New here

[Guest guest]

,

Awww...you are so sweet. Can you believe it's number 6 already? Crazy! One pm is around the same time we had for Bex last cast- one or 1:30...and he didn't go until 3:30! I asked and they said next time to call before coming that morning and ask if the OR is running on time. That's never happened to us before, it was an extreme circumstance with a complicated surgery that day...but still. It is not fun to see your kiddo hungry and not be able to give them milk! I say demand popcicles at least. I hope Isaiah gets moved up. We go 2 weeks after you and I am really dying to hear good news. Bex went up a half shoe size. Is Isaiah growing taller in this one? Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City Shriners, currently down from 62 degrees to 19.7 in cast)

From: <missikay10@...>infantile scoliosis treatment Sent: Fri, July 23, 2010 5:45:50 PMSubject: Re: New here

Heidi,Have I told you lately how great you are in responding and giving great advice? BTW Isaiah gets cast #6 on fri july 30th...and not til 1pm! It will be a rough day for sure. Just wanted to give you kuddos on your responses!Xoxo,NIck Guthe <nickguthe@...> wrote:>Hi , welcome to CAST!>>36 degrees, is that in a lying down X-ray? Standing is more accurate, and will >likely be higher. 36 is already pretty high. My advice is also not to wait to >apply to Shriners. Chicago is a terrific center for this method, many families >love it there! I am sure some will respond soon. Watch and wait or wait and see >is the wrong approach to take, unfortunately, and is the norm to hear from most >doctors. The very best chance for correction

and avoiding multiple spinal >surgeries down the line is a properly applied series of casts done on the >derotational, 3 dimensional table, as Chicago does. A regular Risser cast will >not have the same chance at correction, that is likely the kind your current >doctor referred to (?)>>The best time to begin tretment is under age 2 and under 50-60 degrees. Truly >the sooner, the better, these casts correct along with your child's natural >growth spurts, and you do not want to miss one, as that can allow the condition >to progress fast. Even weeks and certainly months can make a huge differerence >in the length of treatment needed. The surgeries are not easy at all, are much >more invasive, and can have many complications.>>Mehta or EDF casting is the only potential cure, and it is gentle and >non-surgical. At the least, it will postpone surgery

for as long as possible, >while bracing often does not even hold the curve in progressive cases. If you >opt for bracing, the window of correction with proper casting can be lost, in >some cases making surgery necessary very young, as young as 2 or 3, every 6 >months or sooner. It has more than a 100 percent complication rate.>>Parents of children with low muscle tone will know more about that, but they are >here for sure, you can also search for it in older posts on this group. Casting >is hard at first, but very do-able!>>Congratulations on adopting Kiya, you are in the right place to do the very best >thing for your precious child!> Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City Shriners, >currently down from 62 degrees to 19.7 in cast)

>>>>>>________________________________>From: cjustl <cjustl@...>>infantile scoliosis treatment >Sent: Fri, July 23, 2010 12:15:28 PM>Subject: New here>> >Hi!>>We are VERY new to this world of scoliosis. My daughter, Kiya, will be 20 months >old next week. She was diagnosed with moderate scoliosis in June of this year. >She has had an MRI that came back normal (thank goodness). We are seeing a >doctor here in Madison, WI and he is telling us to repeat xrays in 3 months and >decide from there. He mentioned the Boston brace and possibly

body casting but >didn't give a lot of detail. My daughter's curve is currently at 36%. >>>After much research on my own, I read about Mehta casting. I don't even know if >my daughter would qualify for this type of cast. We are looking into applying at >Shriner's hospital in Chicago.>>We adopted my daughter from Ethiopia last year. She came home at just under 6 >months of age with very low muscle tone. She is yet to walk independently but is >getting close. We have her in PT and are looking to qualify for Early >intervention in our state. We worry about not doing anything and it getting a >lot worse and we worry that casting will hold her back devleopment wise. So much >to decide....>>We are hoping to gain insight, info and support as we navigate this process for >our daughter.>>Thanks in advance for any advice, info, etc. Anyone

been to Shriner's in >Chicago? Advice as we start that process?>>>mom, to Kiya, 20 months>>>>>>

[Guest guest]

,

Awww...you are so sweet. Can you believe it's number 6 already? Crazy! One pm is around the same time we had for Bex last cast- one or 1:30...and he didn't go until 3:30! I asked and they said next time to call before coming that morning and ask if the OR is running on time. That's never happened to us before, it was an extreme circumstance with a complicated surgery that day...but still. It is not fun to see your kiddo hungry and not be able to give them milk! I say demand popcicles at least. I hope Isaiah gets moved up. We go 2 weeks after you and I am really dying to hear good news. Bex went up a half shoe size. Is Isaiah growing taller in this one? Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City Shriners, currently down from 62 degrees to 19.7 in cast)

From: <missikay10@...>infantile scoliosis treatment Sent: Fri, July 23, 2010 5:45:50 PMSubject: Re: New here

Heidi,Have I told you lately how great you are in responding and giving great advice? BTW Isaiah gets cast #6 on fri july 30th...and not til 1pm! It will be a rough day for sure. Just wanted to give you kuddos on your responses!Xoxo,NIck Guthe <nickguthe@...> wrote:>Hi , welcome to CAST!>>36 degrees, is that in a lying down X-ray? Standing is more accurate, and will >likely be higher. 36 is already pretty high. My advice is also not to wait to >apply to Shriners. Chicago is a terrific center for this method, many families >love it there! I am sure some will respond soon. Watch and wait or wait and see >is the wrong approach to take, unfortunately, and is the norm to hear from most >doctors. The very best chance for correction

and avoiding multiple spinal >surgeries down the line is a properly applied series of casts done on the >derotational, 3 dimensional table, as Chicago does. A regular Risser cast will >not have the same chance at correction, that is likely the kind your current >doctor referred to (?)>>The best time to begin tretment is under age 2 and under 50-60 degrees. Truly >the sooner, the better, these casts correct along with your child's natural >growth spurts, and you do not want to miss one, as that can allow the condition >to progress fast. Even weeks and certainly months can make a huge differerence >in the length of treatment needed. The surgeries are not easy at all, are much >more invasive, and can have many complications.>>Mehta or EDF casting is the only potential cure, and it is gentle and >non-surgical. At the least, it will postpone surgery

for as long as possible, >while bracing often does not even hold the curve in progressive cases. If you >opt for bracing, the window of correction with proper casting can be lost, in >some cases making surgery necessary very young, as young as 2 or 3, every 6 >months or sooner. It has more than a 100 percent complication rate.>>Parents of children with low muscle tone will know more about that, but they are >here for sure, you can also search for it in older posts on this group. Casting >is hard at first, but very do-able!>>Congratulations on adopting Kiya, you are in the right place to do the very best >thing for your precious child!> Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City Shriners, >currently down from 62 degrees to 19.7 in cast)

>>>>>>________________________________>From: cjustl <cjustl@...>>infantile scoliosis treatment >Sent: Fri, July 23, 2010 12:15:28 PM>Subject: New here>> >Hi!>>We are VERY new to this world of scoliosis. My daughter, Kiya, will be 20 months >old next week. She was diagnosed with moderate scoliosis in June of this year. >She has had an MRI that came back normal (thank goodness). We are seeing a >doctor here in Madison, WI and he is telling us to repeat xrays in 3 months and >decide from there. He mentioned the Boston brace and possibly

body casting but >didn't give a lot of detail. My daughter's curve is currently at 36%. >>>After much research on my own, I read about Mehta casting. I don't even know if >my daughter would qualify for this type of cast. We are looking into applying at >Shriner's hospital in Chicago.>>We adopted my daughter from Ethiopia last year. She came home at just under 6 >months of age with very low muscle tone. She is yet to walk independently but is >getting close. We have her in PT and are looking to qualify for Early >intervention in our state. We worry about not doing anything and it getting a >lot worse and we worry that casting will hold her back devleopment wise. So much >to decide....>>We are hoping to gain insight, info and support as we navigate this process for >our daughter.>>Thanks in advance for any advice, info, etc. Anyone

been to Shriner's in >Chicago? Advice as we start that process?>>>mom, to Kiya, 20 months>>>>>>

