Sam lost another tooth yesterday. I only found out becasue I happened to look in his mouth at the right angle. He had no idea. Or if he did, held no significance for him. So far this makes 3 teeth out. THe first he got a bit upset about, the second he must have swalloed in his sleep and then this one must have come out during the day. I am sad that this developmental period means nothing to him but I am happy that it is not overly upsetting to him. I suppose it could be worse.
After weekly follow up calls to the meurologist, I finally got a call back about 2 months after I sent the video of Sam foaming at the mouth. The doctor still hadn't been able to open the video and said we woudl just talk about it at Sam's next appointment - in August. AUGUST. So he hasn't seen the video and has no idea if it is something serious and he says don't worry about it we will talk in August. I would love to find a new neurologist but I really don't think there are any fantastic doctors out there for Autism. I have list from various school with "parent recommendations" but this guy is on one of those lists so I don't know how much help they will be.
Tuesday, June 26, 2012
Friday, May 25, 2012
IEP Season
The school year is winding down and so IEP season is in full swing as we all plan for next year. Sam's meeting went well. It seems that instead of dropping items on the floor hundreds of times a day he is only doing it tens of times a day. Woo Hoo! (insert sarcastic eye roll) Without any debate, the district consented to continue Sam's after school home program without any breaks in the summer and they added additional hours in August. He is set to continue at his current public school program- which is a good program-next year. Sounds good right? In the moment I went with it and signed the IEP. I know how lucky we are to live in an area where special education services are provided at this level.
but. . . . . I met with the special education director of the district in which I work. We discussed Sam's (lack of) progress and behavioral issues. SHe told me that if he were in her district she would most definitely look for a private school program for him. She helped me clearly articulate why his current program is not the most appropriate option for him. She confirmed one of my big concerns - Sam's current program keeps kids through age 14. After that is is assumed they will go to life skill or job training programs. Sam is not on that path. Unless he has major congnitive gains, he will not fit into a program like that. At 14 he is likely to be 6 feet tall and very strong. The chances that we will be able to get him into a good private school program at that point will be very slim. THe chances are better while he is younger. She also told me that around here, it isn't much cheaper to send kids like Sam to public programs. SHe urged me to push for it now.
so. . . I left a message for my case manager last night (you know, just to make sure she has a great holiday weekend). I will follow up with a letter today.
Let the games begin.
but. . . . . I met with the special education director of the district in which I work. We discussed Sam's (lack of) progress and behavioral issues. SHe told me that if he were in her district she would most definitely look for a private school program for him. She helped me clearly articulate why his current program is not the most appropriate option for him. She confirmed one of my big concerns - Sam's current program keeps kids through age 14. After that is is assumed they will go to life skill or job training programs. Sam is not on that path. Unless he has major congnitive gains, he will not fit into a program like that. At 14 he is likely to be 6 feet tall and very strong. The chances that we will be able to get him into a good private school program at that point will be very slim. THe chances are better while he is younger. She also told me that around here, it isn't much cheaper to send kids like Sam to public programs. SHe urged me to push for it now.
so. . . I left a message for my case manager last night (you know, just to make sure she has a great holiday weekend). I will follow up with a letter today.
Let the games begin.
Wednesday, May 23, 2012
Maya is 4
Friday, April 27, 2012
Seven!
Yesterday Sam turned seven! I can't believe I have been a mother for seven years. It was a regular day - everyone had school/work. I gave Sam a musical toy as his gift. He likes these Baby Einstein toys which look like stuffed animals with pictures of instruments on their paws. You press the paws and it plays a tune. Hannah got the turtle for Christmas but Sam quickly claimed it and began holding in right up to his ear and playing it again and again and again. . I found out they make the same toy in different animals so I got him the Panda (and actually the lion a few weeks back as well) to be extra. We had ice cream cake after dinner and called it a day.
It was, as his birthdays always are, bittersweet. I am happy that we are in a better phase with him. He is happier so fewer tantrums, and we have a decent therapy schedule for him. The fact that he is getting older is hard because chances of his gaining clear communication and cognition are getting slimmer and slimmer.
But we keep trying!
It was, as his birthdays always are, bittersweet. I am happy that we are in a better phase with him. He is happier so fewer tantrums, and we have a decent therapy schedule for him. The fact that he is getting older is hard because chances of his gaining clear communication and cognition are getting slimmer and slimmer.
But we keep trying!
Sunday, April 15, 2012
Billing
Something about this doesn't sit right with me.
Earlier this year I found an in-network provider of ABA hours through my health insurance. The BCBA running the program used to work in my son's first school so she knew him. We met and discussed her program. She said she like to get the kids out of the house doing community experiences, social skills classes, swimming, etc. I stopped her right there and said I was not in position to shell out for a bunch of classes if that was going to be necessary. She told me that the classes were covered because they were part of the therapy. We got started and it seemed to be going well. Then. a few weeks into the program, I got an email telling me that she wanted to bill me extra to cover "expenses" not covered by insurance like the swimming and incidental expenses when they go out in the community. She wanted to double my co-pays (an extra 120 a month). I told her that I already provided a few dollars for each community outing and that I could not budget to double my co-pays. I pointed out that I had specifically asked about the cost of the class before we started. SHe dropped the issue.
