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Hi, Bridget

My son, is a type 2 and he's 6 years old.

Any questions? Ask away and I'll see if I can help.

's Mummy

New here

Hi, I just joined yesterday and have not received any posts. Anyway I am a

developmental specialist for the WV Birth to Three programs. I will be

working

with a baby with SMA Type II in a few weeks and was looking for updated info.

I hope I am in the right place.

Bridget A.

WV

: BirthtoThreeSupport

Please join if you are a parent or professional interested in networking with

others in Early Intervention.

: Corticalvisionimpairments

Please join if you are interesting in discussing CVI and issues with that

diagnosis.

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Hi Bridget,

We have had great support from our developmental specialists. (Bernie is type 2,

now 7 years old.) I'm confident some of them would be happy to chat as fellow

professionals - email me off the list if you want the info: eross@...

You may want to look at Bernie's web site - there are lots of photos of

equipment we used when he was little.

http://www.ugalumni.uoguelph.ca/~eross/bern_intro.html

Bettylou Ross

Hi, I just joined yesterday and have not received any posts. Anyway I am a

developmental specialist for the WV Birth to Three programs. I will be

working

with a baby with SMA Type II in a few weeks and was looking for updated info.

I hope I am in the right place.

Bridget A.

WV

: BirthtoThreeSupport

Please join if you are a parent or professional interested in networking with

others in Early Intervention.

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Bettylou,

Great pictures of your family. I laughed when I read the interests

page...Ben and Warhammer. Be warned...They don't outgrow it. Chuck plays

once or twice a week. I wonder if Bernie will. I used to play Dungeons &

Dragons...Still want to paint miniatures.

Alana

At 05:15 PM 11/6/03 -0500, you wrote:

>Hi Bridget,

>We have had great support from our developmental specialists. (Bernie is

>type 2, now 7 years old.) I'm confident some of them would be happy to

>chat as fellow professionals - email me off the list if you want the info:

>eross@...

>You may want to look at Bernie's web site - there are lots of photos of

>equipment we used when he was little.

>http://www.ugalumni.uoguelph.ca/~eross/bern_intro.html

>Bettylou Ross

>

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Thanks! No, Ben shows no signs of quitting Warhammer - that's OK by me. I am a

Tolkien fan myself from way back, so it is at least one thing we share for fun.

bettylou

Re: New here

Bettylou,

Great pictures of your family. I laughed when I read the interests

page...Ben and Warhammer. Be warned...They don't outgrow it. Chuck plays

once or twice a week. I wonder if Bernie will. I used to play Dungeons &

Dragons...Still want to paint miniatures.

Alana

At 05:15 PM 11/6/03 -0500, you wrote:

>Hi Bridget,

>We have had great support from our developmental specialists. (Bernie is

>type 2, now 7 years old.) I'm confident some of them would be happy to

>chat as fellow professionals - email me off the list if you want the info:

>eross@...

>You may want to look at Bernie's web site - there are lots of photos of

>equipment we used when he was little.

>http://www.ugalumni.uoguelph.ca/~eross/bern_intro.html

>Bettylou Ross

>

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I admire you Bridget....from the support list I am on I have read

alot from parents who say their child's OT, PT, etc...really didn't

care they were just doing their job...you are showing us that you

care enough about your patients to research how you can help them to

the best of your abilities. I don't know if its my daughter you are

referring to..seeing how my daughter was just diagnosed

with SMA Type II and is currently in the process of beginning the WV

Birth to 3 program....even if you aren't our DS....I am sure the

child you are referring to will be in good hands....I would highly

suggest joining the www.smasupport.com chat list but use an alternate

email account seeing how this list can be heavy at times.

Doddie

Daughter: age 7 months

> Hi, I just joined yesterday and have not received any posts.

Anyway I am a

> developmental specialist for the WV Birth to Three programs. I

will be working

> with a baby with SMA Type II in a few weeks and was looking for

updated info.

> I hope I am in the right place.

>

> Bridget A.

> WV

> : BirthtoThreeSupport

> Please join if you are a parent or professional interested in

networking with

> others in Early Intervention.

>

> : Corticalvisionimpairments

> Please join if you are interesting in discussing CVI and issues

with that

> diagnosis.

>

>

>

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I actually love the Warhammer addiction. I relate to it much more than,

say, football. And YAY Tolkien...Changed my life! Thanks for sharing your

web page.

Alana

At 09:24 PM 11/6/03 -0500, you wrote:

>Thanks! No, Ben shows no signs of quitting Warhammer - that's OK by me. I

>am a Tolkien fan myself from way back, so it is at least one thing we

>share for fun.

