New Member

[Guest guest]

Well Hello Tom

You have SMA Type 3 Wow, thats interesting I have

never met anyone that had sma that I know of let alone the same as me

yes I still walk really well but things are getting harder by the

day, I am a Record Producer for a Company that I own in Minneapolis,

MN I live in Coon Rapids, MN, How are you getting along? I have a

real tough time more metally than anything. take care chad

I have also posted 20 pics in the photos section of me and some of my

daughter for those that would like to see in (Chad and Zoe)

[Guest guest]

hello chad! welcome to the list my name is jodi & I think i might know

you from camp courage. i live in downtown mpls with my service dog maggie

may.

i'm in the same boat as far as being able to cope with the progression of

my sma. i'm starting to struggle with swallowing and even driving my

chair. it's hard to mentally accept the fact this fricking disease is

litterally eating away at my body. my pain level is extremly high and

i've also got a history of sucidal depression because of it. i've been

on meds for a long time for it, but it never went away until i got maggie

as a campanion.

if you'd like to chat or just vent feel free to write privatly or on the

list.

jodi & maggie May

[Guest guest]

Hey Chad, thats cool that you are a producer. What kind of music do you do?

I'd love to work in the music industry but theres not much call for an aging

punk with no particular skills. I still walk a little but only short

distances on level surfaces and definitely no stairs for a few years now. I

have been through some bouts with depression, some of them pretty bad, but I

have been doing so much better lately. I used to be a very angry person.

I wish I had gone to camp like you did. I never met anyone else with any

disability, let alone SMA, until I joined this group. For a long time I

skipped going to the clinic and would turn down any help my friends offered.

Both were big mistakes, I missed out on a lot of good times. Once I started

being more open and honest about it, I felt much better. Feel free to email

me any time you need to get something off your chest. Thats a cute little

girl you got there!

Take care,

Tom

Re: New Member

> Well Hello Tom

> You have SMA Type 3 Wow, thats interesting I have

> never met anyone that had sma that I know of let alone the same as me

> yes I still walk really well but things are getting harder by the

> day, I am a Record Producer for a Company that I own in Minneapolis,

> MN I live in Coon Rapids, MN, How are you getting along? I have a

> real tough time more metally than anything. take care chad

>

> I have also posted 20 pics in the photos section of me and some of my

> daughter for those that would like to see in (Chad and Zoe)

>

>

>

>

[Guest guest]

Welcome . What ER did you take him to in Philly? Where r u from? I

am from PA, and I have been going to CHOP since 5th grade. I have SMA II.

If you are looking for a good pulmonologist I recommend Dr. Panitch. He is

familiar w/NIV equipment and knows of Dr. Bach. gOOD LUCK.

KIMI

[Guest guest]

Welcome !

My name is English, I live with my husband and three kids (4th on

the way) in Utah. I have Ethan (8 1/2) (5) Taleah (2 1/2) and

Colin coming in September.

Taleah has SMA 1, she was diagnosed at 3 months, although we saw symptoms

around 6 weeks. She follows Dr. Bach's protocols with Bipap, cough

machine, etc. and is on the amino acid diet.

BUT, I always make sure to tell people that these are not the important

parts of her life. What's really important is that she is a bright happy

little girl who loves Elmo, loves to color, play with marbles and as of two

weeks ago her new favorite activity is to spin circles in her Power Chair.

Stacey pointed you in the direction of several good sources of info. It

sounds like you're very proactive, I applaud your decision to get the

g-tube before signs of trouble, rather than waiting for things to get

bad. I wish we'd had Taleah's g-tube done before she began losing weight

due to lack of swallow.

There's a place on the website for this group where you can post

pictures. I have a few pictures there and one just taken on Easter of my

kiddo's You can put a face to name for a lot of the members of this group

by browsing the pictures.

At 07:59 PM 4/26/2003 +0000, you wrote:

>Hello

>

>My name is . Last month, my son was diagnosed with SMA Type 1

>at six months. He is me and my husbands first child, and though I

>had suspected something was wrong with him for a while, our doctor

>never said much about him not rolling over or lifting up his head, so

>we thought he was just slow. When we went on a trip to visit my

>husbands parents in Philadelphia, they knew right away something was

>wrong, wo we took him to the ER. A week later, he was diagnosed.