A few months later I got a bill for double my co-pay amount. I emailed and asked what was going on. SHe replied "We talked about this - it is for extra expenses". I reminded her that we DID talk about it and that I had said that was not ok. As an in-network provider it is illegal for her to bill me beyond the co-pay. Since then she has started dropping all his acitivties. SHe only wants to send a therapist to work alone with him in his room. She doesn't even want him going otu for community experience. SHe has told me that she either wants me to pay out for swimming or to get disabilty to pay for it. Here is the kicker - she wants me to cover the cost of swimming so she can have her therapist dribve him there and she can bill the time as ABA. Does that sound like fraud to you? My husband took Sam to the swimming class once because the therapist was sick. There was nothing for him to do but sit and watch and then get Sam changed after. If there therapist were in the water with him I could understand calling it ABA but if there therapist just takes him there and I am paying for the class, how is that ABA? If she has to cut the class because she can't run her business that way then that is fine but she shouldn't ask me to pay for something that she then wants to bill as one of her services.
I understand she has to run her business and be able to make a living but it feels likes dropping everything that involves taking him out of the house is just mean spirited. Sam loves to go out and they know that. Sam already get "at the table" ABA all day at school and we have a home program from the school. The whole point of signing up with this provider was to add something different to his schedule. It was also to get a little respite for the rest of the family members. I used his Wednesday outing to take a shower - it was the only time possible. I used his other outing to take Maya out. If they are in his room every time then that is all out the window. Going on a community outing doesn't cost her any extra. I send a rather critical email to the group last night so now I am waiting to get kicked out of the program.
Earlier this year I found an in-network provider of ABA hours through my health insurance. The BCBA running the program used to work in my son's first school so she knew him. We met and discussed her program. She said she like to get the kids out of the house doing community experiences, social skills classes, swimming, etc. I stopped her right there and said I was not in position to shell out for a bunch of classes if that was going to be necessary. She told me that the classes were covered because they were part of the therapy. We got started and it seemed to be going well. Then. a few weeks into the program, I got an email telling me that she wanted to bill me extra to cover "expenses" not covered by insurance like the swimming and incidental expenses when they go out in the community. She wanted to double my co-pays (an extra 120 a month). I told her that I already provided a few dollars for each community outing and that I could not budget to double my co-pays. I pointed out that I had specifically asked about the cost of the class before we started. SHe dropped the issue.
A few months later I got a bill for double my co-pay amount. I emailed and asked what was going on. SHe replied "We talked about this - it is for extra expenses". I reminded her that we DID talk about it and that I had said that was not ok. As an in-network provider it is illegal for her to bill me beyond the co-pay. Since then she has started dropping all his acitivties. SHe only wants to send a therapist to work alone with him in his room. She doesn't even want him going otu for community experience. SHe has told me that she either wants me to pay out for swimming or to get disabilty to pay for it. Here is the kicker - she wants me to cover the cost of swimming so she can have her therapist dribve him there and she can bill the time as ABA. Does that sound like fraud to you? My husband took Sam to the swimming class once because the therapist was sick. There was nothing for him to do but sit and watch and then get Sam changed after. If there therapist were in the water with him I could understand calling it ABA but if there therapist just takes him there and I am paying for the class, how is that ABA? If she has to cut the class because she can't run her business that way then that is fine but she shouldn't ask me to pay for something that she then wants to bill as one of her services.
I understand she has to run her business and be able to make a living but it feels likes dropping everything that involves taking him out of the house is just mean spirited. Sam loves to go out and they know that. Sam already get "at the table" ABA all day at school and we have a home program from the school. The whole point of signing up with this provider was to add something different to his schedule. It was also to get a little respite for the rest of the family members. I used his Wednesday outing to take a shower - it was the only time possible. I used his other outing to take Maya out. If they are in his room every time then that is all out the window. Going on a community outing doesn't cost her any extra. I send a rather critical email to the group last night so now I am waiting to get kicked out of the program.
Tuesday, April 10, 2012
Roll Tape
I finally got a video of Sam's mouth movement. I emailed it to the neurologist today. Have any of you seen this before?
Thursday, March 29, 2012
Seizures
We have wondered whether or not Sam is having seizures ever since his "abnormal" EEG. The report says the abnormal activity could be partial complex seizures. To get more conclusive information we would have to do an inpatient EEG with video. Since Sam would likely tear off his own flesh to remove the wires, we haven't done that yet.
A while back, when Sam went through a phase during which he flipped otu if I wasn't in his bed, I noticed some strange mouth movements when he was sleeping. When he started coming into our room in the middle of the night we saw these movements again. It is kind of like a sucking/chewing/lipsmacking motion that happens repeatedly throughout the night. I mentioned it to the various neurologists and they said the only way to know if it was seizure related was to do that inpatient EEG but neither of them seemed in a rush to do that.
Recently, Sam began to make foam in his mouth during this motion. We have twice seen a big gob of foam on his mouth in his sleep. I called and he has asked us to try to film it so he can get a look at it. I got a picture of the foam the other day but the motion had stopped by the time I got my Flip cam. So, we will keep watch and try to get it recorded. And I have a feeling we may have to do that inpatient EEG at some point in the near future.
A while back, when Sam went through a phase during which he flipped otu if I wasn't in his bed, I noticed some strange mouth movements when he was sleeping. When he started coming into our room in the middle of the night we saw these movements again. It is kind of like a sucking/chewing/lipsmacking motion that happens repeatedly throughout the night. I mentioned it to the various neurologists and they said the only way to know if it was seizure related was to do that inpatient EEG but neither of them seemed in a rush to do that.
Recently, Sam began to make foam in his mouth during this motion. We have twice seen a big gob of foam on his mouth in his sleep. I called and he has asked us to try to film it so he can get a look at it. I got a picture of the foam the other day but the motion had stopped by the time I got my Flip cam. So, we will keep watch and try to get it recorded. And I have a feeling we may have to do that inpatient EEG at some point in the near future.
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