[Guest guest]

I saw that Amy gave you fabulous advice- don't worry, you won't get annoying! That is good news that it was taken standing. Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City Shriners, currently down from 62 degrees to 19.7 in cast)

From: cjustl <cjustl@...>infantile scoliosis treatment Sent: Fri, July 23, 2010 5:55:42 PMSubject: Re: New here

Thank you everyone for the fast welcome. We are filling out our Shriner's application this weekend. My daughter's 36% was done as a standing x-ray. I am overwhelmed right now with info and I know I will have a ton of questions. I hope I don't get annoying...> > >Hi , welcome to CAST!> >> >36Â degrees, is that in

a lying down X-ray? Standing is more accurate, and will > >likely be higher. 36 is already pretty high. My advice is also not to wait to > >apply to Shriners. Chicago is a terrific center for this method, many families > >love it there! I am sure some will respond soon. Watch and wait or wait and see > >is the wrong approach to take, unfortunately, and is the norm to hear from most > >doctors. The very best chance for correction and avoiding multiple spinal > >surgeries down the line is a properly applied series of casts done on the > >derotational, 3 dimensional table, as Chicago does. A regular Risser cast will > >not have the same chance at correction, that is likely the kind your current > >doctor referred to (?)> >> >The best time to begin tretment is under age 2 and under 50-60 degrees. Truly > >the sooner, the

better, these casts correct along with your child's natural > >growth spurts, and you do not want to miss one, as that can allow the condition > >to progress fast. Even weeks and certainly months can make a huge differerence > >in the length of treatment needed. The surgeries are not easy at all, are much > >more invasive, and can have many complications.> >> >Mehta or EDF casting is the only potential cure, and it is gentle and > >non-surgical. At the least, it will postpone surgery for as long as possible, > >while bracing often does not even hold the curve in progressive cases. If you > >opt for bracing, the window of correction with proper casting can be lost, in > >some cases making surgery necessary very young, as young as 2 or 3, every 6 > >months or sooner. It has more than a 100 percent complication rate.>

>> >Parents of children with low muscle tone will know more about that, but they are > >here for sure, you can also search for it in older posts on this group. Casting > >is hard at first, but very do-able!> >> >Congratulations on adopting Kiya, you are in the right place to do the very best > >thing for your precious child!> > Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City Shriners, > >currently down from 62 degrees to 19.7 in cast) > >> >> >> >> >> >________________________________> >From: cjustl <cjustl@...>> >infantile scoliosis treatment > >Sent: Fri, July 23, 2010 12:15:28 PM>

>Subject: New here> >> >Â > >Hi!> >> >We are VERY new to this world of scoliosis. My daughter, Kiya, will be 20 months > >old next week. She was diagnosed with moderate scoliosis in June of this year. > >She has had an MRI that came back normal (thank goodness). We are seeing a > >doctor here in Madison, WI and he is telling us to repeat xrays in 3 months and > >decide from there. He mentioned the Boston brace and possibly body casting but > >didn't give a lot of detail. My daughter's curve is currently at 36%. > >> >> >After much research on my own, I read about Mehta casting. I don't even know if > >my daughter would qualify for this type of cast. We are looking into applying at > >Shriner's hospital in Chicago.> >> >We adopted my daughter from Ethiopia

last year. She came home at just under 6 > >months of age with very low muscle tone. She is yet to walk independently but is > >getting close. We have her in PT and are looking to qualify for Early > >intervention in our state. We worry about not doing anything and it getting a > >lot worse and we worry that casting will hold her back devleopment wise. So much > >to decide....> >> >We are hoping to gain insight, info and support as we navigate this process for > >our daughter.> >> >Thanks in advance for any advice, info, etc. Anyone been to Shriner's in > >Chicago? Advice as we start that process?> >> >> >mom, to Kiya, 20 months> >> >> >> >> >> >>

[Guest guest]

I saw that Amy gave you fabulous advice- don't worry, you won't get annoying! That is good news that it was taken standing. Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City Shriners, currently down from 62 degrees to 19.7 in cast)

From: cjustl <cjustl@...>infantile scoliosis treatment Sent: Fri, July 23, 2010 5:55:42 PMSubject: Re: New here

Thank you everyone for the fast welcome. We are filling out our Shriner's application this weekend. My daughter's 36% was done as a standing x-ray. I am overwhelmed right now with info and I know I will have a ton of questions. I hope I don't get annoying...> > >Hi , welcome to CAST!> >> >36Â degrees, is that in

a lying down X-ray? Standing is more accurate, and will > >likely be higher. 36 is already pretty high. My advice is also not to wait to > >apply to Shriners. Chicago is a terrific center for this method, many families > >love it there! I am sure some will respond soon. Watch and wait or wait and see > >is the wrong approach to take, unfortunately, and is the norm to hear from most > >doctors. The very best chance for correction and avoiding multiple spinal > >surgeries down the line is a properly applied series of casts done on the > >derotational, 3 dimensional table, as Chicago does. A regular Risser cast will > >not have the same chance at correction, that is likely the kind your current > >doctor referred to (?)> >> >The best time to begin tretment is under age 2 and under 50-60 degrees. Truly > >the sooner, the

better, these casts correct along with your child's natural > >growth spurts, and you do not want to miss one, as that can allow the condition > >to progress fast. Even weeks and certainly months can make a huge differerence > >in the length of treatment needed. The surgeries are not easy at all, are much > >more invasive, and can have many complications.> >> >Mehta or EDF casting is the only potential cure, and it is gentle and > >non-surgical. At the least, it will postpone surgery for as long as possible, > >while bracing often does not even hold the curve in progressive cases. If you > >opt for bracing, the window of correction with proper casting can be lost, in > >some cases making surgery necessary very young, as young as 2 or 3, every 6 > >months or sooner. It has more than a 100 percent complication rate.>

>> >Parents of children with low muscle tone will know more about that, but they are > >here for sure, you can also search for it in older posts on this group. Casting > >is hard at first, but very do-able!> >> >Congratulations on adopting Kiya, you are in the right place to do the very best > >thing for your precious child!> > Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City Shriners, > >currently down from 62 degrees to 19.7 in cast) > >> >> >> >> >> >________________________________> >From: cjustl <cjustl@...>> >infantile scoliosis treatment > >Sent: Fri, July 23, 2010 12:15:28 PM>

>Subject: New here> >> >Â > >Hi!> >> >We are VERY new to this world of scoliosis. My daughter, Kiya, will be 20 months > >old next week. She was diagnosed with moderate scoliosis in June of this year. > >She has had an MRI that came back normal (thank goodness). We are seeing a > >doctor here in Madison, WI and he is telling us to repeat xrays in 3 months and > >decide from there. He mentioned the Boston brace and possibly body casting but > >didn't give a lot of detail. My daughter's curve is currently at 36%. > >> >> >After much research on my own, I read about Mehta casting. I don't even know if > >my daughter would qualify for this type of cast. We are looking into applying at > >Shriner's hospital in Chicago.> >> >We adopted my daughter from Ethiopia

last year. She came home at just under 6 > >months of age with very low muscle tone. She is yet to walk independently but is > >getting close. We have her in PT and are looking to qualify for Early > >intervention in our state. We worry about not doing anything and it getting a > >lot worse and we worry that casting will hold her back devleopment wise. So much > >to decide....> >> >We are hoping to gain insight, info and support as we navigate this process for > >our daughter.> >> >Thanks in advance for any advice, info, etc. Anyone been to Shriner's in > >Chicago? Advice as we start that process?> >> >> >mom, to Kiya, 20 months> >> >> >> >> >> >>

[Guest guest]

Hello-

I am mom to Timmy, 30 months, and in first cast. He was 60 degrees out of cast, and 45 in cast. We also did the brace for a few months, and a bit of the wait and see. I wish now that I had acted a bit quicker, but hind sight is 20/20. I am responding because I live in a town outside of Milwaukee, WI, and Timmy was casted at the Children's Hospital of Wisconsin. His doc has all the correct equipment, and so far so good. Let me know if want to talk about anything else since we ar neighbors!

