1) We've been working with Chey's doc to get her diapers paid for by medicaid. We got everything completely done, but we have been waiting for the doctors prescription to go through. The supply place needs it written a certain way, so they faxed them the form on Monday. I left the doc a message to tell her it was there on Monday, and a message to tell her that the desk has no availabilities for her in the time she requested to see Chey again (she requested I do this). Today (Wednesday), I called the supplier, to see if the script was in. it wasn't, so I called the nurse. She took my number, and the suppliers fax number, said she'd look into it and call me back. Still no word from either of them. Hopefully, they'll get it done tomorrow. I also got in contact with the people who the doctor recommended concerning Chey. These are people who will come to our house, evaluate Chey to see which services and therapies she would benefit from, and gets us in contact with those therapies. The doctor is also working on getting her into ABA therapy. The next appointment, we go in to discuss Chey's manic giggling. It has gotten out of control, and even she gets frustrated because she cannot concentrate when she can't stop laughing. She has started attempting to hold her breath to stop laughing. it doesn't work... fortunately, she doesn't hold it long enough to be potentially harmful.
the last 3 weeks have involved taking her to her regular doctor because she stopped eating, or ate a tiny amount then stopped eating for a few days. She had only lost 2 pounds since her well child in november. that isn't much, but she was already in the 10th percentile for weight. We got referred, and took her to a feeding therapy, but we were referred to the wrong kind of feeding therapy (help with chewing and swallowing, not help with getting her to eat). I learned about melatonin from 2-3 blogs I follow (not just 1), and realized Chey was also really only sleeping about 5 hours a night. I talked to the doctor about it on the phone, and she made some dosing recommendations. Melatonin is not a prescription drug, and is not needed in even close to as high a dose as comes in tablets, to help Chey. Once we started her on the melatonin, Chey not only got more sleep, but she also started eating again. She gained 2 lb in 2 weeks, by her follow up appointment. We decided we can back burner feeding therapy for now.
Then there is Amber. In January, the school decided Amber no longer qualifies for special education, and IEP. I have had difficulty getting them to follow the IEP correctly all year as it was. Several emails with the teacher indicated that she was doing a lot of things related to her diagnosis (to her detriment) in class, yet they removed her because "She wasn't showing signs in the classroom." At her 504 meeting, I submitted a request for reevaluation for special education by an outside party. I gave my reasons why (which I actually do not wish to detail to much here), and got approved. I am waiting for a paper stating this, though I received confirmation over the phone. Then I will be making an appointment with a good doctor for this type of thing.
In the last few weeks, Amber has had significant setbacks in school. Her behavior has been deplorable, and she has been actively trying to get sent out of class into the hall, office, or resource room. Today she threw a complete fit (not crying. misbehaving) in class, and the adjoining room (where the coats go). over the weekend I made her write a report about how she will behave from now on. yesterday was a god day at school, but monday and today, she has had to rewrite it, in addition to her other work (homework, and extra chores because of behavior. we also remove all fun on technology and tv).
I am at my wits end. Hubby is extremely against medications, but I may have to resort to them anyway. This can't keep up. Mind you, it seems to only be needed at this school. She was at this school 3 years ago, and had to be on meds then too. They do not seem to be able to deal with her, and she gets worse and worse. The 2 years in between, they paid for her to go to a special class out of district, because they had no programs for her. She did wonderfully in those classes. She did so well, they figured she "got better" and moved her back.
This year, the teacher has been swearing up and down that she is having a good year, and they insisted on pulling her off special education... meanwhile, I am getting emails and letters from him about her bad days. I do not know if he means she is doing well, academically, or if, when he says that, he is only thinking of her good days. I do know that she got marked down on point sheets when she was bad at the previous school, ad that she was never bad enough to lose any of her recesses, field trips, etc. what he refers to as a good year, is leaps and bounds from the type of good in those 2 years. in fact, I have never seen her so sullen, so frustrated, or in so much trouble (sort of. 3 years ago she got into a lot of trouble too, but she was not openly defiant. She just had meltdowns from being overwhelmed, or because her OCD collecting couldn't resolve in her mind that garbage needed to stay in the garbage. This year, all of the trouble seems far different).
She is beginning to notice that many of the other kids do not want her next to them in class, and beginning to think her teacher yells at her too much. I think the kids are frustrated that they cannot hear or concentrate through her disruptions, and the teacher is at his wit's end too. This doesn't help Amber's feelings about it, but it still explains it. Amber feels the need to be loved by everyone, and the center of attention. That is impossible when she is loud, disruptive, and prevents others from being able to talk, or listen. She is nothing like this at home, except when receiving punishments for the bad that happened at school. at home, she is still the sweet, loving, polite little girl I know. I do not doubt her behavior at school. I just don't know what to do about it.
Hopefully, we can get some answers from the doctor who reevaluates her. I will probably also take her in to her regular doctor's office to discuss a different kind of meds. The first set made her ill. We need better choices. We tried a psychologist once, but after taking her back for 2 months, we still hadn't even met the actual psychologist.. We were driving a very long way just to get juggled around. Again, we need better options. Sigh.
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