Hi !

[Guest guest]

Welcome & Tiernan!

Don't betoo hard on yourself .Luke is my 4th child & I got lazy & didn't rotate his head from left to right as often as I did with theother boys.My 3yo spent alot of time in a car seat cause he had reflux & he didn't get a flat head so go figure!

Tiernanis so cute & looks like a little ham! You are getting an early start so Iexpect he'll get wonderful correction.

Luke'shelmet is white & I decorate it w/scrapbooking stickers.I had chosen apattern & changed my mind at the last minute.

I'veattached a couple of pics so you can see different things I've done withLuke's helmet.

Goodluck!

Thanks… I wouldn’t have held him that way if someone hadonly told me about this!!! Oh well… we’redoing what we need to do to help him, that’s the important part! Thanks… he is a cutie pie and SUCH a ham (flirts with everyone,too…)

Luke! Oh my goodnesswhat a sweetie pie! Love the pictures…the under construction is a good way of putting it… gotta have a sense ofhumor, right? Looks like he had a greatbirthday… seeing how happy he is, I’m not so worried about T being unhappy in ahelmet… Thank you so much for sharing with me! What a doll you have!

[Guest guest]

Well, My name is Fara and I am trying this as a way to improve my

health. I was told I have EBV (Epstien Barr Virus) about 4 years ago

and they have no clue how to make me feel better. I have noticed that

the worse I feel the more I eat, and the more I eat the worse I feel.

I have also noticed that if I don't eat a lot I feel better. I am

joining this group in hopes that maybe I can get some help as far as

eating less , but eating healthy. I look foward to chatting with all

of you !

[Guest guest]

Luke IS growing fast! I put a couple of pictures of him in the " L "

folder - he's in the helmet that's painted black and gold to look

like a Steelers helmet.

How is McKenna tolerating her helmet? Have you taken many pics?

Getting any questions/stories from strangers? I've had an older man

(70-ish) ask me about it at Target and a girl at church tell me that

she took her twins to Cranial Tech, too - it was nice to share

stories with someone! She was super happy with their results - they

were in theirs for five months (they were a little older when they

started, though).

Hope things are going well with you!

Jess

> > >

> > > He started at 5 months and will have a total of 7

> > weeks of therapy.

> > This may sound

> > > strange, but I'm not thrilled about my son's

> > band coming off so

> > soon. I love the progress

> > > he's made but I was hoping for better aesthetic

> > results at the end.

> > That isn't my real

> > > concern though. I am worried about his head reverting

> > back after

> > the band comes off

> > > since so far he still sleeps on his back and

> > doesn't yet roll or

> > sit up and doesn't stay on his

> > > tummy voluntarily. I was hoping he'd be in it a

> > few months and

> > would have better motor

> > > skills once it came off (he is in PT for delay).

> > >

> > > I know most people can't wait for it to be off but

> > I don't mind the

> > bad. He's happy in it,

> > > and I don't care about stares (he had serious

> > health issues so

> > getting banded didn't give

> > > me a moments bit of concern, it felt great to be able

> > to *do*

> > something for him even if it

> > > wasn't about one of the bigger problems). I was

> > able to stop

> > worrying about his head on

> > > the mattress, changing table, playing on the play gym,

> > riding in

> > the car seat and stroller. I

> > > didn't have to reposition at night or keep a

> > noggin nest under his

> > head or strain my back

> > > with a baby carrier all day anymore. At six months

> > babies skull's

> > are still malleable so I

> > > feel like when it comes off I have to go back to head

> > patrol duty.

> > I don't want to end up

> > > with him needing another band.

> > >

> > >

> > > Any advice from people who have finished banding with

> > a young baby

> > who isn't mobile

> > > yet?

> > >

>

[Guest guest]

Hi Jess-

Sorry to jump in here, but I just wanted to say that I came across

Luke's pictures with his Steelers helmet and didn't realize he was

yours. Very cute! I am originally from Pittsburgh and also decorated

my son's band to look like a Steelers helmet (twice actually, since

he had two bands). His pictures are in the J folder under Jake W. I

submitted one or two other pictures of his Steelers helmet for the

2009 DOCBand calendar, so I'm hoping he'll end up in it! Are you

from Pittsburgh as well?

Jake-2 (DOCBand Grad 9/19/08)

Jordan-4.5

> > > >

> > > > He started at 5 months and will have a total of 7

> > > weeks of therapy.

> > > This may sound

> > > > strange, but I'm not thrilled about my son's

> > > band coming off so

> > > soon. I love the progress

> > > > he's made but I was hoping for better aesthetic

> > > results at the end.

> > > That isn't my real

> > > > concern though. I am worried about his head reverting

> > > back after

> > > the band comes off

> > > > since so far he still sleeps on his back and

> > > doesn't yet roll or

> > > sit up and doesn't stay on his

> > > > tummy voluntarily. I was hoping he'd be in it a

> > > few months and

> > > would have better motor

> > > > skills once it came off (he is in PT for delay).

