I brought the boys up to see Sarge at Active Healing for their first full re-evaluation which he does every 4 months. There were some improvements in certain things which was very good to see. I look forward to reading his full report.
Harry has been having a rough time lately. I asked him how he was feeling on his new dosage of Concerta (we went from 18/27mg to 36mg at Xmas). He had previously reported he felt better, but now he said he feels worse. We decided to try just 18mg the next day and he said he felt better. We've stayed with that dose for the last few days and he seems to feel better. Because it has been wearing off more obviously in the afternoon and he has been having a hard time doing his homework without it, we added in a 5mg booster of short-acting Ritalin after school the last couple of days. It seems to work really well, he stays calmer and did his homework much more easily.
I have been in touch with the pediatrician about these things and he agreed with the change. I also asked him about trying something for Harry's anxiety which seems to be affecting him more and more. I don't like adding another medication, but maybe something to help get him over this rough patch. I'm waiting to hear back from the doctor, hopefully today.
Harry's teacher asked me if I would come in and observe him in class. That can't be good... I am going to do that next week, I'm not sure what she expects me to see. I'm starting to think I should ask the school to do a full core evaluation for him. Maybe his difficulties are coming from a measurable learning disability and he was able to compensate for it until now (now that the work is getting more difficult). I'm not sure his teacher knows much about all this, it's only her 3rd year teaching. Maybe she's never had a 2e kid before. If it can be clearly shown and documented maybe he can move to an IEP and we can get him more accomodations.
Tom has been taking his new adhd medication for 2 weeks and while his PT and I don't really see much difference, his teacher reports an improvement in his ability to stay in his seat and focus a little better. I'm glad there's an improvement, but still hope for more. Thankfully there have been no adverse effects. The neurologist said to increase the dose so we will try that tomorrow.
Tom will have more school testing done in another week and we will hopefully discover more about his learning difficulties and get him more help. Maybe he can benefit from special ed at this point, I don't know. I wonder at what point do kids qualify for an aide in the classroom? I think I've heard of an aide being shared between a few kids, I'm not sure. I wonder how he would do with someone keeping him on track.
Things have been rough for a few weeks, but hopefully are starting to turn around now.
Friday, January 28, 2011
Tuesday, January 18, 2011
January update
It's been a while since I posted, I've been feeling a little overwhelmed. We are following the NR program and seeing some improvements in their forms. I feel guilty because we are only averaging therapy about 4 times a week, instead of daily. Although they don't actively fight it, they do moan and groan. Doing the work with them (especially Tom) is so frustrating for me, sometimes I just can't muster the energy. We will see Sarge at the end of the month for a re-evaluation and program update. I need to shake off this funk and get motivated again.
We are having difficulties with Harry's teacher and team at school. He hates school and his work is sloppy and careless. He is so bright, but can't seem to utilize it (classic dysgraphia). I don't think his teacher 'gets' him at all and she seems unwilling to bend her teaching agenda to accommodate him. With his input they are creating a school contract which I think will be helpful.
After seeing the pediatrician just before Xmas we increased Harry's Concerta dose with positive results. In the Dr's office he was unable to sit still and focus and was (literally!) climbing the wall. I didn't realize he was still so impulsive on medication, but he seems calmer and says he feels better on the higher dose.
He also shows a lot of anxiety symptoms which I worry about. Sarge believes this will be greatly relieved once we get to work on integrating the Moro reflex. We have to hang in there until he's ready for that work, but I have high hopes for improvements once we get there.
I met with Tom's teacher and she told me how he is struggling academically in class. He is very sweet and has lots of friends, but he avoids work whenever possible. The little stinker even had some of his classmates doing his worksheets for him! His work and penmanship especially has taken a nosedive since the Xmas break. She sees a lot of inattention and adhd symptoms and we're seeing a lot of this at home, too. The teacher wants to have more tests done to see if he can start receiving special ed. It makes me sad that he needs it, but glad to get him whatever help we can. She can see that he is bright and doesn't think he'll need it forever, just until he is able to work on his own. In my opinion, he is very smart, but just can't seem to easily access or output the information. How sad and frustrating for him.
