New here

[Guest guest]

Thanks to everyone for the info. If I can.. can I ask another

question?

My specialist says that I need to cut his hair for this... but I can

not find anything about that anywhere. I'd rather not cut his

hair... does anyone know about this?

Also, anyone know anything about dealing with sensative skin? i've

read that there are some problems associated witht this. he tends to

be fairly sensative... any tips on preventing soarness?

o.k. that was 2 questions.

> >

> > Just found out my son needs helmet for his flat spot. Have been

> > fighting with doctor for months trying to get a referral. So now

he

> is

> > 10 months old, and I am afraid we are too late.

> >

> > Looking for any good info on this from people who started with

older

> > kids... or any good advice at all.

> >

> > thanks!

> >

> > Liz

> > Mom to Shane

> >

>

[Guest guest]

Liz,

Some moms choose to cut the hair before treatment is started, but I

have never heard of it being a mandatory thing, the band should fit

fine with the hair the way it is.

The tips for dealing with a sensitive skinned baby that I would give

are, to use the 91% alcohol only(evaporates faster) and to be sure to

allow the band to dry the entire hour after cleaning so there is no

chance of the alcohol irritating the skin. Now iwth Dominick, I could

not give him a bath everyday because of his sensitive skin, so we

used the presoaped Huggies washcloths to wash his hair each night he

wasn't bathed. Works great, we did it right before he ate dinner and

then let the band dry and his head dry good while he ate. You'll want

to wipe his head and the band down every few hours with a dry cloth

during the adjustment period with the sweating to help avoid a rash.

That's all I can think of, maybe others will have more tips for you

also. Good Luck and let me know what the orthotist says about cutting

his hair.

CAROLG

> >

> > We started at 8 months in a Hanger helmet and are just about

> finished.

> > We're so glad we did it. You should har from other moms who

started

> > before their kids were one. A side benefit of starting late is

that

> > they learn to walk with the helmet on so that saves a lot of

> heartache

> > and bumps.

> >

> > Shame on your doctor!!!

> >

> >

> > Columbia, SC

> > Mom to Jack (14 months)

> > Hanger helmeted since May

> >

> >

> > --- In Plagiocephaly , " Liz " <lizohara12@h...>

wrote:

> > >

> > > Just found out my son needs helmet for his flat spot. Have

been

> > > fighting with doctor for months trying to get a referral. So

now

> he

> > is

> > > 10 months old, and I am afraid we are too late.

> > >

> > > Looking for any good info on this from people who started with

> older

> > > kids... or any good advice at all.

> > >

> > > thanks!

> > >

> > > Liz

> > > Mom to Shane

> > >

> >

>

[Guest guest]

Liz,

Some moms choose to cut the hair before treatment is started, but I

have never heard of it being a mandatory thing, the band should fit

fine with the hair the way it is.

The tips for dealing with a sensitive skinned baby that I would give

are, to use the 91% alcohol only(evaporates faster) and to be sure to

allow the band to dry the entire hour after cleaning so there is no

chance of the alcohol irritating the skin. Now iwth Dominick, I could

not give him a bath everyday because of his sensitive skin, so we

used the presoaped Huggies washcloths to wash his hair each night he

wasn't bathed. Works great, we did it right before he ate dinner and

then let the band dry and his head dry good while he ate. You'll want

to wipe his head and the band down every few hours with a dry cloth

during the adjustment period with the sweating to help avoid a rash.

That's all I can think of, maybe others will have more tips for you

also. Good Luck and let me know what the orthotist says about cutting

his hair.

CAROLG

> >

> > We started at 8 months in a Hanger helmet and are just about

> finished.

> > We're so glad we did it. You should har from other moms who

started

> > before their kids were one. A side benefit of starting late is

that

> > they learn to walk with the helmet on so that saves a lot of

> heartache

> > and bumps.

> >

> > Shame on your doctor!!!

> >

> >

> > Columbia, SC

> > Mom to Jack (14 months)

> > Hanger helmeted since May

> >

> >

> > --- In Plagiocephaly , " Liz " <lizohara12@h...>

wrote:

> > >

> > > Just found out my son needs helmet for his flat spot. Have

been

> > > fighting with doctor for months trying to get a referral. So

now

> he

> > is

> > > 10 months old, and I am afraid we are too late.

> > >

> > > Looking for any good info on this from people who started with

> older

> > > kids... or any good advice at all.

> > >

> > > thanks!

> > >

> > > Liz

> > > Mom to Shane

> > >

> >

>

[Guest guest]

Hi Liz.

Welcome to the group! My daughter is a fellow " old-timer " because she

didn't get banded until almost 11 1/2 months. It's comforting to me to

see another person coming on who's faced the same problems - knowing

something was wrong but not being able to find answers until later.

We have all been there. You will get lots of support from this group.

You can check out individual stories in the database and see how much

we all have in common.

You still have time for treatment but it will take a few weeks to get

all the necessary appointments taken care of before your son actually

gets the band or helmet (whichever you choose.) So go now!!!

I didn't do much research between the banding options when I first

found this group. I chose the DOC Band based on the recommendation of

a craniofacial surgeon. His recommendation was based in part on my

daughter's age.

As for cutting his hair, I agree with Carol G. Wait to see what the

orthotist suggests. I went to Cranial Tech and they told me that

having hair actually helps. For the life of me, I can't remember why.

I think it was to help absorb sweat. Now my daughter has a lot of hair

and is such a major sweat-aholic that I can't imagine how I would

manage if she didn't have much hair. Though I want my daughter's hair

to be long for girlish styles, right now it is " Albert Einstein " wild

so I'm hoping a professional trim will allow it some femininity for

that precious hour each day that she's out of the band.

