets away from me. Then something else comes up and I think I will just wait till this is done, then I'll blog, etc... Vicious cycle.

Thursday afternoon is our big meeting at school to discuss Mary's Individual Education Plan. We will meet with the guidance counselor, the teacher, the school psychologist, principal, and even the school nurse. As I said, I am totally prepared. I am prepared for the emotional roller coaster I will be boarding once I set foot in that room to discuss all things Mary. I do it to myself all the time, I know exactly what to expect. There is nothing anyone can tell me about Mary that I don't already know. Yet for some reason, all the time, the reality of it all overwhelms me. All I have to do is have a Dr. or specialist tell me what I already know or suspect, and I become a basket case. If I stupidly decide I am going to read the whole neuropsychological evaluation, I become overwhelmed. Why is it that seeing it in print makes it all sound worse? Thankfully, it passes, because I don't let it consume me for too long, or I would go crazy.

So, not only do we have this meeting, next Tuesday we have a meeting with the Social Bridges people. I am prepared! For just once I would love to go to one of these meetings and have them say Mary is doing wonderful, moving right along, on track, and so on. I think I secretly expect this to happen, and when all I hear are the things that are not going well, or what new odd things Mary is starting to do, I feel myself slowly slipping away. Slipping into a sense of despair. I wish I could be more like my husband, he hears whats wrong and immediately goes into, ok, what and how can we help her. I slowly crawl there, but once I'm there, it's all good. Why do I have to go with all the drama? O.k., enough of the pity party for me. I will make every effort to get back with everybody on just how wonderful these meetings went.

Loaded Question

One night, as my children and I were all dancing around and having fun, my very deep thinking son asked me a question. "Mom, do you ever wonder why God gave us Mary?". Along with that question he also asked why I think God made her that way. Do I ever wonder? What a loaded question! I don't think he was prepared for my reaction, but I am pretty sure he has a better understanding of all things Mary. What was my reaction? With tears in my eyes, and a huge smile on my face, I told him that God chose to give us Mary because he knew we were special, and would love and care for her with all our hearts. I then proceeded to admit to him my own struggles with that same question.

I told him of the endless amount of guilt I have suffered, the constant worrying, the praying, the sadness. Most of all the deep love, never resentment for her being different.
There is one particular Psalm in the Bible that I chanted over and over in my head.
For you created my inmost being; you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. Psalm 139:13-14.

For me, these words have helped me to see myself, as well as Mary, wonderfully made. I explained to Jimmy, that God knew before we were all born, who we are going to be, and he must have thought we were pretty special to give us someone as wonderful as Mary. What a wonderful deep conversation we had. As I said, I think he got more than he bargained for. I also made him listen to a song that makes me think of Mary with a sense of peace, pride and joy. So, for your listening pleasure, I have included that song in this post. One of my all time favorite artists, saying exactly what I feel.

Here we go again!

Wow, two posts in one week! I have a feeling, after today, I will be posting more often. My husband and I took Mary today to meet with the director of a place called Social Bridges. We were referred to this place once before, as a place for Mary to learn social skills. At the time we did not pursue it for a number of reasons. First, we had hoped her school guidance program would help, then of course there was the cost. It is a bit pricey. Between school, speech therapy, and various other things we have done to try to help her, it was too much of an additional expense. I realized a few days ago that now that we aren't paying school tuition anymore, the expense won't be so bad. I sent an email expressing our interest, and got a call yesterday, and today we met.

Now I am trying real hard to contain my excitement. Remember I have been down this road before. I sit in on these meetings, I listen, I feel hopeful. Everything sounds perfect for Mary. There will be a group of kids that meet with 2 counselors every week. they meet at dinner time, I will have to send her with a meal, more than likely, Chick Fil A.
They start skill practicing during their meal, and go on from there. There will be a time or two when they are taken on field trips, either to a restaurant, mini golf, etc. They are given an opportunity to use their skills in a public setting. Making eye contact, speaking clearly, recognizing social cues, knowing how to start and maintain a conversation. Tom and I will also be learning how to help her at home, there is a sibling support group as well. Social Bridges also communicates with the school to see her progress in the classroom. There is a report card in the middle and a final at the end. I believe it goes until the end of December, depending on how she does, we either sign up for another session, or move on.

