Re: Therapy and older kids

[Guest guest]

I do not know how well Chance communicates, but maybe you can get his feelings on it. If he enjoys going, it may not be helping his speech, but more self esteem. If he really hates going, and fights to go, maybe it's not the best idea to do. This must be a hard issue for you. But really you must do what's best for Chance and you. Ultimately, you guys are the ones benefiting from this.

[Guest guest]

I do not know how well Chance communicates, but maybe you can get his feelings on it. If he enjoys going, it may not be helping his speech, but more self esteem. If he really hates going, and fights to go, maybe it's not the best idea to do. This must be a hard issue for you. But really you must do what's best for Chance and you. Ultimately, you guys are the ones benefiting from this.

[Guest guest]

I do not know how well Chance communicates, but maybe you can get his feelings on it. If he enjoys going, it may not be helping his speech, but more self esteem. If he really hates going, and fights to go, maybe it's not the best idea to do. This must be a hard issue for you. But really you must do what's best for Chance and you. Ultimately, you guys are the ones benefiting from this.

[Guest guest]

Hey Kass,

I feel your pain, been there, done that. A therapist with an open mind and compassion for the mom is just as important as the therapy itself.

School therapy here basically stinks - the only reason in my opinion they even pursue it more now is to received Medicaid money. School therapy is just to get by for school and therapy outside the school is for rehabilitation.

J.D. is 16 and I would say from Chance age now until 14 or 15, the right kind of therapy is so important.

The biggest problem with therapy is how the laws are written, to improve. Our kids need therapy to maintain. The wrong therapist can also damage if they give too much therapy. You are the mom, you have every right to be there when Chance is receiving services.

Two years ago, J.D.'s ortho dr said that if he did not have the heel-cord lengthening again, he would not be walking now. Well, between his managing dr and me, we did not want to be that invasive which from the surgery itself could have a setback. With my persistence, the dr wrote orders for ultra-sound therapy. It is working. I found out that once the dr writes the orders that the therapist has to follow it whether he/she agrees or not. Also, it helps to talk with someone from the insurance side to better under the mito.

J.D. had a speech therapist in a meeting that said she could do nothing about speech if it was a fatigue problem. She cannot do anything about the fatigue problem but "good" speech therapy helps him from sliding into a pattern where someone cannot understand him. We now get a good speech teacher at the home once a month.

Hopes this helps. Take a deep breath and get a good nights sleep and tackle it in the morning.

Darlene

[Guest guest]

Hey Kass,

I feel your pain, been there, done that. A therapist with an open mind and compassion for the mom is just as important as the therapy itself.

School therapy here basically stinks - the only reason in my opinion they even pursue it more now is to received Medicaid money. School therapy is just to get by for school and therapy outside the school is for rehabilitation.

J.D. is 16 and I would say from Chance age now until 14 or 15, the right kind of therapy is so important.

The biggest problem with therapy is how the laws are written, to improve. Our kids need therapy to maintain. The wrong therapist can also damage if they give too much therapy. You are the mom, you have every right to be there when Chance is receiving services.

Two years ago, J.D.'s ortho dr said that if he did not have the heel-cord lengthening again, he would not be walking now. Well, between his managing dr and me, we did not want to be that invasive which from the surgery itself could have a setback. With my persistence, the dr wrote orders for ultra-sound therapy. It is working. I found out that once the dr writes the orders that the therapist has to follow it whether he/she agrees or not. Also, it helps to talk with someone from the insurance side to better under the mito.

J.D. had a speech therapist in a meeting that said she could do nothing about speech if it was a fatigue problem. She cannot do anything about the fatigue problem but "good" speech therapy helps him from sliding into a pattern where someone cannot understand him. We now get a good speech teacher at the home once a month.

Hopes this helps. Take a deep breath and get a good nights sleep and tackle it in the morning.

Darlene

[Guest guest]

Hey Kass,

I feel your pain, been there, done that. A therapist with an open mind and compassion for the mom is just as important as the therapy itself.

School therapy here basically stinks - the only reason in my opinion they even pursue it more now is to received Medicaid money. School therapy is just to get by for school and therapy outside the school is for rehabilitation.

J.D. is 16 and I would say from Chance age now until 14 or 15, the right kind of therapy is so important.

The biggest problem with therapy is how the laws are written, to improve. Our kids need therapy to maintain. The wrong therapist can also damage if they give too much therapy. You are the mom, you have every right to be there when Chance is receiving services.

Two years ago, J.D.'s ortho dr said that if he did not have the heel-cord lengthening again, he would not be walking now. Well, between his managing dr and me, we did not want to be that invasive which from the surgery itself could have a setback. With my persistence, the dr wrote orders for ultra-sound therapy. It is working. I found out that once the dr writes the orders that the therapist has to follow it whether he/she agrees or not. Also, it helps to talk with someone from the insurance side to better under the mito.

J.D. had a speech therapist in a meeting that said she could do nothing about speech if it was a fatigue problem. She cannot do anything about the fatigue problem but "good" speech therapy helps him from sliding into a pattern where someone cannot understand him. We now get a good speech teacher at the home once a month.

Hopes this helps. Take a deep breath and get a good nights sleep and tackle it in the morning.

