This week has been crazy! Adjusting to an increasing work load at work, working with a new boss, adapting to hubby's long commute and less availability to shuttle kids places, attempting to finalize our loan so that we can close on the house, complying with Elise's new doctor's advice, worrying about Elise's school situation, saying goodbye to my favorite boss, just a busy time. Basically, all is really good right now, just hectic.
Elise has had a good week. She is still on her antibiotic. 7 more doses to go. I can't wait to finish because she really hates taking this medicine and I hate making her take something she hates. She seems to be feeling well. Initially she became odd after starting the antibiotic, as she usually does on antibiotics. However, about 4 days ago, her stimming returned to normal and she's been doing well. We've dropped her Abilify back to .4ml from .45ml. Provided all is going well, we'll adjust it back to .35 ml next week.
I picked up the forms Elise's babysitter and I will need to complete to volunteer in the classroom. Both of us need to have TB tests before we can volunteer. I'd like to have that done early next week. The week after next, I'm volunteering in A's classroom for an hour. A is still young enough that he's excited to have mom come to his class. I'll enjoy that while it lasts. I'm hoping to get some doctor appointments scheduled that same day so that I just take the whole day off work and minimize time I'll need off work in the future. I have my ERCP test scheduled for 2/21 and that should be the absolute last of this whole gallbladder/stone fiasco. I'm not looking forward to another hospital day though.
Elise's DTT supervisor observed her in class last Monday. She said that Elise did ok but that she really needs an aide. No disagreement on our part. She thinks having Elise's babysitter attend with Elise would be wonderful. We'll see how it goes. Babysitter is willing to do this, but if it makes her uncomfortable or anything, then it won't work. I do find Elise's teacher to be odd. She's incredibly stuck on the fact that we're not sending Elise 5 days per week. When Elise's DTT supervisor asked whether she could help the teacher with any problem behaviors Elise may be exhibiting, the teacher didn't really ask for help, she just asked whether Elise's home schedule could be rearranged so that Elise was in school 5 days per week. The supervisor explained that it was the parent's decision so the teacher would have to talk to us about this. Kind of irritating that she's not letting this drop. She even told me how most of the kids had a better, more even mix of school & home based therapy. I smiled and said that we felt Elise had proven she learns best in her home based program so that we were not going to reduce that. Inside, I was smoldering because I wanted to lash out and say "The other parents weren't blessed with the gift of 30 hours per week from Regional Center and if they were, they wouldn't have to send their 3-4 year olds to school so many hours each week." Just sayin...
So, I'm trying to keep an open mind to this school thing, but it's not easy. Time will tell. The positive thing is that Elise seems to be happy when I drop her off and happy when the babysitter picks her up. I'd assume this means she likes school. There are two little girls in her glass who really like her. They give her hugs each morning and like to help her. She appears not to pay attention to them, but I can tell by seeing her eyes laugh and by her little quiet smirk that it makes her really happy. That my friends is the crux of the reason that I do NOT want her in an autism only classroom . This would never happen in an autism class.
Friday, January 28, 2011
Sunday, January 23, 2011
More News
Elise has been busy the last few weeks. She had a doctor visit with her neuropsychiatrist a couple of weeks ago. It was ok, but it's becoming a lot of money to spend for not a lot of support. It seems that Elise is basically on maintenance at this time with her and we're still hoping for much more significant progress. I don't think the doctor is doing anything wrong, I just think we've gone as far as we can go with her at this time. We need to shake things up a bit and continue our quest for answers. In comes her next appointment with an area pediatrician who has spent the last 12 years specializing into hypothesizing a link between autism and neuro-immune disease processes.
I've been interested in this doctor for a few months now. I may have mentioned it in the past, but I spent quite a bit of time putting together a history and records for him to review prior to this appointment. The appointment was very long (3 hours) and very thorough. Unfortunately, hubby was unable to attend as he had a crucial meeting at work at the same time. The doctor wants to make some fairly significant changes for Elise. He has a do's & don'ts of diet that we should be implementing. It's not much different from what we already do, just eliminating whole wheat products and almond milk are the biggest challenges we'll have. We're also trying to move lighter on carbs and increase her protein & vegetable intake. Some of the things are quite different from what we've been told before, so hubby is questioning it. Since it's not harmful and we're somewhat there already, I think we should just get creative and come up with some new meal ideas that meet this criteria. We'll see. I switched to a potato bread last week and my kids told me that they don't like white bread. So funny, they only like the whole grain wholesome stuff.
Elise had a cold when we went to this doctor. When he checked her ears, he saw fluid built up and she had been whiny and tugging at that ear. Therefore, he put her on an antibiotic for 14 days. As I've mentioned before, Elise gets odd acting on antibiotics, so of course, she's been having more episodes of hilarity, is stimming more and is less attentive. However, she's not hurting any longer and is sleeping better. She had blood drawn at the office and we go back on Feb 11 to discuss the results. She also has a prescription for Valtrex. I want to know more about this before I give it to her. We'll have to have more pointed questions for the Feb 11 appointment. It was a lot to take in at the first appointment. I'm trying to get hubby to spend time listening to some of the presentations this doctor has done. I'd also like my neurobiologist friend to listen to some of them so that I can get her opinion whether the hypothesis makes sense at all. However, she's had 2 deaths in the family this week, so this is NOT the appropriate time to ask this favor. It's hard to believe that people have larger concerns beyond the health of my child - I'm being sarcastic, of course.
