Introduction

March 22, 2005

Welcome to the Group Siobhan. I just found out recently that our now two

year old son has Autism. Everyone in this group has been great, I just

joined recently as well. I Hope to get to know you and your family

better and like everyone else in this group.

Thanks

- TM

DH ; Married 5 years and Still Going Strong

Proud Parents Of:

DS; Jonathyn b/ 03-13-03 @ 37 wks Our Miracle

www.babiesonline.com/babies/j/jonathyn

DD; Kaitlyn b/s 03-21-02 @ 38 wks (Hypercoiled Cord)

Angel; M/C 01-30-01 @ 9 wks (D & C)

DD; Shirley Marie b/s 06-07-00 @ 24 wks (Hypercoiled Cord)

Mommy & Daddy, LOVES & MISSES their Girls! ^I^ ^I^

" I know God won't give me anything I can't handle

I just wish he didn't trust me so much "

-Mother

" A moment in my arms, forever in my heart "

" Always Loved and Never Forgotten "

When You Lose A Parent You Lose You Past

When You Lose A Spouse You Lose Your Present

When You Lose A Child You Lose Your Future

introduction

Hi everyone - I have been reading this list for some time now, but

unable to ever send anything because I messed up my original email

address. I have 2 children - ce aged 10 with an autism diagnosis

and Saoirse aged 12 (NT and gifted). ce was diagnosed as

moderate/severe when he was 3.5 years and we have done a lot (as he has)

in the intervening years - with much success. I look forward to being

able to contribute and learning more from this group and thank you all

for all the information you share so readily.

Best wishes,

Siobhan Bryar

May 11, 2005

Hi

Welcome to the group! is a beauty! Is her hair red or

blond? I can see the width of a brachy headshape in the first

photo. You seem to already be educated and ready to go forward. CT

should be able to give you evaluation while you are waiting on your

Drs appt. Keep us posted!

Natasha

> Hello All,

>

> I am mom to seven month old and a couple of other

kids. My

> pediatrician thinks has a flat head, but he does not

recommend a

> helmet because he believes I would be " spending a lot of money to

do

> something that would happen anyway. " I wished that I had known

that he

> didn't believe in the helmets when my five year old daughter was a

baby

> because her head is still flat. I believed him that it would

round out. My

> middle child, a boy, has a naturally round head.

>

> I called Cranial Technologies to see about an evaluation (luckily,

I live

> just a few miles from the Dallas office), and they said to go to a

> pediatrician who does believe in the helmets or go to a cranial-

facial

> surgeon. (How did you all get free evaluations from CT?) I have

an

> appointment with the C-F surgeon on May 26, when Kris will be just

a few

> days shy of 8-months. We got a late start because it took me a

while to

> admit that her head was flat and then a few more weeks to convince

myself to

> go against my pediatrician's recommendations.

>

> I posted a few pictures (folder called ) so you all can

tell me

> whether you think she has plagio (brachy). When she looks

straight forward,

> I see a little roundness, but her head looks very flat when she

looks down.

> I think the roundness I see when she is looking straight or up is

from the

> extra head height caused by the plagio, but maybe her head really

is okay.

> Looking at the assessment charts on the CT website, I think she is

a 1 or 2

> from the top, 1 from the side, and 2 from the front.

>

> My nephew was in a DOC Band from the same clinic for six months

due to

> plagio caused by tort. He had no problems and had wonderful

correction, so

> I really have no fears about the band. I really just want to get

the ball

> rolling if she does need to wear a band.

>

> Thank you for any comments you have!

>

> Jean

May 11, 2005

Hello and Welcome,

First let me just say how adorable is. We have so many moms

here that have heard the old " it will round out " line only to find

out differently. I am glad to know that you are familiar with the Doc

Band and that you are lucky enough to be close to a CT clinic. I

looked at the pictures and can see the flatness you are worried

about. She looks to be brachycephaly. I also thought I saw some

facial asymmetry on the right side and a small amount of bossing in

the forehead. I think you are doing the right thing by contacting CT,

you want to get treatment started as soon as possible, the younger

the better. You can go to another ped.(CT usually has a list of

referring peds in the area) or a craniofacial doc to get a

prescription. CT in Dallas should do the evaluation for free once you

have your prescription. Is the ped your nephew used close enough for

you to go there for a script? We have a few members that just love

Dallas so I will add that to your post, so you can be contacted by

them and maybe get the name of a good ped. Let us know what we can do

to help you along the way. Keep us posted about your evaluation.

is in good hands,you are doing the right thing, sometimes the

doctors just aren't right, but you know your baby trust yourself.