Liliana has some sensitive skin issues as well. Just keep a good eye

on your son's scalp. Because of Liliana's hair I didn't see how two

nasty spots developed overnight and they broke down causing her to

lose critical band time for about a week. We do give her a bath every

day but I'm really just washing her hair. I haven't lathered up her

body with even J & J baby soap for weeks. It dries her out too much. We

use a generic dandruff shampoo. Rinsing her hair takes care of getting

breakfast remnants off her face. I rinse her body with water, that's

it. The J & J shampoo was not eliminating the odor enough and even with

91% alcohol the band was staying stinky too. Now there's no odor at

all either on my baby or the band.

Your son will likely accept the band without much difficulty. It's

definitely tougher for the parents. We are now preparing for band #2

and in the back of my mind I'm wondering if band #3 is lurking in the

future. She'll be 18 months old at the end of #2 so I don't know if

continued treatment will be recommended then.

Hope this info helps. The most important thing I've found from this

group is reassurance that I am not alone in dealing with this problem.

That's the most helpful after being around town for the day and not

seeing anyone else with a helmet or band, facing stares and questions.

I only run into other brachy/plagio babies at the clinic. And you get

friends and family asking " how she's doing with the band " instead of

just how is she doing. But then this group is here complete with

photos and you don't feel alone as much anymore.

~Jen

> > > >

> > > > Just found out my son needs helmet for his flat spot. Have

> been

> > > > fighting with doctor for months trying to get a referral. So

> now

> > he

> > > is

> > > > 10 months old, and I am afraid we are too late.

> > > >

> > > > Looking for any good info on this from people who started with

> > older

> > > > kids... or any good advice at all.

> > > >

> > > > thanks!

> > > >

> > > > Liz

> > > > Mom to Shane

> > > >

> > >

> >

>

[Guest guest]

Hi Liz.

Welcome to the group! My daughter is a fellow " old-timer " because she

didn't get banded until almost 11 1/2 months. It's comforting to me to

see another person coming on who's faced the same problems - knowing

something was wrong but not being able to find answers until later.

We have all been there. You will get lots of support from this group.

You can check out individual stories in the database and see how much

we all have in common.

You still have time for treatment but it will take a few weeks to get

all the necessary appointments taken care of before your son actually

gets the band or helmet (whichever you choose.) So go now!!!

I didn't do much research between the banding options when I first

found this group. I chose the DOC Band based on the recommendation of

a craniofacial surgeon. His recommendation was based in part on my

daughter's age.

As for cutting his hair, I agree with Carol G. Wait to see what the

orthotist suggests. I went to Cranial Tech and they told me that

having hair actually helps. For the life of me, I can't remember why.

I think it was to help absorb sweat. Now my daughter has a lot of hair

and is such a major sweat-aholic that I can't imagine how I would

manage if she didn't have much hair. Though I want my daughter's hair

to be long for girlish styles, right now it is " Albert Einstein " wild

so I'm hoping a professional trim will allow it some femininity for

that precious hour each day that she's out of the band.

Liliana has some sensitive skin issues as well. Just keep a good eye

on your son's scalp. Because of Liliana's hair I didn't see how two

nasty spots developed overnight and they broke down causing her to

lose critical band time for about a week. We do give her a bath every

day but I'm really just washing her hair. I haven't lathered up her

body with even J & J baby soap for weeks. It dries her out too much. We

use a generic dandruff shampoo. Rinsing her hair takes care of getting

breakfast remnants off her face. I rinse her body with water, that's

it. The J & J shampoo was not eliminating the odor enough and even with

91% alcohol the band was staying stinky too. Now there's no odor at

all either on my baby or the band.

Your son will likely accept the band without much difficulty. It's

definitely tougher for the parents. We are now preparing for band #2

and in the back of my mind I'm wondering if band #3 is lurking in the

future. She'll be 18 months old at the end of #2 so I don't know if

continued treatment will be recommended then.

Hope this info helps. The most important thing I've found from this

group is reassurance that I am not alone in dealing with this problem.

That's the most helpful after being around town for the day and not

seeing anyone else with a helmet or band, facing stares and questions.

I only run into other brachy/plagio babies at the clinic. And you get

friends and family asking " how she's doing with the band " instead of

just how is she doing. But then this group is here complete with

photos and you don't feel alone as much anymore.

~Jen

> > > >

> > > > Just found out my son needs helmet for his flat spot. Have

> been

> > > > fighting with doctor for months trying to get a referral. So

> now

> > he

> > > is

> > > > 10 months old, and I am afraid we are too late.

> > > >

> > > > Looking for any good info on this from people who started with

> > older

> > > > kids... or any good advice at all.

> > > >

> > > > thanks!

> > > >

> > > > Liz

> > > > Mom to Shane

> > > >

> > >

> >

>

[Guest guest]

Hi Sherri,

I think anyone can be great in a subject and then lack in another.

My AS son (16) does happen to be great at math, but I don't think

that's a *given* re having Aspergers. Although, long division was

something he had problems with and I don't think ever did as well in

(glad when they got past THAT, LOL).

Writing/motor skill was difficult for my son also. He still holds

his pencil awkwardly but the occupational therapy he got in 6th

grade (privately) helped with his being able to write longer periods

without tiring so easily, and helped him pick up speed and keep it

somewhat legible.

Mine is also a sensitive, nice person. And when around others, it's

very easy to see the awkwardness. Even at home if he's not busy

with something and I just sort of " observe " out of the corner of my

eye, it's like he doesn't know what to do with himself; sort of his

expressions, a movement; hard to describe. But he seems the same

way when talking to others. But when it's " just us " (family) he is

*more normal* when interacting.

>

> HI everyone! Myname is Sherri, and I have two boys (married for

almost 13 years). just turned 9 and is in the process of us

seeing a counselor (had one visit, so I'll keep you posted). He also

gave me an Asperger's scale to fill out upon leaving,a nd to be

honest I'm NOT surprised. I took him at 5 1/2 because I thought at

age 4, he had Aspergers. But he does have and did get diagnosed with

[Guest guest]

Hi sherry

Not all AS kids are really intelligent. Lots do run in the normal to high

intelligence, but just like other syndromes there is a large spectrum.

