- we had a very nice Thanksgiving week, with Uncle Dennis and Aunt Maria coming to visit for a few days. Dominic did overall pretty well with the massive intrusion on his environment. It was actually pretty suprising - about 6pm on Thanksgiving, he finished his dinner, and took himself downstairs - put on his pj's, brushed his teeth and said goodnight. No bath. A good hour early. We were a bit concerned it would mean either he was sick or he'd be up super early on Friday. Neither was the case, he was just tired.
- We started NeuroProtek last night. I couldn't get him to swallow the capsule, so its another gel cap we'll be puncturing and squeezing out. We'll start out at 1 capsule day for the first week, and then proceed to 1 capsule 2x a day next week.
- We had an Alpine parent meeting on Wednesday. The self choking behavior is gone. Yay! It took a week or so after stopping the chelator, but it hasn't been seen yet. Verbals are moving up and non compliance is going down. So a good month.
- Today is Dominic's first day with his new Para at school. Hopefully that went well.
Monday, November 29, 2010
Thursday, November 18, 2010
Mixed feelings. / Updated
So I got to chatting with our Alpine lead teacher (A) when I picked Dominic up. On Tuesday she went to Audobon and observed Dominic for the entire morning in an effort to try to figure out why Dominic’s verbals have taken a nose dive at Audobon but not at Alpine.
Her first bit of feedback was really positive. She said that oftentimes they observe in public school classrooms and see kiddo’s that are truly being neglected. That is clearly not the case here. Our teachers really WANT to work with Dominic and help him learn but they clearly do not have the training / tools / experience to. She theorized that he’s likely the only kid in this elementary school who responds so well to classical ABA as opposed to a relaxed learning environment.
So there is positive, but there’s also a lot of room for improvement. She provided immediate feedback while there, and wrote up 3 pages of suggestions for the school to try to implement to make things a bit easier.
Now the bad.
Dominic has apparently adopted a “my way or the highway” attitude at school and is being allowed to get away with it. Specifically, if he doesn’t want to do something, he flings himself on the floor and screams. A observed this occur multiple times in a few hours and was horrified because its something they’ve seen at Alpine maybe 3 times. In 17 months. We see it maybe 1-2 times a month, and honestly our way to handle it at home is to leave the room and give NO attention at all to the fit. At audobon, they’re physically lifting him off the floor and setting him the chair. We’ve seen trending at Alpine before that when compliance goes down so do verbals, so now we know why the verbals have dropped so much at Audobon – the non-compliance is out of control.
One of the things we know about Dominic is everything he does, he does for attention. Regardless of whether that attention is positive or negative – he LOVES it. So if he is non-compliant, and told NO or Stop, or Yuck – that’s attention paid to the mis behavior. Instead, they need to be offering fairly steady positive reinforcement (“thank you for listening”. “good sitting” “good walking nicely” “thank you for having nice hands”) at the rate of once every 30-60 seconds. And they need to entirely ignore and provide no attention to negative behavior. This is textbook ABA, and one of the things we know our Audobon para is not trained in. Its not her fault, she wants so much to work with him, she just doesn’t have the tools.
We are actually really horrified to realize that what’s happened – Dominic went from being really compliant in the beginning of the year (coming off of full day Alpine) to figuring out that he can control the situation at school and only do what he wants to is whats happened. And it corresponds to him being more non compliant at home too. So we’ve GOT to get the environments a bit more standardized for all of our sanity.
A believes the situation at Audobon is salvageable if the para is given the toosl and training she needs, or if he is given a para with the appropriate tools/training/experience to work with. I’ve sent over to the Sped teacher who supervises the para the 3 page document with tools from A. I’ve also asked for them to request more training from the school district. There is a behavior consultant on staff and I believe that if she came over and work for a couple of hours a day for a week or so, that would be helpful. There’s also a Lab setting that the school could send the para over to.
I’m going to go in next week and observe for an hour or so – try to catch the speech therapists time too. Then I’ve asked for a formal parent/teacher conference in the second half of December to review the data and see if the para has been able to gain any more instructional control over Dominic (which leads to increased verbals). We’ll talk about additional options at that point if we do not see an upward trend.
UPDATE:
I got an email back from our SPED teacher today, after receiving my email requesting more training for the Para, etc and reading A's 3 page list of suggestions. She has decided to change para's, and Dominic will now be working with a more experienced, more trained Para. Starting the Monday after Thanksgiving. I think this is excellent because instead of changing the rules for one therapist (very difficult), its a matter of setting new rules with a new therapist, who I dearly hope won't fall for his manipulations.