> > > >

> > > > I know most people can't wait for it to be off but

> > > I don't mind the

> > > bad. He's happy in it,

> > > > and I don't care about stares (he had serious

> > > health issues so

> > > getting banded didn't give

> > > > me a moments bit of concern, it felt great to be able

> > > to *do*

> > > something for him even if it

> > > > wasn't about one of the bigger problems). I was

> > > able to stop

> > > worrying about his head on

> > > > the mattress, changing table, playing on the play gym,

> > > riding in

> > > the car seat and stroller. I

> > > > didn't have to reposition at night or keep a

> > > noggin nest under his

> > > head or strain my back

> > > > with a baby carrier all day anymore. At six months

> > > babies skull's

> > > are still malleable so I

> > > > feel like when it comes off I have to go back to head

> > > patrol duty.

> > > I don't want to end up

> > > > with him needing another band.

> > > >

> > > >

> > > > Any advice from people who have finished banding with

> > > a young baby

> > > who isn't mobile

> > > > yet?

> > > >

> >

>

[Guest guest]

Hi Elinor,

Welcome to the group. I am a Mom of 4, with my youngest a 12 yr. old boy with an AS dx. I am not an expert on AS, though there are days I feel that way because of all the research and support groups I belong to, (LOL). What I have read and understand about AS in girls is that the symptoms of AS can present different, therefore girls are mis-diagnosed, for an example something such as depression. I would not say AS in girls is rare, but it is not diagnosed correctly. You will find a lot of helpful information here in this group and there are wonderful parents here who are willing to listen and help. Good luck and again welcome.

Peace,

Dawn

[Guest guest]

I think boys are diagnosed with it more...but girl have it to... we have a girl in our school with it and she is a senior now. I have worked with her for 4 years. Any questions...post away. And welcome...i will try to help if i can...from my experience.

jan

From: Elinor Mullin <elliemullin@...> Sent: Fri, February 26, 2010 11:57:45 PMSubject: ( ) Hi !

Hi All,

I am a newbie here. I am Elinor and have 5 children.

My youngest is 11 y.o. and a girl.

I came to your group for I know that I should go to the

experts to get some help ! : ) I have read where it is

rare for a girl to have AS . Is this true?

Thank you,

Elinor

[Guest guest]

Hi Dawn,

Thank you for your input.

I have posted a lengthy post about my daughter

and what I deal with on a daily basis.

Please if you can read and I appreciate any input .

Hugs,

Elinor

From: "azucarmama68@..." <azucarmama68@...> Sent: Sat, February 27, 2010 11:20:46 AMSubject: Re: ( ) Hi !

Hi Elinor,

Welcome to the group. I am a Mom of 4, with my youngest a 12 yr. old boy with an AS dx. I am not an expert on AS, though there are days I feel that way because of all the research and support groups I belong to, (LOL). What I have read and understand about AS in girls is that the symptoms of AS can present different, therefore girls are mis-diagnosed, for an example something such as depression. I would not say AS in girls is rare, but it is not diagnosed correctly. You will find a lot of helpful information here in this group and there are wonderful parents here who are willing to listen and help. Good luck and again welcome.

Peace,

Dawn

[Guest guest]

Hi Jan,

I knew that joining a support group would give me answers I needed.

Thank you so much for your response. I am sorry I could not respond back when I wanted to but, Maeci is always by my side! You don't know what a relief it is to me to know that her symptoms sound familiar. I have beat myself up for way too long , thinking I am the one with the problem. I have only made verbal request for testing at school. I will write a letter and send it certified to the Special Ed. Dept.. I am playing low key right now until I get Maeci's dx and then I will deal with the school accordingly. I plan to file a formal complaint against them. I am really peeved right now to say the least.

Maeci is in 6th grade and goes to Speech Therapy . She has a small palate and this created a lisp and tongue thrust. She is in braces w/expander. She has problems with self expression and formulating sentences. Modifications are: preferential seating, assignment notebook, extended time to complete Assignments/test, explain and repeat instructions. This is all I can get for her at the present. She did not pass the benchmark in math so, she is suppose to be getting extra help at school...Well, she does ... I pay for tutoring. She has missed the allotted # of days absent by the district, even with doctors excuses, she has to go to behavior counseling via an outside source.( which for the parents convenience is right there at school.) I pay for this as well. Go Figure ! I have gone the medical route with her having tonsils/adenoids removed due to sleep apnea. I have had testing

for diabetes/cortisol, kidney scan b/c of bed wetting and anything I could think of in between . I have had her tested for APD, eye issues, all negative. (even mono) I feel as though I have been in denial.