The school keeps telling me because aspies don't think abstract that as my son

gets in the higher grades it's going to get more difficult for him. He's in

grade 2 now and is doing great. I just keep hoping there wrong.

As for home schooling I'd be concerned about having to be the teacher and the

parent. If your having difficulty now trying to get the homework done I'd be

worried that it would be worse if your the teacher to.

Sharon

Sherri Winstead <SWHome247@...> wrote:

HI everyone! Myname is Sherri, and I have two boys (married for almost 13

years). just turned 9 and is in the process of us seeing a counselor

(had one visit, so I'll keep you posted). He also gave me an Asperger's scale to

fill out upon leaving,a nd to be honest I'm NOT surprised. I took him at 5 1/2

because I thought at age 4, he had Aspergers. But he does have and did get

diagnosed with ADHD, which makes it even harder. He is the SWEETEST child, but

when he " flips " , it's so outrageous and so sad. It hurts us all, him included.

So I'm praying hte counseling and testing can shed some light and give us better

coping skills (yes me included <grin>). Also, I have a 6 year old that has

autism. Because I researched so much on Aspergers for matthew, when Seth was all

fine but started showing " classic signs " at 18months - 2 years, I took him in

KNOWING he had autism. He was indeed diagnosed with moderate autism at age 2

1/2. He didn't speak, etc, but NOW he's in a regular First

Grade classroom, talks ALL the time and is the sweetest child, although quirky

and says WHATEVER is on his mind (I'm sure you ALL know what I mean)..and so

he's not considered to have mild or high functioning autism. Anyway--so I'm SURE

has Aspergers. Our BIGGEST thing since starting 3rd grade (public

school), is HOMEWORK and HANDWRITING. He loves science and " Real things "

but...is NOT great at math. See he use to make straight As and so I really

thought he was ASpergers. Then this year he's making Cs and getting a lot of Fs

on papers i nmath!...and so I thought it was TYPICAL of AS kids to be very VERY

intelligent and not struggle in academics. Am I wrong? Can there be varying

degrees and also b/c he has ADHD, I have no idea but I'm sure it plays a part.

Sot hat is where we are at. is not " diagnosed " but this Counselor and

his STAFF are all going to look into it I believe from what he was saying.

Mainly he observed Matthe playing etc. Its' wild how at HOME and with VERY

COMFORTABLE people, he's pretty typical (lets not talk school or homework) but

with new people, he's so monotone and totally changes..OR it's him but with us,

he's just COMFORTABLE to be whatever he wants to be. I struggle with him " hating

homework " and math and writing..which is what MOST o fhis homework is..and then

he will take 5 HOURS to do it or NOT at all, and we can't FORCE him too. It

saddens me.

I'm actually thinking of homeschooling. It makes me nervous being with him 24/7

BUT...I have a lot of homeschool friends in other states and I homeschooled him

at age 5 for part of Kindergarten (due to a late birthday) and he always says he

wants to be homeschooled adn no homework. I just know it could be a bonus b/c

although HARD ON ME, he may thrive. IF he doesn't GET math , we just STAY there

until he does or something. I'm reallynot sure. HE can be the sweetest thing and

he's SO SENSITIVE to others (seriously). He sees an ambulance and SEES the

injured person , he'll cry and be sad forever.

Anyway---what are your thoughts on the ACADEMIC part too? Thank you!!!

On location, natural light photographer

Sherri Winstead

Photographer Fayetteville, NC

swhome247@...

www.sherriwinstead.com

Add me to your address book... Want a signature like this?

[Guest guest]

The school keeps telling me because aspies don't think abstract that as my son

gets in the higher grades it's going to get more difficult for him. He's in

grade 2 now and is doing great. I just keep hoping there wrong.

--------

Really. Well that makes a lot of sense and how story-telling (writing) is hard

for him UNLESS it's something he's interested in or a " real thing " (i.e. Titanic

versus a made up story)...AND math is very hard for him THIS YEAR but never was

before...it's the word problems. Problems such as 152+____= 354 I mean you

subtract to find the answer, but he does NOT THINK like that. He starts COUNTING

UP...I mean really. So I find this so true with him!!

Yes Sharon I COMPLETELY understand your point. I guess I was thinking b/c if

math is hard, we could STAY THERE LONGER until he got it..AND there is no

homework. He is COMPLETELY fine but when he has MATH homework, it's all down

hill..or too much writing. So yes I see your point as well. Trust me, I'm

thinking about it all before I ever decide to homeschool (although I am not

against homeschoolers at all either).

Thanks Sharon!

[Guest guest]

Hi, Sherry,

I agree with Sharon. I homeschooled for two years and mostly enjoyed

it (towards the end it got old). My kids would do five hours

straight. If they tried to get away with not doing it, they simply

got the things they wanted delayed until they complied (one of my

favorite sayings is that the only thing I owed them was water, food,

one set of clothing, and shelter. Having the kids learn in five

hours and being completely done with school for the day made for a

very nice life for the kids. On the other hand, there was no time at

all for me. I had to teach, be the mom, be the housecleaner (which

is worse when they are home all day), and attempt to be the wife.

I use a similiar (sp?) thing with them now that they are in school.

They get electronic games and movies on the weekends after showing

good behavior and homework compliance during the week.

I would work on getting compliance on the homework, and building up

more local homeschooling support. You want to be able to work on

social skills so you want peer groups set up.

>

> Hi sherry

>

> Not all AS kids are really intelligent. Lots do run in the normal

to high intelligence, but just like other syndromes there is a large

spectrum.

> The school keeps telling me because aspies don't think abstract

that as my son gets in the higher grades it's going to get more

difficult for him. He's in grade 2 now and is doing great. I just

keep hoping there wrong.

> As for home schooling I'd be concerned about having to be the

teacher and the parent. If your having difficulty now trying to get

the homework done I'd be worried that it would be worse if your the

teacher to.

