intro

[Guest guest]

Hi ,

I have a wonderful pediatrician BUT... he is not the one who first

diagnosed Bella's (6 months old) plagio, as a matter of fact, he

didn't even think it was really a problem until I pursued it on my

own. Since Bella started out in the NICU (Neonatal Intensive Care

Unit) from being 2 month premature, we had to go back for a follow-up

with the development specialist. She is the doctor that diagnosed

Bella, then, with torticollis and plagio. She told me about

everything to request from my doctor. He went along with it, ordered

x-rays for sutures, at my request, gave referral for physical therapy.

Also, the development specialist suggested Bella get evaluated by the

local Infants and Toddlers with Disabilities program. This is a

county program. They come to the house - I see it as a " play date "

for Bella. They monitor her growth and work with her torticollis.

The development doc explained to me that it is common for

pediatricians to have this attitude (not that all do...) but their

main priority is making sure their basic health needs are met - when

it comes to development or special issues - they aren't really trained

to pick up on it - again, not all docs, but it is common.

If you feel like it's an issue, don't take the doctor's advice -

listen to your own instinct and at least have it checked out by a

specialist - for us, it was a development specialist through the

outpatient clinic at the hospital - other parents in this support

group probably have other suggestions, but that is what worked for us.

Good luck, and please keep us posted.

Sincerely,

April- mom to Bella, 6 mos., casting for DOC Band yesterday

--- In Plagiocephaly , " " <stephjerryj@y...>

wrote:

>

> Hi my name is and I am mom to who just turned 5 mos. I

> noticed her head was not looking " normal " many months ago but just

> recently discovered that it could be plagio. The ped confirmed at her

> appt on Monday that it was infact posterior plagio but he kinda laughed

> when I mentioned helmet therapy. He said he thinks it will round out on

> its own. Well how the heck does he know?? He ordered a CT scan to check

> her sutures but I think I really want to see someone with more

> knowledge. What do I do to get her seen by someone else? What kind of

> doc to I ask for? Should I just accept his opinion? Thanks so much!

>

>

>

[Guest guest]

Hi !! This is what I had to do in order to get the helmet. I had to see my ped first, he then had to refer me to a cranial facial specialist/plastic surgeon, then the specialist had to write up a report and send it to my insurance co and once they ok'd it then I could go see the orthotist for the helmet. It depends on your type of insurance but the first step would be to see if you have a cranial facial specialist/plastic surgeon near you and see if your insurance co will pay for you to get an evaluation. In my opinion I wouldn't listen to him, your right how DOES he know her little head will round out? 5 months is a GOOD age to get banded, pretty much the younger they are the better it is and the faster their heads grow. I went thru heck and back with my insurance co, it took me 2 1/2 months just to get an ok from my insurance co to get in to see the cranial facial specialist/plastic surgeon!!!!!! Kaitlyn could have been banded

at 4 1/2-5 months of age, verses almost 8 months!!!! If you have any other questions please feel free to ask, I've been dealing with docs and insurance cos for MONTHS now about this, I'd be more than happy to try and help you out the best I can. My direct email is caswellgirls@... if you need it. Hugs, Bobbi Mommy to Kaitlyn Torticollis and positional plagiocephaly, banded on 12-15-05 Michigan <stephjerryj@...> wrote: Hi my name is and I am mom to who just turned 5 mos. I noticed her head was not looking "normal" many months ago but just recently discovered that it could be plagio. The ped confirmed at her appt on Monday that it was infact posterior plagio but he kinda laughed

when I mentioned helmet therapy. He said he thinks it will round out on its own. Well how the heck does he know?? He ordered a CT scan to check her sutures but I think I really want to see someone with more knowledge. What do I do to get her seen by someone else? What kind of doc to I ask for? Should I just accept his opinion? Thanks so much! __________________________________________________

[Guest guest]

Hi !! This is what I had to do in order to get the helmet. I had to see my ped first, he then had to refer me to a cranial facial specialist/plastic surgeon, then the specialist had to write up a report and send it to my insurance co and once they ok'd it then I could go see the orthotist for the helmet. It depends on your type of insurance but the first step would be to see if you have a cranial facial specialist/plastic surgeon near you and see if your insurance co will pay for you to get an evaluation. In my opinion I wouldn't listen to him, your right how DOES he know her little head will round out? 5 months is a GOOD age to get banded, pretty much the younger they are the better it is and the faster their heads grow. I went thru heck and back with my insurance co, it took me 2 1/2 months just to get an ok from my insurance co to get in to see the cranial facial specialist/plastic surgeon!!!!!! Kaitlyn could have been banded