>Right now we are at the hospital for the fourth time in about a month

>and a half, this time we almost lost him due to him aspirating saliva

>into his lungs. Anyway, just thought i'd introduce myself.

>

>

>

>

[Guest guest]

In a message dated 4/26/2003 6:27:50 PM Eastern Standard Time, mhe@...

writes:

> There's a place on the website for this group where you can post

> pictures. I have a few pictures there and one just taken on Easter of my

> kiddo's You can put a face to name for a lot of the

> members of this group

> by browsing the pictures.

>

>

For some reason I've never been able to get to da pics on that site. How do u

login? Do I need to login under my existing ID or what?

~s, the unique princess~

[Guest guest]

You should be able to go to the www. and from there It

gives you a Register or Sign in option. If you have registered at the

website before you can put your existing name and password and it takes you

right to a page that lists all of the groups you're a member of. From

there it's pretty simple - click on SMAFriends then click on the link on

the left side that says photos.

If you haven't registered you click on the register button on that first

page and fill out the info. to register.

Try this, and if that doesn't work for you, holler again and I'll see, with

my limited experience, if there are other suggestions.

The At 01:36 AM 4/27/2003 -0400, you wrote:

>In a message dated 4/26/2003 6:27:50 PM Eastern Standard Time,

>mhe@... writes:

>

> > There's a place on the website for this group where you can post

> > pictures. I have a few pictures there and one just taken on Easter of my

> > kiddo's You can put a face to name for a lot of the

> > members of this group

> > by browsing the pictures.

> >

> >

>

>For some reason I've never been able to get to da pics on that site. How

>do u login? Do I need to login under my existing ID or what?

>

>~s, the unique princess~

>

>

>

[Guest guest]

If you haven't already, you need to get him to see Bach in Newark so

you know how to handle the upcoming respiratory issues, and to get the right

equipment!

Jay

New member

Hello

My name is . Last month, my son was diagnosed with SMA Type 1

at six months. He is me and my husbands first child, and though I

had suspected something was wrong with him for a while, our doctor

never said much about him not rolling over or lifting up his head, so

we thought he was just slow. When we went on a trip to visit my

husbands parents in Philadelphia, they knew right away something was

wrong, wo we took him to the ER. A week later, he was diagnosed.

Right now we are at the hospital for the fourth time in about a month

and a half, this time we almost lost him due to him aspirating saliva

into his lungs. Anyway, just thought i'd introduce myself.

[Guest guest]

Hello,

My name is Corina and I am the parent of a 5 year old autistic child. My

husband and I had always heard that the best therapy for our daughter would be a

sibling. We finally added one to our family and she is 2 months old. So,

someone please tell me, does it get easier????? I just can't imagine how

another sibling is the best therapy. Right now we are seeing our older child

regress and her behavior has become a bit more aggressive since the birth of her

sister. She finally acknowledges the baby is a part of the familly by referring

to her as " baby sister. " My daughter does not communicate well but she does get

her point across in her own way. The only good thing I have seen is that she

gets so mad with the baby that she screams out her demands and is able to do so

in a more articulate manner. We are actually hearing 5 and 6 word sentences! I

just want to know what we can do to help our daughter adjust. For those of you

who had another child after your autistic child was born, what suggestions do

you have? The therapist just says for us to be patient but he does not have to

live in our household and after 2 months of this, it is easier said than done.

For the past 2 days for example, my duaghter has undressed herself and thrown

major fits after I had already gotten her ready for school. I usually get her

ready and leave for work. My husband drops her off at school. It takes both of

us to get her dressed now when we had progressed to the point where she actually

helped one of us get her ready. This behavior has only occurred in the past 2

months since the birth of the baby.

family

[Guest guest]

The best thing I ever bought was a flowbee. It hooks to your vacuum and

cuts their hair.