Darlene

[Guest guest]

I have thought about this same issue quite frequently for Asenath's occupational and physical therapy. She gets to a certain point and then hits a wall and can't get any better. Her strokes have left permanent damage in certain areas and I have been told that they will not get better. Right now I continue her physical therapy because she has developed weakness in her hips causing her feet to turn inward despite having DAFO's to prevent it. So we are trying some new things there. But her left arm consistently has been the same for a long time and we have many times thought to stop. Recently we changed to home therapy and have found that the therapist was not doing any sensory imput into the arm just functional teaching for daily living. Now we have saw a regression of her posturing her left arm/wrist and so are starting with a new occupational therapist tomorrow. If that doesn't help, I think we will consider stopping the OT unless another stroke hits her arms/hands again. This is a frustrating issue for many of us I am sure. We want to do what is best for our child but boy can it get tiring going/doing therapy week after week and it seems there isn't any progress or they go up and down with their progress. I guess I am not much help to you on this issue. You just have to look at all the facts and decide within your own heart what you feel is best and also talk with the therapists/doctors and ask their opinion and decide from there. Good luck with your decision. Hope you are doing good otherwise. Darla: mommy to Asenath Therapy and older kids A belated Happy Holidays to all!!! Sending Healthy wishes to all for the new year. I have a dilemma and desperatly need some feedback from others here on Chance. Chance is 10 1/2 and has been in therapy (ST/OT) since he was 4. For 3 years he got services from the school district in addition to private, and since then he's been in private therapy, with only short breaks here and there. Last year he also needed PT for the first time, though we're on a break from it right now. He makes slow but steady progress in all while he's in therapy, but not enough to "close the gap" really, and he stagnates (or slows so much the "gap widens") when he is not in therapy. This means he is consistently 3-5 years delayed, or 30-50% delayed across the board. This has consistently been the case since we started so many years ago. We've been with our current therapists for the last 1 1/2 years, seeing them once a week for 30 minutes each, and I continue to work with him at home however have not recieved the support of the therapists I would have liked as far as sharing with me what they are doing so I can duplicate it here at home the same way (but thats another issue for another day...been doing this long enough that I can manage okay on my own). He was discharged from PT 6 months ago, but is due for a re-eval and his OT has already told me he needs it again. He's been with the OT and ST the whole time and generally speaking makes only enough progress to keep the gap the same each time they test. Speech has been a little different though. When he was tested 6 months ago he had made some progress in expressive (something I could hear and was not surprised about) but had made NO progress in receptive speech, something I probably knew also, but hadn't let myself acknowledge......meaning the gap in receptive had widened. ST said she's been focusing on expressive and would re-focus her efforts on receptive. Results are that his expressive has again declined and recent testing shows we've not closed the gap at all on the receptive, even with it being the focus. Because of this she did further testing on Auditory processing and we found that his "auditory memory" scores are at or below the 4 yr old level, so 6+ years delayed. She was honest and said she wasn't sure this was something we would ever see improvement in but that she would focus in on this and we will see where things stand in 6 months. The impression she gave was that as long as his auditory memory is this delayed, his receptive language would continue to be significantly delayed also. SO.....my dilemma is whether we continue therapy or not. When do you say you've done all you can in this respect and move on?? We had taken a 6 month break before starting with these therapists and I had basically decided we were done with it at that time. I decided to give it one more go and decide 6 months or a year into it whether we were seeing enough progress to warrant continuing with it or not. Problem is, I just don't know how to make that determination and am seeking your advice to consider in making my decision. I realize *I* am tired of it and this is coloring my thoughts, but want to do whats best for Chance. Thanks so much!!!! -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(7-Mito), and Abby(5-Mito) Home Page (http://home.swbell.net/mcpoop/index1.htm) Updates (http://www.caringbridge.org/tx/mitowhat/) United Mitochondrial Disease Foundation (http://www.umdf.org) "Life is not about the breaths we take, but the moments that take our breath away" Unknown Please contact mito-owner with any problems or questions.

[Guest guest]

Hi Kass-

" I realize I am tired of this. . . " My exact sentiment. I'm

exhausted from running to three therapies a week along with working,

school, music, swimming, etc. A couple of months ago I was told

insurance would be dropping Wyatt from therapy. At first I was

ticked, but now I am ok with it. It will give my family a chance to

be some what like other families- not running to therapies. In

making your decision maybe you should consider what is best for your

family and not just the one going to therapy. Does it take time away

from the other kids that you can not recoup in some way? Do they

have to get dragged to therapy just because their sibling has to

go? Could you be doing things that are more productive? If you

decide to continue with therapy is there a way you could possibly

have a neighbor, friend, relative, PCA who could take Chance to

therapy, maybe even once or twice a month? Could you extend the

sessions and then cut down on the number of times you go a month?

And last thing how does Chance feel about continuing therapy or

dropping it? Hope some of the questions help you in your decision.

Good luck it is tough having to always make decision that you are

not sure about.-

Geri-Anne and Wyatt, Complex I

-- In Mito , Kass wrote:

> A belated Happy Holidays to all!!! Sending Healthy wishes to all

for

> the new year.

>

> I have a dilemma and desperatly need some feedback from others

here on

> Chance. Chance is 10 1/2 and has been in therapy (ST/OT) since he

was

> 4. For 3 years he got services from the school district in

addition to

> private, and since then he's been in private therapy, with only

short

> breaks here and there. Last year he also needed PT for the first

time,

> though we're on a break from it right now. He makes slow but

steady

> progress in all while he's in therapy, but not enough to " close

the gap "

> really, and he stagnates (or slows so much the " gap widens " ) when

he is

> not in therapy. This means he is consistently 3-5 years delayed,

or

> 30-50% delayed across the board. This has consistently been the

case

> since we started so many years ago.