at 4 1/2-5 months of age, verses almost 8 months!!!! If you have any other questions please feel free to ask, I've been dealing with docs and insurance cos for MONTHS now about this, I'd be more than happy to try and help you out the best I can. My direct email is caswellgirls@... if you need it. Hugs, Bobbi Mommy to Kaitlyn Torticollis and positional plagiocephaly, banded on 12-15-05 Michigan <stephjerryj@...> wrote: Hi my name is and I am mom to who just turned 5 mos. I noticed her head was not looking "normal" many months ago but just recently discovered that it could be plagio. The ped confirmed at her appt on Monday that it was infact posterior plagio but he kinda laughed

when I mentioned helmet therapy. He said he thinks it will round out on its own. Well how the heck does he know?? He ordered a CT scan to check her sutures but I think I really want to see someone with more knowledge. What do I do to get her seen by someone else? What kind of doc to I ask for? Should I just accept his opinion? Thanks so much! __________________________________________________

[Guest guest]

,

I am new to this too, but our pediatrician referred us to a

pediatric neurosurgeon when she felt our son's head had a flat spot

(he's 3 months). Sounds scary, I know but don't worry. I would

definately recommend a second opinion - just in case. From what I

have read their is quicker success (faster results I mean) the

younger they are.

Kim

--- In Plagiocephaly , " " <stephjerryj@y...>

wrote:

>

> Hi my name is and I am mom to who just turned 5

mos. I

> noticed her head was not looking " normal " many months ago but just

> recently discovered that it could be plagio. The ped confirmed at

her

> appt on Monday that it was infact posterior plagio but he kinda

laughed

> when I mentioned helmet therapy. He said he thinks it will round

out on

> its own. Well how the heck does he know?? He ordered a CT scan to

check

> her sutures but I think I really want to see someone with more

> knowledge. What do I do to get her seen by someone else? What kind

of

> doc to I ask for? Should I just accept his opinion? Thanks so much!

>

>

>

[Guest guest]

,

I am new to this too, but our pediatrician referred us to a

pediatric neurosurgeon when she felt our son's head had a flat spot

(he's 3 months). Sounds scary, I know but don't worry. I would

definately recommend a second opinion - just in case. From what I

have read their is quicker success (faster results I mean) the

younger they are.

Kim

--- In Plagiocephaly , " " <stephjerryj@y...>

wrote:

>

> Hi my name is and I am mom to who just turned 5

mos. I

> noticed her head was not looking " normal " many months ago but just

> recently discovered that it could be plagio. The ped confirmed at

her

> appt on Monday that it was infact posterior plagio but he kinda

laughed

> when I mentioned helmet therapy. He said he thinks it will round

out on

> its own. Well how the heck does he know?? He ordered a CT scan to

check

> her sutures but I think I really want to see someone with more

> knowledge. What do I do to get her seen by someone else? What kind

of

> doc to I ask for? Should I just accept his opinion? Thanks so much!

>

>

>

[Guest guest]

,Welcome! I just wanted to say good for you in not just accepting what the doctor tells you. Unfortunately there are still many uneducated peds out there. You can have a free consultation done at a Cranial Technologies clinic, here is thier website Cranial Technologies . You can also make an appointment with a nuero or plastic surgeon or a cranio facial doctor if you want. Your ped is able to prescribe the bands and if they will be supportive of your choice to band if you want to then it will be easiest to go that route. If you would like to get a kind of view of how the whole process goes, you can also check out my son's website, it has his story and lots of pictures. It is My Banded Baby . Hope this helps. CAROLG >> Hi my name is and I am mom to who just turned 5 mos. I > noticed her head was not looking "normal" many months ago but just > recently discovered that it could be plagio. The ped confirmed at her > appt on Monday that it was infact posterior plagio but he kinda laughed > when I mentioned helmet therapy. He said he thinks it will round out on > its own. Well how the heck does he know?? He ordered a CT scan to check > her sutures but I think I really want to see someone with more > knowledge. What do I do to get her seen by someone else? What kind of > doc to I ask for? Should I just accept his opinion? Thanks so much!> > >

[Guest guest]