CAROLG

> Hello All,

>

> I am mom to seven month old and a couple of other

kids. My

> pediatrician thinks has a flat head, but he does not

recommend a

> helmet because he believes I would be " spending a lot of money to do

> something that would happen anyway. " I wished that I had known

that he

> didn't believe in the helmets when my five year old daughter was a

baby

> because her head is still flat. I believed him that it would round

out. My

> middle child, a boy, has a naturally round head.

>

> I called Cranial Technologies to see about an evaluation (luckily,

I live

> just a few miles from the Dallas office), and they said to go to a

> pediatrician who does believe in the helmets or go to a cranial-

facial

> surgeon. (How did you all get free evaluations from CT?) I have an

> appointment with the C-F surgeon on May 26, when Kris will be just

a few

> days shy of 8-months. We got a late start because it took me a

while to

> admit that her head was flat and then a few more weeks to convince

myself to

> go against my pediatrician's recommendations.

>

> I posted a few pictures (folder called ) so you all can tell

me

> whether you think she has plagio (brachy). When she looks straight

forward,

> I see a little roundness, but her head looks very flat when she

looks down.

> I think the roundness I see when she is looking straight or up is

from the

> extra head height caused by the plagio, but maybe her head really

is okay.

> Looking at the assessment charts on the CT website, I think she is

a 1 or 2

> from the top, 1 from the side, and 2 from the front.

>

> My nephew was in a DOC Band from the same clinic for six months due

to

> plagio caused by tort. He had no problems and had wonderful

correction, so

> I really have no fears about the band. I really just want to get

the ball

> rolling if she does need to wear a band.

>

> Thank you for any comments you have!

>

> Jean

May 11, 2005

Thank

you! We are hoping that her hair is red; her brother’s is a beautiful strawberry

blond and her sister’s is dark blond. She doesn’t have enough to

tell right now, but I think it is the same color as my son’s.

Jean

Re: Introduction

Hi

Welcome to

the group! is a beauty! Is her hair red or

blond?

May 11, 2005

Thank

you for the welcome, Carol!

My

nephew’s pediatrician is a couple of hours away. He happens to live

behind my parents, so I had an “over the fence” consultation with

him the last time I went to visit. He thought needed intervention.

I don’t think he actually writes the prescriptions because he referred my

nephew to the cranial facial surgeon. I do have an appointment with the

cranial facial surgeon –probably the same one my nephew went to--so I

guess I’ll just wait for that. It’s only two weeks away, but

that seems so long!

I

forgot to mention in my previous post that I believe her head is flat due to

extensive hours in the car seat. We spend at least two hours a day in the

car taking my other kids to and from school. She sleeps on her tummy, never

liked the swing, and is never on the back of her head except in the car seat.

She did sleep on her back until she could roll over, so I guess that was almost

four months. I expected to see some rounding when she started sleeping on

her tummy, but I don’t see a difference.

I’m

not sure whether she has asymmetry or not. My mom says she does, but I

can’t really tell. I do think the corner on one side of her head is

a little sharper than the one on the other side.

Thank

you for all your help and for the warm welcome!

Jean

May 11, 2005

Hi

I just want to second everything you've already been told. Welcome to

the group. Keep us posted on .

> Hello All,

>

> I am mom to seven month old and a couple of other

kids. My

> pediatrician thinks has a flat head, but he does not

recommend a

> helmet because he believes I would be " spending a lot of money to do

> something that would happen anyway. " I wished that I had known

that he

> didn't believe in the helmets when my five year old daughter was a

baby

> because her head is still flat. I believed him that it would round

out. My

> middle child, a boy, has a naturally round head.

>

> I called Cranial Technologies to see about an evaluation (luckily,

I live

> just a few miles from the Dallas office), and they said to go to a

> pediatrician who does believe in the helmets or go to a cranial-

facial

> surgeon. (How did you all get free evaluations from CT?) I have an

> appointment with the C-F surgeon on May 26, when Kris will be just

a few

> days shy of 8-months. We got a late start because it took me a

while to

> admit that her head was flat and then a few more weeks to convince

myself to

> go against my pediatrician's recommendations.

>

> I posted a few pictures (folder called ) so you all can tell

me

> whether you think she has plagio (brachy). When she looks straight

forward,

> I see a little roundness, but her head looks very flat when she

looks down.

> I think the roundness I see when she is looking straight or up is

from the

> extra head height caused by the plagio, but maybe her head really

is okay.

> Looking at the assessment charts on the CT website, I think she is

a 1 or 2

> from the top, 1 from the side, and 2 from the front.