>

> We've been with our current therapists for the last 1 1/2 years,

seeing

> them once a week for 30 minutes each, and I continue to work with

him at

> home however have not recieved the support of the therapists I

would

> have liked as far as sharing with me what they are doing so I can

> duplicate it here at home the same way (but thats another issue for

> another day...been doing this long enough that I can manage okay

on my

> own). He was discharged from PT 6 months ago, but is due for a re-

eval

> and his OT has already told me he needs it again. He's been with

the OT

> and ST the whole time and generally speaking makes only enough

progress

> to keep the gap the same each time they test.

>

> Speech has been a little different though. When he was tested 6

months

> ago he had made some progress in expressive (something I could

hear and

> was not surprised about) but had made NO progress in receptive

speech,

> something I probably knew also, but hadn't let myself

> acknowledge......meaning the gap in receptive had widened. ST said

> she's been focusing on expressive and would re-focus her efforts on

> receptive. Results are that his expressive has again declined and

> recent testing shows we've not closed the gap at all on the

receptive,

> even with it being the focus. Because of this she did further

testing

> on Auditory processing and we found that his " auditory memory "

scores

> are at or below the 4 yr old level, so 6+ years delayed. She was

honest

> and said she wasn't sure this was something we would ever see

> improvement in but that she would focus in on this and we will see

where

> things stand in 6 months. The impression she gave was that as

long as

> his auditory memory is this delayed, his receptive language would

> continue to be significantly delayed also.

>

> SO......my dilemma is whether we continue therapy or not. When do

you

> say you've done all you can in this respect and move on?? We had

taken

> a 6 month break before starting with these therapists and I had

> basically decided we were done with it at that time. I decided to

give

> it one more go and decide 6 months or a year into it whether we

were

> seeing enough progress to warrant continuing with it or not.

Problem

> is, I just don't know how to make that determination and am

seeking your

> advice to consider in making my decision. I realize *I* am tired

of it

> and this is coloring my thoughts, but want to do whats best for

Chance.

>

> Thanks so much!!!!

>

> -- BIG hugs,

> Kass, proud mom to Chance(10-Mito), Madison(7-Mito), and Abby(5-

Mito)

> Home Page (http://home.swbell.net/mcpoop/index1.htm)

> Updates (http://www.caringbridge.org/tx/mitowhat/)

> United Mitochondrial Disease Foundation (http://www.umdf.org)

> " Life is not about the breaths we take, but the moments that take

our

> breath away " Unknown

[Guest guest]

Hi Kass-

" I realize I am tired of this. . . " My exact sentiment. I'm

exhausted from running to three therapies a week along with working,

school, music, swimming, etc. A couple of months ago I was told

insurance would be dropping Wyatt from therapy. At first I was

ticked, but now I am ok with it. It will give my family a chance to

be some what like other families- not running to therapies. In

making your decision maybe you should consider what is best for your

family and not just the one going to therapy. Does it take time away

from the other kids that you can not recoup in some way? Do they

have to get dragged to therapy just because their sibling has to

go? Could you be doing things that are more productive? If you

decide to continue with therapy is there a way you could possibly

have a neighbor, friend, relative, PCA who could take Chance to

therapy, maybe even once or twice a month? Could you extend the

sessions and then cut down on the number of times you go a month?

And last thing how does Chance feel about continuing therapy or

dropping it? Hope some of the questions help you in your decision.

Good luck it is tough having to always make decision that you are

not sure about.-

Geri-Anne and Wyatt, Complex I

-- In Mito , Kass wrote:

> A belated Happy Holidays to all!!! Sending Healthy wishes to all

for

> the new year.

>

> I have a dilemma and desperatly need some feedback from others

here on

> Chance. Chance is 10 1/2 and has been in therapy (ST/OT) since he

was

> 4. For 3 years he got services from the school district in

addition to

> private, and since then he's been in private therapy, with only

short

> breaks here and there. Last year he also needed PT for the first

time,

> though we're on a break from it right now. He makes slow but

steady

> progress in all while he's in therapy, but not enough to " close

the gap "

> really, and he stagnates (or slows so much the " gap widens " ) when

he is

> not in therapy. This means he is consistently 3-5 years delayed,

or

> 30-50% delayed across the board. This has consistently been the

case

> since we started so many years ago.

>

> We've been with our current therapists for the last 1 1/2 years,

seeing

> them once a week for 30 minutes each, and I continue to work with

him at

> home however have not recieved the support of the therapists I

would

> have liked as far as sharing with me what they are doing so I can

> duplicate it here at home the same way (but thats another issue for

> another day...been doing this long enough that I can manage okay

on my

> own). He was discharged from PT 6 months ago, but is due for a re-

eval

> and his OT has already told me he needs it again. He's been with

the OT

> and ST the whole time and generally speaking makes only enough

progress

> to keep the gap the same each time they test.