,Welcome! I just wanted to say good for you in not just accepting what the doctor tells you. Unfortunately there are still many uneducated peds out there. You can have a free consultation done at a Cranial Technologies clinic, here is thier website Cranial Technologies . You can also make an appointment with a nuero or plastic surgeon or a cranio facial doctor if you want. Your ped is able to prescribe the bands and if they will be supportive of your choice to band if you want to then it will be easiest to go that route. If you would like to get a kind of view of how the whole process goes, you can also check out my son's website, it has his story and lots of pictures. It is My Banded Baby . Hope this helps. CAROLG >> Hi my name is and I am mom to who just turned 5 mos. I > noticed her head was not looking "normal" many months ago but just > recently discovered that it could be plagio. The ped confirmed at her > appt on Monday that it was infact posterior plagio but he kinda laughed > when I mentioned helmet therapy. He said he thinks it will round out on > its own. Well how the heck does he know?? He ordered a CT scan to check > her sutures but I think I really want to see someone with more > knowledge. What do I do to get her seen by someone else? What kind of > doc to I ask for? Should I just accept his opinion? Thanks so much!> > >

[Guest guest]

Hi ,

Welcome to the group. Your next step depends on your preference.

First you could check our database to see if there is a local

band/helmet provider. If so you can call and see if they do free

consults. If they do make an appt and get it from the " experts " .

If no local providers then figure where you would have to go. If

not free ask ped if he would refer you. Otherwise ask for referral

to ped neurosurgeon, plastic surgeon, cranial facial. Not all of

them are band friendly. Some peds can be convinced with info from

an ortho that a RX for a band is warranted. We also ahve a ton of

research to help with the convincing

na, 2 1/2 yrs, DOC Grad Feb 04

Kiersten, 6 mos, Repo & Tort

www.thefilyaws.com/plagio/plagio.html

--- In Plagiocephaly , " " <stephjerryj@y...>

wrote:

>

> Hi my name is and I am mom to who just turned 5

mos. I

> noticed her head was not looking " normal " many months ago but just

> recently discovered that it could be plagio. The ped confirmed at

her

> appt on Monday that it was infact posterior plagio but he kinda

laughed

> when I mentioned helmet therapy. He said he thinks it will round

out on

> its own. Well how the heck does he know?? He ordered a CT scan to

check

> her sutures but I think I really want to see someone with more

> knowledge. What do I do to get her seen by someone else? What kind

of

> doc to I ask for? Should I just accept his opinion? Thanks so much!

>

>

>

[Guest guest]

Hi ,

Welcome to the group. Your next step depends on your preference.

First you could check our database to see if there is a local

band/helmet provider. If so you can call and see if they do free

consults. If they do make an appt and get it from the " experts " .

If no local providers then figure where you would have to go. If

not free ask ped if he would refer you. Otherwise ask for referral

to ped neurosurgeon, plastic surgeon, cranial facial. Not all of

them are band friendly. Some peds can be convinced with info from

an ortho that a RX for a band is warranted. We also ahve a ton of

research to help with the convincing

na, 2 1/2 yrs, DOC Grad Feb 04

Kiersten, 6 mos, Repo & Tort

www.thefilyaws.com/plagio/plagio.html

--- In Plagiocephaly , " " <stephjerryj@y...>

wrote:

>

> Hi my name is and I am mom to who just turned 5

mos. I

> noticed her head was not looking " normal " many months ago but just

> recently discovered that it could be plagio. The ped confirmed at

her

> appt on Monday that it was infact posterior plagio but he kinda

laughed

> when I mentioned helmet therapy. He said he thinks it will round

out on

> its own. Well how the heck does he know?? He ordered a CT scan to

check

> her sutures but I think I really want to see someone with more

> knowledge. What do I do to get her seen by someone else? What kind

of

> doc to I ask for? Should I just accept his opinion? Thanks so much!

>

>

>

[Guest guest]

Theresa...

Welcome...you have found a great place to share and to get information and

encouragement. It sounds like you have your hands full at the moment...will

pray your situation improves. In the meantime, jump in to the conversation

anytime. Looking forward to geeting to know you and your family better...

Blessings,

Gail

[Guest guest]

Hi Theresa,

do you have any help? like a respite worker. So you can have a break. I

just heard of a situation where a child (not sure of the DX) had to have 3

respite workers assigned to him because of his behavior. they work with him 7

days a week.

disorderlybehavior <disorderlybehavior@...> wrote:

Hi, My name is Theresa and I have an eleven year old son with AS.

Jake's AS is severe to the point that I am paid to stay home with

him. So I am home 24/7 without much communication with the outside

world, so this may be a long post =) ! He was diagnosed 3 1/2 yrs ago

while in residential care after seeking a dx since he was three. I

also have a twelve year old daughter with behavioral disorder (which

I think may be partially due to having an aspie brother). I have done

alot of research on the www on AS for dx, treatment options, and

causes for AS. As much research as I have done, I still learn new

facts and theories all the time. I recently read Evidence Of Harm,

which just has me furious, as Jake's symptoms began shortly after his

last full set of baby shots at two years old. He is currently on

several different medications to control his aggresive and violent

behavior, and because of those behaviors I am afraid to take him off

the meds and try anything different, so I am considering residential

care again, to try something else in a more controled environment.