Elise has been back to school for the last two weeks. She has been mainly without support in the classroom and, surprise, it's not going all that well. Hmmmm....isn't this what hubby and I knew all along? The child needs an aide if she's going to succeed in the least restrictive environment. We're going to request a behavioral assessment be performed in the new school setting. This may help in our quest to get adequate support for Elise. In the meantime, the teacher seems none to pleased to have Elise as part of her class. She told me on Friday that she felt Elise was too severe for this classroom and that it wasn't an appropriate setting. This made me really angry as it was first of all said in front of Elise and second of all, not true. You can't judge a poor child who has been shoved into a new classroom and an entirely new enviroment where all the other children have been adjusting since September, take away her aide support and expect her to succeed in only 4 classes. Get real. Give her a chance. To be honest, Elise easily appears to have more challenges than the other 8 children in the class. However, it is an aphasia classroom and entirely appropriate for a child with a severe communication disorder. Also, Elise had a comprehensive, very comprehensive, assessment in the fall that determined this exact classroom was the most appropriate fit for her. Grrrr....
To resolve all of this, we are doing the following:
I've been interested in this doctor for a few months now. I may have mentioned it in the past, but I spent quite a bit of time putting together a history and records for him to review prior to this appointment. The appointment was very long (3 hours) and very thorough. Unfortunately, hubby was unable to attend as he had a crucial meeting at work at the same time. The doctor wants to make some fairly significant changes for Elise. He has a do's & don'ts of diet that we should be implementing. It's not much different from what we already do, just eliminating whole wheat products and almond milk are the biggest challenges we'll have. We're also trying to move lighter on carbs and increase her protein & vegetable intake. Some of the things are quite different from what we've been told before, so hubby is questioning it. Since it's not harmful and we're somewhat there already, I think we should just get creative and come up with some new meal ideas that meet this criteria. We'll see. I switched to a potato bread last week and my kids told me that they don't like white bread. So funny, they only like the whole grain wholesome stuff.
Elise had a cold when we went to this doctor. When he checked her ears, he saw fluid built up and she had been whiny and tugging at that ear. Therefore, he put her on an antibiotic for 14 days. As I've mentioned before, Elise gets odd acting on antibiotics, so of course, she's been having more episodes of hilarity, is stimming more and is less attentive. However, she's not hurting any longer and is sleeping better. She had blood drawn at the office and we go back on Feb 11 to discuss the results. She also has a prescription for Valtrex. I want to know more about this before I give it to her. We'll have to have more pointed questions for the Feb 11 appointment. It was a lot to take in at the first appointment. I'm trying to get hubby to spend time listening to some of the presentations this doctor has done. I'd also like my neurobiologist friend to listen to some of them so that I can get her opinion whether the hypothesis makes sense at all. However, she's had 2 deaths in the family this week, so this is NOT the appropriate time to ask this favor. It's hard to believe that people have larger concerns beyond the health of my child - I'm being sarcastic, of course.
Elise has been back to school for the last two weeks. She has been mainly without support in the classroom and, surprise, it's not going all that well. Hmmmm....isn't this what hubby and I knew all along? The child needs an aide if she's going to succeed in the least restrictive environment. We're going to request a behavioral assessment be performed in the new school setting. This may help in our quest to get adequate support for Elise. In the meantime, the teacher seems none to pleased to have Elise as part of her class. She told me on Friday that she felt Elise was too severe for this classroom and that it wasn't an appropriate setting. This made me really angry as it was first of all said in front of Elise and second of all, not true. You can't judge a poor child who has been shoved into a new classroom and an entirely new enviroment where all the other children have been adjusting since September, take away her aide support and expect her to succeed in only 4 classes. Get real. Give her a chance. To be honest, Elise easily appears to have more challenges than the other 8 children in the class. However, it is an aphasia classroom and entirely appropriate for a child with a severe communication disorder. Also, Elise had a comprehensive, very comprehensive, assessment in the fall that determined this exact classroom was the most appropriate fit for her. Grrrr....
To resolve all of this, we are doing the following:
- Sending Elise's DTT supervisor to observe her in the classroom so that we can have a better understanding of what may help her.
- Asking the school to perform a behavioral assessment in the new classroom setting.
- Working to see if nanny (who volunteered to go to school with Elise prior to all this) can spend time in the classroom to facilitate Elise, basically as her aide. The teacher is open to her volunteering in the class. This should help tremendously since having her nanny would be better than having a school assigned aide. She knows exactly what Elise is capable of doing, she is extremely patient yet firm with her and she has watched the home DTT for months now and is very familiar with all the behavioral interventions.
We'll see what becomes of all this.
Outside of this, not much has been happening. We're closing on our new home on the 31st of this month. We'll have to quickly schedule some of the work that needs to be done and then we can move - hooray. We have already provided our 30 day notice to the landlord and we're out of here by the 17th of February. I can't wait!
Saturday, January 8, 2011
Put a Bow on It
Things have been going great and are all fitting together into a nice little package. It's like all the hard work of the last couple of years is finally paying off. Elise is steadily improving, her school situation will hopefully be stable and great, my health is fantastic, A loves school, B is doing well, hubby is enjoying work and doing well with it, my latest boss is understanding and allows me to have time flexibility at work without hassling me & we are finally buying a great house of our own. I'd say it all seems too good to be true, but I don't want to be a pessimist. I'm forcing myself to just enjoy and revel in it all instead of analyzing it.
We've been really busy since my last post. We went "home" for the holidays and had a fantastic time. I really miss all of our friends and family there. It's just out of the question to move until Elise is done with the benefits of ABA/DTT services. It's all helping her so much and it's free for us. It's not like we could afford equal elsewhere.
We've been really busy since my last post. We went "home" for the holidays and had a fantastic time. I really miss all of our friends and family there. It's just out of the question to move until Elise is done with the benefits of ABA/DTT services. It's all helping her so much and it's free for us. It's not like we could afford equal elsewhere.
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