New to group

[Guest guest]

Welcome to all the newbies. I have not been on the list very long but have

found it a wonderful place to be!!!!!!!!!!!!

Blessings, W

in CT

homeschooling mom to AJ (12), (8), ^l^,

(just turned 5, Trisomy 18 mosaic aka syndrome) and Birgitta (age 3,

adoption finalized 2/1/05 !!, Trisomy 21 aka Down's Syndrome, Fetal Alcohol

Syndrome, Autism, SID )

[Guest guest]

I too am new to the group and this post sounds just like me, oh how

relieving to know that i am not alone.! My son is a 4 year old that

has DS, also diagnosed with Autism & Dyspraxia. We are having a very

difficult time with the down time after school and weekends, he just

cries (yells) and can't seem to function at all besides being

destructive.

>

> Happy Holidays to all. I am new to the group, and very happy I

found it.My

> son Dayton has Down Syndrome, and last year we found out he has

Autism as

> well. This diagnosis was very hard for us, but explained a lot!

Dayton

> is completely non verbal, and uses only a handful of signs. We have

> found that structure is his best friend. Can't wait for school to

start

> up again. I thought the weekends were hard, Christmas break is

> horrible! If anyone has some ideas for me about implementing

(locating

> and purchasing) some kind of a schedule board, I would love to hear

about

> it. I am not creative, so have not had any luck making one.

Dayton will

> be 8 in march. He has a older typical sister Danika who was 9 in

august.We

> live in Snohomish, just east of Seattle Washington.

>

> --

> ___________________________________________________

> Search for products and services at:

> http://search.mail.com

>

>

>

>

[Guest guest]

We've use a 3 x 6 white board that we bought at staples. It hangs on the wall

in our kitchen. Comes in useful for homework too. Nothing fancy, but a

schedule can go up quickly. We also have a small hand held white board too.

Quoting Kahler :

> Happy Holidays to all. I am new to the group, and very happy I found it.My

> son Dayton has Down Syndrome, and last year we found out he has Autism as

> well. This diagnosis was very hard for us, but explained a lot! Dayton

> is completely non verbal, and uses only a handful of signs. We have

> found that structure is his best friend. Can't wait for school to start

> up again. I thought the weekends were hard, Christmas break is

> horrible! If anyone has some ideas for me about implementing (locating

> and purchasing) some kind of a schedule board, I would love to hear about

> it. I am not creative, so have not had any luck making one. Dayton will

> be 8 in march. He has a older typical sister Danika who was 9 in august.We

> live in Snohomish, just east of Seattle Washington.

>

> --

> ___________________________________________________

> Search for products and services at:

> http://search.mail.com

>

>

>

>

[Guest guest]

I forgot about the stationaary/office supply stores. They also have

preprinted different signs and schedules under school supplys. Check out

Office MAx or Staples on line and see if they have something that you like.

Sara - Choose to make lemonade, not complain about the lemons.

>

>Reply-To:

>To:

>Subject: New to group

>Date: Tue, 26 Dec 2006 15:15:05 -0500

>

>Happy Holidays to all. I am new to the group, and very happy I found it.My

>son Dayton has Down Syndrome, and last year we found out he has Autism as

>well. This diagnosis was very hard for us, but explained a lot! Dayton

>is completely non verbal, and uses only a handful of signs. We have

>found that structure is his best friend. Can't wait for school to start

>up again. I thought the weekends were hard, Christmas break is

>horrible! If anyone has some ideas for me about implementing (locating

>and purchasing) some kind of a schedule board, I would love to hear about

>it. I am not creative, so have not had any luck making one. Dayton will

>be 8 in march. He has a older typical sister Danika who was 9 in august.We

>live in Snohomish, just east of Seattle Washington.

>

>--

>___________________________________________________

>Search for products and services at:

>http://search.mail.com

>

>

>

>

[Guest guest]

Hi ,

I probably live very close to you! I'm in Everett. My daughter Hannah is 10.

Hey, wait a minute didn't I briefly meet you at on's funeral?

It might be good for us to get together. I have Boardmaker (a program

frequently used to make picture schedules) on my computer and I am also working

on a

project for the Everett School District on making some interactive books (low

tech) to start a special needs library so kids can take books home.

You can e-mail me off list if you like. And hey, just another week til school

starts again!

a Black

[Guest guest]

Welcome aboard new members.

I wanted to post a website of handouts from various presenters at one

of the Texas State Autism Conference who were graciously nice to work

with my son and I in various ways either by attending their

workshops, via internet or in person for the past years when there

was nothing around in our community just yet during my desperate days.

I had to travel to search for answers, glad many professionals are

coming aboard to teach many professionals in different field of work

these days where many are not having to go through what I did.