>

> My nephew was in a DOC Band from the same clinic for six months due

to

> plagio caused by tort. He had no problems and had wonderful

correction, so

> I really have no fears about the band. I really just want to get

the ball

> rolling if she does need to wear a band.

>

> Thank you for any comments you have!

>

> Jean

May 12, 2005

Welcome to the grp. is an absolute beauty! You are very

blessed. I agree with you, from the top, she has a classic brachy

headshape. From the side she does have some roundness. You are very

smart to get a 2nd opinion and possibly free evaluation from CT. You

are SO lucky to be near a CT clinic. They will give you the best

recommendation. I figured we had nothing to lose by trying helmet

therapy and everything to gain. The time to do it is now. As you saw

w/your oldest, it may not grow as round as you might like it. Good

luck and please keep us posted! We are here for you every step of the

way. Thanks for posting pics! We love cute babies.

Sue

Colin F., 19 mos.

STARband grad

brachy

Buffalo, NY

> Hello All,

>

> I am mom to seven month old and a couple of other

kids. My

> pediatrician thinks has a flat head, but he does not

recommend a

> helmet because he believes I would be " spending a lot of money to do

> something that would happen anyway. " I wished that I had known

that he

> didn't believe in the helmets when my five year old daughter was a

baby

> because her head is still flat. I believed him that it would round

out. My

> middle child, a boy, has a naturally round head.

>

> I called Cranial Technologies to see about an evaluation (luckily,

I live

> just a few miles from the Dallas office), and they said to go to a

> pediatrician who does believe in the helmets or go to a cranial-

facial

> surgeon. (How did you all get free evaluations from CT?) I have an

> appointment with the C-F surgeon on May 26, when Kris will be just

a few

> days shy of 8-months. We got a late start because it took me a

while to

> admit that her head was flat and then a few more weeks to convince

myself to

> go against my pediatrician's recommendations.

>

> I posted a few pictures (folder called ) so you all can tell

me

> whether you think she has plagio (brachy). When she looks straight

forward,

> I see a little roundness, but her head looks very flat when she

looks down.

> I think the roundness I see when she is looking straight or up is

from the

> extra head height caused by the plagio, but maybe her head really

is okay.

> Looking at the assessment charts on the CT website, I think she is

a 1 or 2

> from the top, 1 from the side, and 2 from the front.

>

> My nephew was in a DOC Band from the same clinic for six months due

to

> plagio caused by tort. He had no problems and had wonderful

correction, so

> I really have no fears about the band. I really just want to get

the ball

> rolling if she does need to wear a band.

>

> Thank you for any comments you have!

>

> Jean

May 12, 2005

Hi Jean! is adorable! I just wanted to say good for you for

being persistant about your daughter with the professionals. We were

also told it would go away. My daughter didn't finally get into a

helmet til she was 11 months old. It's been along process, but she's

had good progress. Not perfect, but good enough! Good luck to you

and let us know how it goes!

Marissa

(Kaylee, 19 months old, tort and plagio, 9 months in Hanger helmet)

> Hello All,

>

> I am mom to seven month old and a couple of other

kids. My

> pediatrician thinks has a flat head, but he does not

recommend a

> helmet because he believes I would be " spending a lot of money to

do

> something that would happen anyway. " I wished that I had known

that he

> didn't believe in the helmets when my five year old daughter was a

baby

> because her head is still flat. I believed him that it would

round out. My

> middle child, a boy, has a naturally round head.

>

> I called Cranial Technologies to see about an evaluation (luckily,

I live

> just a few miles from the Dallas office), and they said to go to a

> pediatrician who does believe in the helmets or go to a cranial-

facial

> surgeon. (How did you all get free evaluations from CT?) I have

an

> appointment with the C-F surgeon on May 26, when Kris will be just

a few

> days shy of 8-months. We got a late start because it took me a

while to

> admit that her head was flat and then a few more weeks to convince

myself to

> go against my pediatrician's recommendations.

>

> I posted a few pictures (folder called ) so you all can

tell me

> whether you think she has plagio (brachy). When she looks

straight forward,

> I see a little roundness, but her head looks very flat when she

looks down.

> I think the roundness I see when she is looking straight or up is

from the

> extra head height caused by the plagio, but maybe her head really

is okay.

> Looking at the assessment charts on the CT website, I think she is

a 1 or 2

> from the top, 1 from the side, and 2 from the front.

>

> My nephew was in a DOC Band from the same clinic for six months

due to

> plagio caused by tort. He had no problems and had wonderful

correction, so

> I really have no fears about the band. I really just want to get

the ball

> rolling if she does need to wear a band.

