Monday, December 12, 2011

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!

Thursday, December 1, 2011

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!

Wednesday, November 16, 2011

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.

Friday, November 4, 2011

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!

Tuesday, November 1, 2011

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.

Wednesday, October 26, 2011

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.

Tuesday, October 25, 2011

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.

Tuesday, October 18, 2011

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.

Thursday, September 15, 2011


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!

Wednesday, September 14, 2011

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.

Thursday, August 18, 2011

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.

Friday, August 5, 2011

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.....

Wednesday, August 3, 2011

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.

Friday, July 1, 2011

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!

Tuesday, May 24, 2011

Insights....or Musings?

Every once in a while I have these lightening bolt kind of insights, or musings, I don't know what to call them, regarding how I think Mary's mind works. As usual,. I am always astonished, and amazed that I have figured out a part of her that cannot be explained any other way. So, let me entertain you with my thoughts, as my husband has a tendency towards eye rolling whenever I try to humor him with my Maryisms.

Mary is boy crazy, not just boy crazy, boy crazy.. I was listening to her go on and on about a boy down the street, (a teenager of course), and it dawned on me that there is not anything she is saying, or anything she does regarding boys, that all girls don't at some point have going through their heads. I could remember myself, thinking of a boy constantly, staring at him, at his house, wanting to get closer in some way, any way. Finding out everything there is to know about him, etc.. However, we at an early age, begin to realize that this is not acceptable behavior. It's something we want to keep secret. We don't want anyone else to know how deeply in love we are with this person. I think it's a way to keep them all to ourselves. Well, that part of Mary's brain does not make that connection. Mary lives it all out, for everyone to see. I often think that God gives me these little insights to make it easier for me to talk to and understand her better. Now, when I am trying to get her to stop obsessing, I give her the old, everybody feels this way, but it may make the boy uncomfortable, blah blah blah. I feel better anyway, and I can only hope she is understanding.

On that same boy down the street. David drives a Chevy Trailblazer, Mary wants a Chevy Trailblazer. Not only is she now obsessing over this vehicle, she can spot one a mile away. O.K., this part of her mind is a mystery. I guess we need to leave some things a mystery. Whenever we are in the car, no matter what she may be doing, Mary can spot a Trailblazer. I have been driving for many years, I don't think I could recognize the make and model of a car, even if it were to run me over. Really? I mean there are several trucks that to me, look like Trailblazers. I can understand when she sees the Chevy symbol on the front, but there are quite a few Chevy type trucks on the road. Believe me, I have purposely verified with my own eyes that she is correct. Mary is like that with music as well. If there is a song Mary likes, she automatically knows some of the words, or at least gets the harmony and beat down to a t.
Now I have tried to have her listen to musical learning CD's, like Schoolhouse Rock, but for some reason, it's not the same. I think because she knows it's something that is supposed to help her learn, she unconsciously blocks it out? I don't know. For now, I am happy with whatever little lightening bolts God sends my way.

Sunday, May 15, 2011

Reflections & Rantings

As I promised in my last post, I still have some whining to do. First, I want to reflect on some things that happened this past week. Last Wednesday, Mary had her annual EEG. As I sat in that dark room once again, with my daughter falling asleep, and the strobe lights flashing, my mind was blank. I sat there thinking, "hey, I'm not thinking anything". So, I started to recall what I was thinking this time last year. I remember posting on this blog, the fact that I had accepted that things will be what they will be, no longer wishing for a different outcome. Acceptance, that Mary will be Mary, abnormal testing and all. This time, it was like sitting and waiting for her to finish a routine dental cleaning. No big deal. Of course, me being me, started to think, "is this a bad thing?". Have I given up, do I just not care anymore? No, I know, I am prone to stinkin thinkin and this is one more thought that needs to be pushed out of my head. I believe this is the beginning of me not seeing Mary as any different than I see my other children. I know I have acknowledged this before, but it is one thing to say it, and a completely other thing to not have it anywhere in the back of your mind.