Maybe you could pass this also with your son's teachers/medical

professionals, family, etc. with the handouts if you could relate

with what you are going through similar issues.

This is usually posted temporarily so lets see if anything helps and

print out what you can. If not I could burn a copy of the CD with the

same information given that was given.

If it had not been not being here on the DS/ASD list I never would of

known which route to take due to many reasons for my son, the options

of many posting is where it had helped to see what areas to choose

from, then did my homework in the areas I wanted to see would work

for my son with lots of trials and errors. All of this especially at

an older age, non-vocal, totally negative behave issues going on, not

toilet-trained at the time, periodic monthly fever/recurrent

infections and boy did I pray for answers.

It is always nice nowadays to analyze when an issue is going on these

days and thank goodness at his age of 18 y/o.

In my son's case its always analyzing his behavior by determining

which environmental variables are controlling the behavior, funtional

analysis.

On the site are too many to choose from, like

Reducing Problem Behaviors, presented by Gail Wayman, M.Ed.,BCBA on

9/08/06.

Autism 101 by Dr. , Sr.

An Intervention to Conducting Functional and Behavior Assessments in

Effective Behavior Intervention Plans.

Kelle Wood, M.Ed.,BCBA ABC Checklist

Batts, Individualized Teaching F.O.C.U.S. ing Our

Children's Unique Selves.

Life's a Roller Coaster Autism Spectrum Disorder Effecting Behavior

and Learning, Presenter Bird-West Wheeler, M.ED

Many here on the DS/ASD list have shared some wonderful information

based on what they do at home and I too am doing the same here at

home and out in the community.

Still go through some set backs like recently his blood work return

high on the Mold & dust mites, its just nice in a WAY when something

is going on and what to look for in our case. It is a relief than not

knowing anything what is going on compared to what I have or my son

for numerous of years when he was younger, especially once any

underlying medical issues are ruled out which are usually part of the

culprit in his case.

Under the Gluten/Casein Free Diet. Allergic to milk and eggs.

Gluten can cause digestive problems in my son's case who is sensitive

to it.

Ruled out CD, Candida, diabetes cut down on sugar, no artifical

sugar, artifical color, etc.

ABA, Sensory Integration, PECS, visual support, etc. huge fan of it

and what a Godsend.

We can not do this by ourselves and it nice when you're able to find

some very knowledgeable professionals concerning GI issues,SI,

functional analysis, etc. associated with autism. Being here on the

list knowing we are not alone and many can relate especially in our

case as our kids have the dual dx of DS & AU.

Here is wishing everyone a New Year with your child under the autism

spectrum that you will be relieved when you find some answers. Just

one day at a time.

I bragged about my son recently and will continue to do so as its has

been a non-stop roller-coaster ride when I came aboard this list with

what y'all have posted, it is a different tune these days still have

to deal with alot of issues but like I have mentioned it is a relief

in my case.

Sorry to read how everyone's holiday turned out but you do what you

have to.

http://autism.esc2.net/ConferenceT06Notes.asp

Irma,18,DS/ASD

[Guest guest]

This is incredible a offering to share what you have to .

I have been working with the Boardmaker with my son and recently these

days my new adventure of just learning on Creating One Switch Software

Books Using PowerPoint.

I also have made some Interactive Books for my son and my 3 y/o

grandson.

Have you had a chance to review the latest

Boardmaker @ Home - Win?

http://www.mayer-johnson.com/ProdDesc.aspx?SKU=F1MJ207

Irma,18,DS/ASD

>

> Hi ,

> I probably live very close to you! I'm in Everett. My daughter Hannah

is 10.

> Hey, wait a minute didn't I briefly meet you at on's funeral?

> It might be good for us to get together. I have Boardmaker (a program

> frequently used to make picture schedules) on my computer and I am

also working on a

> project for the Everett School District on making some interactive

books (low

> tech) to start a special needs library so kids can take books home.

> You can e-mail me off list if you like. And hey, just another week

til school

> starts again!

> a Black

>

[Guest guest]

Thanks for that link! It has a 30 day trial download for anyone else

that is interested in the product. I am downloading it now.

Re: New to group

Date: Wed, 27 Dec 2006 17:49:22 -0000

This is incredible a offering to share what you have to .

I have been working with the Boardmaker with my son and recently

these

days my new adventure of just learning on Creating One Switch

Software

Books Using PowerPoint.

I also have made some Interactive Books for my son and my 3 y/o

grandson.

Have you had a chance to review the latest

Boardmaker @ Home - Win?

http://www.mayer-johnson.com/ProdDesc.aspx?SKU=F1MJ207

Irma,18,DS/ASD

>

> Hi ,

> I probably live very close to you! I'm in Everett. My daughter

Hannah

is 10.

