That's been the general consensus between me and several of Boo's doctors right now. Something neurologic is going on but none of the symptoms point to any one (or two) things. Actually none of them fit ANYTHING. He's got strange sleep patterns, odd skin color-sometimes but never consistant with any certain position or angle, refuses to do any oral eating but always has either his foot or toes in his mouth if he can get to them. His muscles are super tight and he's contracting a lot. Tons of other minor things too but nothing that says any particular issue. This little guy never fails to keep me on my toes.
I've decided since we have to have so many tests done (sleep study, CT scan, etc) I'm closing the shop until August. I just can't spend the time I need to on anything else right now. I'm trying to keep all these doctors appointments, therapy sessions, tests, etc...there's just not enough of me left to work on things for the shop. Besides I really need to take a break and work on things for my family when I get a few minutes. It's pretty sad when I make diapers and my son only has 6 that fit. I'm just taking some time off for my family and our issues. Maybe then I can relax and have a more productive life and shop this fall.
Friday, June 26, 2009
Monday, June 1, 2009
Update-Gracie
It's official-the school is full of idiots (& I don't use that term lightly!) The school counselor called to respond to my questions about biology placement and during the course of conversation we began discussing the aspergers diagnosis. She thought it was just a "probable diagnosis not an actually doctor provided diagnosis". I reminded her again that I have sent 5 copies of this on a doctor's script as well as the doctor's dictation to provide the information they wanted and I'm getting the run a round from Blue River and the school. "She had no idea." Blah, blah, blah....Charlie Brown's teacher is talking again. These people are going to make me NUTS! Now we are going to have another 504 meeting at the beginning of the school year...waste my time again but I'll go. This time if we can't get something better than the general education intervention crud we had I will retain the attorney we talked to. No more messin' around. I'm way past done.
On the upside, Gracie did get in to choir and there was a space for her so it's official on her schedule for 8th grade. She also is in high school algebra and high school biology. We weren't going to put her in biology but she "had" to have it and was to the point of tears so the counselor called and asked what we wanted to do. I had already fought with her to get Gracie into Algebra (they wanted to put her back into pre-algebra which she passed this year). I told her to remind Gracie how much work and effort was needed. I heard her in the background saying she understood and wanted to do it so it's official. My child is crazy too and going to take 2 high school classes in 8th grade. This should be "fun". :\
On the upside, Gracie did get in to choir and there was a space for her so it's official on her schedule for 8th grade. She also is in high school algebra and high school biology. We weren't going to put her in biology but she "had" to have it and was to the point of tears so the counselor called and asked what we wanted to do. I had already fought with her to get Gracie into Algebra (they wanted to put her back into pre-algebra which she passed this year). I told her to remind Gracie how much work and effort was needed. I heard her in the background saying she understood and wanted to do it so it's official. My child is crazy too and going to take 2 high school classes in 8th grade. This should be "fun". :\
School's OUT!!!
Today is the last day of school for the kids. Gracie was up at 6:15 am by herself....why can't she do that everyday? She was ready to leave 10 minutes early...she needs to "get there early enough to get a yearbook". We didn't get the order in on time in the fall so now she has to hope she gets one. Last year she missed it.
She found out that she made choir for next year but there's a catch. If the class is full then she has to try out again in the fall. You'd think they'd have a waiting list but I guess not. The director was going to ask the schedulers to see if there is room so she'll know before school gets out but they haven't said yet.
Boo has no idea it's the last day-though I did tell him. I'm sure he doesn't really understand that he's leaving Miss Sarah's class and moving into kindergarten in the fall. That means most of his preschool classmates will go into regular classrooms and he's going into lifeskills. I do know that there are many of the kids who will be in & out of the class throughout the day for different subjects so he will still see them. He will also still go with them to the "specials" classes (art, music, gym, library).
Summer is looking long already though I am looking forward to the break. Boo will have therapy on alternate Monday's @ St. V's and 6 sessions for school throughout the summer. We are continuing respite too so I have some time that I don't hear "we have a diaper emergency-come change him" or "Boo needs his medicines" or "time to feed Boo-are you going to make him wait?" OK, enough boys and girls....there is a clear schedule on the fridge so everyone knows when he needs to eat, when to get his meds, and the minimum times to check his undies for a change. I love my family but I'm not the only one who can care for this child; not to mention I shouldn't be the only one since his pappa is still laid off and sissy is more than able to change a wet bum. Now if I can just get them to understand that respite is "complete care for Boo" so they get a break too. Not that they really want anyone to come in but they don't want to do it either. Hmmmmm, I'm still not "SuperMom" even though I try.
I agreed to cut respite to 1 day a week from 10-3 for June. DH is due to return to work in July (I hope!!!) so I may go back to 2 days a week then. I plan to use 1 day to spend completely with Gracie and 1 day to sew. Cleaning can be done on the other days. :-p
My shop is nearly empty so I reminded/told everyone that if the door to my sewing room is shut and I'm in it then I'm "at work" and to LEAVE ME ALONE!
Money is tight and I can't get anything done and posted to help supplement if I can't get the time.
OK, enough whining. DH wants to go for a bike ride and I need the exercise so we're going while both kids are at school. We've got about 45 minutes before Boo gets home so I've got to get my bum out of this chair.
Have a great week!
She found out that she made choir for next year but there's a catch. If the class is full then she has to try out again in the fall. You'd think they'd have a waiting list but I guess not. The director was going to ask the schedulers to see if there is room so she'll know before school gets out but they haven't said yet.
Boo has no idea it's the last day-though I did tell him. I'm sure he doesn't really understand that he's leaving Miss Sarah's class and moving into kindergarten in the fall. That means most of his preschool classmates will go into regular classrooms and he's going into lifeskills. I do know that there are many of the kids who will be in & out of the class throughout the day for different subjects so he will still see them. He will also still go with them to the "specials" classes (art, music, gym, library).
Summer is looking long already though I am looking forward to the break. Boo will have therapy on alternate Monday's @ St. V's and 6 sessions for school throughout the summer. We are continuing respite too so I have some time that I don't hear "we have a diaper emergency-come change him" or "Boo needs his medicines" or "time to feed Boo-are you going to make him wait?" OK, enough boys and girls....there is a clear schedule on the fridge so everyone knows when he needs to eat, when to get his meds, and the minimum times to check his undies for a change. I love my family but I'm not the only one who can care for this child; not to mention I shouldn't be the only one since his pappa is still laid off and sissy is more than able to change a wet bum. Now if I can just get them to understand that respite is "complete care for Boo" so they get a break too. Not that they really want anyone to come in but they don't want to do it either. Hmmmmm, I'm still not "SuperMom" even though I try.
I agreed to cut respite to 1 day a week from 10-3 for June. DH is due to return to work in July (I hope!!!) so I may go back to 2 days a week then. I plan to use 1 day to spend completely with Gracie and 1 day to sew. Cleaning can be done on the other days. :-p
My shop is nearly empty so I reminded/told everyone that if the door to my sewing room is shut and I'm in it then I'm "at work" and to LEAVE ME ALONE!
Money is tight and I can't get anything done and posted to help supplement if I can't get the time.
OK, enough whining. DH wants to go for a bike ride and I need the exercise so we're going while both kids are at school. We've got about 45 minutes before Boo gets home so I've got to get my bum out of this chair.
Have a great week!
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