We have decided to change schools. This is not a light decision for us as we all love our home school and Whitney's teacher.
Whitney is so unhappy at school. The non-compliance continues. We just need to step back and give her a chance to heal these feelings, giving her another setting. We feel a bit like God has been saying, "Thou shalt change schools" for some time to us. First the rezonning, when we fought to stay at our home school that we all love, then the change in teachers last year that was a huge disruption to Whitney's happy and academically productive school life. Now God and Whitney are just putting their feet down and saying to us, "She needs something different." We are listening this time.
There is a school near us that specializes in ESE students. They have 200 ESE students in addition to their "normal" academic track students. This school gives us the opportunity to try different classes for Whitney to find the right fit. We do not have that at our current school. The class she is in is our only choice. Most of those students are on the FCAT track to take the state diploma test in 10th grade. Whitney is not. It is not the right environment for Whit.
The new school has a class that is a tad too low for Whitney, and one that is a tad too high in ability levels. There is no perfect fit, but we can start her in one, and move her. Because of the behavior issues causing her to shut down, we are probably going to start her in the lower class, let her heal mentally, then move her into the higher class. It will be nice to have that option.
The school has other great things for her. They have an indoor pool and she will have pool sessions twice a week. Their physical therapy room is so well equipped. Things we asked for at our current school, and even offered to buy, are normal at this new school. I do have some trepidation. Some of the staff we have met so far do not seem quite as caring as those at our current school. We liked the teacher we met who teaches the lower class we are considering to start Whitney in, so that is a positive.
Its a scary move, and sad, but we think it will be for the best. There were weepy eyes around the table when we made the decision. Whitney is sure loved at our current school.
Tuesday, December 06, 2011
Saturday, November 05, 2011
Rough times continue
It continues to be a really rough year for Whitney. I feel a little helpless. She used to love school so much; now she is shutting down and has become completely noncompliant. Things she loves like the iPad, ballet are not motivators for her any more. The Behavioral Analyst at school thought it may be sleep related.
We saw a sleep specialist (add another person to our caregiver list - we now see someone in almost every category of the Florida Hospital specialist list). We TRIED to do a sleep study for her. Remember the problems with EEGs? Now imagine trying to put 50 leads all over her body and head and keeping them there all night. I tried to tell them on the phone that this was going to be an issue and we better talk before going into this. They placated me and told me the technician would work it out. Well..when we arrived for the study, the technician boasted "I have only sent home 5 kids in my entire career!" Of course I was thinking..."and this will be number six." Everything was fine until the first lead went on her leg. She lost her mind. We got 5 on, and then I put a stop to it and went home, quite a bit irritated.
We made an appointment with the sleep doctor. I'll call him Dr. Dreamy because, oh, that ACCENT...and he is a sleep doctor...He apologized and said he told the tech that we are not in this to traumatize kids and we will find another way. THAT was the right thing to say to me. We talked about her sleep patterns which have been odd for many years. She was only sleeping 8 hours per night, no matter when we put her to bed. She would nap a lot during the day. If she didn't nap, it didn't matter at night. 9 years old and still trying to nap at school!
He suggested we first try a good dose of melatonin and getting her an extra hour of sleep each night. So we started her on that. We have had a few 4:30 am wakeup calls, but she makes it through the night most nights now. She definately is HAPPIER at school, so there is a difference. However, she is still non-compliant with school work.
Back to the drawing board....
We saw a sleep specialist (add another person to our caregiver list - we now see someone in almost every category of the Florida Hospital specialist list). We TRIED to do a sleep study for her. Remember the problems with EEGs? Now imagine trying to put 50 leads all over her body and head and keeping them there all night. I tried to tell them on the phone that this was going to be an issue and we better talk before going into this. They placated me and told me the technician would work it out. Well..when we arrived for the study, the technician boasted "I have only sent home 5 kids in my entire career!" Of course I was thinking..."and this will be number six." Everything was fine until the first lead went on her leg. She lost her mind. We got 5 on, and then I put a stop to it and went home, quite a bit irritated.
We made an appointment with the sleep doctor. I'll call him Dr. Dreamy because, oh, that ACCENT...and he is a sleep doctor...He apologized and said he told the tech that we are not in this to traumatize kids and we will find another way. THAT was the right thing to say to me. We talked about her sleep patterns which have been odd for many years. She was only sleeping 8 hours per night, no matter when we put her to bed. She would nap a lot during the day. If she didn't nap, it didn't matter at night. 9 years old and still trying to nap at school!
He suggested we first try a good dose of melatonin and getting her an extra hour of sleep each night. So we started her on that. We have had a few 4:30 am wakeup calls, but she makes it through the night most nights now. She definately is HAPPIER at school, so there is a difference. However, she is still non-compliant with school work.
Back to the drawing board....
Tuesday, November 01, 2011
Difficult start to school
It was a great start to the school year. She was happy, doing good work...then two weeks into school everything changed. She started throwing fits, crumpling into a little ball on the floor, falling asleep there to get out of working. We thought it was a phase; we had been there before. But it didn't go away.