The meds he is on have caused excessive weight gain, severe loss of

energy, and I am worried about the long term side effects, a couple

of them are even being researched to be taken off the market.

I'm really glad I found this site and I think I can relate with many

of you, and hope we can share our troubles, ideas, and victories,

thanks for listening.

[Guest guest]

Hi Rose,

Thank you for the concern =). Unfortunately, there is not at the moment any

respite workers qualified to care for Jake in my county, but the county is

working on a facility that would allow me to take him for the weekend once a

month, REALLY looking forward to that. It would'nt be so bad if he at least had

a friend or two, but he just does'nt have the skills to maintain friendships

even though he so much wants to have someone to play with, thats really

heartbreaking as his mom, and he takes it out on me. The respite facility will

provide a good resource for consistant friends, as they are working to pair kids

up with peers they can get along with, and have those same kids together every

month. Just hope it all goes through.

Rose <beachbodytan2002@...> wrote:

Hi Theresa,

do you have any help? like a respite worker. So you can have a break. I

just heard of a situation where a child (not sure of the DX) had to have 3

respite workers assigned to him because of his behavior. they work with him 7

days a week.

disorderlybehavior <disorderlybehavior@...> wrote:

Hi, My name is Theresa and I have an eleven year old son with AS.

Jake's AS is severe to the point that I am paid to stay home with

him. So I am home 24/7 without much communication with the outside

world, so this may be a long post =) ! He was diagnosed 3 1/2 yrs ago

while in residential care after seeking a dx since he was three. I

also have a twelve year old daughter with behavioral disorder (which

I think may be partially due to having an aspie brother). I have done

alot of research on the www on AS for dx, treatment options, and

causes for AS. As much research as I have done, I still learn new

facts and theories all the time. I recently read Evidence Of Harm,

which just has me furious, as Jake's symptoms began shortly after his

last full set of baby shots at two years old. He is currently on

several different medications to control his aggresive and violent

behavior, and because of those behaviors I am afraid to take him off

the meds and try anything different, so I am considering residential

care again, to try something else in a more controled environment.

The meds he is on have caused excessive weight gain, severe loss of

energy, and I am worried about the long term side effects, a couple

of them are even being researched to be taken off the market.

I'm really glad I found this site and I think I can relate with many

of you, and hope we can share our troubles, ideas, and victories,

thanks for listening.

[Guest guest]

Theresa,

I hope it all goes through for you. Being though there is no one in your

county qualified to work with Jake. Would it be possible for them to train

someone? That sounds like a great idea for you both if the facility would take

Jake for a weekend. Sounds like he can meet new people, learn new things, and

would be a change for him. (something different) You would also be able to

unwind & maybe catch up on things you want to do for yourself. I hope others

write in with suggestions on possibilities for you & Jake. so you can have a

break. best luck to you both - Rose

Theresa Harding <disorderlybehavior@...> wrote:

Hi Rose,

Thank you for the concern =). Unfortunately, there is not at the moment any

respite workers qualified to care for Jake in my county, but the county is

working on a facility that would allow me to take him for the weekend once a

month, REALLY looking forward to that. It would'nt be so bad if he at least had

a friend or two, but he just does'nt have the skills to maintain friendships

even though he so much wants to have someone to play with, thats really

heartbreaking as his mom, and he takes it out on me. The respite facility will

provide a good resource for consistant friends, as they are working to pair kids

up with peers they can get along with, and have those same kids together every

month. Just hope it all goes through.

Rose <beachbodytan2002@...> wrote:

Hi Theresa,

do you have any help? like a respite worker. So you can have a break. I

just heard of a situation where a child (not sure of the DX) had to have 3

respite workers assigned to him because of his behavior. they work with him 7

days a week.

disorderlybehavior <disorderlybehavior@...> wrote:

Hi, My name is Theresa and I have an eleven year old son with AS.

Jake's AS is severe to the point that I am paid to stay home with

him. So I am home 24/7 without much communication with the outside

world, so this may be a long post =) ! He was diagnosed 3 1/2 yrs ago

while in residential care after seeking a dx since he was three. I

also have a twelve year old daughter with behavioral disorder (which

I think may be partially due to having an aspie brother). I have done

alot of research on the www on AS for dx, treatment options, and

causes for AS. As much research as I have done, I still learn new

facts and theories all the time. I recently read Evidence Of Harm,

which just has me furious, as Jake's symptoms began shortly after his

last full set of baby shots at two years old. He is currently on

several different medications to control his aggresive and violent

behavior, and because of those behaviors I am afraid to take him off

the meds and try anything different, so I am considering residential

care again, to try something else in a more controled environment.