Vicki

New Member

Hi. I am a mother of 2 children, ages 3 and 5 with autism. My 5

year old has been diagnosed with Asperger's and my 3 year old has

PDD. They were both diagnosed within the last 6 months, so I am

somewhat new to this. I am in the process of learning all I can

about the subject and treatment options. I would appreciate any

information which might be helpful. I do have a specific question:

Does anyone have any advice on how to take my child to get a haircut

without him freaking out? Thanks.

Unlocking Autism

www.UnlockingAutism.org

Autism-Awareness-Action

Worldwide internet group for parents who have a

child with AUTISM.

Schafer Autism Report

News and information on Autism

To Subscribe http://home.sprynet.com/~schafer/index.html

Healing Autism: No Finer Cause on the Planet

[Guest guest]

Where do you live? There are some hairstylists that will come to your home

and some that work out of their homes. That seems to work better. If you

live in Austin, I can help you with specific people.

Also, I would seriously recommend you consider looking into having a home

ABA program for your kids. They are young and at the perfect age to benefit

from it.

New Member

> Hi. I am a mother of 2 children, ages 3 and 5 with autism. My 5

> year old has been diagnosed with Asperger's and my 3 year old has

> PDD. They were both diagnosed within the last 6 months, so I am

> somewhat new to this. I am in the process of learning all I can

> about the subject and treatment options. I would appreciate any

> information which might be helpful. I do have a specific question:

> Does anyone have any advice on how to take my child to get a haircut

> without him freaking out? Thanks.

>

>

>

> Unlocking Autism

> www.UnlockingAutism.org

>

> Autism-Awareness-Action

> Worldwide internet group for parents who have a

> child with AUTISM.

>

> Schafer Autism Report

> News and information on Autism

> To Subscribe http://home.sprynet.com/~schafer/index.html

> Healing Autism: No Finer Cause on the Planet

>

>

>

>

>

[Guest guest]

Hi,

My name is , we live in Queensland, My daughter is Downsyndrome and

will be 14 in june, we have just had a major change in our lives, leaving

state school of 8 years and going to high school with a seu incorporated, I

new it would be a big change but her behavour is horrible, talking to

herself, hitting herself and crying, then she is fine again, I had her

thyroid tested and saw a specialist, but the more i read the more i think

she has this dual ds-ads is that right can anyone tell me we have had some

not so nice times and i am not used to it, it seems to come and go, does

this happen due to big changes?? Can someone explain it to me please, none

of her doctors have even mentioned this!!

Thanks

[Guest guest]

We live in Houston, and my older son's hairdresser agreed to cut my ASD

son's hair. We take the TV/VCR with us and his favorite video, and she

takes her time with him, but we do pay her double her fee.

New Member

> Hi. I am a mother of 2 children, ages 3 and 5 with autism. My 5

> year old has been diagnosed with Asperger's and my 3 year old has

> PDD. They were both diagnosed within the last 6 months, so I am

> somewhat new to this. I am in the process of learning all I can

> about the subject and treatment options. I would appreciate any

> information which might be helpful. I do have a specific question:

> Does anyone have any advice on how to take my child to get a haircut

> without him freaking out? Thanks.

>

>

>

> Unlocking Autism

> www.UnlockingAutism.org

>

> Autism-Awareness-Action

> Worldwide internet group for parents who have a

> child with AUTISM.

>

> Schafer Autism Report

> News and information on Autism

> To Subscribe http://home.sprynet.com/~schafer/index.html

> Healing Autism: No Finer Cause on the Planet

>

>

>

>

>

[Guest guest]

If you are in Dallas, there is a great stylist who is wonderful with

children with autism. She has her own shop, Tots to Teens, in Plano and her

name is Robin. Her shop has tv's with lots of kids movies, toys, special

chairs, the works. She is very patient and very fast.

Anissa

New Member

>

>

> > Hi. I am a mother of 2 children, ages 3 and 5 with autism. My 5

> > year old has been diagnosed with Asperger's and my 3 year old has

> > PDD. They were both diagnosed within the last 6 months, so I am

> > somewhat new to this. I am in the process of learning all I can

> > about the subject and treatment options. I would appreciate any

> > information which might be helpful. I do have a specific question:

> > Does anyone have any advice on how to take my child to get a haircut

> > without him freaking out? Thanks.