Her first bit of feedback was really positive. She said that oftentimes they observe in public school classrooms and see kiddo’s that are truly being neglected. That is clearly not the case here. Our teachers really WANT to work with Dominic and help him learn but they clearly do not have the training / tools / experience to. She theorized that he’s likely the only kid in this elementary school who responds so well to classical ABA as opposed to a relaxed learning environment.
So there is positive, but there’s also a lot of room for improvement. She provided immediate feedback while there, and wrote up 3 pages of suggestions for the school to try to implement to make things a bit easier.
Now the bad.
Dominic has apparently adopted a “my way or the highway” attitude at school and is being allowed to get away with it. Specifically, if he doesn’t want to do something, he flings himself on the floor and screams. A observed this occur multiple times in a few hours and was horrified because its something they’ve seen at Alpine maybe 3 times. In 17 months. We see it maybe 1-2 times a month, and honestly our way to handle it at home is to leave the room and give NO attention at all to the fit. At audobon, they’re physically lifting him off the floor and setting him the chair. We’ve seen trending at Alpine before that when compliance goes down so do verbals, so now we know why the verbals have dropped so much at Audobon – the non-compliance is out of control.
One of the things we know about Dominic is everything he does, he does for attention. Regardless of whether that attention is positive or negative – he LOVES it. So if he is non-compliant, and told NO or Stop, or Yuck – that’s attention paid to the mis behavior. Instead, they need to be offering fairly steady positive reinforcement (“thank you for listening”. “good sitting” “good walking nicely” “thank you for having nice hands”) at the rate of once every 30-60 seconds. And they need to entirely ignore and provide no attention to negative behavior. This is textbook ABA, and one of the things we know our Audobon para is not trained in. Its not her fault, she wants so much to work with him, she just doesn’t have the tools.
We are actually really horrified to realize that what’s happened – Dominic went from being really compliant in the beginning of the year (coming off of full day Alpine) to figuring out that he can control the situation at school and only do what he wants to is whats happened. And it corresponds to him being more non compliant at home too. So we’ve GOT to get the environments a bit more standardized for all of our sanity.
A believes the situation at Audobon is salvageable if the para is given the toosl and training she needs, or if he is given a para with the appropriate tools/training/experience to work with. I’ve sent over to the Sped teacher who supervises the para the 3 page document with tools from A. I’ve also asked for them to request more training from the school district. There is a behavior consultant on staff and I believe that if she came over and work for a couple of hours a day for a week or so, that would be helpful. There’s also a Lab setting that the school could send the para over to.
I’m going to go in next week and observe for an hour or so – try to catch the speech therapists time too. Then I’ve asked for a formal parent/teacher conference in the second half of December to review the data and see if the para has been able to gain any more instructional control over Dominic (which leads to increased verbals). We’ll talk about additional options at that point if we do not see an upward trend.
UPDATE:
I got an email back from our SPED teacher today, after receiving my email requesting more training for the Para, etc and reading A's 3 page list of suggestions. She has decided to change para's, and Dominic will now be working with a more experienced, more trained Para. Starting the Monday after Thanksgiving. I think this is excellent because instead of changing the rules for one therapist (very difficult), its a matter of setting new rules with a new therapist, who I dearly hope won't fall for his manipulations.
Monday, November 8, 2010
bullet points...
Quick updates, because it’s the end of the day and I only have a few minutes before I head to pick Dominic up from Alpine
- We had a chili party Saturday night and Dominic did RIDICULOUSLY well playing with his friend who came. It took him a bit of time to warm up, but by the end of the night, they were chasing each other, chasing the dog, laughing maniacally and wrestling. (gently and respectfully).
- I’ve decided to switch all our cookware to cast iron. Our nice nonstick pans are peeling. Hello Toxins. Yeah. Not so much. Next. So, I’ve been using my single cast iron skillet enough that I’m getting more comfortable with it.
- We’ve driving 11000 medical miles so far this year. (that daily back/forth to Alpine really adds up). We won’t talk about out of pocket medical expense, but it’ll be close to 3x what last year was.
- We’re arranging to send Dominic’s lead teacher at Alpine over to observe/model at Audobon next week. After having his para from Audobon at Alpine the end of October, we did NOT see an increase in verbals at Audobon last week. So that was disheartening.
- No snow yet. But its supposed to snow Thursday and be cold Friday. Friday is the annual visit for the Alpine kiddo’s at The North Pole Amusement park. Dominic LOVES this place, so I’m hoping it doesn’t get cancelled for weather.
- We’re gearing up for Thanksgiving. I’m accumulating recipes, and drooling over at the Pioneer Woman’s webpage….
- Today was our first chelator free day. We did a provoked urine test yesterday to see where his toxic metal levels are. We'll probalby give him at least a month... potentially longer.. off the chelator. Daddy's going to take him to get his allergy bloodwork done on Thursday... and then we're done with testing until January.