>

> Thank you for any comments you have!

>

> Jean

May 12, 2005

Hi Jean! is adorable! I just wanted to say good for you for

being persistant about your daughter with the professionals. We were

also told it would go away. My daughter didn't finally get into a

helmet til she was 11 months old. It's been along process, but she's

had good progress. Not perfect, but good enough! Good luck to you

and let us know how it goes!

Marissa

(Kaylee, 19 months old, tort and plagio, 9 months in Hanger helmet)

> Hello All,

>

> I am mom to seven month old and a couple of other

kids. My

> pediatrician thinks has a flat head, but he does not

recommend a

> helmet because he believes I would be " spending a lot of money to

do

> something that would happen anyway. " I wished that I had known

that he

> didn't believe in the helmets when my five year old daughter was a

baby

> because her head is still flat. I believed him that it would

round out. My

> middle child, a boy, has a naturally round head.

>

> I called Cranial Technologies to see about an evaluation (luckily,

I live

> just a few miles from the Dallas office), and they said to go to a

> pediatrician who does believe in the helmets or go to a cranial-

facial

> surgeon. (How did you all get free evaluations from CT?) I have

an

> appointment with the C-F surgeon on May 26, when Kris will be just

a few

> days shy of 8-months. We got a late start because it took me a

while to

> admit that her head was flat and then a few more weeks to convince

myself to

> go against my pediatrician's recommendations.

>

> I posted a few pictures (folder called ) so you all can

tell me

> whether you think she has plagio (brachy). When she looks

straight forward,

> I see a little roundness, but her head looks very flat when she

looks down.

> I think the roundness I see when she is looking straight or up is

from the

> extra head height caused by the plagio, but maybe her head really

is okay.

> Looking at the assessment charts on the CT website, I think she is

a 1 or 2

> from the top, 1 from the side, and 2 from the front.

>

> My nephew was in a DOC Band from the same clinic for six months

due to

> plagio caused by tort. He had no problems and had wonderful

correction, so

> I really have no fears about the band. I really just want to get

the ball

> rolling if she does need to wear a band.

>

> Thank you for any comments you have!

>

> Jean

May 12, 2005

Hi

Welcom to the group!!! You will get a lot of support and questions

answered here by these wonderful women! My Sophie just got fitted

for her STARband yesterday! She is 8 months and 10 days old. We

knew back when she was 5 months that we would probably be at this

point but my husband was not ready. So here we are! You still have

time with and that's wonderful to have a family member

already go through the process so you have that support! Good luck

with your consultation! By the way, my pediatrician doesn't believe

in helmets either. We insisted and she is banded!!! Again, good

luck!

Sophie 8 months STARband 5/11

Plagio/Tort

Michigan

> Hello All,

>

> I am mom to seven month old and a couple of other

kids. My

> pediatrician thinks has a flat head, but he does not

recommend a

> helmet because he believes I would be " spending a lot of money to do

> something that would happen anyway. " I wished that I had known

that he

> didn't believe in the helmets when my five year old daughter was a

baby

> because her head is still flat. I believed him that it would round

out. My

> middle child, a boy, has a naturally round head.

>

> I called Cranial Technologies to see about an evaluation (luckily,

I live

> just a few miles from the Dallas office), and they said to go to a

> pediatrician who does believe in the helmets or go to a cranial-

facial

> surgeon. (How did you all get free evaluations from CT?) I have an

> appointment with the C-F surgeon on May 26, when Kris will be just

a few

> days shy of 8-months. We got a late start because it took me a

while to

> admit that her head was flat and then a few more weeks to convince

myself to

> go against my pediatrician's recommendations.

>

> I posted a few pictures (folder called ) so you all can tell

me

> whether you think she has plagio (brachy). When she looks straight

forward,

> I see a little roundness, but her head looks very flat when she

looks down.

> I think the roundness I see when she is looking straight or up is

from the

> extra head height caused by the plagio, but maybe her head really

is okay.

> Looking at the assessment charts on the CT website, I think she is

a 1 or 2

> from the top, 1 from the side, and 2 from the front.

>

> My nephew was in a DOC Band from the same clinic for six months due

to

> plagio caused by tort. He had no problems and had wonderful

correction, so

> I really have no fears about the band. I really just want to get

the ball

> rolling if she does need to wear a band.

>

> Thank you for any comments you have!

>

> Jean

May 12, 2005

Hi

Welcom to the group!!! You will get a lot of support and questions

answered here by these wonderful women! My Sophie just got fitted

for her STARband yesterday! She is 8 months and 10 days old. We

knew back when she was 5 months that we would probably be at this

point but my husband was not ready. So here we are! You still have

time with and that's wonderful to have a family member

already go through the process so you have that support! Good luck

with your consultation! By the way, my pediatrician doesn't believe

in helmets either. We insisted and she is banded!!! Again, good

luck!