I wonder constantly about last year and how she had a lot of free time in the classroom. I think she got used to being undirected. It was not the best academic year, but we had fought to stay at our home school despite rezoning, so we felt a little obligated. I am afraid keeping her there has produced this behavior this year. I skipped over most of this last year in this blog. A few weeks after our great start to school last year, a teacher left. The school reeled for a few weeks with Whitney's wonderful teacher being pulled to teach another class. They hired a new teacher, who didn't quite have what it took to manage a class of ESE students. She was NEW....new to teaching. Nice enough, but maybe a few too many video days in the classroom. Whitney went from reading at a first grade level back to not knowing simple sight words. That is where we start this year...back where we were two years ago academically.
Of course, these challenges could be physical. We talked with our neurologist. We decided to try ADHD medicine. Once we found out Whit has a Mitral Valve Prolapse, it limits our use of stimulant ADHD medicine. That leave two medications. We started her on Intunive at the beginning of September. It was an amazing two weeks, then it stopped working. Oh she was TIRED! Intunive was originally a blood pressure medicine. It made her a little dizzy, and VERY tired. We already had sleep issues - long afternoon naps, inability to go to sleep at a reasonable time....well, we kept her on it for another month, trying different times of day, but nothing worked, so I stopped that medicine.
We are back to where we started....
I wonder constantly about last year and how she had a lot of free time in the classroom. I think she got used to being undirected. It was not the best academic year, but we had fought to stay at our home school despite rezoning, so we felt a little obligated. I am afraid keeping her there has produced this behavior this year. I skipped over most of this last year in this blog. A few weeks after our great start to school last year, a teacher left. The school reeled for a few weeks with Whitney's wonderful teacher being pulled to teach another class. They hired a new teacher, who didn't quite have what it took to manage a class of ESE students. She was NEW....new to teaching. Nice enough, but maybe a few too many video days in the classroom. Whitney went from reading at a first grade level back to not knowing simple sight words. That is where we start this year...back where we were two years ago academically.
Of course, these challenges could be physical. We talked with our neurologist. We decided to try ADHD medicine. Once we found out Whit has a Mitral Valve Prolapse, it limits our use of stimulant ADHD medicine. That leave two medications. We started her on Intunive at the beginning of September. It was an amazing two weeks, then it stopped working. Oh she was TIRED! Intunive was originally a blood pressure medicine. It made her a little dizzy, and VERY tired. We already had sleep issues - long afternoon naps, inability to go to sleep at a reasonable time....well, we kept her on it for another month, trying different times of day, but nothing worked, so I stopped that medicine.
We are back to where we started....
Friday, July 01, 2011
Hard Year
We have a new person in our circle of caregivers. Dr. K is our new neurologist. We started seeing her in June, and what a difference from our last neurologist - the one with no bedside manners. We drive to Orlando to see her, and our insurance doesn't play well with them so we pay for the visits, but it's worth it for what she gives to us.
We started with another EEG. Aye yie...I hate those, and Whitney hates them worse. Her sensitivities make putting those leads on a real nightmare. I gave her a bit of melatonin before the appointment on Dr.s orders to calm her down, and she did fall asleep to do the study...but again, nothing irregular showed up. We also did another MRI with the same results - no abnormalities.
We did 2 rounds of blood tests, and did see a few minor abnormalities that supported what the Dr. was thinking - this is probably a mitrochondrial disorder. That is way more than we have ever had...a possible direction to look in. To confirm that we need to do a muscle biopsy. Again the insurance is not going to play nice - they won't cover it so we will need to pay. Do we do it? I dont' know. Its painful, and even if we know, treatment does not change. We can put Whitney on a mitochondrial cocktail to support her muscles and growth, but there is nothing else we can do. This is not fixable....we just may be able to mitigate some physical symptoms.
We started with another EEG. Aye yie...I hate those, and Whitney hates them worse. Her sensitivities make putting those leads on a real nightmare. I gave her a bit of melatonin before the appointment on Dr.s orders to calm her down, and she did fall asleep to do the study...but again, nothing irregular showed up. We also did another MRI with the same results - no abnormalities.
We did 2 rounds of blood tests, and did see a few minor abnormalities that supported what the Dr. was thinking - this is probably a mitrochondrial disorder. That is way more than we have ever had...a possible direction to look in. To confirm that we need to do a muscle biopsy. Again the insurance is not going to play nice - they won't cover it so we will need to pay. Do we do it? I dont' know. Its painful, and even if we know, treatment does not change. We can put Whitney on a mitochondrial cocktail to support her muscles and growth, but there is nothing else we can do. This is not fixable....we just may be able to mitigate some physical symptoms.
Saturday, April 09, 2011
Best Day EVER!
What a great day!Whitney had a fantastic day today. We had ballet this morning. She was in the GROOVE! She did the whole ballet routine, even switching places when the time came. Then she did most of the tap. She did FOUR forward rolls in a row with little help. I am just amazed what motivation 12 little girls in pink can be for Whitney. She will do about anything to keep up with them.
After ballet, we had a birthday party for one of the girls in dance. It was held at SnipIts, a salon for children. They have a party room and do dress-up/hair/makeup parties. I have never felt like such a normal parent before. This was the best party we have ever been to, even our own. Whitney participated in all of the activities. Of course the day had a lot of mirrors, Whitney's favorite thing in the world! She even had her hair styled, sitting almost patiently. She did her makeup, and dressed up in a princess dress with little princess shoes. She happily walked down the red carpet and let everyone take her picture.
She kept up so well with everyone. I also see her starting to develop a circle of friends - school and ballet. They are about 2 years younger, but she gets along well. Its wonderful to see her socially interact and work with that strength.
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