>bettylou

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These lists are heavy. I will try to keep up seeing that I am on about 15

lists and the 3 of my own just trying to stay updated on everything new for

myself and the families I work with. I am dedicated to my job because I love

what I do.

Bridget A.

WV

: BirthtoThreeSupport

Please join if you are a parent or professional interested in networking with

others in Early Intervention.

: Corticalvisionimpairments

Please join if you are interesting in discussing CVI and issues with that

diagnosis.

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  • 1 month later...

Hello Kim,

Welcome to Life Lift

We don't have Life Lift on DVD yet, however suddenly in the past few months we

have had so many requests for DVD that I expect we will be getting them right

after the first of the year.

There have been several people who have said Life Lift has been incredible for

helping with panic attacks. There are some great testimonials on the web sites

that you can read.

Have a wonderful New Year,

Rashelle

The Body You Have Always Wanted is Coming Soon!

What can changing the way you breathe do for you?

More than you can imagine!

Remember that it is oxygen that burns fat, tones muscle, reduces stress and

increases strength and endurance.

Learn to breathe in the most efficient way possible with Life Lift!

Click here to see why tens of thousands agree, Life Lift is the best!

http://www.oxygenlift.net Life Lift is the Original Aerobic Breathing.

New Here

Hi all. I am here a little bit prematurely...I have not ordered

yet. i have done BodyFlex before and had done very well, but

unfortunately due to some problems I have with panic attacks, I had

stopped exercising. Anyway, I am VERY interested in starting

Lifelift and am curious if anyone knows if it is available on DVD. I

have checked and dont seem to find them anywhere. I do not have a

VCR :( . Thanks so much for your help.

Kim

What can changing the way you breathe do for you? Everything!

See why tens of thousands agree, Life Lift is the best!

http://www.oxygenzoo.com

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

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  • 2 weeks later...

Hi Nikki :)

First of all, a big pat on the back for you and starting BFL. It will

be the most rewarding thing you'll ever do for yourself, and the

others around you. This is a great group to get advice from, or just

vent sometimes. You're going to do great. Best of luck to you :)

Crystal

> Hi, I am new here. I have been " trying " to start BFL for about

three years

> now, but I kept getting pregnant. So I never followed through.

> I have come to the point in my life where I need a change, not only

for

> physical, but for my emotional well being. I really like the way I

feel when I am

> eating healthy and working out.

> I will officially start my challenge monday, but the past week I

have been

> eating BFL. And I would just like to say, this is the most self

discipline I

> have ever had. Usually when I " tried " BFL in the past, I would

just always end

> up taking free meals, here and there, which added up. But

yesterday, my

> husband and I were in the car and he wanted Taco Bell, but he

wouldn't get it

> because he knew that I was really trying to eat healthy......and

you know what I

> said? I said, go ahead. I will be ok. And I was!!!!!!!!

> So that is my intro, sorry for making it so long! I will have a lot

of

> questions, so sorry in advance. I AM going to do this right, this

time.

> Nikki

>

>

>

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  • 2 months later...
Guest guest

In a message dated 3/18/2004 3:21:30 PM Eastern Standard Time,

writes:

I am on my first challenge and have 5 weeks left. I have a beautiful

16 month old daughter who I stay home with. I started at 132 and am

at 130 - normally only 2 lbs lost after 7 weeks of HARD work would

make me crazy, but I know the scale isn't a valid indicator on this

program. Also... yesterday I bought a size 4 pair of jeans!!!! I

have NEVER EVER worn a 4 - EVER!!! I started at a solid size 10.

B4lifemom,

Gosh I wonder how this is done. Are your results amazingly different than

anything you've seen before. I started at a size 12 eleven weeks ago and I

still can't fit into a 10 comfortably. You've already dropped 3 sizes in 5

weeks!

K

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  • 1 month later...
Guest guest

hi tim,

welcome to the group! i'm alana, am also 37, have sma2, and live in berkeley,

california. am vent dependent, use a power chair, live on my own, hire personal

assistants, work at a computer training school, have a great time with

friends/boyfriend/family...life is good. where are you?

alana

new here

hello, my name is Tim, I am 37 and have sma. I am looking forward

to meeting some of you and possibly getting re-acquainted with some

of the people in here that I already know. Especially you, Tufty

Sue .

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Guest guest

Hi Tim!! I am 37 too!! Way to go!! I do not have SMA tho, but my daughter

is almost 5 years old with SMA type 2/3.

Welcome to the group! Lots of wonderful, kewl kewl people here!

Feel free to chat anytime...any of you guys on this list actually:

brendabrames@...

crystalssmaclub@... or

sweet_n_finickie (on messenger)

Sincerely,

Brames

Crystal, SMA type II/III (heckst which one)

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Guest guest

Hi Tim,

Welcome! My name is na. I am 26yrs old and have SMA 2. I live

in NYC with my boyfriend, , and have a BA in Psychology. It is

nice to meet you.