From: cjustl <cjustl@...>Subject: New hereinfantile scoliosis treatment Date: Friday, July 23, 2010, 7:15 PM

Hi!We are VERY new to this world of scoliosis. My daughter, Kiya, will be 20 months old next week. She was diagnosed with moderate scoliosis in June of this year. She has had an MRI that came back normal (thank goodness). We are seeing a doctor here in Madison, WI and he is telling us to repeat xrays in 3 months and decide from there. He mentioned the Boston brace and possibly body casting but didn't give a lot of detail. My daughter's curve is currently at 36%. After much research on my own, I read about Mehta casting. I don't even know if my daughter would qualify for this type of cast. We are looking into applying at Shriner's hospital in Chicago.We adopted my daughter from Ethiopia last year. She came home at just under 6 months of age with very low muscle tone. She is yet to walk independently but is getting close. We have her in PT and are looking to qualify for Early intervention in our state. We worry about not doing

anything and it getting a lot worse and we worry that casting will hold her back devleopment wise. So much to decide....We are hoping to gain insight, info and support as we navigate this process for our daughter.Thanks in advance for any advice, info, etc. Anyone been to Shriner's in Chicago? Advice as we start that process?mom, to Kiya, 20 months

[Guest guest]

Hello-

I am mom to Timmy, 30 months, and in first cast. He was 60 degrees out of cast, and 45 in cast. We also did the brace for a few months, and a bit of the wait and see. I wish now that I had acted a bit quicker, but hind sight is 20/20. I am responding because I live in a town outside of Milwaukee, WI, and Timmy was casted at the Children's Hospital of Wisconsin. His doc has all the correct equipment, and so far so good. Let me know if want to talk about anything else since we ar neighbors!

From: cjustl <cjustl@...>Subject: New hereinfantile scoliosis treatment Date: Friday, July 23, 2010, 7:15 PM

Hi!We are VERY new to this world of scoliosis. My daughter, Kiya, will be 20 months old next week. She was diagnosed with moderate scoliosis in June of this year. She has had an MRI that came back normal (thank goodness). We are seeing a doctor here in Madison, WI and he is telling us to repeat xrays in 3 months and decide from there. He mentioned the Boston brace and possibly body casting but didn't give a lot of detail. My daughter's curve is currently at 36%. After much research on my own, I read about Mehta casting. I don't even know if my daughter would qualify for this type of cast. We are looking into applying at Shriner's hospital in Chicago.We adopted my daughter from Ethiopia last year. She came home at just under 6 months of age with very low muscle tone. She is yet to walk independently but is getting close. We have her in PT and are looking to qualify for Early intervention in our state. We worry about not doing

anything and it getting a lot worse and we worry that casting will hold her back devleopment wise. So much to decide....We are hoping to gain insight, info and support as we navigate this process for our daughter.Thanks in advance for any advice, info, etc. Anyone been to Shriner's in Chicago? Advice as we start that process?mom, to Kiya, 20 months

[Guest guest]

Hi , we too are new, our daughter is now 26 months and we have had many of

the challenges cited in numerous postings. We are working through Shriners in

Philadephia and Sick Kids in Toronto and will have our first cast shortly. As

with you the learning curve has been tremendous and this group has been

wonderful to learn and share with. Our daughters curve is to the right thoracic

and it is now worsened since we were seen at the start of July. The progression

in our daughters case has been dramatic in just over a month so with the

exception of a forced delay I would try and get appropriate treatment as soon as

able...you never know when the next phase of growth will happen which is a key

factor for mehta method casting as we have read and had confirmed on this board

if you would like to chat we are here as it sounds like we are travelling

similar paths

Graham and Liz

>

> Hi!

>

> We are VERY new to this world of scoliosis. My daughter, Kiya, will be 20

months old next week. She Hi was diagnosed with moderate scoliosis in June of

this year. She has had an MRI that came back normal (thank goodness). We are

seeing a doctor here in Madison, WI and he is telling us to repeat xrays in 3

months and decide from there. He mentioned the Boston brace and possibly body

casting but didn't give a lot of detail. My daughter's curve is currently at

36%.

>

> After much research on my own, I read about Mehta casting. I don't even know

if my daughter would qualify for this type of cast. We are looking into applying

at Shriner's hospital in Chicago.

>

> We adopted my daughter from Ethiopia last year. She came home at just under 6

months of age with very low muscle tone. She is yet to walk independently but is

getting close. We have her in PT and are looking to qualify for Early

intervention in our state. We worry about not doing anything and it getting a

lot worse and we worry that casting will hold her back devleopment wise. So much

to decide....

>

> We are hoping to gain insight, info and support as we navigate this process

for our daughter.

>

> Thanks in advance for any advice, info, etc. Anyone been to Shriner's in

Chicago? Advice as we start that process?

>

>

> mom, to Kiya, 20 months

>

[Guest guest]

You wont, no worries. Please ask anything to comes to mind. We are to help.

HRH

> Thank you everyone for the fast welcome. We are filling out our Shriner's

> application this weekend. My daughter's 36% was done as a standing x-ray.

> I am overwhelmed right now with info and I know I will have a ton of

> questions. I hope I don't get annoying...

>

>

>

>>

>> >Hi , welcome to CAST!

>> >

>> >36 degrees, is that in a lying down X-ray? Standing is more accurate,

>> and will

>> >likely be higher. 36 is already pretty high. My advice is also not to

>> wait to

>> >apply to Shriners. Chicago is a terrific center for this method, many

>> families

>> >love it there! I am sure some will respond soon. Watch and wait or

>> wait and see

>> >is the wrong approach to take, unfortunately, and is the norm to hear

>> from most

>> >doctors. The very best chance for correction and avoiding multiple

>> spinal

>> >surgeries down the line is a properly applied series of casts done on

>> the

>> >derotational, 3 dimensional table, as Chicago does. A regular Risser

>> cast will

>> >not have the same chance at correction, that is likely the kind your

>> current

>> >doctor referred to (?)

>> >

>> >The best time to begin tretment is under age 2 and under 50-60 degrees.

>> Truly

>> >the sooner, the better, these casts correct along with your child's

>> natural

>> >growth spurts, and you do not want to miss one, as that can allow the

>> condition

>> >to progress fast. Even weeks and certainly months can make a huge

>> differerence

>> >in the length of treatment needed. The surgeries are not easy at all,

>> are much

>> >more invasive, and can have many complications.

>> >

>> >Mehta or EDF casting is the only potential cure, and it is gentle and

>> >non-surgical. At the least, it will postpone surgery for as long as

>> possible,

>> >while bracing often does not even hold the curve in progressive cases.

>> If you

>> >opt for bracing, the window of correction with proper casting can be

>> lost, in

>> >some cases making surgery necessary very young, as young as 2 or 3,

>> every 6

>> >months or sooner. It has more than a 100 percent complication rate.

>> >

>> >Parents of children with low muscle tone will know more about that, but

>> they are

>> >here for sure, you can also search for it in older posts on this group.

>> Casting

>> >is hard at first, but very do-able!

>> >

>> >Congratulations on adopting Kiya, you are in the right place to do the

>> very best

>> >thing for your precious child!

>> > Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City

>> Shriners,

>> >currently down from 62 degrees to 19.7 in cast)

>> >

>> >

>> >

>> >

>> >

>> >________________________________

>> >From: cjustl <cjustl@...>

>> >infantile scoliosis treatment

>> >Sent: Fri, July 23, 2010 12:15:28 PM

>> >Subject: New here

>> >

>> > 

>> >Hi!

>> >

>> >We are VERY new to this world of scoliosis. My daughter, Kiya, will be

>> 20 months

>> >old next week. She was diagnosed with moderate scoliosis in June of

>> this year.