After talking with the teacher I contacted the neurologist who we saw in Nov and are scheduled to see again in May. I asked him about a possible medication trial for Tom and we went in to see him last week. He agreed that we have been conservative so far and a med trial is a sensible option. Tom cannot swallow pills (I have tried working with him on it, but it seems to be a sensory problem he just can't handle) so the Dr wrote a Rx for Metadate. You can open the capsule and sprinkle the little beads on food. He has done very well taking it with a spoonful of yogurt.
The first day at home I noticed a subtle overall calming of his body. His teacher had a great report after his first day on medication:
"There was a marked difference in Tom today. I gave a math test at the end of the day and he was able to follow along. His handwriting was also neater. Tom still had his toys in his hands but he handled them better. He aso participated in a discussion about Venn diagrams. I'm interested to see how he does with guided reading on Tuesday."
I was really happy to hear this and can't wait to hear another report after a couple more days at school, however I didn't really see much behavior improvement this past weekend. After my recent experience with Harry's medication I wonder how do you find that "sweet spot" where you get the most benefit from medication without the negatives? I am supposed to report back to the neurologist after a week and I am going to ask him this.
I am sad that we have to take the next step to medication with Tom, but he is just not able to succeed in school at this point in time and it may make a big difference. My hope is that medication (for both boys) will just be a crutch until the NR therapy resolves their issues and they no longer need it.
We are having difficulties with Harry's teacher and team at school. He hates school and his work is sloppy and careless. He is so bright, but can't seem to utilize it (classic dysgraphia). I don't think his teacher 'gets' him at all and she seems unwilling to bend her teaching agenda to accommodate him. With his input they are creating a school contract which I think will be helpful.
After seeing the pediatrician just before Xmas we increased Harry's Concerta dose with positive results. In the Dr's office he was unable to sit still and focus and was (literally!) climbing the wall. I didn't realize he was still so impulsive on medication, but he seems calmer and says he feels better on the higher dose.
He also shows a lot of anxiety symptoms which I worry about. Sarge believes this will be greatly relieved once we get to work on integrating the Moro reflex. We have to hang in there until he's ready for that work, but I have high hopes for improvements once we get there.
I met with Tom's teacher and she told me how he is struggling academically in class. He is very sweet and has lots of friends, but he avoids work whenever possible. The little stinker even had some of his classmates doing his worksheets for him! His work and penmanship especially has taken a nosedive since the Xmas break. She sees a lot of inattention and adhd symptoms and we're seeing a lot of this at home, too. The teacher wants to have more tests done to see if he can start receiving special ed. It makes me sad that he needs it, but glad to get him whatever help we can. She can see that he is bright and doesn't think he'll need it forever, just until he is able to work on his own. In my opinion, he is very smart, but just can't seem to easily access or output the information. How sad and frustrating for him.
After talking with the teacher I contacted the neurologist who we saw in Nov and are scheduled to see again in May. I asked him about a possible medication trial for Tom and we went in to see him last week. He agreed that we have been conservative so far and a med trial is a sensible option. Tom cannot swallow pills (I have tried working with him on it, but it seems to be a sensory problem he just can't handle) so the Dr wrote a Rx for Metadate. You can open the capsule and sprinkle the little beads on food. He has done very well taking it with a spoonful of yogurt.
The first day at home I noticed a subtle overall calming of his body. His teacher had a great report after his first day on medication:
"There was a marked difference in Tom today. I gave a math test at the end of the day and he was able to follow along. His handwriting was also neater. Tom still had his toys in his hands but he handled them better. He aso participated in a discussion about Venn diagrams. I'm interested to see how he does with guided reading on Tuesday."
I was really happy to hear this and can't wait to hear another report after a couple more days at school, however I didn't really see much behavior improvement this past weekend. After my recent experience with Harry's medication I wonder how do you find that "sweet spot" where you get the most benefit from medication without the negatives? I am supposed to report back to the neurologist after a week and I am going to ask him this.
I am sad that we have to take the next step to medication with Tom, but he is just not able to succeed in school at this point in time and it may make a big difference. My hope is that medication (for both boys) will just be a crutch until the NR therapy resolves their issues and they no longer need it.
Saturday, November 20, 2010
Teacher didn't know he has an IEP!
At the end of kindergarten last year Tom moved from a 504 plan to an IEP. In it he continues to receive PT & OT twice a week and more classroom accomodations and understanding of his issues were added.