>

> Speech has been a little different though. When he was tested 6

months

> ago he had made some progress in expressive (something I could

hear and

> was not surprised about) but had made NO progress in receptive

speech,

> something I probably knew also, but hadn't let myself

> acknowledge......meaning the gap in receptive had widened. ST said

> she's been focusing on expressive and would re-focus her efforts on

> receptive. Results are that his expressive has again declined and

> recent testing shows we've not closed the gap at all on the

receptive,

> even with it being the focus. Because of this she did further

testing

> on Auditory processing and we found that his " auditory memory "

scores

> are at or below the 4 yr old level, so 6+ years delayed. She was

honest

> and said she wasn't sure this was something we would ever see

> improvement in but that she would focus in on this and we will see

where

> things stand in 6 months. The impression she gave was that as

long as

> his auditory memory is this delayed, his receptive language would

> continue to be significantly delayed also.

>

> SO......my dilemma is whether we continue therapy or not. When do

you

> say you've done all you can in this respect and move on?? We had

taken

> a 6 month break before starting with these therapists and I had

> basically decided we were done with it at that time. I decided to

give

> it one more go and decide 6 months or a year into it whether we

were

> seeing enough progress to warrant continuing with it or not.

Problem

> is, I just don't know how to make that determination and am

seeking your

> advice to consider in making my decision. I realize *I* am tired

of it

> and this is coloring my thoughts, but want to do whats best for

Chance.

>

> Thanks so much!!!!

>

> -- BIG hugs,

> Kass, proud mom to Chance(10-Mito), Madison(7-Mito), and Abby(5-

Mito)

> Home Page (http://home.swbell.net/mcpoop/index1.htm)

> Updates (http://www.caringbridge.org/tx/mitowhat/)

> United Mitochondrial Disease Foundation (http://www.umdf.org)

> " Life is not about the breaths we take, but the moments that take

our

> breath away " Unknown

[Guest guest]

Hi Kass, I empathize with your dilemma. I have never been one to schedule a ton for either of my kids (typical & mito). Part of it is, I guess, my selfish desire not to run myself ragged like some moms do. I end up taking breaks, and then starting again with new hope. We are in that phase right now. hasn't had PT since the end of the summer. Unfortuately, he has experienced regression and it is just unconscionable that he is not in PT again. So, we are starting again next week with PT, OT (and he gets speech in school). I'm also putting him in hippotherapy for the first time. So, I guess with us it's cyclical, probably coinciding with what else is going on in our lives and how much energy or frustration I'm experiencing. I guess, try to do what you can if you feel that there are real benefits. Maybe you could do every other week instead of weekly. You have three special needs kids to deal with--do what you can and still keep your sanity.

Take care, Lori

Therapy and older kids

A belated Happy Holidays to all!!! Sending Healthy wishes to all for the new year. I have a dilemma and desperatly need some feedback from others here on Chance. Chance is 10 1/2 and has been in therapy (ST/OT) since he was 4. For 3 years he got services from the school district in addition to private, and since then he's been in private therapy, with only short breaks here and there. Last year he also needed PT for the first time, though we're on a break from it right now. He makes slow but steady progress in all while he's in therapy, but not enough to "close the gap" really, and he stagnates (or slows so much the "gap widens") when he is not in therapy. This means he is consistently 3-5 years delayed, or 30-50% delayed across the board. This has consistently been the case since we started so many years ago. We've been with our current therapists for the last 1 1/2 years, seeing them once a week for 30 minutes each, and I continue to work with him at home however have not recieved the support of the therapists I would have liked as far as sharing with me what they are doing so I can duplicate it here at home the same way (but thats another issue for another day...been doing this long enough that I can manage okay on my own). He was discharged from PT 6 months ago, but is due for a re-eval and his OT has already told me he needs it again. He's been with the OT and ST the whole time and generally speaking makes only enough progress to keep the gap the same each time they test. Speech has been a little different though. When he was tested 6 months ago he had made some progress in expressive (something I could hear and was not surprised about) but had made NO progress in receptive speech, something I probably knew also, but hadn't let myself acknowledge......meaning the gap in receptive had widened. ST said she's been focusing on expressive and would re-focus her efforts on receptive. Results are that his expressive has again declined and recent testing shows we've not closed the gap at all on the receptive, even with it being the focus. Because of this she did further testing on Auditory processing and we found that his "auditory memory" scores are at or below the 4 yr old level, so 6+ years delayed. She was honest and said she wasn't sure this was something we would ever see improvement in but that she would focus in on this and we will see where things stand in 6 months. The impression she gave was that as long as his auditory memory is this delayed, his receptive language would continue to be significantly delayed also. SO.....my dilemma is whether we continue therapy or not. When do you say you've done all you can in this respect and move on?? We had taken a 6 month break before starting with these therapists and I had basically decided we were done with it at that time. I decided to give it one more go and decide 6 months or a year into it whether we were seeing enough progress to warrant continuing with it or not. Problem is, I just don't know how to make that determination and am seeking your advice to consider in making my decision. I realize *I* am tired of it and this is coloring my thoughts, but want to do whats best for Chance. Thanks so much!!!! -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(7-Mito), and Abby(5-Mito) Home Page (http://home.swbell.net/mcpoop/index1.htm) Updates (http://www.caringbridge.org/tx/mitowhat/) United Mitochondrial Disease Foundation (http://www.umdf.org) "Life is not about the breaths we take, but the moments that take our breath away" Unknown Please contact mito-owner with any problems or questions.