>> >She has had an MRI that came back normal (thank goodness). We are

>> seeing a

>> >doctor here in Madison, WI and he is telling us to repeat xrays in 3

>> months and

>> >decide from there. He mentioned the Boston brace and possibly body

>> casting but

>> >didn't give a lot of detail. My daughter's curve is currently at 36%.

>> >

>> >

>> >After much research on my own, I read about Mehta casting. I don't even

>> know if

>> >my daughter would qualify for this type of cast. We are looking into

>> applying at

>> >Shriner's hospital in Chicago.

>> >

>> >We adopted my daughter from Ethiopia last year. She came home at just

>> under 6

>> >months of age with very low muscle tone. She is yet to walk

>> independently but is

>> >getting close. We have her in PT and are looking to qualify for Early

>> >intervention in our state. We worry about not doing anything and it

>> getting a

>> >lot worse and we worry that casting will hold her back devleopment

>> wise. So much

>> >to decide....

>> >

>> >We are hoping to gain insight, info and support as we navigate this

>> process for

>> >our daughter.

>> >

>> >Thanks in advance for any advice, info, etc. Anyone been to Shriner's

>> in

>> >Chicago? Advice as we start that process?

>> >

>> >

>> >mom, to Kiya, 20 months

>> >

>> >

>> >

>> >

>> >

>> >

>>

>

>

>

[Guest guest]

Hi ,

We live in the Milwaukee area and have 1.5 years of casting experience and are

willing to give you advice re: Chicago Shriners as well as Salt Lake City

Shriners. Please email us direct to discuss, as time is of the essence just as

Graham and Liz mentioned; the spine will continue to curve, since nature is

taking its course. Your daughter and family are in our prayers, but do know

there is much hope with the Mehta EDF casting procedure!

We look forward to speaking with you.

& Jerge

> >

> > Hi!

> >

> > We are VERY new to this world of scoliosis. My daughter, Kiya, will be 20

months old next week. She Hi was diagnosed with moderate scoliosis in June of

this year. She has had an MRI that came back normal (thank goodness). We are

seeing a doctor here in Madison, WI and he is telling us to repeat xrays in 3

months and decide from there. He mentioned the Boston brace and possibly body

casting but didn't give a lot of detail. My daughter's curve is currently at

36%.

> >

> > After much research on my own, I read about Mehta casting. I don't even know

if my daughter would qualify for this type of cast. We are looking into applying

at Shriner's hospital in Chicago.

> >

> > We adopted my daughter from Ethiopia last year. She came home at just under

6 months of age with very low muscle tone. She is yet to walk independently but

is getting close. We have her in PT and are looking to qualify for Early

intervention in our state. We worry about not doing anything and it getting a

lot worse and we worry that casting will hold her back devleopment wise. So much

to decide....

> >

> > We are hoping to gain insight, info and support as we navigate this process

for our daughter.

> >

> > Thanks in advance for any advice, info, etc. Anyone been to Shriner's in

Chicago? Advice as we start that process?

> >

> >

> > mom, to Kiya, 20 months

> >

>

[Guest guest]

Hi,

I just wanted to add that I believe the children's orthopediac hospital in Milwaukee is now casting, so you might not have to travel. Call for info.

But I also know Chicago is not much of a drive from Milwaukee. Plus it's a Shriner's so you wouldn't have to worry about insurance issues.

~Noah 5 years old9 months of casting in SLC; 2 1/2 years of bracing; Currently treatment-free at 8*And Mariella 1 yr old - resolved Infantile Scoliosis

infantile scoliosis treatment From: jerges@...Date: Thu, 29 Jul 2010 05:00:04 +0000Subject: Re: New here

Hi ,We live in the Milwaukee area and have 1.5 years of casting experience and are willing to give you advice re: Chicago Shriners as well as Salt Lake City Shriners. Please email us direct to discuss, as time is of the essence just as Graham and Liz mentioned; the spine will continue to curve, since nature is taking its course. Your daughter and family are in our prayers, but do know there is much hope with the Mehta EDF casting procedure!We look forward to speaking with you. & Jerge> >> > Hi!> > > > We are VERY new to this world of scoliosis. My daughter, Kiya, will be 20 months old next week. She Hi was diagnosed with moderate scoliosis in June of this year. She has had an MRI that came back normal (thank goodness). We are seeing a doctor here in Madison, WI and he is telling us to repeat xrays in 3 months and decide from there. He mentioned the Boston brace and possibly body casting but didn't give a lot of detail. My daughter's curve is currently at 36%. > > > > After much research on my own, I read about Mehta casting. I don't even know if my daughter would qualify for this type of cast. We are looking into applying at Shriner's hospital in Chicago.> > > > We adopted my daughter from Ethiopia last year. She came home at just under 6 months of age with very low muscle tone. She is yet to walk independently but is getting close. We have her in PT and are looking to qualify for Early intervention in our state. We worry about not doing anything and it getting a lot worse and we worry that casting will hold her back devleopment wise. So much to decide....> > > > We are hoping to gain insight, info and support as we navigate this process for our daughter.> > > > Thanks in advance for any advice, info, etc. Anyone been to Shriner's in Chicago? Advice as we start that process?> > > > > > mom, to Kiya, 20 months> >>

[Guest guest]

Oops - I just noticed that you're in Madison (not Milwaukee.)

Just in case you haven't reached anyone in Chicago yet...the person that you'll want to speak with is Cree. She'll be able to help you with all questions.

Also, I wanted to let you know that my son too was diagnoised at 20 months with a 36* curve. I agree with the advice that you shouldn't wait 3 months. You'll want to move fast as time is of the essence. Chicago Shriner's will understand that as well so you'll be in good hands : )

~Noah 5 years old9 months of casting in SLC; 2 1/2 years of bracing; Currently treatment-free at 8*And Mariella 1 yr old - resolved Infantile Scoliosis

infantile scoliosis treatment From: christina_borlik@...Date: Tue, 3 Aug 2010 12:48:50 -0500Subject: RE: Re: New here

Hi,I just wanted to add that I believe the children's orthopediac hospital in Milwaukee is now casting, so you might not have to travel. Call for info. But I also know Chicago is not much of a drive from Milwaukee. Plus it's a Shriner's so you wouldn't have to worry about insurance issues. ~Noah 5 years old9 months of casting in SLC; 2 1/2 years of bracing; Currently treatment-free at 8*And Mariella 1 yr old - resolved Infantile Scoliosis

infantile scoliosis treatment From: jerges@...Date: Thu, 29 Jul 2010 05:00:04 +0000Subject: Re: New here

Hi ,We live in the Milwaukee area and have 1.5 years of casting experience and are willing to give you advice re: Chicago Shriners as well as Salt Lake City Shriners. Please email us direct to discuss, as time is of the essence just as Graham and Liz mentioned; the spine will continue to curve, since nature is taking its course. Your daughter and family are in our prayers, but do know there is much hope with the Mehta EDF casting procedure!We look forward to speaking with you. & Jerge> >> > Hi!> > > > We are VERY new to this world of scoliosis. My daughter, Kiya, will be 20 months old next week. She Hi was diagnosed with moderate scoliosis in June of this year. She has had an MRI that came back normal (thank goodness). We are seeing a doctor here in Madison, WI and he is telling us to repeat xrays in 3 months and decide from there. He mentioned the Boston brace and possibly body casting but didn't give a lot of detail. My daughter's curve is currently at 36%. > > > > After much research on my own, I read about Mehta casting. I don't even know if my daughter would qualify for this type of cast. We are looking into applying at Shriner's hospital in Chicago.> > > > We adopted my daughter from Ethiopia last year. She came home at just under 6 months of age with very low muscle tone. She is yet to walk independently but is getting close. We have her in PT and are looking to qualify for Early intervention in our state. We worry about not doing anything and it getting a lot worse and we worry that casting will hold her back devleopment wise. So much to decide....> > > > We are hoping to gain insight, info and support as we navigate this process for our daughter.> > > > Thanks in advance for any advice, info, etc. Anyone been to Shriner's in Chicago? Advice as we start that process?> > > > > > mom, to Kiya, 20 months> >>

[Guest guest]

When we get a few posts all going the same way it can seem like

everyone agrees, but remember that there are over 3,000 people in

this group.  I doubt there is anything on which we all agree.  Each

case is different.  We seriously talked about whether we could cope

with our son as he got older when he was small and very difficult to

cope with.  It turned out that it got easier.  Whether you can cope

with having a child in your home is not necessarily a measure of how

much you love them.  Sometimes the 'ideal' solution is not the one

that works best.  And you do have to consider the effect the

decision has on others.  I am grateful that things have turned out

well for us (so far), but I don't want to judge others who have a

different experience because there was no guarantee for us that

things would turn out well.  We decided not to have any more

children, finding one hard enough to cope with, but, as they say,

accidents do happen.  We were lucky that our daughter is very placid

and handles her brother with much patience.  She needs very little

attention, so doesn't resent the amount of effort that goes into

helping her brother.  Over time we have found ways of spending time

doing things she likes without causing problems with her brother.