-na

> hello, my name is Tim, I am 37 and have sma. I am looking forward

> to meeting some of you and possibly getting re-acquainted with

some

> of the people in here that I already know. Especially you, Tufty

> Sue .

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Guest guest

Hi Tim

Welcome to the list, nice to see you here. Hows things, what have you been up

to since we last talked? That must be quite a few years?

Sue

> hello, my name is Tim, I am 37 and have sma. I am looking forward

> to meeting some of you and possibly getting re-acquainted with some

> of the people in here that I already know. Especially you, Tufty

> Sue .

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Guest guest

You're welcome, Suzy,

You may want to check with his group in Japan:

Japan Muscular Dystrophy Association

National recuperations Education Center

2-2-8 Nishi-Waseda-Edu Center, Sinjuko-Ku, Tokyo 162

Phone: 81.5273 2930 - Fax: 81.35 215 1735

E-mail: yk@...,edu

Good luck!

Alana

Re: new here

Alana,

Thanks for your e-mail.

I wish this type of support group is available in Japan.

It is very helpful and like you said, everyone is so knowledgeable.

Thanks again.

Suzy

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Guest guest

We have a Caravan with an automatic ramp. TX voc rehab paid for the

modifications ($17,000). I was already employed several years but they also

help people stay employed with helping with things like this. They paid for

mods on our first van while we were in college too. Have you asked voc

rehab yet?

Lori

new here

It is so nice to meet all of you! I'm an English major with a

double minor in spanish and anthropology. My ultimate goal is law

school but I'm willing to teach too.

Right now I'm trying to figure out how to raise money for

vehicle mods or a new vehicle. I traded my van in because between

payments, insur and gas we were shelling out almost $1000 a month!

Now we have a pontiac Aztec...the gas mileage is sooooooo much

better. What kind of vehicle mods do you all have?

Kisha

A FEW RULES

* The list members come from many backgrounds, ages and beliefs So all

members most be tolerant and respectful to all members.

* Some adult language and topics (like sexual health, swearing..) may

occur occasionally in emails. Over use of inappropriate language will

not be allowed. If your under 16 ask your parents/gaurdian before you

join the list.

* No SPAMMING or sending numerous emails unrelated to the topics of

spinal muscular atrophy, health, and the daily issues of the disabled.

Post message:

Subscribe: -subscribe

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List manager: (Sexy Mature Artist) Email: Esma1999@...

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  • 3 weeks later...
Guest guest

Faith,

What a perfect name...

First of all you deserve a major accolades for what you have ALREADY

accomplished! You have achieved what millions fail to do every day

and for that, you are already a winner...

I'm very new to the challenge and this group too, but both have been

a wonderful experience thus far. I know you will have lots of

positivity from this decision you've made. The people in this group

are so helpful, feel free to ask anything and they will give a well

informed and caring answer. I look forward to hearing about your

success! I know you'll do it! WOW good for you!

Take care!

-Ruth

> Hi everyone,

>

> My name is Faith. I am new to this group and looking forward to

> sharing this experience with all of you. I am a single mom with 2

> children and reached an all time high weight of 304 lbs last May. I

> am now down 109 lbs and weigh 195. I just started working out at

the

> gym and I know this 12 week challenge will keep me moving in the

> right direction. Any advice or encouragement is welcome. Thanks,

Faith

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Guest guest

Hi Faith!

First I think you should change your screen name - boringNHmom is just not

very positive (lol!). I'm sure your anything but boring!

Congrats on your accomplishments thus far... Building muscle at the gym is

probably just what you need to jumpstart that additional fat loss.

Keep us all posted of your progress!

in WI

New here

> Hi everyone,

>

> My name is Faith. I am new to this group and looking forward to

> sharing this experience with all of you. I am a single mom with 2

> children and reached an all time high weight of 304 lbs last May. I

> am now down 109 lbs and weigh 195. I just started working out at the

> gym and I know this 12 week challenge will keep me moving in the

> right direction. Any advice or encouragement is welcome. Thanks, Faith

>

>

>

>

>

>

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  • 1 month later...
Guest guest

Hi, welcome to the group! :-) How are your first 4 weeks going? Let us know if

you have any questions.

new here

Hi! I just joined yesterday. I'm in my late 20s,

vegetarian, reside in NC, and have been working slowly

but surely at the BfL program for about 4 weeks. I

found this group listed on the BfL website and I look

forward to learning and sharing!

Miu

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  • 1 month later...
  • 2 months later...