> Sharon

[Guest guest]

Thank you . Yes we are very involved in our church, and IF I end up

homeschooling, I'd put my boys into the Wednesday night program (just for

boys)..called RAs which is Bible study but also CHOIR and other things....to

keep up with the social skills. Thank you . So yours are in public school

now? Yes it would leave little time for me, as I'm a professional photographer

part-time as well on my own. www.sherriwinstead.com

So....thank you very much. But in the end, I have to do what is best for THEM. I

pray that the school with work with us now...and then we'll see what becomes of

our counseling sessions and if he'll be diagnosed Aspergers.

[Guest guest]

---

Hi, my son is average but is very smart in science, but he has always

has problems doing schoolwork. He can watch a Disc channel show and

remember everything about it, but has trouble if it is structured

schoolwork, a very oral learner. Also, unlike what I've always heard,

he is horrible at math, hates it. -Sara

> HI everyone! Myname is Sherri, and I have two boys (married for

almost 13 years). just turned 9 and is in the process of us

seeing a counselor (had one visit, so I'll keep you posted). He also

gave me an Asperger's scale to fill out upon leaving,a nd to be honest

I'm NOT surprised. I took him at 5 1/2 because I thought at age 4, he

had Aspergers. But he does have and did get diagnosed with ADHD, which

makes it even harder. He is the SWEETEST child, but when he " flips " ,

it's so outrageous and so sad. It hurts us all, him included. So I'm

praying hte counseling and testing can shed some light and give us

better coping skills (yes me included <grin>). Also, I have a 6 year

old that has autism. Because I researched so much on Aspergers for

matthew, when Seth was all fine but started showing " classic signs " at

18months - 2 years, I took him in KNOWING he had autism. He was indeed

diagnosed with moderate autism at age 2 1/2. He didn't speak, etc, but

NOW he's in a regular First Grade classroom, talks ALL the time and is

the sweetest child, although quirky and says WHATEVER is on his mind

(I'm sure you ALL know what I mean)..and so he's not considered to

have mild or high functioning autism. Anyway--so I'm SURE has

Aspergers. Our BIGGEST thing since starting 3rd grade (public school),

is HOMEWORK and HANDWRITING. He loves science and " Real things "

but...is NOT great at math. See he use to make straight As and so I

really thought he was ASpergers. Then this year he's making Cs and

getting a lot of Fs on papers i nmath!...and so I thought it was

TYPICAL of AS kids to be very VERY intelligent and not struggle in

academics. Am I wrong? Can there be varying degrees and also b/c he

has ADHD, I have no idea but I'm sure it plays a part.

>

> Sot hat is where we are at. is not " diagnosed " but this

Counselor and his STAFF are all going to look into it I believe from

what he was saying. Mainly he observed Matthe playing etc. Its' wild

how at HOME and with VERY COMFORTABLE people, he's pretty typical

(lets not talk school or homework) but with new people, he's so

monotone and totally changes..OR it's him but with us, he's just

COMFORTABLE to be whatever he wants to be. I struggle with him " hating

homework " and math and writing..which is what MOST o fhis homework

is..and then he will take 5 HOURS to do it or NOT at all, and we can't

FORCE him too. It saddens me.

>

> I'm actually thinking of homeschooling. It makes me nervous being

with him 24/7 BUT...I have a lot of homeschool friends in other states

and I homeschooled him at age 5 for part of Kindergarten (due to a

late birthday) and he always says he wants to be homeschooled adn no

homework. I just know it could be a bonus b/c although HARD ON ME, he

may thrive. IF he doesn't GET math , we just STAY there until he does

or something. I'm reallynot sure. HE can be the sweetest thing and

he's SO SENSITIVE to others (seriously). He sees an ambulance and SEES

the injured person , he'll cry and be sad forever.

>

> Anyway---what are your thoughts on the ACADEMIC part too? Thank you!!!

> On location, natural light photographer

>

> Sherri Winstead

> Photographer Fayetteville, NC

> swhome247@e...

> www.sherriwinstead.com

>

>

>

>

> Add me to your address book... Want a signature like this?

>

>

>

>

[Guest guest]

In a message dated 11/9/2005 10:53:38 AM Eastern Standard Time,

SWHome247@... writes:

what are your thoughts on the ACADEMIC part too?

Children with Asperger's sometimes show extreme scatter on Verbal and

Performance IQ testing. I suggest you look over the scores of each subtest.

The

Full Scale IQ score is not really as important as each individual subtest

score. If results show lots of scatter (high scores in some, low in others)

than it needs to be looked into because this could show where there are

weaknesses in the child's learning abilities. Pam

[Guest guest]

Children with Asperger's sometimes show extreme scatter on Verbal and

Performance IQ testing. I suggest you look over the scores of each subtest.

The

Full Scale IQ score is not really as important as each individual subtest

score. If results show lots of scatter (high scores in some, low in others)

than it needs to be looked into because this could show where there are

weaknesses in the child's learning abilities. Pam

-------------

Is this something I can request in writing for the school to do? Also, who do I

write too? Believe it or not, it's been 3 years since I've done iwth it my

youngest who has mild autism b/c he's just been having IEPs every year since. So

I've sort of FORGOTTEN!

[Guest guest]

Yes. I withdrew my first from Kindergarten for many reasons. I went

ahead and homeschooled my oldest and second with the same curriculum

(second is gifted). I was set up to do this year (Second Grade) when

I found out I was unexpectedly (and sadly - unwantedly) pregnant. I

had so many emotional problems from this, and physical problems from

the morning sickness, that I put them in.

There are good days and bad. Mostly I detest having homework. The

school, and school bus, already has them from 8:30am until 4pm.

That's enough.

You will have tons of support being Christian and homeschooling. As

a non-Christian many of those doors were closed to us.

In the end, you will do what is best for your family. I have to say

that my kids thrived with the social groups I set up for them.