All opinions offered here are simply that, opinions.  None of us are

so much experts that you need to measure yourself against us.  There

are people coping with kids I know I couldn't cope with.  I admire

them, but don't feel bad about knowing I couldn't do it.  We all get

tired of struggling to help our kids, and we all know what it feels

like to struggle while they seem to be fighting against us.  I have

more than once rung my Mum to apologise after realising what she

went through with me.  I don't ring her any more to complain about

my son, because I got tired of hearing "yes, you used to do that".

I don't have any advice on what you should do, but wanted you to

know that there are many people on here who relate to what you're

going through.

On 20/08/2010 10:34 PM, lsfdunit37 wrote:

 

Hi everyone, I joined this support group on a

reccomendation of someone. I haven't had a chance to read

all post just the past few. I'm wondering if this is the

right place for me. I've read about how a lot are against

group home and seem to have a lot of empathy towards their

child and ready to do this the rest of their life. My son

is 14, I adopted him at 2 out of foster care. He's had the

dx of RAD and PDD with it recently changing to Asp. I see

the Asp more as he gets older. Strangers don't realize

there's anything wrong with him as he can present very

well. He lies non stop and manipulates all the time. It

seems his daily function is to get what he wants and what

he wants changes by the minute. I can't see him living on

his own and we can't see ourselves doing this forever.

Everyday is a struggle and life with him is very hard. I

feel guilty reading others posts because I wish I felt as

strongly about my son and keeping him with me forever as a

lot of people se! em too. I am really tired of daily

arguements, stuff being broken, and directing his every

move all day. We have 17 month old twins and I wonder how

much they'll get cheated out of attentions. My son

requires way more work than the babies. My son is high

functioning enough that he realizes he's different but not

enough to change. He thinks we're all wrong daily. I guess

my question is, does any one else just get tired of it? It

puts such a strain of relationships. My first husband and

I who adoped him divorced because he wanted to relinquish

the adoption. I've fought tooth and nail for him and his

well being but as he's older (and I'm older) I wonder how

many more things I can sacrafice. UGH. This all sounds bad

as I'm writing it. I went to every specialist, done every

therapy for 12 years and I guess I'm just tired.

Jackie

[Guest guest]

Hi jackie, nice to meet you and I welcome you to this group.

You just happened to jump in at a time several of us had strong opinions

about group homes, but that is all they are is opinions. You have to

find what is best for you and your family so please never feel guilty

about anything. We have all been exhausted and at the end of our ropes

as you are now, it is normal and natural to feel the way you do.

I am amazed I have made it through such terrible times with my son. I

did look for outside help for him for many years, but just could not

find any help, so I finally just accepted he was supposed to live with

me and really it has worked out fine. I never would have imagined I

would have had a life like this, but once I accepted it it has been

fine. And my second husband and are paid very well here in Oregon to

take care of my son, one of the perks I never knew existed after our

many lean years barely making it, I think many people would love the

opportunity to stay home all day and that be their job and be paid very

well. No kidding, I am a " domestic employee " for my son with an income,

also he and I both get federal Social Security so we are fine...

Well need to get hopping here, taking three of my grandkids to the

county fair today, supposed to be nice and cool for a change. With us

caring for my son, I can go and is here to watch him, or I am here

and he can go out. My son is not violent anymore, does not throw things

or scratch or bite, thank the Lord! We just have to get him out of bed

in the morning, bathe him, dress him, put him in his chair, hook up his

food tube, get him up out of his chair a few times a day and take him to

the bathroom where we change his Depends, and put him to bed at night.

He is very happy in his chair creating macrame shoe lace designs, he

does that all day long then we put him to bed.

Other than that we have to make sure he is healthy, he cannot talk so

any little symptom we have to jump on immediately, he used to get

aspiration pneumonia a lot but we got some of his teeth pulled in April

and he has not been sick since, which is wonderful! We feel like we are

in Heaven. Here at home he sees parts of his family every day and

interacts with them in his way, and feels very secure and comfortable.

Last Sunday we had a birthday party for him and his sister, one of his

brothers, and five nieces and nephews sang happy birthday to him. He was

46, amazing he has lived this long when they said he probably wouldn't

because of all his seizures.

We take him to church on Sunday evenings, and all the people greet him

and we go to picnics and things, used to go more but my husband had open

heart surgery in Jan. and it kind of slowed us down. He couldn't help me

bath Marty for several months and so I had my daughter come over and

help for awhile until I got stronger, mostly I just have to have

somebody balance him as he cannot walk alone anymore without support.

Also I bought a new Dodge Caravan wheelchair van in Jan. and used it for

awhile, just put Marty in his wheelchair in the house and rolled him

down the ramp and right into it. I also use it for my 92 year old mom as

she cannot get around anymore either without a wheelchair. Then when

got stronger we started walking him down the ramp and getting him

into the old van, Marty really does need to be walked to keep his lungs

clear and walks very well with support, but is getting knee

replacement surgery in the next few months so I will no doubt have to

use the new van again. It only has about 1,200 miles on it so far...

Well I am writing a book here, just wanted to encourage you in your

efforts to take care of your son and your young children, and let you

know that God will help you as you turn to Him, He will make a way when

there is no way, or seems to be no way. He gave you your son and it was

no accident, He has a plan for your lives to use you for His glory..to

encourage others I believe.

Keep writing, it helps!

Much love,

Carolyn in OR ;o))

lsfdunit37 wrote:

>

> Hi everyone, I joined this support group on a reccomendation of

> someone. I haven't had a chance to read all post just the past few.

> I'm wondering if this is the right place for me. I've read about how a

> lot are against group home and seem to have a lot of empathy towards

> their child and ready to do this the rest of their life. My son is 14,

> I adopted him at 2 out of foster care. He's had the dx of RAD and PDD

> with it recently changing to Asp. I see the Asp more as he gets older.

> Strangers don't realize there's anything wrong with him as he can

> present very well. He lies non stop and manipulates all the time. It

> seems his daily function is to get what he wants and what he wants

> changes by the minute. I can't see him living on his own and we can't

> see ourselves doing this forever. Everyday is a struggle and life with

> him is very hard. I feel guilty reading others posts because I wish I

> felt as strongly about my son and keeping him with me forever as a lot

> of people seem too. I am really tired of daily arguements, stuff being

> broken, and directing his every move all day. We have 17 month old

> twins and I wonder how much they'll get cheated out of attentions. My

> son requires way more work than the babies. My son is high functioning

> enough that he realizes he's different but not enough to change. He

> thinks we're all wrong daily. I guess my question is, does any one

> else just get tired of it? It puts such a strain of relationships. My

> first husband and I who adoped him divorced because he wanted to

> relinquish the adoption. I've fought tooth and nail for him and his

> well being but as he's older (and I'm older) I wonder how many more

> things I can sacrafice. UGH. This all sounds bad as I'm writing it. I

> went to every specialist, done every therapy for 12 years and I guess

> I'm just tired.