Sophie 8 months STARband 5/11

Plagio/Tort

Michigan

> Hello All,

>

> I am mom to seven month old and a couple of other

kids. My

> pediatrician thinks has a flat head, but he does not

recommend a

> helmet because he believes I would be " spending a lot of money to do

> something that would happen anyway. " I wished that I had known

that he

> didn't believe in the helmets when my five year old daughter was a

baby

> because her head is still flat. I believed him that it would round

out. My

> middle child, a boy, has a naturally round head.

>

> I called Cranial Technologies to see about an evaluation (luckily,

I live

> just a few miles from the Dallas office), and they said to go to a

> pediatrician who does believe in the helmets or go to a cranial-

facial

> surgeon. (How did you all get free evaluations from CT?) I have an

> appointment with the C-F surgeon on May 26, when Kris will be just

a few

> days shy of 8-months. We got a late start because it took me a

while to

> admit that her head was flat and then a few more weeks to convince

myself to

> go against my pediatrician's recommendations.

>

> I posted a few pictures (folder called ) so you all can tell

me

> whether you think she has plagio (brachy). When she looks straight

forward,

> I see a little roundness, but her head looks very flat when she

looks down.

> I think the roundness I see when she is looking straight or up is

from the

> extra head height caused by the plagio, but maybe her head really

is okay.

> Looking at the assessment charts on the CT website, I think she is

a 1 or 2

> from the top, 1 from the side, and 2 from the front.

>

> My nephew was in a DOC Band from the same clinic for six months due

to

> plagio caused by tort. He had no problems and had wonderful

correction, so

> I really have no fears about the band. I really just want to get

the ball

> rolling if she does need to wear a band.

>

> Thank you for any comments you have!

>

> Jean

August 30, 2005

Patti, I highly recommend you contact one of the agencies listed below and

tell them of your concerns for your son. You can have training in autism

spectrum written into your son's IEP so that everyone working with him has a

better understanding and can have ideas of what techniques would be best to

support your son in the classroom. If the school is sending him home and

labeling

him as ED, I would recommend a FBA (Functional Behavior Assessment) be

conducted. It is extremely inappropriate what they are doing and those kinds

of

tactics cannot be used as effective discipline and behavior techniques. Hope

this helps. Pam

Sue Pratt, Executive Director

Citizens Alliance to Uphold Special Education (CAUSE)

3303 West Saginaw Street, Suite F1

Lansing, MI 48917-2303

(517) 886-9167; (800) 221-9105 (In MI)

E-mail: info-cause@...

Jessie Mullins

Parents Training Parents Project/Parents are Experts

23077 Greenfield Road, Suite 205

Southfield, MI 48075-3744

(248) 557-5070 (V/TTY)

E-mail: ucpdetroit@...

August 30, 2005

Hi Patti,

I live outside of Detroit in one of the northwest suburbs. I have a

6 year old son with AS.

As far as dealing with the school goes, it sounds like you need to

get tough with them. Sending him home is denying him his education,

which they are not allowed to do. Why have they labeled him ED

instead of AI? Getting them to change his classification is a

start. He also needs social skills therapy, which the school should

provide.

There are lots of great people on this list who will have feedback

for you, it's an excellent resource.

Meredith

> Hi everyone, I'm new to this group and thought I should introduce

> myself. My name is Patti and I have an 8 yo boy with Aspergers.

He

> was just diagnosed last winter and I am still in the process of

> gathering as much info as I can. He starts back to school tomorrow

> and I am actually having panic attacks over the thought of it. I

> think I spent more time at the school last year than 1/2 of the

> students. The school has no idea how to deal with him and their

> answer is to just keep sending him home. Does anyone have any

advice

> on how to deal with this. We had an IEP meeting towards the end of

> the year, but their plan wasn't effective at all. They have labeld

> him ED and are treating this as if it were a disciplinary issue.