> Hey, wait a minute didn't I briefly meet you at on's funeral?

> It might be good for us to get together. I have Boardmaker (a

program

> frequently used to make picture schedules) on my computer and I am

also working on a

> project for the Everett School District on making some interactive

books (low

> tech) to start a special needs library so kids can take books home.

> You can e-mail me off list if you like. And hey, just another week

til school

> starts again!

> a Black

>

--

___________________________________________________

Search for products and services at:

http://search.mail.com

[Guest guest]

Hi a,Yes, we met at on's funeral. I got your email address from

Lori and sent you a message before christmas. Did you not receive it?I

will send it again.So glad I found you again! We need to get together!

Re: New to group

Date: Wed, 27 Dec 2006 01:51:04 EST

Hi ,

I probably live very close to you! I'm in Everett. My daughter Hannah

is 10.

Hey, wait a minute didn't I briefly meet you at on's funeral?

It might be good for us to get together. I have Boardmaker (a program

frequently used to make picture schedules) on my computer and I am

also working on a

project for the Everett School District on making some interactive

books (low

tech) to start a special needs library so kids can take books home.

You can e-mail me off list if you like. And hey, just another week

til school

starts again!

a Black

--

___________________________________________________

Search for products and services at:

http://search.mail.com

[Guest guest]

-Hello I really apprecate your story,I am new to this group

also and I would love to share with you some things that have helped

My son , it is not a cure but it really helped my son and I get

though some tuff moments.

My son loves schedules so I have learn to creat an adgenda of the

day it really helps him when I know it will be a tuff day for him All

I do is use Pictures from Google images cut and paste it to a document

and he has a Schedule for our outtings Like Hair cut, Grocery store ,

Dentist ect . So all I did was make a schedule with some of his

stable activites , example

Shower ( picture of the shower)

get dressed (picture of shirt and pants)

Breakfast (Picture) yogart

Brush teeth tooth paste and Brush

and Mom are going to the Grocery store ( car picture)

Lunch at Mcs ( hamberger)

Home ( house and video he would like to watch)

dinner ( NOt sure what I am haveing for dinner right now)

this schedule has saved me more times than you will ever know . Yes

sometimes it does not work but It helped get us out of the house..

THis way he was able to know what was happeing next.

WIth computers It made Life easer to make schedules I just save them

in a file and pull it out and change it to fit the changes in the

schedule. we have gone from a Clip board and Pencil adgenda pages to

his speech devise ( vantage ) that uses this simular methods of

communication .. Disability Solutions has great informationa on the

communication piece check out there web site

Michele, Parent and Mom to 18 Gig Harbor WA and I am still

looking for a great receipe for that lemmon aide

\-- In , " Kahler "

wrote:

>

> Happy Holidays to all. I am new to the group, and very happy I

found it.My

> son Dayton has Down Syndrome, and last year we found out he has

Autism as

> well. This diagnosis was very hard for us, but explained a lot! Dayton

> is completely non verbal, and uses only a handful of signs. We have

> found that structure is his best friend. Can't wait for school to start

> up again. I thought the weekends were hard, Christmas break is

> horrible! If anyone has some ideas for me about implementing (locating

> and purchasing) some kind of a schedule board, I would love to hear

about

> it. I am not creative, so have not had any luck making one. Dayton

will

> be 8 in march. He has a older typical sister Danika who was 9 in

august.We

> live in Snohomish, just east of Seattle Washington.

>

> --

> ___________________________________________________

> Search for products and services at:

> http://search.mail.com

>

>

>

>

[Guest guest]

welcome to the gorups!! this is the place to be for ds and autism!!

scedhules can be difficult, especially during the holidays withno school. The

best

place ive been to hlep me with schedule makeing is _www.dotolearn.com_

(http://www.dotolearn.com) its a great site, that and ofcurse the advacnes in

digital photography,lol. shawna

[Guest guest]

>

> Thanks for that link! It has a 30 day trial download for anyone

else that is interested in the product. I am downloading it

now.

Thank you for pointing this out. I too have taken advantage of it.

I also wanted to add if I could explain this right on another trial

that has been successful for my son, to have a pic of adding " Choice "

on the schedule especially while kids are not attending school, this

is of course varies what kind of day our kids are having too.

This could begin with " First & Then " . " First " work

activity/ " Then " a recreation activity from a choice board (examples

like TV,DVD,watch video,Radio,music,etc.).

will go to the book shelf and end up selecting a 2 " inch

notebook on front written Activity Book once its open it has a pic

of " Time for (with pic of a clock)______ " velcro to it, next page is

a 3x5 pic of an activity or choose something from site (colors,

puzzle, Mr. Potato,letters, counting, cutting, matching,sensory

activity,etc.)

http://www.buildingblox.net/taskideas.html

this is an example or whatever school activity that the teacher is

working on or whatever you would like your child to learn, this will

of course keep them busy while you are busy attending to something

else and not just seated in front of the TV, pic of activity inserted

in one of those sheet protectors and on and on, could begin with a

few in the mean time and build it from there. I am now including like

folding towels, things to do independently. I did have to prompt then

fade out once he master this drill in the beginning and has helped

the other family members to follow through with it.