> Jackie

>

>

[Guest guest]

, I really enjoyed your letter, you are very practical, I like

that. I think the coping part is what has been hard, when I was young I

was not as strong as I am now and would get quite upset, even loose my

temper at times. I did not see how I could ever live through such a

nightmare, and yet I did, and I have, and here I still am and it has not

been the only nightmare I have lived through. My husband turning against

me and turning to alcohol was worse, his betrayal, well what it seemed

to me to be was really hard. Seemed the guy wanted to bring the whole

family down.

And how did I cope, well I enrolled in college and earned two degrees,

just went the other way entirely and figured it was time for me to take

responsibility for my life. We'd married as teenagers and evidentially

he was not going to see me though. So the best thing I learned from my

son, and others, is we need to take responsibility and make choices. I

chose to keep my son and to take care of him, once I gave up my double

mind about it, thinking it would get easier then I got peace, and

strangely enough he got better!

I attribute it to God myself. And He sent me a big old guy, very big

and very strong and strangely enough he LOVED my son, so he has been a

great help in all of this, I can really count on him. On the other hand

he has had challenges of his own that have made me cope. It has been no

picnic either.

I think though you hit a key when you said cope, we all have to cope one

way or other. I didn't think I could cope with having my son far from me

and wondering if he was sad and lonely or hurt or abused. That I could

not have coped with, so I kept him close and had to cope with him in

another way.

Got to go, fair is waiting to take my money $$$, talk to you soon!

Carolyn

Riley wrote:

>

>

> When we get a few posts all going the same way it can seem like

> everyone agrees, but remember that there are over 3,000 people in this

> group. I doubt there is anything on which we all agree. Each case is

> different. We seriously talked about whether we could cope with our

> son as he got older when he was small and very difficult to cope

> with. It turned out that it got easier. Whether you can cope with

> having a child in your home is not necessarily a measure of how much

> you love them. Sometimes the 'ideal' solution is not the one that

> works best. And you do have to consider the effect the decision has

> on others. I am grateful that things have turned out well for us (so

> far), but I don't want to judge others who have a different experience

> because there was no guarantee for us that things would turn out

> well. We decided not to have any more children, finding one hard

> enough to cope with, but, as they say, accidents do happen. We were

> lucky that our daughter is very placid and handles her brother with

> much patience. She needs very little attention, so doesn't resent the

> amount of effort that goes into helping her brother. Over time we

> have found ways of spending time doing things she likes without

> causing problems with her brother.

>

> All opinions offered here are simply that, opinions. None of us are

> so much experts that you need to measure yourself against us. There

> are people coping with kids I know I couldn't cope with. I admire

> them, but don't feel bad about knowing I couldn't do it. We all get

> tired of struggling to help our kids, and we all know what it feels

> like to struggle while they seem to be fighting against us. I have

> more than once rung my Mum to apologise after realising what she went

> through with me. I don't ring her any more to complain about my son,

> because I got tired of hearing " yes, you used to do that " .

>

> I don't have any advice on what you should do, but wanted you to know

> that there are many people on here who relate to what you're going

> through.

>

>

>

>

>

> On 20/08/2010 10:34 PM, lsfdunit37 wrote:

>

>>

>>

>> Hi everyone, I joined this support group on a reccomendation of

>> someone. I haven't had a chance to read all post just the past few.

>> I'm wondering if this is the right place for me. I've read about how

>> a lot are against group home and seem to have a lot of empathy

>> towards their child and ready to do this the rest of their life. My

>> son is 14, I adopted him at 2 out of foster care. He's had the dx of

>> RAD and PDD with it recently changing to Asp. I see the Asp more as

>> he gets older. Strangers don't realize there's anything wrong with

>> him as he can present very well. He lies non stop and manipulates all

>> the time. It seems his daily function is to get what he wants and

>> what he wants changes by the minute. I can't see him living on his

>> own and we can't see ourselves doing this forever. Everyday is a

>> struggle and life with him is very hard. I feel guilty reading others

>> posts because I wish I felt as strongly about my son and keeping him

>> with me forever as a lot of people se! em too. I am really tired of

>> daily arguements, stuff being broken, and directing his every move

>> all day. We have 17 month old twins and I wonder how much they'll get

>> cheated out of attentions. My son requires way more work than the

>> babies. My son is high functioning enough that he realizes he's

>> different but not enough to change. He thinks we're all wrong daily.

>> I guess my question is, does any one else just get tired of it? It

>> puts such a strain of relationships. My first husband and I who

>> adoped him divorced because he wanted to relinquish the adoption.

>> I've fought tooth and nail for him and his well being but as he's

>> older (and I'm older) I wonder how many more things I can sacrafice.

>> UGH. This all sounds bad as I'm writing it. I went to every

>> specialist, done every therapy for 12 years and I guess I'm just tired.

>> Jackie

>>

>

[Guest guest]

Jackie, I understand where you're coming from and I agree 100%. I'm raising my 6 year old greaat grandson who is PDD-NOS and is ADHD. His mother says she couldn't "handle" him so out of frustration I had him move in with me. Not one family member offers to help. Oh they say that they can see an improvement in his behavior, less rages, he's on meds now. I love him dearly and don't want to see him put into the "system" but I don't know what the futures going to hold, I'm 63 and he's 6, and I know I can't live forever. I almost forgot, I also work full time. There are some nights that I just sit and cry, yes like you, I'm tired ... physically and mentelly ... and there only me and and a six year old who doesn't understand.

Sorry about the venting, I has to be so hard caring for twin babies along with your son. It must seem like you're beating your head against the wall. Are there any programs in your area that can offer respit services? My heart goes out to everyone raising these special children ... they are special and so are you but that doesn't make it any easier. I truely wish I had some answers... .

From: lsfdunit37 <lsfdunit37@...>Autism and Aspergers Treatment Sent: Fri, August 20, 2010 7:34:08 AMSubject: New here

Hi everyone, I joined this support group on a reccomendation of someone. I haven't had a chance to read all post just the past few. I'm wondering if this is the right place for me. I've read about how a lot are against group home and seem to have a lot of empathy towards their child and ready to do this the rest of their life. My son is 14, I adopted him at 2 out of foster care. He's had the dx of RAD and PDD with it recently changing to Asp. I see the Asp more as he gets older. Strangers don't realize there's anything wrong with him as he can present very well. He lies non stop and manipulates all the time. It seems his daily function is to get what he wants and what he wants changes by the minute. I can't see him living on his own and we can't see ourselves doing this forever. Everyday is a struggle and life with him is very hard. I feel guilty reading others posts because I wish I felt as strongly about my son and keeping him with me forever as a

lot of people seem too. I am really tired of daily arguements, stuff being broken, and directing his every move all day. We have 17 month old twins and I wonder how much they'll get cheated out of attentions. My son requires way more work than the babies. My son is high functioning enough that he realizes he's different but not enough to change. He thinks we're all wrong daily. I guess my question is, does any one else just get tired of it? It puts such a strain of relationships. My first husband and I who adoped him divorced because he wanted to relinquish the adoption. I've fought tooth and nail for him and his well being but as he's older (and I'm older) I wonder how many more things I can sacrafice. UGH. This all sounds bad as I'm writing it. I went to every specialist, done every therapy for 12 years and I guess I'm just tired.Jackie

[Guest guest]

Hi .

Thank you for your input, I appreciate it. On the RAD support groups I think

parents have a twisted sense of humor and vent about their kids in a way that

other parents would find mean. I love my son but I have to admit to hiding in

the bathroom for a long time to get a break from him. I'm finding aspergers has

such a huge variety that you don't find a lot of kids exactly alike.

Jackie

> >

> > Hi everyone, I joined this support group on a reccomendation of

> > someone. I haven't had a chance to read all post just the past few.