We

> have tried therapy, but have been unsuccessful with that. Sorry

this

> is so long, I'm just feeling a bit overwhelmed right now. We live

in

> Michigan, northeast of Detroit and I was wondering if anyone else

is

> from this area? Thanks for reading,

> Patti

August 30, 2005

Thanks Meredith,

I'm not sure why the school labeled him the way they did and I know

I should have never signed the IEP. I asked them for a review at

the end of last year to have it switched to AI and was told " no it's

too close to the end of the year and that they would not change it

until their social worker came in to evaluate my son " . I already

have had 2 doctors diagnos him, I don't need the schools so called

expert advice. I know legally they have to meet with me when I

request it, they are just being very difficult. And the school

therapist is not of any help whatsoever they haven't worked on

social skills at all. Has your boy been to a therapist? If so, did

it help at all with his behavior in school? I've had to 2

different therepists and they have both come right out and told me

they don't know what to do for him. I'm trying very hard to find a

new therapist that has a lot of experience with aspergers. Do you

have anyone you could recommend? I live in Macomb Township.

Thanks for the info,

Patti

> > Hi everyone, I'm new to this group and thought I should

introduce

> > myself. My name is Patti and I have an 8 yo boy with

Aspergers.

> He

> > was just diagnosed last winter and I am still in the process of

> > gathering as much info as I can. He starts back to school

tomorrow

> > and I am actually having panic attacks over the thought of it.

I

> > think I spent more time at the school last year than 1/2 of the

> > students. The school has no idea how to deal with him and their

> > answer is to just keep sending him home. Does anyone have any

> advice

> > on how to deal with this. We had an IEP meeting towards the end

of

> > the year, but their plan wasn't effective at all. They have

labeld

> > him ED and are treating this as if it were a disciplinary

issue.

> We

> > have tried therapy, but have been unsuccessful with that. Sorry

> this

> > is so long, I'm just feeling a bit overwhelmed right now. We

live

> in

> > Michigan, northeast of Detroit and I was wondering if anyone

else

> is

> > from this area? Thanks for reading,

> > Patti

August 30, 2005

Oh Pam, thank you from the bottom of my heart.

I will definately be giving them a call first thing in the morning.

I just didn't know where to start and new you have given me a

place. Thank you again.

Patti

> Patti, I highly recommend you contact one of the agencies listed

below and

> tell them of your concerns for your son. You can have training

in autism

> spectrum written into your son's IEP so that everyone working

with him has a

> better understanding and can have ideas of what techniques would

be best to

> support your son in the classroom. If the school is sending him

home and labeling

> him as ED, I would recommend a FBA (Functional Behavior

Assessment) be

> conducted. It is extremely inappropriate what they are doing and

those kinds of

> tactics cannot be used as effective discipline and behavior

techniques. Hope

> this helps. Pam

>

> Sue Pratt, Executive Director

> Citizens Alliance to Uphold Special Education (CAUSE)

> 3303 West Saginaw Street, Suite F1

> Lansing, MI 48917-2303

> (517) 886-9167; (800) 221-9105 (In MI)

> E-mail: info-cause@v...

> Jessie Mullins

> Parents Training Parents Project/Parents are Experts

> 23077 Greenfield Road, Suite 205

> Southfield, MI 48075-3744

> (248) 557-5070 (V/TTY)

> E-mail: ucpdetroit@a...

>

August 31, 2005

Hi Patti,

We haven't had much luck in that department either. We're on our

third therapist. I have BCN, and their " mental health " coverage

leaves a lot to be desired. We can't find anyone in the plan who has

experience with AS. We haven't seen improvement in his behavior

either at home or school. He gets one hour with the speech path a

week, that they call social skills training. We plan on putting him

in a social skills group at the Kaufman Center in West Bloomfield as

soon as he gets used to school.

I live on the other side of town from you, in Farmington Hills, so

I'm not really familiar with doctors around you. I've heard good

things about a Dr. Maltz in St. Clair Shores, but I don't know if he

does therapy or just diagnosis. Have you joined the Everyday

Miracles group? It's a local Detroit area list of parents who

have kids on the spectrum. They have a lot of knowledge and

resources they can share. There's also now an Autism Connections

Center at the Judson Center in Royal Oak, they may be able to point

you to someone. There's also an Autism Michigan group that's

been helpful...I just lurk there and take it all in.

I think if you request a meeting with the school, they have 30 days

to schedule it or they're violating IDEA. Keep after them!

Meredith

> > > Hi everyone, I'm new to this group and thought I should

> introduce

> > > myself. My name is Patti and I have an 8 yo boy with

> Aspergers.

> > He

> > > was just diagnosed last winter and I am still in the process of

> > > gathering as much info as I can. He starts back to school

> tomorrow

> > > and I am actually having panic attacks over the thought of it.

> I

> > > think I spent more time at the school last year than 1/2 of the

> > > students. The school has no idea how to deal with him and

their

> > > answer is to just keep sending him home. Does anyone have any

> > advice

> > > on how to deal with this. We had an IEP meeting towards the

end

> of

> > > the year, but their plan wasn't effective at all. They have

> labeld

> > > him ED and are treating this as if it were a disciplinary

> issue.