The meds he is on have caused excessive weight gain, severe loss of

energy, and I am worried about the long term side effects, a couple

of them are even being researched to be taken off the market.

I'm really glad I found this site and I think I can relate with many

of you, and hope we can share our troubles, ideas, and victories,

thanks for listening.

[Guest guest]

Welcome Sassy,

Wow you have your hands full,lol. If you are concerned you can take

advantage of Cranial Technologies free evaluation if there is a clinic

near you. www.cranialtech.com Thier website will also help explain all

the plagio info. and there are assessment charts to help you make a

guess at severity. You have caught this at such an early age, have you

been doing repostioning with her? There are many files here that can

help you with that and we have lots of repo moms to help also. Read

some of the info and the files and ask all the questions you can and it

will help you figure out what way you want to go with this. I know this

can be frustrating but there are many things you can do. Please keep us

posted on your thoughts during this decision process.

CAROLG

>

> Hi everyone ...my name is amanda, i am a 26 year old mother to 5 .3

> boys 2 girls ages 9 5 3 1 amd 4 months old...my 5 year old has

> GS...goldenhar syndrome and has alot of facial deformities. he like so

> many other children with this has a severly mishappen head. but my 4

> month old daughter on the other hand she is a normal child and she got

> her flat head from back sleeping.the dr says that this is normal for

> her and it will fix its self but what i want to know is this... how

> can it be " normal " cause its not going away and gets flatter and

> flatter with every passing day... but anyways just wanted to introduce

> myself to everyone.

> sassy

>

[Guest guest]

Welcome Sassy,

Wow you have your hands full,lol. If you are concerned you can take

advantage of Cranial Technologies free evaluation if there is a clinic

near you. www.cranialtech.com Thier website will also help explain all

the plagio info. and there are assessment charts to help you make a

guess at severity. You have caught this at such an early age, have you

been doing repostioning with her? There are many files here that can

help you with that and we have lots of repo moms to help also. Read

some of the info and the files and ask all the questions you can and it

will help you figure out what way you want to go with this. I know this

can be frustrating but there are many things you can do. Please keep us

posted on your thoughts during this decision process.

CAROLG

>

> Hi everyone ...my name is amanda, i am a 26 year old mother to 5 .3

> boys 2 girls ages 9 5 3 1 amd 4 months old...my 5 year old has

> GS...goldenhar syndrome and has alot of facial deformities. he like so

> many other children with this has a severly mishappen head. but my 4

> month old daughter on the other hand she is a normal child and she got

> her flat head from back sleeping.the dr says that this is normal for

> her and it will fix its self but what i want to know is this... how

> can it be " normal " cause its not going away and gets flatter and

> flatter with every passing day... but anyways just wanted to introduce

> myself to everyone.

> sassy

>

[Guest guest]

Hi ,

Welcome to the group! Do you know if you're near a Cranial Tech

office? They offer free evaluations. You can see if one is near you by

clicking here:

http://www.cranialtech.com/ClinicLocations/index.html

Your baby's plagio is very treatable. She's still so young she would

receive awesome correction. For now you should try aggressively

repositioning her off of her flat spot. Check out our files section,

you'll see a REPOSITIONING HEADQUARTERS folder. I'm sure you'll find

it helpful. Keep us posted on your little one.

-- In Plagiocephaly , " Sassy " <sassy2680@...> wrote:

>

> Hi everyone ...my name is amanda, i am a 26 year old mother to 5 .3

> boys 2 girls ages 9 5 3 1 amd 4 months old...my 5 year old has

> GS...goldenhar syndrome and has alot of facial deformities. he like so

> many other children with this has a severly mishappen head. but my 4

> month old daughter on the other hand she is a normal child and she got

> her flat head from back sleeping.the dr says that this is normal for

> her and it will fix its self but what i want to know is this... how

> can it be " normal " cause its not going away and gets flatter and

> flatter with every passing day... but anyways just wanted to introduce

> myself to everyone.

> sassy

>

[Guest guest]

Hi ,

Welcome to the group! Do you know if you're near a Cranial Tech

office? They offer free evaluations. You can see if one is near you by

clicking here:

http://www.cranialtech.com/ClinicLocations/index.html

Your baby's plagio is very treatable. She's still so young she would

receive awesome correction. For now you should try aggressively

repositioning her off of her flat spot. Check out our files section,

you'll see a REPOSITIONING HEADQUARTERS folder. I'm sure you'll find

it helpful. Keep us posted on your little one.