> > I'm wondering if this is the right place for me. I've read about how a

> > lot are against group home and seem to have a lot of empathy towards

> > their child and ready to do this the rest of their life. My son is 14,

> > I adopted him at 2 out of foster care. He's had the dx of RAD and PDD

> > with it recently changing to Asp. I see the Asp more as he gets older.

> > Strangers don't realize there's anything wrong with him as he can

> > present very well. He lies non stop and manipulates all the time. It

> > seems his daily function is to get what he wants and what he wants

> > changes by the minute. I can't see him living on his own and we can't

> > see ourselves doing this forever. Everyday is a struggle and life with

> > him is very hard. I feel guilty reading others posts because I wish I

> > felt as strongly about my son and keeping him with me forever as a lot

> > of people se! em too. I am really tired of daily arguements, stuff

> > being broken, and directing his every move all day. We have 17 month

> > old twins and I wonder how much they'll get cheated out of attentions.

> > My son requires way more work than the babies. My son is high

> > functioning enough that he realizes he's different but not enough to

> > change. He thinks we're all wrong daily. I guess my question is, does

> > any one else just get tired of it? It puts such a strain of

> > relationships. My first husband and I who adoped him divorced because

> > he wanted to relinquish the adoption. I've fought tooth and nail for

> > him and his well being but as he's older (and I'm older) I wonder how

> > many more things I can sacrafice. UGH. This all sounds bad as I'm

> > writing it. I went to every specialist, done every therapy for 12

> > years and I guess I'm just tired.

> > Jackie

> >

> >

>

[Guest guest]

Hi Jackie

My heart goes out to you and you're family it is a heartbreaking story. Please

hang in there and remember noone will take him in and treat him the way you do .

Have you tried medication ? I am against medication but I know if its severe or

it gets severe I would try it. Take care

New here

 

Hi everyone, I joined this support group on a reccomendation of someone. I

haven't had a chance to read all post just the past few. I'm wondering if this

is the right place for me. I've read about how a lot are against group home and

seem to have a lot of empathy towards their child and ready to do this the rest

of their life. My son is 14, I adopted him at 2 out of foster care. He's had the

dx of RAD and PDD with it recently changing to Asp. I see the Asp more as he

gets older. Strangers don't realize there's anything wrong with him as he can

present very well. He lies non stop and manipulates all the time. It seems his

daily function is to get what he wants and what he wants changes by the minute.

I can't see him living on his own and we can't see ourselves doing this forever.

Everyday is a struggle and life with him is very hard. I feel guilty reading

others posts because I wish I felt as strongly about my son and keeping him with

me forever as a lot of people seem too. I am really tired of daily arguements,

stuff being broken, and directing his every move all day. We have 17 month old

twins and I wonder how much they'll get cheated out of attentions. My son

requires way more work than the babies. My son is high functioning enough that

he realizes he's different but not enough to change. He thinks we're all wrong

daily. I guess my question is, does any one else just get tired of it? It puts

such a strain of relationships. My first husband and I who adoped him divorced

because he wanted to relinquish the adoption. I've fought tooth and nail for him

and his well being but as he's older (and I'm older) I wonder how many more

things I can sacrafice. UGH. This all sounds bad as I'm writing it. I went to

every specialist, done every therapy for 12 years and I guess I'm just tired.

Jackie

[Guest guest]

Hi Jackie,

I am new to the group as well. I just joined last night. I am sorry you are

having such a rough time. Try to hang in there! We are all going through tough

times, and I'm hoping this group can offer insight and support. I am a single

mother and my five year old was diagnosed at 3. I went to the top experts, and

they all had different opinions. I know it probably feels like you are alone in

this, but you are not. What type of assistance does your son get at school?

What other programs have you tried? If you'd like to e-mail me, please do so.

And your message does not sound bad. It just sounds like you need support. This

disorder is so difficult as each child has different issues and responds better

to different things.

>

> Hi everyone, I joined this support group on a reccomendation of someone. I

haven't had a chance to read all post just the past few. I'm wondering if this

is the right place for me. I've read about how a lot are against group home and

seem to have a lot of empathy towards their child and ready to do this the rest

of their life. My son is 14, I adopted him at 2 out of foster care. He's had the

dx of RAD and PDD with it recently changing to Asp. I see the Asp more as he

gets older. Strangers don't realize there's anything wrong with him as he can

present very well. He lies non stop and manipulates all the time. It seems his

daily function is to get what he wants and what he wants changes by the minute.

I can't see him living on his own and we can't see ourselves doing this forever.

Everyday is a struggle and life with him is very hard. I feel guilty reading

others posts because I wish I felt as strongly about my son and keeping him with

me forever as a lot of people seem too. I am really tired of daily arguements,

stuff being broken, and directing his every move all day. We have 17 month old

twins and I wonder how much they'll get cheated out of attentions. My son

requires way more work than the babies. My son is high functioning enough that

he realizes he's different but not enough to change. He thinks we're all wrong

daily. I guess my question is, does any one else just get tired of it? It puts

such a strain of relationships. My first husband and I who adoped him divorced

because he wanted to relinquish the adoption. I've fought tooth and nail for him

and his well being but as he's older (and I'm older) I wonder how many more

things I can sacrafice. UGH. This all sounds bad as I'm writing it. I went to

every specialist, done every therapy for 12 years and I guess I'm just tired.

> Jackie

>

[Guest guest]

Hi Jackie

Remember it is your sons behaviour you are frustrated at, and not your son. This

allows me to not feel guitly when I get fed up with it all, and believe me that

happens often. I too have a 14yr old high functioning son. It is a tough road to

go through and you have 2 other children to think of also. I have recently

started my son on some extra medication, he has been on dexamphetamine for a few

years and this helps him focus at school but as he has started high school and

social skills are vital at this age I see that his behaviour is really taking

its toll on the kids around him. He is very lonely and is desperate to start

dating and get some close friends. It is hard to explain but I feel his is on

edge all the time and things are always to the extreme. In sheer desperation I

have taken him back to his doctor and they are trialling him on some new

medication to take the edge off. Now I know others are strictly against

medication and believe me it is a last resort but until anyone walks in your

shoes they dont know how hard each person lives are. I just want my son to have

a life as close to normal as possible. As a parent I believe you just want the

best for you son, don't give up all hope yet. Try your doctor and see if there

is more that can be done even if it is some extra medication. I was desperate

but feel there may be a bit more hope left yet.

Good luck with your struggles. I have left you an email if you just need to vent

and not be judged you are in good company here as we all know exactly how you

feel, some of us have even walked in your shoes.

Nicola

[Guest guest]

Hi Jackie,

I want to tell you, I admire how much love you have put into your adoptive son.

I was adopted at birth, and my parents raised me not knowing what was wrong with

me. They just thought I was a brat, lazy, slow, and it was easier for me to stay

home than go anywhere with the family.

My parents still do not know I have been diagnosed with Aspergers as an adult.

I doubt they would accept the diagnosis anyway, and just see it as a cop out for

explaining away my bad behavior as a child.

I am surprised that my adoptive siblings love me as much as they do today,

though we don't live close and hardly ever speak, cept for Facebook and the

occasional phone call.

My mother gave up on me very early on and our relationship today is NILL, but

not due to my behavior, but my religious choices (long story).

I have two Autistic sons (6 and 17). My 6 yo is taking after me in temperament,

but he has the speech issues I didn't have. My oldest is a sweetheart, but his

friends tell him he is weird. He says he knows, but doesn't care if they don't

like him. He says the inability to connect to other people saves him from

getting hurt by friends. He has always been an angel to raise.

Please don't give up on your son. I can tell you, I turned out pretty good. I

am married (18 years now), a mom and I actually have a job, which people can't

believe I can do (apartment managing). Actually, the Aspergers helps me be

stern when I need to be

Your sweet boys needs advocates on his side to help him get to adulthood. I

just wanted you to know that it is possible for those of us with pretty bad

behavior to learn how to DO the right thing. We just need to work harder than

most normal people to accomplish the tasks.