> > We

> > > have tried therapy, but have been unsuccessful with that.

Sorry

> > this

> > > is so long, I'm just feeling a bit overwhelmed right now. We

> live

> > in

> > > Michigan, northeast of Detroit and I was wondering if anyone

> else

> > is

> > > from this area? Thanks for reading,

> > > Patti

August 31, 2005

I've heard good

> things about a Dr. Maltz in St. Clair Shores, but I don't know if he

> does therapy or just diagnosis.

My son was diagnosed in June by Dr. Maltz...but he gave me cards of

others around if I chose therapy so I don't know if he does therapy.

My school seems like they have a good AI program so my DS can stay in

the regular classroom and receive services. We start school next week

and I am scared!

August 31, 2005

Hi Merideth,

Wow you are not far from me at all. How old is your son? Is the

Kaufman Center a place that works with kids with Asperger's? West

Bloomfield is less than 1/2 hour away and I wouldn't mind the drive

if it would help my son with his social skills. Thank you for Dr.

Maltz's name I will look him up and give him a call today. Another

good group is the Asperger Society of Michigan run by Dr. Howlin of

Chelsea. They also have a bulliten board. Keep in touch.

Patti

> > > > Hi everyone, I'm new to this group and thought I should

> > introduce

> > > > myself. My name is Patti and I have an 8 yo boy with

> > Aspergers.

> > > He

> > > > was just diagnosed last winter and I am still in the process

of

> > > > gathering as much info as I can. He starts back to school

> > tomorrow

> > > > and I am actually having panic attacks over the thought of

it.

> > I

> > > > think I spent more time at the school last year than 1/2 of

the

> > > > students. The school has no idea how to deal with him and

> their

> > > > answer is to just keep sending him home. Does anyone have

any

> > > advice

> > > > on how to deal with this. We had an IEP meeting towards the

> end

> > of

> > > > the year, but their plan wasn't effective at all. They have

> > labeld

> > > > him ED and are treating this as if it were a disciplinary

> > issue.

> > > We

> > > > have tried therapy, but have been unsuccessful with that.

> Sorry

> > > this

> > > > is so long, I'm just feeling a bit overwhelmed right now.

We

> > live

> > > in

> > > > Michigan, northeast of Detroit and I was wondering if anyone

> > else

> > > is

> > > > from this area? Thanks for reading,

> > > > Patti

August 31, 2005

,

My son's first day of school is today. I had panic attacks all

morning. I am going to call Dr. Maltz today and if he doesn't do

therapy, maybe he can tell me who does. I'm glad your school has a

good AI program. Good luck next week.

Patti

> I've heard good

> > things about a Dr. Maltz in St. Clair Shores, but I don't know if

he

> > does therapy or just diagnosis.

>

> My son was diagnosed in June by Dr. Maltz...but he gave me cards of

> others around if I chose therapy so I don't know if he does therapy.

> My school seems like they have a good AI program so my DS can stay

in

> the regular classroom and receive services. We start school next

week

> and I am scared!

>

August 31, 2005

My son is 6. The Kaufman Center helps kids with all kinds of

disabilities. There are a couple of places out by you that do the

same thing.

The Kaufman Center's website is http://www.kidspeech.com/

There's also The Abilities Center: http://www.abilitiescenter.com

Meredith

> Hi Merideth,

> Wow you are not far from me at all. How old is your son? Is the

> Kaufman Center a place that works with kids with Asperger's? West

> Bloomfield is less than 1/2 hour away and I wouldn't mind the drive

> if it would help my son with his social skills. Thank you for Dr.

> Maltz's name I will look him up and give him a call today. Another

> good group is the Asperger Society of Michigan run by Dr. Howlin of

> Chelsea. They also have a bulliten board. Keep in touch.

> Patti

>

September 1, 2005

Hello Patty I sure know how you feel. I have two boys with AD and the

Colorado School System has given me nothing but trouble. I finally

gave up and home school all my boys. We suspected our oldest- -

17 had AD for a year but his counselor told us that I was imagining

all the symptoms and my children are normal. We finally took the boys

to Las Vegas to a awesome Psychiatrist who gave the diagnoses.He has

suggested a psychologist here in colorado and put all my boys on

medication. It is amazing how much better my kids are doing now. It

is taking forever to get our insurance to aprove the new psychologist

and during the wait I need help with Ideas for Discipline.

> > > Hi everyone, I'm new to this group and thought I should

> introduce

> > > myself. My name is Patti and I have an 8 yo boy with

> Aspergers.