-- In Plagiocephaly , " Sassy " <sassy2680@...> wrote:

>

> Hi everyone ...my name is amanda, i am a 26 year old mother to 5 .3

> boys 2 girls ages 9 5 3 1 amd 4 months old...my 5 year old has

> GS...goldenhar syndrome and has alot of facial deformities. he like so

> many other children with this has a severly mishappen head. but my 4

> month old daughter on the other hand she is a normal child and she got

> her flat head from back sleeping.the dr says that this is normal for

> her and it will fix its self but what i want to know is this... how

> can it be " normal " cause its not going away and gets flatter and

> flatter with every passing day... but anyways just wanted to introduce

> myself to everyone.

> sassy

>

[Guest guest]

ty stacy im not sure if we are or we are not i just now really noticed her head now that she has a bald spot of hair gone .im taking her for a check up this monday so cross your fingers my dr may not like me much anymore after this visit

-- Re: Intro

Hi ,Welcome to the group! Do you know if you're near a Cranial Techoffice? They offer free evaluations. You can see if one is near you byclicking here:http://www.cranialtech.com/ClinicLocations/index.htmlYour baby's plagio is very treatable. She's still so young she wouldreceive awesome correction. For now you should try aggressivelyrepositioning her off of her flat spot. Check out our files section,you'll see a REPOSITIONING HEADQUARTERS folder. I'm sure you'll findit helpful. Keep us posted on your little one.-- In Plagiocephaly , "Sassy" <sassy2680@...> wrote:>> Hi everyone ...my name is amanda, i am a 26 year old mother to 5 .3> boys 2 girls ages 9 5 3 1 amd 4 months old...my 5 year old has> GS...goldenhar syndrome and has alot of facial deformities. he like so> many other children with this has a severly mishappen head. but my 4> month old daughter on the other hand she is a normal child and she got> her flat head from back sleeping.the dr says that this is normal for> her and it will fix its self but what i want to know is this... how> can it be "normal" cause its not going away and gets flatter and> flatter with every passing day... but anyways just wanted to introduce> myself to everyone.> sassy>

[Guest guest]

ty stacy im not sure if we are or we are not i just now really noticed her head now that she has a bald spot of hair gone .im taking her for a check up this monday so cross your fingers my dr may not like me much anymore after this visit

-- Re: Intro

Hi ,Welcome to the group! Do you know if you're near a Cranial Techoffice? They offer free evaluations. You can see if one is near you byclicking here:http://www.cranialtech.com/ClinicLocations/index.htmlYour baby's plagio is very treatable. She's still so young she wouldreceive awesome correction. For now you should try aggressivelyrepositioning her off of her flat spot. Check out our files section,you'll see a REPOSITIONING HEADQUARTERS folder. I'm sure you'll findit helpful. Keep us posted on your little one.-- In Plagiocephaly , "Sassy" <sassy2680@...> wrote:>> Hi everyone ...my name is amanda, i am a 26 year old mother to 5 .3> boys 2 girls ages 9 5 3 1 amd 4 months old...my 5 year old has> GS...goldenhar syndrome and has alot of facial deformities. he like so> many other children with this has a severly mishappen head. but my 4> month old daughter on the other hand she is a normal child and she got> her flat head from back sleeping.the dr says that this is normal for> her and it will fix its self but what i want to know is this... how> can it be "normal" cause its not going away and gets flatter and> flatter with every passing day... but anyways just wanted to introduce> myself to everyone.> sassy>

[Guest guest]

We shared the diagnosis because it helps the family work together if

we all know what to expect and what might work with the youngest.

They already know something is different. Also, if you are getting

the " That's not fair! " about treating the youngest differently, it is

time to explain that equal is not always fair. Giving each child what

they NEED is what is fair.

Check to see if your local area has a sibling support group too. That

gives them a chance to talk out problems/issues with other kids who

are dealing with the same stuff at home.

Kathy J.

On 4/19/06, thereed8 <thereed8@...> wrote:

> Hello everyone. My name is and I have eight children.

> They range in ages 2 - 10. Two of my daughters were adopted from

> Russia in Sept '05. My husband and I have been happily married for

> 12 years. We both came to accept the Lord and were baptized in the

> mighty Kings River in summer '97.