Hello Debbie, and welcome to this wonderful group. Alot of what you described reminds me of my son Cameron. He's 4. He had a serious speech delay, not saying ANYTHING until well after he was 3, but I am attributing much of that delay to ear trouble. He got tubes in January 03, but it was Jan. 04 before he started talking, and once he started, we haven't been able to make him stop! LOL Cameron is obsessed with anything Blue's Clues, and yellow cars. At 3 1/2 years old, he could write his name, spelling it correctly, and count to 10 in English and Spanish. He can't stand to be without clothes on unless he is taking a bath. He sleeps with his shoes on and sleeps on the floor. He lines the VCR cassette tapes side by side on his dresser every night before going to bed. He still will not poop in the potty and we only got him to go tee tee in the potty in July (turned 4 in Sept.). Cameron HATES changes in the routine, which often make him throw himself on the floor in a fit.

Getting a diagnosis can be a frustrating sequence of events. We've been working on it for over a year and still do not have an official diagnosis. It hard when they are so smart and have learned how to behave in public and you are the only one who sees these things. But you have come to the right place for support. If your son does have autism or Asperger's, don't fret. There is hope for these kids! With the right therapy and even some have improved with diet changes, these kids can improve so much. "Autism" can be a scary and overwhelming word at first, but you're not alone. You can email me privately if you want- anyone on this list can.

Anne

-- New here

Hi, my name is Debbie, Im new on this board, so this post may be long.

My son Camden is 3 1/2 years old, I also have a 20 month old, named Tanner.

A little background on Camden. At 18 months he had speech delay and only used grunting. at 20 minths he became more and more frustrated then normal kids his age, and he was given home spech therapy. At 24 months he became obsessed with Credit card symbols on tv, instores, on gas station signs etc. At 3 year of age he became fixated on DVD symbols, and any movie trademarks, like Pizar, DVD, Dreamworks, Paramount, FBI, the warning on videos, the rating system ( G, Pg 13). He also knows what is in theatres and what is only out on vhs and video. Also at age 3 he transitions from the local infants and toddlers to a speech preschool 4 days a week for 2 1/2 hours a day ( 9-11:30), I transport him. His teacher says they have a psycologist atthe school taht would evaluate him if she ever saw signs of autism and to tdae she only will say she thinks something else is going on but hasnt answered my request to have the school psycologist observe him. I finally went through my insurance and saw a psycologist friday who after 15 minutes of observing and chatting with me, brought up autism and aspergers. I have consulted University of land Pedicatrics and am waiting to get called back for a ustism pedicatrical developmental evaluation for autism.

Camden is very bright, knows how to count 1-300 and 300 back to 1. Heknows his alphabet, can spell and say his name, my name and his brothers, and all his family members. He can sit patiently in a restaurant for food, and wait his turn. His main issues are still with rewinding videos to certain areas over and over, rewinding cassetee tpaas he uses to practice his speech with, pushing the DVD buttons, still saying FBI and warning, DIsny, pixar, etc. His fixations arent evedant except on the computer at school where he troes to sneak CD's into it without permission. Im hoping we get some answers, as he sint potty trained, but we feel he need sto be with his peers. He is quite normal for being autistic or having aspergers, and can function in a normal setting 85% of the time, but he freaks out when a particular part of his routine is broken. Not sure if anyone else has this Exact same experience, but if you have a close one let me know.

Thanks for listening.

Debbie in land.

Re: Sleep issues and sick days

My son didn't sleep through the night until he was 7. There is huge laundry list of things that I tried. Here is partial list.1. A specific bedtime routine2. Just leaving the lamp on.3. Relaxation tape4. visualization techniques6. Benadryl...when I really need a night's sleep. One doctor told me to give it to every night. I found a new Doctor.He is 12 now and has no sleep issues. Some kids grow out of it eventually...I wish mine grew out of it sooner. I know how sleep deprivation can affect you.You can always call an IEP meeting to discuss how the schoool needs to accommadate him during colds to ensure that your child is getting FAPE. Missing 10 days seems to be the magic number for incidents, but some SD are more responsive then others.> I know alot of AS kids have sleep issues. We have trouble settling Zo down for the night, claims of fears and if he wakes in the night, like he did last night at 4AM he sometimes cannot get back to sleep. Any suggestions??> > Also do you all find you need to keep your kids home from school for minor illnesses like the sniffles. I have had Alonzo home for 3 days now. He was sent home from school sick after having a couple of meltdowns at school. He has had a cold and had already been complaining about his ears to the nurse earlier that morning. The social worker felt and is most likely right that his just wasn't feeling well so it lowered his tolerance for frustration. I have very sniffly coughy kids all winter. I am worried that I am going to end up having him home more than he goes to school the next few months!> > > > > > > __________________________________________________>

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