[Guest guest]

Hi Kass, I empathize with your dilemma. I have never been one to schedule a ton for either of my kids (typical & mito). Part of it is, I guess, my selfish desire not to run myself ragged like some moms do. I end up taking breaks, and then starting again with new hope. We are in that phase right now. hasn't had PT since the end of the summer. Unfortuately, he has experienced regression and it is just unconscionable that he is not in PT again. So, we are starting again next week with PT, OT (and he gets speech in school). I'm also putting him in hippotherapy for the first time. So, I guess with us it's cyclical, probably coinciding with what else is going on in our lives and how much energy or frustration I'm experiencing. I guess, try to do what you can if you feel that there are real benefits. Maybe you could do every other week instead of weekly. You have three special needs kids to deal with--do what you can and still keep your sanity.

Take care, Lori

Therapy and older kids

A belated Happy Holidays to all!!! Sending Healthy wishes to all for the new year. I have a dilemma and desperatly need some feedback from others here on Chance. Chance is 10 1/2 and has been in therapy (ST/OT) since he was 4. For 3 years he got services from the school district in addition to private, and since then he's been in private therapy, with only short breaks here and there. Last year he also needed PT for the first time, though we're on a break from it right now. He makes slow but steady progress in all while he's in therapy, but not enough to "close the gap" really, and he stagnates (or slows so much the "gap widens") when he is not in therapy. This means he is consistently 3-5 years delayed, or 30-50% delayed across the board. This has consistently been the case since we started so many years ago. We've been with our current therapists for the last 1 1/2 years, seeing them once a week for 30 minutes each, and I continue to work with him at home however have not recieved the support of the therapists I would have liked as far as sharing with me what they are doing so I can duplicate it here at home the same way (but thats another issue for another day...been doing this long enough that I can manage okay on my own). He was discharged from PT 6 months ago, but is due for a re-eval and his OT has already told me he needs it again. He's been with the OT and ST the whole time and generally speaking makes only enough progress to keep the gap the same each time they test. Speech has been a little different though. When he was tested 6 months ago he had made some progress in expressive (something I could hear and was not surprised about) but had made NO progress in receptive speech, something I probably knew also, but hadn't let myself acknowledge......meaning the gap in receptive had widened. ST said she's been focusing on expressive and would re-focus her efforts on receptive. Results are that his expressive has again declined and recent testing shows we've not closed the gap at all on the receptive, even with it being the focus. Because of this she did further testing on Auditory processing and we found that his "auditory memory" scores are at or below the 4 yr old level, so 6+ years delayed. She was honest and said she wasn't sure this was something we would ever see improvement in but that she would focus in on this and we will see where things stand in 6 months. The impression she gave was that as long as his auditory memory is this delayed, his receptive language would continue to be significantly delayed also. SO.....my dilemma is whether we continue therapy or not. When do you say you've done all you can in this respect and move on?? We had taken a 6 month break before starting with these therapists and I had basically decided we were done with it at that time. I decided to give it one more go and decide 6 months or a year into it whether we were seeing enough progress to warrant continuing with it or not. Problem is, I just don't know how to make that determination and am seeking your advice to consider in making my decision. I realize *I* am tired of it and this is coloring my thoughts, but want to do whats best for Chance. Thanks so much!!!! -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(7-Mito), and Abby(5-Mito) Home Page (http://home.swbell.net/mcpoop/index1.htm) Updates (http://www.caringbridge.org/tx/mitowhat/) United Mitochondrial Disease Foundation (http://www.umdf.org) "Life is not about the breaths we take, but the moments that take our breath away" Unknown Please contact mito-owner with any problems or questions.

[Guest guest]

Hi Kass, I empathize with your dilemma. I have never been one to schedule a ton for either of my kids (typical & mito). Part of it is, I guess, my selfish desire not to run myself ragged like some moms do. I end up taking breaks, and then starting again with new hope. We are in that phase right now. hasn't had PT since the end of the summer. Unfortuately, he has experienced regression and it is just unconscionable that he is not in PT again. So, we are starting again next week with PT, OT (and he gets speech in school). I'm also putting him in hippotherapy for the first time. So, I guess with us it's cyclical, probably coinciding with what else is going on in our lives and how much energy or frustration I'm experiencing. I guess, try to do what you can if you feel that there are real benefits. Maybe you could do every other week instead of weekly. You have three special needs kids to deal with--do what you can and still keep your sanity.