Our meeting today was an intake interview. Mary sat with us, had to answer questions, was explained things like why its important to look people in the eye, etc.. Of course, Mary was considered a perfect candidate for the program. Apparently, there are others like her, and they are confident she will benefit from the program. So, here we go again, starting new school, a new program, new hopes. No, I don't want her to change, I just want her to be the best she can be. I want other people to know the Mary that we know and love. Mary will talk to anyone, she is very social, it's just hard for her to know what to say sometimes. Mary's obsession with things are also going to be addressed, she will be taught to move on from things and not obsess about them. Hopefully her new medication will make that a bit easier for her. I am now going to go print out the forms, and mail out my deposit, stay tuned.....

On High Alert

It looks like I am blogging only once a month. I don't know if it's because of this wonderful, lazy summer I'm having, or I have gotten past worrying all the time. School starts in a few weeks, so we will see if I really have taken the worrying down a couple of notches. Trust me, there have been more than a few times where I could have blogged, but by the time I could sit down and write, the mood has passed. Mary is Mary, and there really haven't been any new concerns.

So why am I on "high alert"'? Good question, one I am currently trying to figure out. Mary started on a new medication this week for her anxiety. It is an anti-depressant, which she has taken before. It is supposed to help with her OCD as well. The last medication she took didn't work out so well. It made her disinhibited, which means she just didn't care about what she said or did. Mary can sometimes say inappropriate things, well, this medication made her over the top. If I asked her to do or not do something, she would look at me and do, or not do it anyway. With a devilish look in her eye as well! Not worth it, especially when she walked over to a group of my sons friends and asked if anyone wanted to make out. I'm fairly certain at the time she didn't even know what that meant.

When we went for her regular three month check up, I told the Doctor the usual. Mary was anxious about this or that. Usually leaving for vacation, coming home from vacation, etc. Whenever she knows there is going to be a change in her life, she gets excited, but has to be constantly reassured about exactly how everything is going to go. Right down to, "Are there going to be restaurants there?". We went to her new school to pick up shirts, and boy was she excited! However, for the rest of the week, she wanted to know everything, becoming fixated on lunch trays.
This is why the Dr. suggested a different medication. Hesitantly I agreed, but I'm on edge.

It has been just about a week now. I am suspicious of every little thing Mary is doing or saying. I realized last night that while there have been a couple of things that at the time made me nervous, there really isn't anything she has not done before. It amazes me that she could be doing the same things she has always done, and just because she is on new medication, I want to make more out of it. Can you say paranoia? It really is hard to tell right now because nothing is going on. I will try to shake my paranoia for now, and get it back in full swing once school starts. That will be the real test. While Mary is very excited about starting a new school, it is highly stressful. I wonder if it is more stressful for me than for Mary. I should probably be the one on anti anxiety meds.

It sure has been a while!

Boy, this post has been a long time coming. I have had it in the back of my mind, but kept pushing it further and further away. I have noticed that I am becoming increasingly better at ignoring things that used to weigh heavily on my mind. This, I believe, is a good thing.

School ended without much fanfare for Mary. Everyone knew she was not returning to Avalon, and I kept her home the last two days of school. I did not want to make a big deal out of it, and neither did anyone at school. Summer is in full swing. None of my kids is scheduled for any summer camps. I thought I would just do a thing or two with them on the off weeks we aren't traveling. So far, so good. We had a beautiful week in Anna Maria Island. Mary, as usual stressed a little on the way there, and on the way home. Mary anticipates any change to her daily routine, and does not relax until she feels nothing negative will happen. Even knowing she is headed for home.

Having my kids all home together has been nice. I noticed they are playing together more. Christine and Jimmy have always been close, but it is usually difficult for them to include Mary. This is no fault of Christine or Jimmy's. Mary is just not interested, or cannot relate. Lately, Christine has been bike riding with Mary, and Jimmy will play video games with her. This is wonderful! I realized, and relayed my thoughts to both Christine and Jimmy, that they have the power to teach and show her, appropriate socialization/behavior. It is my hope that the more time she spends with them, and the more they correct her when she says or does something inappropriate, they will eventually rub off on her. You never know!