We had our parent-teacher conference yesterday with his 1st grade teacher. She is amazing and we are so thrilled to have her again (she was Harry's first grade teacher, too). She just loves Tom and makes some nice accomodations for him, often in association with the OT. As we talked I mentioned something about his IEP. She didn't know he had one! She didn't have any paperwork on the IEP or copies of any of the testing that was done last year.
Honestly, she is so great that she has already been doing a lot for him to be successful and at first in the meeting I didn't make a big deal about it. But as the day went on I began to realize what a big frickin' deal this is. Because he's been getting the PT & OT since school started, I automatically assumed the IEP was in place. (won't make that mistake again)
She also gave us a note from the gym teacher. She said he is starting a new thing where if he has a child in danger of getting a 'check minus' on their report card then he gives a performance update as a kind of warning.
"In PE class, students are graded on their performance based on our daily participation contract. All students receive a check at the end of class, unless they fail to follow the class rules and expectations. Students who fail to follow class rules or expectations receive one or more numbers to identify the poor performance. The numbers are as follows:
1. not listening, paying attention, or respectful to others or teacher
2. not understanding the task, attempting the task correctly, or following directions
3. blah 4. blah 5. blah
This term, your child has received several 1s and 2s. Please speak to your child about this as it is my goal for all students to succeed in PE. I send this notice to make you aware of your child's performance in PE and to encourage his improvement over the next term. Feel free to contact me blah blah blah..."
Seriously!?! My son struggles to walk down stairs one foot at a time and he's going to 'fail' gym?!
1 - he has documented attention problems
2 - he has extremely poor motor planning ability and can't do most gym activities easily
The classroom teacher said he probably doesn't know about the IEP. If I find out that he made my son feel badly or singled out in any way because of his motor problems I am going to go postal. As if my son doesn't already know he's different that way.
I sent a strongly worded email this afternoon to the IEP coordinator we dealt with last year and copied the teacher, gym teacher, OT, PT and asst. principal/school counselor. (I made sure to praise the teacher) I'm curious what their response will be.
We had our parent-teacher conference yesterday with his 1st grade teacher. She is amazing and we are so thrilled to have her again (she was Harry's first grade teacher, too). She just loves Tom and makes some nice accomodations for him, often in association with the OT. As we talked I mentioned something about his IEP. She didn't know he had one! She didn't have any paperwork on the IEP or copies of any of the testing that was done last year.
Honestly, she is so great that she has already been doing a lot for him to be successful and at first in the meeting I didn't make a big deal about it. But as the day went on I began to realize what a big frickin' deal this is. Because he's been getting the PT & OT since school started, I automatically assumed the IEP was in place. (won't make that mistake again)
She also gave us a note from the gym teacher. She said he is starting a new thing where if he has a child in danger of getting a 'check minus' on their report card then he gives a performance update as a kind of warning.
"In PE class, students are graded on their performance based on our daily participation contract. All students receive a check at the end of class, unless they fail to follow the class rules and expectations. Students who fail to follow class rules or expectations receive one or more numbers to identify the poor performance. The numbers are as follows:
1. not listening, paying attention, or respectful to others or teacher
2. not understanding the task, attempting the task correctly, or following directions
3. blah 4. blah 5. blah
This term, your child has received several 1s and 2s. Please speak to your child about this as it is my goal for all students to succeed in PE. I send this notice to make you aware of your child's performance in PE and to encourage his improvement over the next term. Feel free to contact me blah blah blah..."
Seriously!?! My son struggles to walk down stairs one foot at a time and he's going to 'fail' gym?!
1 - he has documented attention problems
2 - he has extremely poor motor planning ability and can't do most gym activities easily
The classroom teacher said he probably doesn't know about the IEP. If I find out that he made my son feel badly or singled out in any way because of his motor problems I am going to go postal. As if my son doesn't already know he's different that way.
I sent a strongly worded email this afternoon to the IEP coordinator we dealt with last year and copied the teacher, gym teacher, OT, PT and asst. principal/school counselor. (I made sure to praise the teacher) I'm curious what their response will be.
Thursday, November 18, 2010
Neurologist report
I received the follow up letter from the neurologist regarding Tom's appt last week.