Take care, Lori

Therapy and older kids

A belated Happy Holidays to all!!! Sending Healthy wishes to all for the new year. I have a dilemma and desperatly need some feedback from others here on Chance. Chance is 10 1/2 and has been in therapy (ST/OT) since he was 4. For 3 years he got services from the school district in addition to private, and since then he's been in private therapy, with only short breaks here and there. Last year he also needed PT for the first time, though we're on a break from it right now. He makes slow but steady progress in all while he's in therapy, but not enough to "close the gap" really, and he stagnates (or slows so much the "gap widens") when he is not in therapy. This means he is consistently 3-5 years delayed, or 30-50% delayed across the board. This has consistently been the case since we started so many years ago. We've been with our current therapists for the last 1 1/2 years, seeing them once a week for 30 minutes each, and I continue to work with him at home however have not recieved the support of the therapists I would have liked as far as sharing with me what they are doing so I can duplicate it here at home the same way (but thats another issue for another day...been doing this long enough that I can manage okay on my own). He was discharged from PT 6 months ago, but is due for a re-eval and his OT has already told me he needs it again. He's been with the OT and ST the whole time and generally speaking makes only enough progress to keep the gap the same each time they test. Speech has been a little different though. When he was tested 6 months ago he had made some progress in expressive (something I could hear and was not surprised about) but had made NO progress in receptive speech, something I probably knew also, but hadn't let myself acknowledge......meaning the gap in receptive had widened. ST said she's been focusing on expressive and would re-focus her efforts on receptive. Results are that his expressive has again declined and recent testing shows we've not closed the gap at all on the receptive, even with it being the focus. Because of this she did further testing on Auditory processing and we found that his "auditory memory" scores are at or below the 4 yr old level, so 6+ years delayed. She was honest and said she wasn't sure this was something we would ever see improvement in but that she would focus in on this and we will see where things stand in 6 months. The impression she gave was that as long as his auditory memory is this delayed, his receptive language would continue to be significantly delayed also. SO.....my dilemma is whether we continue therapy or not. When do you say you've done all you can in this respect and move on?? We had taken a 6 month break before starting with these therapists and I had basically decided we were done with it at that time. I decided to give it one more go and decide 6 months or a year into it whether we were seeing enough progress to warrant continuing with it or not. Problem is, I just don't know how to make that determination and am seeking your advice to consider in making my decision. I realize *I* am tired of it and this is coloring my thoughts, but want to do whats best for Chance. Thanks so much!!!! -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(7-Mito), and Abby(5-Mito) Home Page (http://home.swbell.net/mcpoop/index1.htm) Updates (http://www.caringbridge.org/tx/mitowhat/) United Mitochondrial Disease Foundation (http://www.umdf.org) "Life is not about the breaths we take, but the moments that take our breath away" Unknown Please contact mito-owner with any problems or questions.

[Guest guest]

So hard to know what to do Kass. I waffle on this one myself. I had my kids in therapy every day of the week when they were infants, toddlers and even preschoolers. I felt it was imperative to be aggressive. The kids loved therapy which made it easier for me to make that decision. Sam has had the same therapists since infancy and he considers them his best friends. Progress was slow but steady when younger. When we tried to scale back with Zachary he went backwards and his deficits were bigger. Fast forward to a few years ago when he was 9. That was when I realized that his delays were staying steady - in other words therapy was just maintaining him and not necessarily helping him improve. At the same time he was struggling in school to fit everything in to the three 1/2 days he attends and the few hours of home bound services. I wondered if we could try to stop his school therapy so that he would have more time to just be a kid in school and not therapized all the time. We did and in the last 2 years he has not slipped further (nor has he caught up). I do still have him in private therapy (PT 2x/week, OT 1x/week). And he still gets speech 1x/week in school as well as specially designed phy ed instead of regular phy ed. Lately I have been thinking about reducing his private PT to once a week and then have them see him every day during the 1 week/month when he is in the hospital. As for the receptive/expressive issue - Zach too has this. They tell me it is due to poor auditory processing. Like you, I honestly have not seen therapy close this gap although it is fortunately not widening either. I guess it really depends on what your goals are for your child and also Chance is old enough to participate in that decision (though not make it entirely yet at that age). The MD and I have had a long term written goal that we will "measure impact of interventions and eschew ineffective or deleterious interventions." WE try to objectively look at everything we are doing whether it is a med, a system of care, a therapy or an approach and make sure it is really helpful. I always have a hard time when we choose to stop something even if it clearly is not helping, even if I am the one to suggest we stop it. But usually in a matter of weeks or months I can clearly see whether it was the right or wrong decision. Perhaps another break from therapy would help you get some perspective on the issue - you can always go back to it if he loses ground. Hard decisions because we so want to do everything we can to maximize our children's potential. Sometimes the best thing to do is nothing but that seems harder for me to accept than when I am doing something. Anne Therapy and older kidsSO......my dilemma is whether we continue therapy or not. When do you say you've done all you can in this respect and move on?? We had taken a 6 month break before starting with these therapists and I had basically decided we were done with it at that time. I decided to give it one more go and decide 6 months or a year into it whether we were seeing enough progress to warrant continuing with it or not. Problem is, I just don't know how to make that determination and am seeking your advice to consider in making my decision. I realize *I* am tired of it and this is coloring my thoughts, but want to do whats best for Chance. Thanks so much!!!!

[Guest guest]