This is too long already,

Ashton

Aspergers Mom with 2 Autistic sons

>

> Hi everyone, I joined this support group on a reccomendation of someone. I

haven't had a chance to read all post just the past few. I'm wondering if this

is the right place for me. I've read about how a lot are against group home and

seem to have a lot of empathy towards their child and ready to do this the rest

of their life. My son is 14, I adopted him at 2 out of foster care. He's had the

dx of RAD and PDD with it recently changing to Asp. I see the Asp more as he

gets older. Strangers don't realize there's anything wrong with him as he can

present very well. He lies non stop and manipulates all the time. It seems his

daily function is to get what he wants and what he wants changes by the minute.

I can't see him living on his own and we can't see ourselves doing this forever.

Everyday is a struggle and life with him is very hard. I feel guilty reading

others posts because I wish I felt as strongly about my son and keeping him with

me forever as a lot of people seem too. I am really tired of daily arguements,

stuff being broken, and directing his every move all day. We have 17 month old

twins and I wonder how much they'll get cheated out of attentions. My son

requires way more work than the babies. My son is high functioning enough that

he realizes he's different but not enough to change. He thinks we're all wrong

daily. I guess my question is, does any one else just get tired of it? It puts

such a strain of relationships. My first husband and I who adoped him divorced

because he wanted to relinquish the adoption. I've fought tooth and nail for him

and his well being but as he's older (and I'm older) I wonder how many more

things I can sacrafice. UGH. This all sounds bad as I'm writing it. I went to

every specialist, done every therapy for 12 years and I guess I'm just tired.

> Jackie

>

[Guest guest]

Ashton,

I can't tell you how much your letter touched me. Thank you! I'm sorry your mom

didn't understand. Seems older generations don't understand it. Back then kids

were just " bad seeds " or " brats. " My dad think a good swat cures all. That's

just the way they are and were raised. Thank goodness we're all evolving and

understanding more. Your life is very encouraging to me and I hope my son can be

as successful as you are. Thank you for sharing.

Best,

Jackie

> >

> > Hi everyone, I joined this support group on a reccomendation of someone. I

haven't had a chance to read all post just the past few. I'm wondering if this

is the right place for me. I've read about how a lot are against group home and

seem to have a lot of empathy towards their child and ready to do this the rest

of their life. My son is 14, I adopted him at 2 out of foster care. He's had the

dx of RAD and PDD with it recently changing to Asp. I see the Asp more as he

gets older. Strangers don't realize there's anything wrong with him as he can

present very well. He lies non stop and manipulates all the time. It seems his

daily function is to get what he wants and what he wants changes by the minute.

I can't see him living on his own and we can't see ourselves doing this forever.

Everyday is a struggle and life with him is very hard. I feel guilty reading

others posts because I wish I felt as strongly about my son and keeping him with

me forever as a lot of people seem too. I am really tired of daily arguements,

stuff being broken, and directing his every move all day. We have 17 month old

twins and I wonder how much they'll get cheated out of attentions. My son

requires way more work than the babies. My son is high functioning enough that

he realizes he's different but not enough to change. He thinks we're all wrong

daily. I guess my question is, does any one else just get tired of it? It puts

such a strain of relationships. My first husband and I who adoped him divorced

because he wanted to relinquish the adoption. I've fought tooth and nail for him

and his well being but as he's older (and I'm older) I wonder how many more

things I can sacrafice. UGH. This all sounds bad as I'm writing it. I went to

every specialist, done every therapy for 12 years and I guess I'm just tired.

> > Jackie

> >

>

[Guest guest]

Dear Jackie,

I deal with a lot of the things You mention in my daughter's second experience of autism/asperger's. So You have my super sympathy.

One time I asked on another list how many parents felt they had a prior agreement with their child (prior to birth), and 3 others said they did too. For me, that puts it into a different perspective. She's not interfering with my having a normal, carefree life, she's teaching me what it really means to love those who aren't kind and be willing to bless them, and keep on blessing them.

For me, this has been priceless.

And Ashton, thank You so much for writing and sharing your experience.

Love,

Francine

Speak with Him Thou for He hearest.

Spirit with Spirit can speak.

Closer is Love than breathing,

Nearer than hands and feet.

(with appreciation for Tennyson)

Re: New here

Ashton,

I can't tell you how much your letter touched me. Thank you! I'm sorry your mom didn't understand. Seems older generations don't understand it. Back then kids were just "bad seeds" or "brats." My dad think a good swat cures all. That's just the way they are and were raised. Thank goodness we're all evolving and understanding more. Your life is very encouraging to me and I hope my son can be as successful as you are. Thank you for sharing.

Best,

Jackie

> >

> > Hi everyone, I joined this support group on a reccomendation of someone. I haven't had a chance to read all post just the past few. I'm wondering if this is the right place for me. I've read about how a lot are against group home and seem to have a lot of empathy towards their child and ready to do this the rest of their life. My son is 14, I adopted him at 2 out of foster care. He's had the dx of RAD and PDD with it recently changing to Asp. I see the Asp more as he gets older. Strangers don't realize there's anything wrong with him as he can present very well. He lies non stop and manipulates all the time. It seems his daily function is to get what he wants and what he wants changes by the minute. I can't see him living on his own and we can't see ourselves doing this forever. Everyday is a struggle and life with him is very hard. I feel guilty reading others posts because I wish I felt as strongly about my son and keeping him with me forever as a lot of people se em too. I am really tired of daily arguements, stuff being broken, and directing his every move all day. We have 17 month old twins and I wonder how much they'll get cheated out of attentions. My son requires way more work than the babies. My son is high functioning enough that he realizes he's different but not enough to change. He thinks we're all wrong daily. I guess my question is, does any one else just get tired of it? It puts such a strain of relationships. My first husband and I who adoped him divorced because he wanted to relinquish the adoption. I've fought tooth and nail for him and his well being but as he's older (and I'm older) I wonder how many more things I can sacrafice. UGH. This all sounds bad as I'm writing it. I went to every specialist, done every therapy for 12 years and I guess I'm just tired.

> > Jackie

> >

>

[Guest guest]

The important thing is now you

know and you can do better and never do another vaccine for ANYBODY.. even the

adults!

Nita,

mom to: 17, Jon 15, 13, 11, 9, Christian (7/16/03 to

8/22/04), 4, Isaac 2 and one cooking due 3/2011

http://momof6.dotphoto.com for

possibly current pictures and http://nitasspot.blogspot.com

Learn from the mistakes of others. Trust me... you can't live long enough

to make them all yourself.

[Guest guest]

Welcome, ! Many of us here also vaccinated our children at first, too, so we know exactly how you feel. I'm curious, what made you change your mind about vaccines?

Winnie new hereVaccinations > Hello i want to introduce myself, my name is christina and ive > mostly lurked this past month. I have been amazed at the > information you all have provided and am so thankful. > Unfortunately all 5 of my kidos were vaccinated, my youngest is > 3, of course this was before i knew better. Thank you so much > for all your hard work in getting this information out there. so > many of us suspect that vaccinations are dangerous but we allow > ourselves to believe in our doctors and nurses. I no longer > allow my children to be vaccinated which is what i felt was > right all along. I should have listened to my inner voice. > Anyways thank you for allowing me to become part of this group > and learn. > >

[Guest guest]

Welcome, Barb-you and hubby will be pro's in no time! You are sure to enjoy this wonderful contraption. For what it's worth, I overcame leukemia and some other chronic ailments through healthy eating, and would never go back to my "old ways". So glad you joined us!From: barb gibbs <bbgibbs99@...>Subject: New Here Date: Wednesday, November 3, 2010, 9:16 AM

I am new to the group. My Vitamix should be arriving today! I am so excited. I have done my homework and am excited about the possibilities this machine has to offer. My husband has cancer, eatting healthy is important to us, so I am anxious to see what all I can do with this machine. I have so many recipes I have found that I want to try, I don't know which to do first lol

I am looking forward to learning from you all.

Barb