Unlike school peers where the friendships are so thin and kids move

from person to person, the kinds of friends my kids had as

homeschooled children were deeper. They learned how to fight and

resolve issues amongst themselves - long term rejection was simply

not an option. Now, the boys have to navigate around children who

for no other reason than a popular child said so reject them. It's

crazy, and they were ill set up for this.

>

> Thank you . Yes we are very involved in our church, and IF I

end up homeschooling, I'd put my boys into the Wednesday night

program (just for boys)..called RAs which is Bible study but also

CHOIR and other things....to keep up with the social skills. Thank

you . So yours are in public school now? Yes it would leave

little time for me, as I'm a professional photographer part-time as

well on my own. www.sherriwinstead.com

>

> So....thank you very much. But in the end, I have to do what is

best for THEM. I pray that the school with work with us now...and

then we'll see what becomes of our counseling sessions and if he'll

be diagnosed Aspergers.

>

>

[Guest guest]

you can request testing to be done through the school department

(reevaluations agreed to every 3 years by the IEP Team) or you can pursue

private

testing. Pam

[Guest guest]

<<Thanks Pam. What do you all think of ABA programs? My husband read about

it and

said it was very intense and may be really harsh? I will read up on

treatments more

this weekend. Any input would be great.

-

>>

I didn't feel ABA was harsh at all. We didn't intend it to be or plan it

that way. People usually say negative things about it when they don't

understand it. It is very intense. But that is what you need. A few hours a

day of

pre-school doesn't help a lot for kids with autism. They need many hours of

specific instruction.

Roxanna

Autism Happens

[Guest guest]

Hi and welcome!

I tried to find information about Worster Drought Syndrome that was

from anywhere else in the world outside of the UK -but not much if

any. I wonder if there is just more awareness about this particular

syndrome in the UK, or if it's being diagnosed and treated as

something else elsewhere. I did see as you say that many with this syndrome

are misdiagnosed as global dyspraxic. I wonder then -what are the

differences in therapy and treatments? I ask because many children

with impairments of speech outside of apraxia respond to the therapy

appropriate for an apraxic child. Do you know if that's the case

for your little guy?

Can you give to the best of your ability an example of what he

sounds like in writing? Are his errors consistent or inconsistent?

Does he have any words that are clear? Does he have any dysarthria

which is pretty common for kids with CP? What type of speech or

other therapy does he currently receive? (oral motor, OT etc.)

We are all here to help and really do hope we can help you to help

bring your son a voice!

=====

[Guest guest]

Hi,

Most of the children so far diagnosed with WDS are in the UK, for the simple

reason that there is only really the one Professor with any real knowledge of

the condition, and he's based at Great Ormand street hospital in London. There

is a very similar condition (it may even be the same thing), but I'd have to

look up the name. Even in the UK it's very rare, my son was about the 106th

child diagnosed.

My son has received very little ST input, but I've been told it really wouldn't

have made much difference. It's more a case of trying to get him to use some

form of augmentive communication. We've tried signing, which wasn't successful,

and now he uses some symbols and will be using a specialist computer program for

literacy. With other therapies he receives the same input as a child with a mild

form of spastic CP.

As far as his speech goes, if you know him well, you could probably understand

70% of what he says. He tends to miss the starting and ending sounds, or

everything will start will " guh " . For example instead of he'll say

" Gah-guh " . He is also very monotonic, everything comes out at one sound level,

he can't whisper.

One last thing, I do know he's at the outer limit of the " window " for his speech

development, so we're unlikely to see any huge improvements now.

[ ] Re: New here

Hi and welcome!

I tried to find information about Worster Drought Syndrome that was

from anywhere else in the world outside of the UK -but not much if

any. I wonder if there is just more awareness about this particular

syndrome in the UK, or if it's being diagnosed and treated as

something else elsewhere. I did see as you say that many with this syndrome

are misdiagnosed as global dyspraxic. I wonder then -what are the

differences in therapy and treatments? I ask because many children

with impairments of speech outside of apraxia respond to the therapy

appropriate for an apraxic child. Do you know if that's the case

for your little guy?

Can you give to the best of your ability an example of what he

sounds like in writing? Are his errors consistent or inconsistent?

Does he have any words that are clear? Does he have any dysarthria

which is pretty common for kids with CP? What type of speech or

other therapy does he currently receive? (oral motor, OT etc.)

We are all here to help and really do hope we can help you to help

bring your son a voice!

=========

[Guest guest]

Interesting ,

If there is only one Professor with any real knowledge in the world

of Worster Drought Syndrome and he's based in the UK -the only country

with awareness of WDS -then there has to be children with this

condition in other countries too that are diagnosed with ____(?)

instead. It's not logical this condition only exists in the UK -you

know? That's like the " If a tree falls in the woods and nobody is

around " question. Just because only one person really understands

it to diagnose it -doesn't mean it isn't elsewhere. OK -I'm

repeating myself...

The speech patterns you mention -I can see how that can be viewed as

apraxic -sounds just like the way an apraxic child would speak. Or

at 7 -an apraxic child without appropriate apraxia therapy. Missing

starting and ending sounds, " gah-guh " for -yup that's apraxic

all right. Many apraxic children sound monotone or even deaf

without appropriate therapy too.

Other than augmentative communication which is wonderful, has

anyone 'tried' motor planning and/or strengthening therapies to try

to improve your son's verbal communication skills? If he had

trouble with signing -was that due to motor planning or strength

issues in his hands/fingers? How's receptive/cognitive ability?

OK -this is why I talk about the misdiagnosed WDS kids above.

We have a pretty high success rate overall in this group

-that's for all communication delays and disorders.

Hypothetically there may be at least a few children diagnosed with

apraxia or... in this group who actually have WDS that don't live in the

UK. But -have made amazing verbal gains with therapy for an apraxic

child that may have been viewed as inappropriate for one with WDS.

Perhaps...just perhaps when you read the following -this is one case

where misdiagnosis may be a good thing?

You say: " My son has received very little ST input, but I've been

told it really wouldn't

have made much difference. "

Says who? Where's the research with the 100 kids to back that up?