So hard to know what to do Kass. I waffle on this one myself. I had my kids in therapy every day of the week when they were infants, toddlers and even preschoolers. I felt it was imperative to be aggressive. The kids loved therapy which made it easier for me to make that decision. Sam has had the same therapists since infancy and he considers them his best friends. Progress was slow but steady when younger. When we tried to scale back with Zachary he went backwards and his deficits were bigger. Fast forward to a few years ago when he was 9. That was when I realized that his delays were staying steady - in other words therapy was just maintaining him and not necessarily helping him improve. At the same time he was struggling in school to fit everything in to the three 1/2 days he attends and the few hours of home bound services. I wondered if we could try to stop his school therapy so that he would have more time to just be a kid in school and not therapized all the time. We did and in the last 2 years he has not slipped further (nor has he caught up). I do still have him in private therapy (PT 2x/week, OT 1x/week). And he still gets speech 1x/week in school as well as specially designed phy ed instead of regular phy ed. Lately I have been thinking about reducing his private PT to once a week and then have them see him every day during the 1 week/month when he is in the hospital. As for the receptive/expressive issue - Zach too has this. They tell me it is due to poor auditory processing. Like you, I honestly have not seen therapy close this gap although it is fortunately not widening either. I guess it really depends on what your goals are for your child and also Chance is old enough to participate in that decision (though not make it entirely yet at that age). The MD and I have had a long term written goal that we will "measure impact of interventions and eschew ineffective or deleterious interventions." WE try to objectively look at everything we are doing whether it is a med, a system of care, a therapy or an approach and make sure it is really helpful. I always have a hard time when we choose to stop something even if it clearly is not helping, even if I am the one to suggest we stop it. But usually in a matter of weeks or months I can clearly see whether it was the right or wrong decision. Perhaps another break from therapy would help you get some perspective on the issue - you can always go back to it if he loses ground. Hard decisions because we so want to do everything we can to maximize our children's potential. Sometimes the best thing to do is nothing but that seems harder for me to accept than when I am doing something. Anne Therapy and older kidsSO......my dilemma is whether we continue therapy or not. When do you say you've done all you can in this respect and move on?? We had taken a 6 month break before starting with these therapists and I had basically decided we were done with it at that time. I decided to give it one more go and decide 6 months or a year into it whether we were seeing enough progress to warrant continuing with it or not. Problem is, I just don't know how to make that determination and am seeking your advice to consider in making my decision. I realize *I* am tired of it and this is coloring my thoughts, but want to do whats best for Chance. Thanks so much!!!!

[Guest guest]

So hard to know what to do Kass. I waffle on this one myself. I had my kids in therapy every day of the week when they were infants, toddlers and even preschoolers. I felt it was imperative to be aggressive. The kids loved therapy which made it easier for me to make that decision. Sam has had the same therapists since infancy and he considers them his best friends. Progress was slow but steady when younger. When we tried to scale back with Zachary he went backwards and his deficits were bigger. Fast forward to a few years ago when he was 9. That was when I realized that his delays were staying steady - in other words therapy was just maintaining him and not necessarily helping him improve. At the same time he was struggling in school to fit everything in to the three 1/2 days he attends and the few hours of home bound services. I wondered if we could try to stop his school therapy so that he would have more time to just be a kid in school and not therapized all the time. We did and in the last 2 years he has not slipped further (nor has he caught up). I do still have him in private therapy (PT 2x/week, OT 1x/week). And he still gets speech 1x/week in school as well as specially designed phy ed instead of regular phy ed. Lately I have been thinking about reducing his private PT to once a week and then have them see him every day during the 1 week/month when he is in the hospital. As for the receptive/expressive issue - Zach too has this. They tell me it is due to poor auditory processing. Like you, I honestly have not seen therapy close this gap although it is fortunately not widening either. I guess it really depends on what your goals are for your child and also Chance is old enough to participate in that decision (though not make it entirely yet at that age). The MD and I have had a long term written goal that we will "measure impact of interventions and eschew ineffective or deleterious interventions." WE try to objectively look at everything we are doing whether it is a med, a system of care, a therapy or an approach and make sure it is really helpful. I always have a hard time when we choose to stop something even if it clearly is not helping, even if I am the one to suggest we stop it. But usually in a matter of weeks or months I can clearly see whether it was the right or wrong decision. Perhaps another break from therapy would help you get some perspective on the issue - you can always go back to it if he loses ground. Hard decisions because we so want to do everything we can to maximize our children's potential. Sometimes the best thing to do is nothing but that seems harder for me to accept than when I am doing something. Anne Therapy and older kidsSO......my dilemma is whether we continue therapy or not. When do you say you've done all you can in this respect and move on?? We had taken a 6 month break before starting with these therapists and I had basically decided we were done with it at that time. I decided to give it one more go and decide 6 months or a year into it whether we were seeing enough progress to warrant continuing with it or not. Problem is, I just don't know how to make that determination and am seeking your advice to consider in making my decision. I realize *I* am tired of it and this is coloring my thoughts, but want to do whats best for Chance. Thanks so much!!!!

[Guest guest]

Hard decisions because we so want to do everything we can to maximize our children's potential. Sometimes the best thing to do is nothing but that seems harder for me to accept than when I am doing something.

Anne,

I so appreciate your thoughtfulness on this issue. We used to struggle with this one with Mamie Rose, as well. Therapy choices get harder as kids grow.

Maggie, mom to Mamie Rose, Complex I, 1/15/93 - 12/23/03

[Guest guest]

Hard decisions because we so want to do everything we can to maximize our children's potential. Sometimes the best thing to do is nothing but that seems harder for me to accept than when I am doing something.

Anne,

I so appreciate your thoughtfulness on this issue. We used to struggle with this one with Mamie Rose, as well. Therapy choices get harder as kids grow.

Maggie, mom to Mamie Rose, Complex I, 1/15/93 - 12/23/03

[Guest guest]

Hard decisions because we so want to do everything we can to maximize our children's potential. Sometimes the best thing to do is nothing but that seems harder for me to accept than when I am doing something.

Anne,

I so appreciate your thoughtfulness on this issue. We used to struggle with this one with Mamie Rose, as well. Therapy choices get harder as kids grow.

Maggie, mom to Mamie Rose, Complex I, 1/15/93 - 12/23/03

[Guest guest]

Anne and Kass and others with older kids;

If I might talk as an adult patient and address this issue of therapy and

exercise .... in terms of gain and loss of skills....