Now for my whining. I have also spent the last few weeks, not wishing for things to be different with Mary, but just plain pissed off that some things are the way the are. All trivial little things. Like, let's start with, Why does she have to have such bad acne? Isn't it bad enough that she has a difficult time looking at people when she talks. This is something she has always had, even before the acne. I have tried everything short of medication, ( which I will not do at this time). I was hoping once the period came, the pimples would calm down. Don't even get me started on her period! Really, why? What's with the boy craziness, and obsessing over them? I understand the OCD, it's part of her, but really? Can't we obsess over things like needing things to be neat and orderly, or hand washing? Mary used to spend all her time at home in her room, reading, or playing. Now, all she does is go outside and stand in the drive way, waiting for someone to come by and hang out with her. That's fine, but when there is no one there, she talks to herself. I sometimes go outside and stand behind her and just watch and listen. My first reaction is to pull her in the house and say, "stop!" "Do you know how crazy you look"! I would never. When she notices me, I ask her who she's talking to, and she very calmly says, no one, or myself. So clearly, she knows what she's doing which means she's not crazy. I will worry when she starts seeing people who aren't there. Oh, I could go on, but will stop here. For all my whining, I have just as many joys, and breakthroughs to rejoice over. However, this post is about reflecting and ranting. Stay tuned for my next post, hopefully something with rejoicing in it.

Saturday, May 7, 2011

Where to begin!

I am doing a very poor job of keeping up with my blogging. Truth is, as far as Mary goes, it is always the same old same old. This it seems has turned out to be a good thing. I have come to realize that stressing over what she does or does not do is something that blogging has helped me not do anymore. So, I go for long stretches of time with no posts. Then, like this week, I have tons of stuff to update. Yes, I am now updating, no longer whining or complaining, stressing or worrying. Again, this is a good thing. If I have nothing to update for a month or two, again, good things.

Now, for an update on school. We finally know what Mary will be doing this next school year. Kaley Elementary is the public school we are zoned for, and is within walking distance from my house. There, they have what they call a V.E. class. Varying Exceptionalities. This classroom is a self contained class with 8-9 kids, one teacher and one paraprofessional. One class, one teacher, with the exception of P.E, art and music. No more switching classes, and having a different teacher for every subject. Perfect for Mary. Also, and the best of all, no mingling with the teenagers! As she will be one of the older kids in the whole school. During the first 3-4 weeks of school, they will test her, and see where she is both academically and psychologically. This is wonderful, no separate testing away from school. Hopefully, she will just figure this is a normal part of her day and not feel the pressure of testing. I am very excited for Mary. Problem is, we cant really tell her just yet. Mary is somewhat aware that she is going to a different school, but once we tell her in those exact words, she will start obsessing and stressing. I know over the summer when she is away from Avalon, and we tell her, she will be very excited.

I will try not to go into overload on this one post, but there is still a few more things to update. We had a neurologist appointment last week and Mary is scheduled for her annual EEG this week. We have had to up the dosage on her ADD medication, which is still in its, lets wait and see what happens stage. With all that, I am sure another post will be coming soon. As I finish up this post, I realize that I may still have a bit more whining to do. This whining is still in its processing stage, once I have figured it out, I'm sure there will be a post. So, stay tuned...

Tuesday, April 12, 2011

Been a while..

Wow, it sure has been a while! I could have sworn my last post was a couple of weeks ago. Time is just getting by me too fast these days.
I wish I could say so many things have happened, but really there has not been much. This week however, all kinds of things are happening. Quite a few things dawned on me in the last few days. Mary is still regularly getting her period. Why is it that my 13 year old could go 2-3 months without a period, and Mary has been like clockwork? It has been difficult to find a pad that will fit her skinny body. Then it hit me, buy her bigger underwear! Briefs, not bikinis. Brilliant. While at the Target for said underwear, I come across pads for tweens, by Kotex. Hallelujah! I bought 3 boxes, just in case I can't find them again. That, plus the bigger undies and we have success. Mary can now help herself. Probably too much information, but a big deal around here. It has also slowly, but most certainly, become clear that she has started to outweigh her medication. We now have full blown Mary in overdrive, all day. Still, not too bad, she is getting older, so she doesn't bounce around too much, just extremely chatty. I can wait it out until Dr. appointment next month.