- We had a chili party Saturday night and Dominic did RIDICULOUSLY well playing with his friend who came. It took him a bit of time to warm up, but by the end of the night, they were chasing each other, chasing the dog, laughing maniacally and wrestling. (gently and respectfully).
- I’ve decided to switch all our cookware to cast iron. Our nice nonstick pans are peeling. Hello Toxins. Yeah. Not so much. Next. So, I’ve been using my single cast iron skillet enough that I’m getting more comfortable with it.
- We’ve driving 11000 medical miles so far this year. (that daily back/forth to Alpine really adds up). We won’t talk about out of pocket medical expense, but it’ll be close to 3x what last year was.
- We’re arranging to send Dominic’s lead teacher at Alpine over to observe/model at Audobon next week. After having his para from Audobon at Alpine the end of October, we did NOT see an increase in verbals at Audobon last week. So that was disheartening.
- No snow yet. But its supposed to snow Thursday and be cold Friday. Friday is the annual visit for the Alpine kiddo’s at The North Pole Amusement park. Dominic LOVES this place, so I’m hoping it doesn’t get cancelled for weather.
- We’re gearing up for Thanksgiving. I’m accumulating recipes, and drooling over at the Pioneer Woman’s webpage….
- Today was our first chelator free day. We did a provoked urine test yesterday to see where his toxic metal levels are. We'll probalby give him at least a month... potentially longer.. off the chelator. Daddy's going to take him to get his allergy bloodwork done on Thursday... and then we're done with testing until January.
see, we're not the only ones fighting for insurance
This post over at hopeful parents today is another mom who is dealing with a self insured insurance package...
http://www.hopefulparents.org/blog/2010/11/7/the-fight.html
keeping my fingers crossed for us....
http://www.hopefulparents.org/blog/2010/11/7/the-fight.html
keeping my fingers crossed for us....
Wednesday, November 3, 2010
Dr K appointment
We had an excellent appointment. In the 2 1/2 months since we last saw him, Dominic has gained 2 1/2 pounds (i knew he was eating a lot), AND grown an inch. He's now up to 47.5lbs and 46in. Overall, Dr K is thrilled with how Dominic is doing and fully supports our decision to do another high intensity round of HBOT before we go to maintenance. We start our high intensity HBOT in December.
We talked about the behavior side effects of the chelex, and are theorizing that its a result of the high load of garlic (which he's moderately IgG allergic to). We will finish this week w/Chelex to give us 5 weeks, and do a provoked toxic metals urine collection this weekend. Then we are stopping chelex for a few weeks (he said 2, I'm thinking we'll just stop for the remainder of November) and see what happens with the behaviors. if they decline, we won't readd it, instead we'll look at the toxic metals results and decide if we should try the next in line, straight EDTA. Next weekend, we'll go have the blood drawn for a fresh food allergy panel to see what we see. Its been almost 2 years since the last one anyway.
We're tweaking supplements a little - increasing Vit D3 to 3000iu per day, removing Olive oil and adding a different fish oil (on top of the cod liver oil). We're going to up the DMG to 250mg/day from 125. We'll do all three of these starting this weekend and get him stabled out on them this month. Then December we will add in Neuroprotek and make no other supplement changes. Anecdotal reports from the internet are saying people see reesults in the first couple of weeks of better focus, better eye contact, fewer stims.
Jan 1, we'll do another NutraEval test, and mid Feb, we'll see Dr K again to review how we're doing.
We talked about the behavior side effects of the chelex, and are theorizing that its a result of the high load of garlic (which he's moderately IgG allergic to). We will finish this week w/Chelex to give us 5 weeks, and do a provoked toxic metals urine collection this weekend. Then we are stopping chelex for a few weeks (he said 2, I'm thinking we'll just stop for the remainder of November) and see what happens with the behaviors. if they decline, we won't readd it, instead we'll look at the toxic metals results and decide if we should try the next in line, straight EDTA. Next weekend, we'll go have the blood drawn for a fresh food allergy panel to see what we see. Its been almost 2 years since the last one anyway.
We're tweaking supplements a little - increasing Vit D3 to 3000iu per day, removing Olive oil and adding a different fish oil (on top of the cod liver oil). We're going to up the DMG to 250mg/day from 125. We'll do all three of these starting this weekend and get him stabled out on them this month. Then December we will add in Neuroprotek and make no other supplement changes. Anecdotal reports from the internet are saying people see reesults in the first couple of weeks of better focus, better eye contact, fewer stims.
Jan 1, we'll do another NutraEval test, and mid Feb, we'll see Dr K again to review how we're doing.
Subscribe to:
Posts (Atom)