This is my personal experience and your mileage my vary. I try very hard

to keep up and get discouraged when I can't or feel that others are having

to accomodate for me. This makes for an interesting juggling of tasks and

energy: this energy is often in short supply.

Even though I am LONG past being an older kid (I'm a grandmother of a 19

year old!), I can remember pushing myself and paying the price with pain

and zero-energy days. I can remember how important it was to me to be like

the other kids ..... and yet ..... it just wasn't possible! I felt the loss!

Hey . .. as a granny I still push myself!

On the flip side of this .... by trying to be as normal as possible, people

tend to forget that I am "energy challenged" (what a mouthful!! <grin>)

and expect from me more than I am able to give!

For me, it is IMPOSSIBLE to set up a schedule for energy output as some days

even getting dressed is a challenge! For me, it would be deleterious to

push beyond what I am already giving .... because I am already pushing the

envelope with my effort towards normalcy.

I realize that what I am saying applies to older kids who are to some extent

mobile ... and that for some, the necessity may be there for more "practice"

....... but I truly believe that for most just the living of life in a family

and doing what educational goals that have been set is giving your child

the exercise and challenge he needs. Asking your child to go beyond his

"tired" level is asking him to produce more than he can perhaps.

When I get tired, I find a quiet thing to do .... usually <grin> sleep!

As I live life and do what I can, I find that I am constantly in touch with

my own personal energy level .... and vary the tasks according to energy

level consumption.

OK ... long enough, Jean! In my opinion, living as a Mito patient is all

about pacing yourself and listening to what your body has to say and obeying

its dictates ..... or .... splurge and pay the price. Your child will KNOW

when he has had enough. Allow him to stop when he is ready!

Jean

Anne K Juhlmann wrote:

So hard to know what to do Kass. I waffle

on this one myself.

I had my kids in therapy every day of

the week when they were infants, toddlers and even preschoolers. I felt

it was imperative to be aggressive. The kids loved therapy which made

it easier for me to make that decision. Sam has had the same therapists

since infancy and he considers them his best friends.

Progress was slow but steady when younger.

When we tried to scale back with Zachary he went backwards and his deficits

were bigger.

Fast forward to a few years ago when

he was 9. That was when I realized that his delays were staying steady

- in other words therapy was just maintaining him and not necessarily helping

him improve. At the same time he was struggling in school to fit everything

in to the three 1/2 days he attends and the few hours of home bound services.

I wondered if we could try to stop his school therapy so that he would

have more time to just be a kid in school and not therapized all the time.

We did and in the last 2 years he has not slipped further (nor has he caught

up). I do still have him in private therapy (PT 2x/week, OT 1x/week).

And he still gets speech 1x/week in school as well as specially designed

phy ed instead of regular phy ed.

Lately I have been thinking about reducing

his private PT to once a week and then have them see him every day during

the 1 week/month when he is in the hospital.

As for the receptive/expressive issue

- Zach too has this. They tell me it is due to poor auditory processing.

Like you, I honestly have not seen therapy close this gap although it is

fortunately not widening either.

I guess it really depends on what your

goals are for your child and also Chance is old enough to participate in

that decision (though not make it entirely yet at that age). The MD and

I have had a long term written goal that we will "measure impact of interventions

and eschew ineffective or deleterious interventions." WE try to objectively

look at everything we are doing whether it is a med, a system of care,

a therapy or an approach and make sure it is really helpful. I always

have a hard time when we choose to stop something even if it clearly is

not helping, even if I am the one to suggest we stop it. But usually in

a matter of weeks or months I can clearly see whether it was the right

or wrong decision. Perhaps another break from therapy would help you get

some perspective on the issue - you can always go back to it if he loses

ground.

Hard decisions because we so want to

do everything we can to maximize our children's potential. Sometimes the

best thing to do is nothing but that seems harder for me to accept than

when I am doing something.

Anne

Therapy and older kids

SO......my dilemma is whether we continue therapy or not. When do

you say you've done all you can in this respect and move on?? We had

taken a 6 month break before starting with these therapists and I had

basically decided we were done with it at that time. I decided to give

it one more go and decide 6 months or a year into it whether we were

seeing enough progress to warrant continuing with it or not. Problem

is, I just don't know how to make that determination and am seeking your

advice to consider in making my decision. I realize *I* am tired of

it and this is coloring my thoughts, but want to do whats best for Chance.

Thanks so much!!!!

Please contact mito-owner with any problems or questions.

[Guest guest]

I agree that doing nothing is the hardest thing of all.Sometimes though it's the only thing we can do.

had PT,OT and speech for years.When it got where she couldn't handle it anymore we had to stop.Her muscles are getting weaker and she is loosing muscle tone but after trying again with the PT and seeing what it did to her,it just was not worth it.

A few years ago we tried teaching her Braiile,she was doing very well I might add.Then all of a sudden she just shut down.She couldn't do the braille,she couldn't do anything.

They say the brain uses the most energy and in that seems to be the case.

I wish we COULD do more but..................

,Mom to

Re: Therapy and older kids

Hard decisions because we so want to do everything we can to maximize our children's potential. Sometimes the best thing to do is nothing but that seems harder for me to accept than when I am doing something.

Anne,

I so appreciate your thoughtfulness on this issue. We used to struggle with this one with Mamie Rose, as well. Therapy choices get harder as kids grow.

Maggie, mom to Mamie Rose, Complex I, 1/15/93 - 12/23/03Please contact mito-owner with any problems or questions.