>

> Two of my children have special needs one of which is on the

> autistic spectrum. We are in the middle of an evaluation finally

> and the autism specialist told us today that he displays many

> autistic characteristics. She also mentioned dysgraphia. I was

> wondering if anybody else had children with dysgraphia with autism?

> My son has horrible handwriting and it is very hard to watch him

> struggle as he writes. He mixes upper and lower case letters and

> has a hard time spelling. Partly due to the dysgraphia and partly

> due to the autism.

>

> It may be my imagination, but after spending a week with him 24/7

> during spring break, I think he has gotten worse. He hardly eats

> anything now and focuses on only a few things because he likes

> routine. He has turned his closet into a display case and refuses

> to sleep under the covers of his bed. His repetitive, " Duh da da

> duh da da duh da da " has everyone (siblings) constantly annoyed with

> him. Can autism get progreesively worse if not addressed? Does it

> peak at a certain age? My son is 6 1/2 years old and I thought I

> read somewhere that autism is most commonly diagnosed around this

> age (at least asperger's).

>

> I was wondering if any of you have shared the diagnosis with your

> older children who might be more understanding once they knew the

> reason for their siblings odd behavior. My older children know

> their brother is different but they often feel like he gets away

> with stuff.

>

> Thanks for listening and I look forward to getting to know some of

> you more.

>

> God Bless,

>

> http://freewebs.com/thereed8/

>

>

>

>

>

>

[Guest guest]

Hi!

I wanted to address your question about siblings and

if you discuss his diagnosis with them. In my

experience, ABSOLUTELY. Zoë and I talk about how God

made Max with PDD, and how God wanted it that way; how

God DOES NOT MAKE MISTAKES. And, how He wanted us to

learn certain things because of it (especially

patience!). It helps her tremendously to know about

his PDD, because it's hard for her to be patient with

him sometimes.

I homeschool, and I recently taught a " class " about

autism, and I talked about Max, too. For most of the

kids, it was like a lightbulb. " Oh " , they said, " I got

frustrated a lot with Max because I thought he was

just weird. Now I know he has PDD. " It made a world of

difference to them.

I've also had a friend ask me, " Should I tell my son

about what Max has? " Absolutely. It really helped this

kid to be more patient with Max.

I think we shy away from discussing it because we

don't want these kids to be " labelled " . I understand,

and for some kids, a label wouldn't help them. But I

think for siblings and some close friends, and

explanation and open discussion really helps. It's a

great opportunity for lessons about how God works in

our lives, too!

- Adrienne

__________________________________________________

[Guest guest]

Subject: ( ) Intro

Hello everyone. My name is and I have eight children.

They range in ages 2 - 10. Two of my daughters were adopted from

Russia in Sept '05. My husband and I have been happily married for

12 years. We both came to accept the Lord and were baptized in the

mighty Kings River in summer '97.

Two of my children have special needs one of which is on the

autistic spectrum. We are in the middle of an evaluation finally

and the autism specialist told us today that he displays many

autistic characteristics. She also mentioned dysgraphia. I was

wondering if anybody else had children with dysgraphia with autism?

My son has horrible handwriting and it is very hard to watch him

struggle as he writes. He mixes upper and lower case letters and

has a hard time spelling. Partly due to the dysgraphia and partly

due to the autism.

It may be my imagination, but after spending a week with him 24/7

during spring break, I think he has gotten worse. He hardly eats

anything now and focuses on only a few things because he likes

routine. He has turned his closet into a display case and refuses

to sleep under the covers of his bed. His repetitive, " Duh da da

duh da da duh da da " has everyone (siblings) constantly annoyed with

him. Can autism get progreesively worse if not addressed? Does it

peak at a certain age? My son is 6 1/2 years old and I thought I

read somewhere that autism is most commonly diagnosed around this

age (at least asperger's).

I was wondering if any of you have shared the diagnosis with your

older children who might be more understanding once they knew the

reason for their siblings odd behavior. My older children know

their brother is different but they often feel like he gets away

with stuff.

Thanks for listening and I look forward to getting to know some of

you more.

God Bless,

http://freewebs.com/thereed8/

Dysgraphia is a common problem for these kids to have. Regression can be a

problem, usually during breaks when the routine is disrupted. This is a

good sign that you might ask fro ESY (extended school year) services so

there is not as much regression over the summer break.

Yes, I would tell all the siblings that their brother has autism and explain

what that means. You can also learn and teach ways to handle stressful

situations but also, sometimes you just have to live through it.

Welcome to our group!

Roxanna

[Guest guest]

Welcome!! And this is the first ... Best step you could make.. Contacting

other parents. I am lucky I have a great stepmom for my kids.. Whom they

visit every other weekend. So get along with the x as best as possible

too!! Its really the best thing for all involved.. Especially the kids!