[snip]
I had the pleasure of seeing Tom in the office at Children's Hospital Boston for a follow-up neurologic visit on Nov 8th. As you recollect, he is a young man with some mild developmental difficulties, which include problems with motor coordination probably best fitting under the rubric of a mixed dyspraxic disorder and an adventitiously discovered small syrinx in the spinal cord T7-10 roughly 2.6mm. He has a slightly thickened filum without other evidence of tethering.
Over the interval since I saw him last, the family has become engaged in "active healing" an alternative method of therapy which is involved in "ontogenetic development". He is engaged in rather intensive therapy along these lines and it appears that he is better as a result of this.
On examination today while he still did not pass the Berges-Lezine Battery of Manual Praxis he did better than the last visit and also did better on the oral diadochokinesis rates of the Mayo Clinic Battery. His gaits are reasonably well organized, but he still has mild dystonic posturing bilaterally. The elemental neurological examination shows no change.
At this point in time, I would make no further interventions. I will see him again in six months, sooner should other concerns arise. [/snip]
So I'd say that's pretty good since he's seeing some positive changes and we've been doing NR for less than 2 months :)
[snip]
I had the pleasure of seeing Tom in the office at Children's Hospital Boston for a follow-up neurologic visit on Nov 8th. As you recollect, he is a young man with some mild developmental difficulties, which include problems with motor coordination probably best fitting under the rubric of a mixed dyspraxic disorder and an adventitiously discovered small syrinx in the spinal cord T7-10 roughly 2.6mm. He has a slightly thickened filum without other evidence of tethering.
Over the interval since I saw him last, the family has become engaged in "active healing" an alternative method of therapy which is involved in "ontogenetic development". He is engaged in rather intensive therapy along these lines and it appears that he is better as a result of this.
On examination today while he still did not pass the Berges-Lezine Battery of Manual Praxis he did better than the last visit and also did better on the oral diadochokinesis rates of the Mayo Clinic Battery. His gaits are reasonably well organized, but he still has mild dystonic posturing bilaterally. The elemental neurological examination shows no change.
At this point in time, I would make no further interventions. I will see him again in six months, sooner should other concerns arise. [/snip]
So I'd say that's pretty good since he's seeing some positive changes and we've been doing NR for less than 2 months :)
Sunday, November 14, 2010
DS2 Therapy 11/14/10
Here's Tom doing his crawling and SIR. You can see that his feet still point up when crawling on his belly, but he's come a long way from where he first started. At first he wanted no part of doing the SIR (as opposed to Harry who was all over it at Sarge's office), but Tom is being quite adventurous by doing this much and he likes it (despite his squawking).
DS1 Therapy 11/14/10
Here's Harry doing his crawling on his belly and SIR (I guess suspended inverted rotation sounds better than 'upside-down hanging spinning swinging thing') He has started crawling with only one leg and insists his way is fine when I ask him to use both. He doesn't want to hear it from me so I'll let Sarge deal with that one.
Some good, some bad
The NR program is going well, we're getting in a good therapy session most days and the boys aren't fighting it. Sometimes they whine about doing all the crawling and want to not do all 12 laps, but we get through it. We finally got the winch and chains set up to do SUSPENDED INVERTED ROTATION per Sarge's instructions. It sounds so crazy, but the boys love it. We have heavy-duty straps that wrap around their feet and ankles, we hook the straps to a chain and then hoist them up so they're hanging upside-down. From there we can push them so they swing and spin and they can also touch the floor with their hands (depending on how high they are) and push and spin themselves. I'll have to take and post a video so you can see - it's pretty cool.
DS1:
He has been very unhappy and frustrated with school and it's getting worse. He hates that he has to go to school which wastes his time, he already knows everything and how can they add homework on top of everything else. He would like to beat up whoever invented school and if he were in Congress, he would outlaw school. sigh...