As far as school goes...... Today was a big day for me. I registered Mary in public school. It was a bit scary, I can't even describe how I felt. I have never been more sure that this is a change we have to make, but still felt apprehensive. Only because making decisions for Mary are so hard, we want to be so sure we are doing the right thing for her. By the time I was finished talking to the placement person at the school, I was almost exhilarated. I don't know what excites me more, the fact that she will get all the services she needs in one place, or the fact that we don't have to pay for any of it. My wonderful husband is trying to warn me not to get too excited, of course, because we could run in to just as many issues in public school as we are in private. So, I have been looking at it like it can't be any worse than what we are dealing with now. I know better than to expect a fix to anything. I do know they will be doing a more extensive evaluation. I didn't realize the private school evaluation done by the county is not as in depth as if your child was attending public school, not just receiving services. Maybe our diagnosis can be narrowed down a little? There I go hoping again, not to worry, as I said, I know better. All I have to do is remember soon she will be in middle school, and then a few short years after that, high school. That in itself, is enough to crush me. Stay tuned....

Monday, March 14, 2011

What to do, part two....

Here we are again, shaking our heads over Mary's school. I have two major problems with her school. One, I'm not sure I like the kids she has decided she wants to mimic. Mary feels the need to act like other people sometimes, I think she just doesn't know how to be herself when as he is with other kids. I know I have explained all that in more than one of my posts. Two, I do not believe all of, or I should say any, besides one of Mary's teachers, has any experience teaching special needs kids. Example: Mary had to study for a science test, we did the best we could, she really tried. I was shaking my head over trying to figure out how she is supposed to remember the difference between, toposhere, stratosphere, photosynthesis? Give me a break! Still, I did not discourage her, we made an attempt to memorize it all. So, as I suspected, Mary got a 64%. What does the teacher say? "You didn't pass your test, so no treat for you next week" Please, just imagine the smoke coming out of the top of my head. This is only one recent example.

I have always been adamant about not putting her in public school, thinking it would be detrimental to her development. Well, really, is this any better? I started browsing the website of the public school in our zone. Not much there on special needs, so I checked the public school which is the same distance, but not in our zone. Low and behold, there is a whole section on special needs. It turns out, this school is a feeder school for children with special needs, ie: Autism and intellectual disabilities, which means the "mentally educable", which is what Mary has been deemed. From what I could get off the website, this may be good for Mary. I believe that the kids are in their own classroom, and are not included in with the "regular kids". There is a whole method to teaching kids with learning differences. I made a call, and am waiting to schedule an appointment to talk to someone. If anything, we can try this for a year, if it doesn't work out, then we will qualify for Florida's scholarship program and send her to that high dollar private school we were looking into. We need to do something before she gets to middle school, I don't even want to think about having to put her into the middle school we are zoned for here.

I know I cannot shelter her from everything, but if I could just minimize what she is exposed to on a daily basis, then I will. Sure, right now being in a class of 10 seems ideal for her, but wouldn't a class of 5 be better? I am no longer worried about her academic abilities. It is amazing all that she is capable of doing. My main focus right now is not whether she knows about the greenhouse effect, or even if she can add 1 + 1. I need to put more focus on her socialization, behavior, and general mental health. I should be used to this by now, but still, I am blown away by the power of prayer. How God tells you what to do, just by giving you those hunches and instincts. Makes me not worry so much about what going to happen tomorrow.

Thursday, February 24, 2011

Moving out...