-- ( ) Intro

Hi, list. I have just joined because I'm going to be having a life-

changing event in the next couple months and want to get help being

prepared! My boyfriend and I live together, and he has a 10-year-

old son with Asperger's from his previous marriage. His son has

been living mostly with my boyfriend's ex-wife, especially since she

moved them to another state a year and a half ago. We are going to

be having his son with us this summer for 2 months. I've been doing

reading and of course my bf and I talk about what's coming and how

we will need to prepare. He's a great dad and a terrific bf, too -

very understanding and supportive. I'm looking for resources that

could help *me* cope with living day-to-day with an Aspie. I want

the time we spend together this summer to be as non-stressful as

possible, for all of us! I am looking at this as a growth

opportunity - I'm going to need to develop skills I have never had

to develop before. I don't want to just spend the summer trying to

leave them alone and avoid contact with his son. Trying to keep

positive, even though I'm kind of scared about the changes that are

coming!! I have been reading " Parenting your Asperger's Child " and

also read " The Curious Incident of the Dog in the Night Time " for a

perspective piece. Any recommendations would be helpful! Thank you

very much in advance.

kimberly

Columbus, OH

[Guest guest]

Subject: ( ) Intro

Hi, list. I have just joined because I'm going to be having a life-

changing event in the next couple months and want to get help being

prepared! My boyfriend and I live together, and he has a 10-year-

old son with Asperger's from his previous marriage. His son has

been living mostly with my boyfriend's ex-wife, especially since she

moved them to another state a year and a half ago. We are going to

be having his son with us this summer for 2 months. I've been doing

reading and of course my bf and I talk about what's coming and how

we will need to prepare. He's a great dad and a terrific bf, too -

very understanding and supportive. I'm looking for resources that

could help *me* cope with living day-to-day with an Aspie. I want

the time we spend together this summer to be as non-stressful as

possible, for all of us! I am looking at this as a growth

opportunity - I'm going to need to develop skills I have never had

to develop before. I don't want to just spend the summer trying to

leave them alone and avoid contact with his son. Trying to keep

positive, even though I'm kind of scared about the changes that are

coming!! I have been reading " Parenting your Asperger's Child " and

also read " The Curious Incident of the Dog in the Night Time " for a

perspective piece. Any recommendations would be helpful! Thank you

very much in advance.

kimberly

Columbus, OH

Wow, ! Welcome to our world. Lol. My best advice is to hang out

here. You will learn a lot just from reading posts - the good, the bad, the

ugly. And also we will be here for when your boyfriend's son arrives for

his visit. So you can always count on support at this end with any

questions you have.

Roxanna

[Guest guest]

Hi ,

Where in Columbus do you live ? I am on the east side in Reynoldsburg. There

is a support near here. I have never been was going to check it out this

evening.

I think you have a great attitude about this new adventure and seem to be

preparing well.

Blessings,

Kathi

Message 22

From: " Roxanna " madideas@...

Date: Tue May 9, 2006 6:42pm(PDT)

Subject: Re: Intro

Subject: ( ) Intro

Hi, list. I have just joined because I'm going to be having a life-

changing event in the next couple months and want to get help being

prepared! My boyfriend and I live together, and he has a 10-year-

old son with Asperger's from his previous marriage. His son has

been living mostly with my boyfriend's ex-wife, especially since she

moved them to another state a year and a half ago. We are going to

be having his son with us this summer for 2 months. I've been doing

reading and of course my bf and I talk about what's coming and how

we will need to prepare. He's a great dad and a terrific bf, too -

very understanding and supportive. I'm looking for resources that

could help *me* cope with living day-to-day with an Aspie. I want

the time we spend together this summer to be as non-stressful as

possible, for all of us! I am looking at this as a growth

opportunity - I'm going to need to develop skills I have never had

to develop before. I don't want to just spend the summer trying to

leave them alone and avoid contact with his son. Trying to keep

positive, even though I'm kind of scared about the changes that are

coming!! I have been reading " Parenting your Asperger's Child " and

also read " The Curious Incident of the Dog in the Night Time " for a

perspective piece. Any recommendations would be helpful! Thank you

very much in advance.

kimberly

Columbus, OH

Wow, ! Welcome to our world. Lol. My best advice is to hang

out

here. You will learn a lot just from reading posts - the good, the

bad, the

ugly. And also we will be here for when your boyfriend's son arrives

for

his visit. So you can always count on support at this end with any

questions you have.

Roxanna