Are children with AS a genius at manipulating in order to get their way? Do you feel the symptoms worsen as they go through puberty? As far as sensory issues go, I have to presuade her to let me trim her nails and shave her. I give up most of the time b/c it becomes too intense.

I know when I get Maeci's final dx I will have peace. I am going to grasp this as a wonderful gift that she has been blessed with ! God made us all perfect in his eyes!

Hugs,

Elinor

From: rushen janice <jrushen@...> Sent: Sat, February 27, 2010 2:34:35 PMSubject: Re: ( ) Hi !

Elinor....first of all write a letter to the school requesting she be tested...they can NOT deny you..it is your right to have your child test!!!!! Put it in writing...and there is a time limit...i have to look it up ...i think it might be 60 day from the time they receive the letter. I brought my letter to school along with a copy and had both of them stamped with the date it was recevied.

A lot of what you write sounds like Aspergers. Now, as far as the school telling you they she can not be different at home than at school is a line of BS...if you know what i mean. My son is nice in school...and another person at home. None of his teachers could believe (they did) that he would throw and break things.

Have you had you daughter tested? Does she have a DX? Why does she have an IEP? Is she in regular classes, inclusion or special ed classes? Does she or can she get a Paraprofessional to be with her at school? Does she need one? What accommodations does she have in her IEP?

It sounds like she has a lot of anxiety/stress and sensory issues too! Does she have a stress ball? Does she get stressed in school? Can she take walks when she needs to? Does she know any breathing techniques?

What grade is she in? I have so many questions for you. But she has a lot of Asperger's signs...but I am not a psychiatrist. ..

Write more and tell me more...

Hang in there we are all there for you...

Jan

<font face="arial black" color="#bf00bf">Janice Rushen</font>

<font face="Arial Black" color="#bf00bf"></font> & nbsp;

<em><font face="Arial Black" color="#7f007f">"I will try to be open to all avenues of wisdom and hope"</font></em>

From: Elinor Mullin <elliemullin> Sent: Sat, February 27, 2010 12:23:48 PMSubject: Re: ( ) Hi !

Hi Jan,

Thank you so much. I know from what I have read that

it is rare for a girl to have it. I have been reading post and

have found my daughter in them. I will just make a list of

what she is about and get your opinions.

I know it is not suppose to be this hard to raise a child.

I have questioned myself to see if it is me that has a problem.

At school she is in speech and has an IEP.

She has high anxiety and is scared to break a rule at school.

She will not raise her hand and participate in discussion.

Low self esteem and confidence. She is the one that sits in class

and absorbs all that is said and done. She will not do her homework.

She is failing in math, has problems in science and cannot read a map.

She has missed school lots b/c she does not like school. I take her to the ped

just for the doctors excuses. She is unorganized. She has short term memory but,

her long term memory is incredible. Her grades are high/low. She is the opposite at home than she is at school. She has secrets. She wets the bed nightly. She takes a Barbies and breaks the legs off and squeezes them, walks around and hums . Her hands are calloused b/c of this. When no Barbie leg is available she squeezes her fingers. She is constantly scratching picking at her head. She pulls the top of her socks up over her feet b/c of the seam. She get physical with me and her sisters. God forbid I tell her "NO"! She gorges herself with food at home. I feel there is no "off" button. She is a world leading expert on and Girlicious ! She has a huge vocabulary and is as articulate as an adult. Her bodily hygiene is low. She does not like to be touched or hugged. She has friends but only a few close ones.

She manipulates and lies. She cannot make eye contact with others when speaking. She has melt downs. She has routine she follows in the a.m. and at night . She has a difficult time going to sleep at night and getting up in the a.m.

She has her own concept of time. I feel like I am sitting here complaining about my child.

I love her very much. She is my baby and to me is very gifted. I have been going down

a path of medical and psychological testing for 3 years. The school system is

creatively avoiding testing her. They are telling me that a child with AS is no different at school then they are at home. Am I wrong here. I will deal with them after I get the neuropsycologist evaluation. I am sorry so lengthy . Thank you for your time.

Elinor

From: rushen janice <jrushen (DOT) com> Sent: Sat, February 27, 2010 9:01:37 AMSubject: Re: ( ) Hi !

I think boys are diagnosed with it more...but girl have it to... we have a girl in our school with it and she is a senior now. I have worked with her for 4 years. Any questions... post away. And welcome...i will try to help if i can...from my experience.

jan

From: Elinor Mullin <elliemullin> Sent: Fri, February 26, 2010 11:57:45 PMSubject: ( ) Hi !

Hi All,

I am a newbie here. I am Elinor and have 5 children.

My youngest is 11 y.o. and a girl.

I came to your group for I know that I should go to the

experts to get some help ! : ) I have read where it is

rare for a girl to have AS . Is this true?

Thank you,

Elinor