As you know, I have been trying to slowly give Mary some independence. While she is perfectly capable of caring for her body on her own, I have a hard time accepting that she is doing it properly. Mary has always showered, washed, and brushed up in our bathroom. There is a bathroom close to her room, but when she showers there, she tends to play, rather than clean. Not only that, but it's smaller and I can't get to her as easily, so she doesn't use it. I have just recently let her shower without any assistance, although, every once in a while I will wash her hair to make sure she is thorough. Even teeth brushing, I will go in and re-brush.

These last 2 weeks, I have been recuperating from gallbladder surgery. Piece of cake for me, but the first week I was unable to move as quickly as I usually do. With Mary being as developed as she is, my husband no longer has any roll in assisting her, so I just let go, and let her do it all.

At some point in the week, it hit me, this is not so bad. I realized how nice it was to not have to get up and get her moving. As a result of me not leading her, she made less of a fuss. Obviously, like all kids, she relished in the independence. So, I decided to move her officially and completely out of our bathroom. No more spit streaks in my sink! I went to the store and bought her some special little toiletries, and additional accessories for her bathroom. When Mary got home from school, I explained this all to her, I let her know how proud of her I was, and how much she is growing up. You should have seen her face light up.

Now, my evenings are a little less hectic, and Mary is a lot more cooperative about getting in the shower. I suppose these milestones happened with all of my children, but with Mary, it always feels like a physical force. I try to look at it as God's way of letting me see the importance in all of life's little things.

Thursday, February 10, 2011

Girls just wanna have fun!

This week is "Spirit Week" at Mary's school. From crazy hat day, to pajama day, it's been a fun week. Today is by far, as Mary would say, the best day ever! It's Blast from the Past day, and Mary has extensive knowledge of all things 80's. We kept going back and forth between who she wanted to look like. While I explained to her that she could just be Mary from the 80's, she wasn't going to have that. So, we are Cyndi Lauper today. Blondie and Pat Benetar came in close behind. Cyndi Lauper of course had the most make-up and crazy look out of the three. Mary was excited because she got to wear lots of make-up and big earrings. We had a lot of fun getting ready this morning.

I would love to be more like Mary. It's kind of funny, because Mary is very much like me in the self-esteem, confidence areas. However, I try to keep my insecurities to myself, avoiding certain situations at all costs, where as Mary is right out there with it all. Going to school this morning dressed the way she was, had her reeling. I could tell she was extremely nervous. I walked into school with her and she was obviously uncomfortable. All of her hand gestures and mannerisms scream "please don't look at me and laugh!". Only the wonderful, amazing thing about Mary, is that she wants to do it so badly, that she pushes through it all with a determination I can't quite explain. I actually read a book called "Feel the Fear and Do It Anyway", you know what? Didn't help a bit! I may be able to push myself through some situations, but not to the degree that Mary does. As I've said before, we could all use a little Mary in us!

Sunday, January 30, 2011

Too soon.........

I knew the day was coming, thought I was prepared, thought I had prepared Mary well enough. Still, in the back of my mind did I ever think I would be helping my 10 year old through her first period? No. That's right, Mary got her period, and she is only 10. Her doctor informed us long ago that developmentally delayed children go through puberty earlier. Why, I have no idea, but believe me I am trying my hardest to understand. I have even come to a few of my own conclusions. So far, Mary seems to be doing well enough with it all, probably better than I am. I know she is a little scared, a little confused and afraid of it hurting. It seems that no matter how I try to explain to her that she is not a teenager, her body keeps telling her otherwise! It is getting to a point where I have to remind myself that she is only 10, small comfort to me that she will be 11 in 3 months. At her last Dr. appointment, she measured in at 5 ft. tall, she now wears a bra without being told, and she is completely boy crazy. These things may have happened with my two other girls (only a bit older), but for them it seemed like a natural course of events. Not to mention, I never had as much "hands on" experience with either of them.