> > He

> > > was just diagnosed last winter and I am still in the process of

> > > gathering as much info as I can. He starts back to school

> tomorrow

> > > and I am actually having panic attacks over the thought of it.

> I

> > > think I spent more time at the school last year than 1/2 of the

> > > students. The school has no idea how to deal with him and

their

> > > answer is to just keep sending him home. Does anyone have any

> > advice

> > > on how to deal with this. We had an IEP meeting towards the

end

> of

> > > the year, but their plan wasn't effective at all. They have

> labeld

> > > him ED and are treating this as if it were a disciplinary

> issue.

> > We

> > > have tried therapy, but have been unsuccessful with that.

Sorry

> > this

> > > is so long, I'm just feeling a bit overwhelmed right now. We

> live

> > in

> > > Michigan, northeast of Detroit and I was wondering if anyone

> else

> > is

> > > from this area? Thanks for reading,

> > > Patti

October 16, 2005

>

Hi

I'm glad you found this group. THey have been helping me alot. I've been

dealing with fibro. so I don't think I've been able to help many yet,

eventually that will change. So far I just encourage moms face to face that I

see, and tell them to join this group. Keeps the good folks here really buzy.

My son started treatment 4/7/05 at 12.5 adjusted months of age, or 13.25 actual

His measurements were 13mm cranial vault ass. 9 mm ears and 5 eyes. They

changed only a little while in the 1st band for 2.75 months(he did not out grow

this, band but was encouraged to get 2nd) at that time his measurements went to

9mm cranial vault, 5 ears and 4 eyes mm assy. At this time his circumferance

grew 11mm. I'm not sure my band was good, and I'm still curious about the 2nd

one he's currently in for 3.5 months at age 19 mo. adjusted, or 20 actually.

I'm going to be going to a new ct at the cranial tech in Az. And am hoping to

get a good fitted band. My PT would not give me any hope when I got the band

1st on if he would get much correction, or the number of bands he would need.

Is your childs head not to severe compared to mine, that the PT was comfortable

telling you 3-4 months in 1 band. Just trying to get more info. And also want

you to be very very sure you have a great fit. There are files on the site. I

think my childs bump on the right side (plagio) caused the band to push up on

that side, making all the pressure points be off. Not trying to cause you any

stress, but I sure wish I would of know to really watch this. She if you can

get them to measure at 1st fittings, and see if the growth is being redirected

as it should be. Mine Pt. was against measuring more than 2 months into band.

Alot of time went by -lots of lost correction potential. (I have to say I did

watch for not good fittings, but the pt said the band was find - even when it

sat crooked. I don't understand, now I can see that his head was straight and

the cast was attempted to be cast just as he was, not crooked.

I hope I helped some, Please let me know what you childs measurements are, at

keep us posted.

Jantjie

19 month - 2 bands, changing for 3rd

> Hi,

>

> I'm Amy Meyers. My daughter, Alyssa (14 mths), was banded a week ago

> this past Thursday. She is doing great with the Docband, much to my

> husband and my relief. And she looks absolutely adorable in the band!

> Alyssa has really adjusted well to the band. We haven't had any red

> or pink spots on her head. She had some trouble sleeping in the band

> the first couple of nights but she's fine now. Alyssa has taken off

> the band by herself only once and doesn't even fiddle with the strap

> anymore. Since we live in Houston I was concerned about perspiration

> with the band but it hasn't been as bad as I expected.

>

> My husband and I (and son) adopted our daughter from China in June

> and noticed the first time we gave her a bath that the back of her

> head was flat on one side and tilted off to the right, classic case

> of plagiocephaly. It took us until the end of August before we were

> able to see a specialist here in Houston who immediately sent us to

> OPA in the Woodlands. I didn't find this group until last week -

> wish I'd known sooner - I've spent a lot of time reading through the

> files and really appreciate all the info. It's affirmed our decision

> to go ahead with the band.

>

> Our orthotist, Bob Cook, is estimating that Alyssa will be in the

> DocBand for 3 to 4 mths given her age but has also said we'll have to

> see. I'm hoping and praying that one band will do. Alyssa screamed

> and cried during the entire molding process. It shook me up a lot and

> Bob as well! He felt so bad for Alyssa and me. I really don't want to

> put her through another molding process.

>

> I was stressing out about the helmet decorating process and was glad

> to read the decorating tips. I had it in my head the decoration had

> to last the whole time Alyssa wore the helmet but it sounds like, no.

> So, I can have some fun with it now.

>

> Amy Meyers

> Houston, TX

>

October 16, 2005