There's far more apraxic

children than 106 -but when Tanner was first diagnosed just 6 years

ago there was the same dismal prognosis. I asked " OK, so he has

apraxia whatever that is. He's still going to talk right? "

Expecting the SLP to laugh and say " Of course " but instead I

got " Well......it depends. " And I was like " What do you mean it

depends! " As it ends up -the prognosis today for apraxic children

is very bright thanks to knowledge we shared as a group.

Appropriate and intensive therapy. The right formula of EFAs.

Starting kindergarten at 6 years old vs. 5. Simple stuff that time

and time again worked.

Tanner's story

http://www.cherab.org/information/familiesrelate/letter.html

Please don't believe that he's reached his outer limit " window "

It's never too late.

Here's a story about who is now about 20 -misdiagnosed a few

times in her life. She's now doing wonderful I hear -and has

relocated to Georgia where she's working with my son's Early

Intervention therapist Zimet CCC-SLP (she works with any

age) I bet at some point that 's mom and dad also thought

it " unlikely that they would see any huge improvements " -but they

did. I mean is it possible that has WDS -sure. But point

is she is progressing -and at a far later age then your child's age

of 7. ('s today diagnosed as global apraxia)

http://www.cherab.org/news/.html

Have you read The Late Talker book? Please let me know if you can

get it at your library if you have not.

=====

[Guest guest]

The " gah-guh " for may also be a result of being unable to maintain a more

closed or approximated jaw position, so he ends up with it open very wide during

speech, which then makes most sounds come out as " g. " (Maybe some " k's " if he

could control voicing - but since you said he doesn't whisper, I wonder if the

" voiceless " sounds are produced as " voiced " - too complex to synchronize

turning voice off, then on again). There may be some dysarthria - making the

tongue movements more weak and/or slow. I would recommend you to see if there

is a PROMPT certified (or at least trained) speech therapist near you. S/he

could determine if these speculations are even close - and develop and implement

a progressive program to help your son improve his speech intelligibility, with

even strangers. It sounds like it is worth pursuing, especially since he hasn't

really had any formal speech therapy to date.

By the way, it is good to continue pursuing augmentative communication while he

is receiving speech therapy. He needs something in the interim.

Best wishes,

Jill

[ ] Re: New here

Hi and welcome!

I tried to find information about Worster Drought Syndrome that was

from anywhere else in the world outside of the UK -but not much if

any. I wonder if there is just more awareness about this particular

syndrome in the UK, or if it's being diagnosed and treated as

something else elsewhere. I did see as you say that many with this syndrome

are misdiagnosed as global dyspraxic. I wonder then -what are the

differences in therapy and treatments? I ask because many children

with impairments of speech outside of apraxia respond to the therapy

appropriate for an apraxic child. Do you know if that's the case

for your little guy?

Can you give to the best of your ability an example of what he

sounds like in writing? Are his errors consistent or inconsistent?

Does he have any words that are clear? Does he have any dysarthria

which is pretty common for kids with CP? What type of speech or

other therapy does he currently receive? (oral motor, OT etc.)

We are all here to help and really do hope we can help you to help

bring your son a voice!

=========

[Guest guest]

Hi ...I also have a 9 year old son dx AS about 4

years ago. ..I'm new to the group as well. Annie

--- jewels_f_27 <jewelmrr74@...> wrote:

> Hi there,

> I found this site while looking through and thought

> that i could chat

> and talk about things that have been and are still

> happening with my

> 9 year old son and our family.

>

> My son was diagnosed with a heart murmur aged 11

> months after having

> chest infections nearly every month and being on

> antibiotics every

> month and being told i was a neurotic mother (i told

> him he kept

> going blue and his lips were going purple and he

> wouldnt feed) when he

> eventually went into hospital for tests it showed he

> had a hole in

> the pumping charmber (left ventrical) and also his

> arteries were

> narrow.

>

> He had open heart surgery when he was 4 yrs old,

> where the hole was

> closed and the main artery had a balloon inserted to

> widen it.

> The whole ordeal was terrifying mostly because of

> the not knowing

> what was happening (we ended up changing hospitals)

>

> We were told he would probably need more surgery in

> 5 - 6 yrs time as

> his other arteries would need seen to and this time

> is drawing nearer

> and im getting worried for the dreaded letter to

> come.

>

> Apart from his heart problem i felt there was

> something different

> with his behaviour and the way he was with other

> kids and how he

> played etc and after a long battle with his school

> and teachers and

> then having to change his school (at his old school

> they said he was

> uncontrolable and unteachable and told his 2 weeks

> before end of tern

> he was lucky to still be in school) he was diagnosed

> on 30th

> september 05 with Asperger Syndrome.

>

> Now that he has been diagnosed things have been

> tough with seeing

> occupational therapist, getting things sorted out

> with learning

> support, teaching assistants, educational

> phsycologist and just

> trying to get my head round the last 7 weeks but he

> has also had new

> confidence in school with all the help even tho he

> still has

> his " moments " (his name was on the bad board again

> today).

>

> Anyway, apart from that i have 5 other children aged

> 18, 16, 14, 12 &

> 7. The eldest 3 are my stepkids and have been with

> them over 12 yrs

> now. We all live toger (yes all 8 of us) and i also

> work 4 days a

> week so im pretty busy.

>

> Times are hard just now but i know we'll get through

> it and just take

> 1 day at a time.

> Hope to maybe be able to chat with some of you about

> things we're all

> going through or have been through.

>

> Take care

> x

>

>

>

>

>

__________________________________

FareChase: Search multiple travel sites in one click.

http://farechase.

[Guest guest]

Dear ,

How are " YOU " and your Son doing now? Are you comfortable with the new

hospital & medical support for your sons heart murmur? I hope now that you have

the DX for your son. you are a little relieved, and getting the help you need

to help your son go into the right direction. How old is your son now? Is the

school helping you now that he has the DX? " Keep the strength " , it will get

better. Hope you all have a healthy holiday. Best wishes to you all.

jewels_f_27 <jewelmrr74@...> wrote:

Hi there,

I found this site while looking through and thought that i could chat

and talk about things that have been and are still happening with my

9 year old son and our family.