I recently asked his school for a reduced handwriting accomodation for his 504 plan and we were working towards getting the plan worked out via email. The school psychologist then contacted me to say she was seeing some of the sadness and frustration I had previously told her about and she is concerned and suggested we have a 504 review meeting. So we met last week with the teacher, gifted teacher, OT, mom, dad, DS1's psychologist and the 504 coordinator. It was great to have all these people together and wanting to help Harry, but it was also sad to hear how he is so bright, but struggling. It's not the academics, it's his frustration, anxiety, difficulty trying something new and lack of close friendships. He gets along fine with his classmates, but often chooses to read a book or do his own thing instead of really engaging with the other kids. The outcome of the meeting is that he can type anything longer than 2 paragraphs, but, more importantly, they will have a better understanding of how and why some things are hard for him thanks to the wonderful input from our psychologist. He's just awesome and really 'gets' my son. He's an older man with lots of experience with kids like him and working with schools.
We explained the NR program we're doing and our hopes that it will begin to help Harry with these problems in time. We are going to have him start seeing the psychologist more regularly since he seems to need that kind of support right now.
DS2:
He's doing well with his program and ok in school. He's learning to read which is great. He does show some dyslexic tendencies - like saying "Cam" when reading "Mac" and flipping his letters and numbers at times - but I'm not going to worry about that right now.
Tom had a follow-up appointment with the neurologist last week which went well. We saw him over the summer for the first time as we were transferring to him from a previous neurologist we were unhappy with. At that appt looked over Tom's case so far, did a quick evaluation and suggested we take a "wait and see approach" and meet again a few months into the school year.
The appointment was quick - we gave him information about NR and Active Healing and he checked out Tom. He said NR was not well-known and not validated by research and double-blind controlled studies, but that it certainly can't hurt to try. (I'm not sure how you could do a controlled study for NR since it's so subjective for each person) He said he saw some nice improvements which was great to hear. He did this test of motor planning where the Dr would put his own hands into a certain position and then ask Tom to copy it. He did different ones getting progressively harder and my son did much better than before. He didn't have anything to offer us regarding therapy or suggestions and wants to see him again in 6 months. This will be another great way to see if the NR program is working.
DS1:
He has been very unhappy and frustrated with school and it's getting worse. He hates that he has to go to school which wastes his time, he already knows everything and how can they add homework on top of everything else. He would like to beat up whoever invented school and if he were in Congress, he would outlaw school. sigh...
I recently asked his school for a reduced handwriting accomodation for his 504 plan and we were working towards getting the plan worked out via email. The school psychologist then contacted me to say she was seeing some of the sadness and frustration I had previously told her about and she is concerned and suggested we have a 504 review meeting. So we met last week with the teacher, gifted teacher, OT, mom, dad, DS1's psychologist and the 504 coordinator. It was great to have all these people together and wanting to help Harry, but it was also sad to hear how he is so bright, but struggling. It's not the academics, it's his frustration, anxiety, difficulty trying something new and lack of close friendships. He gets along fine with his classmates, but often chooses to read a book or do his own thing instead of really engaging with the other kids. The outcome of the meeting is that he can type anything longer than 2 paragraphs, but, more importantly, they will have a better understanding of how and why some things are hard for him thanks to the wonderful input from our psychologist. He's just awesome and really 'gets' my son. He's an older man with lots of experience with kids like him and working with schools.
We explained the NR program we're doing and our hopes that it will begin to help Harry with these problems in time. We are going to have him start seeing the psychologist more regularly since he seems to need that kind of support right now.
DS2:
He's doing well with his program and ok in school. He's learning to read which is great. He does show some dyslexic tendencies - like saying "Cam" when reading "Mac" and flipping his letters and numbers at times - but I'm not going to worry about that right now.
Tom had a follow-up appointment with the neurologist last week which went well. We saw him over the summer for the first time as we were transferring to him from a previous neurologist we were unhappy with. At that appt looked over Tom's case so far, did a quick evaluation and suggested we take a "wait and see approach" and meet again a few months into the school year.
The appointment was quick - we gave him information about NR and Active Healing and he checked out Tom. He said NR was not well-known and not validated by research and double-blind controlled studies, but that it certainly can't hurt to try. (I'm not sure how you could do a controlled study for NR since it's so subjective for each person) He said he saw some nice improvements which was great to hear. He did this test of motor planning where the Dr would put his own hands into a certain position and then ask Tom to copy it. He did different ones getting progressively harder and my son did much better than before. He didn't have anything to offer us regarding therapy or suggestions and wants to see him again in 6 months. This will be another great way to see if the NR program is working.
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