> >

> >

> >

> > Unlocking Autism

> > www.UnlockingAutism.org

> >

> > Autism-Awareness-Action

> > Worldwide internet group for parents who have a

> > child with AUTISM.

> >

> > Schafer Autism Report

> > News and information on Autism

> > To Subscribe http://home.sprynet.com/~schafer/index.html

> > Healing Autism: No Finer Cause on the Planet

> >

> >

> >

> >

> >

[Guest guest]

That wasn't a big problem for us, so I don't know from our own experience

with this specific question. But we have had similar type problems, so here

is one suggestion you might try....go to a salon specializing in kids, the

ones that have TV's , bring your child's favorite video and allow them to

watch the video WHILE & ONLY- their hair is being cut.

This has worked for us in other similar types of problems.

J. P. Reirdon

Webmaster

http://www.featnt.org/ <http://www.featnt.org/>

<http://www.autismtreatment.info/> http://www.autismtreatment.info/

You CAN treat Autism!! Get treatment tips for children with Autism, PDD and

Aperger's Syndrome from parents who have successfully helped their children.

New Member

Hi. I am a mother of 2 children, ages 3 and 5 with autism. My 5

year old has been diagnosed with Asperger's and my 3 year old has

PDD. They were both diagnosed within the last 6 months, so I am

somewhat new to this. I am in the process of learning all I can

about the subject and treatment options. I would appreciate any

information which might be helpful. I do have a specific question:

Does anyone have any advice on how to take my child to get a haircut

without him freaking out? Thanks.

[Guest guest]

Welcome ! I have a 13 year old son, and hormones are raging! I have

really noticed that he is ultra sensitive to changes now. I will be so glad

for him to get older, though some days I wonder if he will live long enough!

lol

Take care! Lynn, Mom to and the

Zoo

[Guest guest]

AHHHHHHH........the issue of sex. My life will truly seem like a zoo with

this story. has been in a wonderful life skills class for the past

three years. He has been taught about his body through pictures, movies, and

his older brothers. Doesn't matter, they seem to figure it out on their own.

has a twelve year old sister who has DS and is deaf. Communication

has made it very difficult to really explain it to her complete

understanding. What she does know is what feels good. This is not an

uncommon problem with the developmentally disabled, because they have NOOO

inhibitions. Now put one hormonal boy with one " Horny " girl -- with nooo

inhibitions. YOUR WORST NIGHTMARE! We have changed our rooms and life over

this! She is the aggressor, not him; though there are no complaints. I have

sought help everywhere. We have an inside lock on his door, and his brother

sleeps in the same room. That does not help during the day. The doctor's

tell me they will calm down as they get older, and I pray that I live through

it. They are never even allowed in the same room without someone

responsible. is my constant companion now. Thank goodness he is not

bothered by that. Before she hit adolescence, we had a terrible time with

him going up and touching women's breasts. Life is fun! I never thought

about these sorts of problems! And they were our seventh and eighth

children. I must sound like a terrible mother! ~Lynn, head zookeeper

[Guest guest]

Hi, LYnn,

I have a 13 year old step son. His hormones are also growing visibly. I'm

wondering, did you talk to your son about sex? Explain to him what's

happening to his body? I worry that maybe too much information might be

dangerous, know what I mean? ANd I have 6 and 7 year old daughters... He

wonders why things are growing. We tell him because he's getting older and

it's normal. But, what about sex?

Re: re: new member

Welcome ! I have a 13 year old son, and hormones are raging! I have

really noticed that he is ultra sensitive to changes now. I will be so glad

for him to get older, though some days I wonder if he will live long enough!

lol

Take care! Lynn, Mom to and

the

Zoo

[Guest guest]

In a message dated 5/21/2003 10:20:11 AM Eastern Standard Time,

melville@... writes:

> Maybe the answer for me is to talk with my little girls. THey are good at

> tattling when he invades their physical space, I would know if he approached

> them. BUt, as you say, I am there when they are together, always. Except

> at night when everyone is sleeping. I could put a lock on their door, but

> one of them is still afraid of the monsters in the closet. I think she

> might freak.