My son was diagnosed with a heart murmur aged 11 months after having

chest infections nearly every month and being on antibiotics every

month and being told i was a neurotic mother (i told him he kept

going blue and his lips were going purple and he wouldnt feed) when he

eventually went into hospital for tests it showed he had a hole in

the pumping charmber (left ventrical) and also his arteries were

narrow.

He had open heart surgery when he was 4 yrs old, where the hole was

closed and the main artery had a balloon inserted to widen it.

The whole ordeal was terrifying mostly because of the not knowing

what was happening (we ended up changing hospitals)

We were told he would probably need more surgery in 5 - 6 yrs time as

his other arteries would need seen to and this time is drawing nearer

and im getting worried for the dreaded letter to come.

Apart from his heart problem i felt there was something different

with his behaviour and the way he was with other kids and how he

played etc and after a long battle with his school and teachers and

then having to change his school (at his old school they said he was

uncontrolable and unteachable and told his 2 weeks before end of tern

he was lucky to still be in school) he was diagnosed on 30th

september 05 with Asperger Syndrome.

Now that he has been diagnosed things have been tough with seeing

occupational therapist, getting things sorted out with learning

support, teaching assistants, educational phsycologist and just

trying to get my head round the last 7 weeks but he has also had new

confidence in school with all the help even tho he still has

his " moments " (his name was on the bad board again today).

Anyway, apart from that i have 5 other children aged 18, 16, 14, 12 &

7. The eldest 3 are my stepkids and have been with them over 12 yrs

now. We all live toger (yes all 8 of us) and i also work 4 days a

week so im pretty busy.

Times are hard just now but i know we'll get through it and just take

1 day at a time.

Hope to maybe be able to chat with some of you about things we're all

going through or have been through.

Take care

x

[Guest guest]

Hi Annie,

Thank you for replying back to me and i hope that we can have a chat

sometime soon.

Hope you and your son are doing well.

Take care

x

>

> > Hi there,

> > I found this site while looking through and thought

> > that i could chat

> > and talk about things that have been and are still

> > happening with my

> > 9 year old son and our family.

> >

> > My son was diagnosed with a heart murmur aged 11

> > months after having

> > chest infections nearly every month and being on

> > antibiotics every

> > month and being told i was a neurotic mother (i told

> > him he kept

> > going blue and his lips were going purple and he

> > wouldnt feed) when he

> > eventually went into hospital for tests it showed he

> > had a hole in

> > the pumping charmber (left ventrical) and also his

> > arteries were

> > narrow.

> >

> > He had open heart surgery when he was 4 yrs old,

> > where the hole was

> > closed and the main artery had a balloon inserted to

> > widen it.

> > The whole ordeal was terrifying mostly because of

> > the not knowing

> > what was happening (we ended up changing hospitals)

> >

> > We were told he would probably need more surgery in

> > 5 - 6 yrs time as

> > his other arteries would need seen to and this time

> > is drawing nearer

> > and im getting worried for the dreaded letter to

> > come.

> >

> > Apart from his heart problem i felt there was

> > something different

> > with his behaviour and the way he was with other

> > kids and how he

> > played etc and after a long battle with his school

> > and teachers and

> > then having to change his school (at his old school

> > they said he was

> > uncontrolable and unteachable and told his 2 weeks

> > before end of tern

> > he was lucky to still be in school) he was diagnosed

> > on 30th

> > september 05 with Asperger Syndrome.

> >

> > Now that he has been diagnosed things have been

> > tough with seeing

> > occupational therapist, getting things sorted out

> > with learning

> > support, teaching assistants, educational

> > phsycologist and just

> > trying to get my head round the last 7 weeks but he

> > has also had new

> > confidence in school with all the help even tho he

> > still has

> > his " moments " (his name was on the bad board again

> > today).

> >

> > Anyway, apart from that i have 5 other children aged

> > 18, 16, 14, 12 &

> > 7. The eldest 3 are my stepkids and have been with

> > them over 12 yrs

> > now. We all live toger (yes all 8 of us) and i also

> > work 4 days a

> > week so im pretty busy.

> >

> > Times are hard just now but i know we'll get through

> > it and just take

> > 1 day at a time.

> > Hope to maybe be able to chat with some of you about

> > things we're all

> > going through or have been through.

> >

> > Take care

> > x

> >

> >

> >

> >

> >

>

>

>

>

> __________________________________

> FareChase: Search multiple travel sites in one click.

> http://farechase.

>

[Guest guest]

,

Thanks for sharing. This group has helped me allot in sorting things out.

It is definitely a good place to be. Everyone is very nice and supportive.

It is great to have a place to go where people are going through the same

" stuff " Look forward to talking to ya.

Ann

Re: ( ) new here

Hi Annie,

Thank you for replying back to me and i hope that we can have a chat

sometime soon.

Hope you and your son are doing well.

Take care

x

>

> > Hi there,

> > I found this site while looking through and thought

> > that i could chat

> > and talk about things that have been and are still

> > happening with my

> > 9 year old son and our family.

> >

> > My son was diagnosed with a heart murmur aged 11

> > months after having

> > chest infections nearly every month and being on

> > antibiotics every

> > month and being told i was a neurotic mother (i told

> > him he kept

> > going blue and his lips were going purple and he

> > wouldnt feed) when he

> > eventually went into hospital for tests it showed he

> > had a hole in

> > the pumping charmber (left ventrical) and also his

> > arteries were

> > narrow.

> >

> > He had open heart surgery when he was 4 yrs old,

> > where the hole was

> > closed and the main artery had a balloon inserted to

> > widen it.