So, now I have to go back to keeping a monthly calendar, and try to teach her how to properly care for herself. I know it is not going to be easy, because naturally my first instinct is to just do it myself. I know I can't do that, but don't think I have not tossed and turned with thoughts of keeping her home from school on those days, or just hanging out at school with her. My husband, who thinks I just look for things to stress out about, is right there with me on this one. Believe me, I know what I have to do if I want to maintain even the slightest bit of sanity. Like everything else, we will get through this. Thank God it only comes once a month!

One of my theories on why this has to happen at such a young age is really quite simple. Isn't it better to have all these raging hormones and developmental milestones happening now while I can still control it? If I can reign it in, and drill it all into her now, then I won't have an out of control teenager on my hands years from now. Right? It's a theory, but for now it gives me some comfort. Or it may be that I have never been able to accept the fact that things are the way they are and sometimes there just is no explanation.

Tuesday, January 11, 2011

Staying put....for now

Well, it seems my Mary is just a little too advanced for the last school we visited. I know, this should make me happy. We did hear of another school which is for "high functioning" children. All sounds perfect, except the tuition. Yes, they do accept Florida's Mckay Scholarship money, but we would have to put Mary in public school for a year, then say she can't learn in that environment, apply for the funds, and there you go. However, I refuse to put Mary in public school. I am sure it is fine for some kids, but for someone like Mary, it would be devastating. Maybe I'm over reacting, but even the psychologist said it would set her back. Right now, she is in a place where there are kids just like her, academically, she is ahead of a lot of them. Place her somewhere where she is aware that she is not like the majority of students, and the stress and anxiety she will suffer will be great.

This other school does sound promising. They will be having an open house soon, and I will attend, even though the tuition is astronomical. So for now, we are staying put. Mary has grown so much in just the last few weeks, and as long as we keep drilling things into her, eventually she catches on. Who knows what the next school year will bring, we could win the lottery, Florida could change the way they give scholarship money, who knows, stranger things have happened. Besides, she is in 4th grade, I am just happy to find that there is more out there for her than I thought.

Wednesday, January 5, 2011


It has been a while since my last post. Christmas break was so relaxing I didn't even try thinking too hard about anything! However, I had been continually praying for guidance with Mary and her school situation. Low and behold, I sit down to read the newspaper, and on the front page is an article about a school close by for children with special needs. An answer to a prayer? That's exactly what I thought. Then, imagine my frustration at it being the first day of the school break. I cannot reach anyone at the school for two weeks! So, I emailed them anyway, just to let them know I was very interested in touring their school. Finally, yesterday I talked to someone and have an appointment tomorrow. It looks promising, if anything, they offer services that could be helpful in addition to staying where she is.

So, we are back to school, back to Dr. appointments, and generally starting to think about things again. I noticed on the second day of school, Mary gave me absolutely no grief about getting ready in the morning. After such a long break, it usually takes her a while to get back in the swing of things. It was obvious the night before school started that she was stressing, so I woke up prepared for the worst. Well, the worst never came, here it is Wednesday, and still no breakdown. I mean, she even made her bed! Then I started to think back on the last couple of weeks, and I realized, Mary's behavior has changed, she seems to be gaining independence, and behaving more responsibly. In a way, that makes me sad. It's like when you realize your children are not babies anymore, only with Mary it's coming at age 10. I guess it's about time!

I sometimes get tired of hearing all the cliche's, like God not giving you more than you can handle, or everything happens for a reason, etc... But for me, these very cliche's seem to always be true. Just when I start to basically give up and say "whatever, I don't care", or I start to feel my faith slipping, something happens to set me straight. I realized today that this change in Mary is one of those times. Like always with Mary (and myself), God does things in his own time. I have finally accepted that there will always be something to deal with in life, not only with Mary, but with all of us. I don't know which feels better, seeing my kids grow and learn, or seeing it in myself.