>

What about putting an outside lock on HIS door? We have one on Maddie's but

not for the same reasons. I hated to do it, but the kid could be in Canada

by morning and we wouldn't know it....LOL It's just one of those easy

access hook and eye ones. Believe me, I remember being young and playing

*doctor* with my mom's best friend's sons. Me and my sister recently saw the

now

grown men and we got a huge laugh over remembering...but BOY oh BOY...WHERE

were our moms??????? LOL Caution is always the best way to go!!!

Donna

[Guest guest]

No, no, no. Not at all. What can you do? In this circumstance, physical

intervention is the only answer.

Maybe the answer for me is to talk with my little girls. THey are good at

tattling when he invades their physical space, I would know if he approached

them. BUt, as you say, I am there when they are together, always. Except

at night when everyone is sleeping. I could put a lock on their door, but

one of them is still afraid of the monsters in the closet. I think she

might freak.

Re: re: new member

AHHHHHHH........the issue of sex. My life will truly seem like a zoo with

this story. has been in a wonderful life skills class for the past

three years. He has been taught about his body through pictures, movies,

and

his older brothers. Doesn't matter, they seem to figure it out on their

own.

has a twelve year old sister who has DS and is deaf. Communication

has made it very difficult to really explain it to her complete

understanding. What she does know is what feels good. This is not an

uncommon problem with the developmentally disabled, because they have NOOO

inhibitions. Now put one hormonal boy with one " Horny " girl -- with nooo

inhibitions. YOUR WORST NIGHTMARE! We have changed our rooms and life over

this! She is the aggressor, not him; though there are no complaints. I

have

sought help everywhere. We have an inside lock on his door, and his brother

sleeps in the same room. That does not help during the day. The doctor's

tell me they will calm down as they get older, and I pray that I live

through

it. They are never even allowed in the same room without someone

responsible. is my constant companion now. Thank goodness he is not

bothered by that. Before she hit adolescence, we had a terrible time with

him going up and touching women's breasts. Life is fun! I never thought

about these sorts of problems! And they were our seventh and eighth

children. I must sound like a terrible mother! ~Lynn, head

zookeeper

[Guest guest]

Hi, Jerome. Try the SoapyTech group on

(SoapyTech/). It's specifically for technical

issues related to soaping and small business ownership.

pamela

[Guest guest]

In a message dated 7/12/2003 7:53:03 PM Pacific Daylight Time,

ptforme2002@... writes:

> I would like to say hi to everyone, I'm a pre-op patient and have so

> many questions and can't wait to get started on my new life. Help me

> get started.

>

> Barbara

Hi Barbara!

Welcome and start asking questions! You need to give us a starting point,

and then you will never get us to stop! LOL You have joined a great group and

we have the best two doctors in Dr. K and Dr. Z!

Hugs and blessings, Ann

[Guest guest]

Hi Barbara!

Welcome to the list! I'm Melisa, Mom of Three girls ages 11, 12 and 14 in

two weeks. I'm married to and we just celebrated our 15th wedding

anniversary.

I'm post-op and go in next month for my 18 month check-up! I've lost 147

pounds so far, and wear between a 14 to an 18 depending on who makes the

garment. I just bought a size " L " in a bathing suit!

This group is full of information... just start shoutin' out your questions

and someone is bound to answer...

Welcome to the others I haven't had a moment to welcome!

Melisa in CA

[Guest guest]

Hi Barbara,

Welcome to our family! Ask all the questions youwant - we will try to

have the answers! Tell us more about yourself!

hugs, cindy lee

> I would like to say hi to everyone, I'm a pre-op patient and have

so

> many questions and can't wait to get started on my new life. Help

me

> get started.

>

> Barbara

[Guest guest]

Welcome,

Everyone here is very welcoming and helpful and you can ask anything.

Everyone was and still a great support to me before and after my surgery.

Good Luck,

in Wisconsin

New member

> I would like to say hi to everyone, I'm a pre-op patient and have so

> many questions and can't wait to get started on my new life. Help me

> get started.

>

> Barbara

>

>

>

>