> > The whole ordeal was terrifying mostly because of

> > the not knowing

> > what was happening (we ended up changing hospitals)

> >

> > We were told he would probably need more surgery in

> > 5 - 6 yrs time as

> > his other arteries would need seen to and this time

> > is drawing nearer

> > and im getting worried for the dreaded letter to

> > come.

> >

> > Apart from his heart problem i felt there was

> > something different

> > with his behaviour and the way he was with other

> > kids and how he

> > played etc and after a long battle with his school

> > and teachers and

> > then having to change his school (at his old school

> > they said he was

> > uncontrolable and unteachable and told his 2 weeks

> > before end of tern

> > he was lucky to still be in school) he was diagnosed

> > on 30th

> > september 05 with Asperger Syndrome.

> >

> > Now that he has been diagnosed things have been

> > tough with seeing

> > occupational therapist, getting things sorted out

> > with learning

> > support, teaching assistants, educational

> > phsycologist and just

> > trying to get my head round the last 7 weeks but he

> > has also had new

> > confidence in school with all the help even tho he

> > still has

> > his " moments " (his name was on the bad board again

> > today).

> >

> > Anyway, apart from that i have 5 other children aged

> > 18, 16, 14, 12 &

> > 7. The eldest 3 are my stepkids and have been with

> > them over 12 yrs

> > now. We all live toger (yes all 8 of us) and i also

> > work 4 days a

> > week so im pretty busy.

> >

> > Times are hard just now but i know we'll get through

> > it and just take

> > 1 day at a time.

> > Hope to maybe be able to chat with some of you about

> > things we're all

> > going through or have been through.

> >

> > Take care

> > x

> >

> >

> >

> >

> >

>

>

>

>

> __________________________________

> FareChase: Search multiple travel sites in one click.

> http://farechase.

>

[Guest guest]

Hi Rose,

Than you for replying to me and asking about me and my son.

Im more happy now with the help my son is getting that before as it

has taken a long time to get to where we are.

Apart from all the problems he has at his old school i had been to

out GP about him in april and his GP just told him he needed to " grow

up " and stop being a nusance.

A few weeks laster i went to his school and asked him to be refered

to the school doctor.

We saw her in June and she did some tests, jumping, hopping, reading,

writing, chatting to him etc. and then sent me and his school a

conners report and a gilbergs score sheet.

I changed his school at the end of term and he began his new school

on 26th Aug.

We didnt hear anything till 28th september when we got a letter from

the communications clinic for the 30th sept.

We arrived there and he saw 2 different doctors, 3 hours later they

told me he has AS, handed me some leaflets and told me they will

write to me and his school.

After 2 weeks we had a meeting with his school and were told he will

be having support from his teachers, a learning support teacher, an

Education Phycologist, an OT and a motor skills excercise programme

every morning before school.

We then went to see the OT last Thursday and was there for nearly 3

hours again and had him doing all sorts of activities. She told us

that he has significant difficulties with co ordination and

controlled ballance and poor awareness of force etc.

She also sent us out an application form for child dissabilities and

dissability living allowance which im trying to do with great

difficulty.

Sorry for going on but this is the 1st time ive actually " talked " to

anyone about this as i feel quite alone.

Liam is now 9 years old and is in P.5 and since changing schools and

getting a little more help is doing quite well and is more happy that

when at his last school (they were ready to expel him and said he

was " unteachable " .

Thank you so much for taking an interest and i hope i havn't went on

too much LOL.

As for asking how I am.... well im not sure i can answer that as im

going on auto pilot just now and can barely recall what day of the

week im on LOL.

A week before his DX i got offered my 1st job (work at Tumble Tots

with children) and work on a sat at a supermarket for some extra xmas

cash.

I enjoy workinging at tumble tots but ofter feel my head's not quite

with it but i do try and get on with things.

My way of dealing with things is by taking 1 day at a time.

How are you? Hope you and ur family are all doing well also.

Thanx again

Take care

luv

x

> Hi there,

> I found this site while looking through and thought that i could

chat

> and talk about things that have been and are still happening with my

> 9 year old son and our family.

>

> My son was diagnosed with a heart murmur aged 11 months after

having

> chest infections nearly every month and being on antibiotics every

> month and being told i was a neurotic mother (i told him he kept

> going blue and his lips were going purple and he wouldnt feed) when

he

> eventually went into hospital for tests it showed he had a hole in

> the pumping charmber (left ventrical) and also his arteries were

> narrow.

>

> He had open heart surgery when he was 4 yrs old, where the hole was

> closed and the main artery had a balloon inserted to widen it.

> The whole ordeal was terrifying mostly because of the not knowing

> what was happening (we ended up changing hospitals)

>

> We were told he would probably need more surgery in 5 - 6 yrs time

as

> his other arteries would need seen to and this time is drawing

nearer

> and im getting worried for the dreaded letter to come.

>

> Apart from his heart problem i felt there was something different

> with his behaviour and the way he was with other kids and how he

> played etc and after a long battle with his school and teachers and

> then having to change his school (at his old school they said he

was

> uncontrolable and unteachable and told his 2 weeks before end of

tern

> he was lucky to still be in school) he was diagnosed on 30th

> september 05 with Asperger Syndrome.

>

> Now that he has been diagnosed things have been tough with seeing

> occupational therapist, getting things sorted out with learning

> support, teaching assistants, educational phsycologist and just

> trying to get my head round the last 7 weeks but he has also had

new

> confidence in school with all the help even tho he still has

> his " moments " (his name was on the bad board again today).

>

> Anyway, apart from that i have 5 other children aged 18, 16, 14, 12

&

> 7. The eldest 3 are my stepkids and have been with them over 12 yrs

> now. We all live toger (yes all 8 of us) and i also work 4 days a

> week so im pretty busy.

>

> Times are hard just now but i know we'll get through it and just

take

> 1 day at a time.

> Hope to maybe be able to chat with some of you about things we're

all

> going through or have been through.

>

> Take care

> x

>

>

>

>

>

>

>