I have different plastic shoe boxes with these type of activities,

once is done, he turns the page and continues with the next

activity and on and on, then at the very end of the notebook there is

a piece of velcro with the pic of finish. In my son's case I had to

use a timer or he would be stuck with every activity when he is in

one of those slow modes/processing slow/motor planning is off. Sorry

its hard for me to explain this but hope y'all ended up sort of

getting the picture of it.

Here is another site to add for writing like in my son's case his

name,

http://www.handwritingworksheets.com/index.htm

Irma,18,DS/ASD

[Guest guest]

Hi a

That's a really brilliant site. Thanks for posting the link. :-)

Pam

Re: Re: New to group

welcome to the gorups!! this is the place to be for ds and autism!!

scedhules can be difficult, especially during the holidays withno school. The

best

place ive been to hlep me with schedule makeing is _www.dotolearn.com_

(http://www.dotolearn.com) its a great site, that and ofcurse the advacnes in

digital photography,lol. shawna

[Guest guest]

In a message dated 2/6/2007 10:17:54 A.M. Eastern Standard Time,

karenmariegraff@... writes:

Hi to all. I am mom to 20 year old dtr. with DS, no autism dx. My daughter

Jenna does have celiac disease, dx about 7 years ago. I haven't noticed (yet)

anyone in this group witing about celiac. Maybe it's not so common in

autistic people? I would love to hear from others about common autistic

behaviors

that ds people have. Also, I wonder if it would change Jenna's life to be also

diagnosed with autism if she does have that as well. Any opinions on that

issue? PS it is really cold here in Minneapolis, but it's snowing too,

beautiful. Thank you for listening.

HI ,

Welcome to the group. There are several people on this site with Celiac (at

least their children have it). My son is 7 and, although he has not been

officially diagnosed with it, I have had him on the diet for about 6 months

now. It seems to have helped some of the autistic behaviors. He can focus a

bit better, he makes more eye contact, he's a little more " aware " of his

surroundings. The changes are subtle, but they're there.

There are a lot of people on this site with a lot of knowledge on this

subject (I'm not one of them), and they have helped me getting started. I'm

still learning all the time.

As far as the autism dx -- do you feel that she has it?? Having a diagnosis

is not going to change her life, but it could help you with some of the

services she may be eligible for. And you can zero in on some of her target

behaviors and address them as needed.

I think this group will be a tremendous help to you. Lot's of support and

good ideas and suggestions of what's worked for others. Chances are someone

here has had experience with whatever the current issues are. Enjoy and

welcome to the group.

Patty

[Guest guest]

hey karen!! nice to meet someone in the middle artic zone lol, im in north

central iowa, there are a good handful of those with celiac disease here on the

list, I thik if you look in the files or links you will find all kinds of

info. great to meet you!!! shawna, mom to nathan 15yrs with ds/autism, add/hd,

ocd, etc. and nicholas 14yrs w/ ocd, GAD, depression--mood disorder, possible

AIP

[Guest guest]

Thanks Patty. A couple behaviors of concern: Since " forever " she will hold up

a srtuffed animal (favorite was Elmo) and jiggle it around, talking away " at

it " . She seems to do this to unwind but she can definitely be redirected. And

she did used to line up toys as she was talking to them, but haven't seen her do

that for years now. On the flip side, she is extremely talkative, compulsive

in fact, which of course can be a problem in the friendship department. Has no

problem with eye contact with people she knows well; can stare us down with a

smile on her face forever. But avoids eye contact with most others, but this

seems like it could just be from shyness. Her strength has always been

expressive language skills; but for the past 10 years she has developed

intermittent stuttering, really frustrates her sometimes. Have others heard of

the stuffed animal thing in kids without autism? I did notice some similar

personality stuff to Trisha, Jenna loves Barney and

Disney, and would definitely have the same reaction to the needlework task. I

loved that story. I love how honest these kids are.

hamburgpatti@... wrote:

In a message dated 2/6/2007 10:17:54 A.M. Eastern Standard Time,

karenmariegraff@... writes:

Hi to all. I am mom to 20 year old dtr. with DS, no autism dx. My daughter

Jenna does have celiac disease, dx about 7 years ago. I haven't noticed (yet)

anyone in this group witing about celiac. Maybe it's not so common in

autistic people? I would love to hear from others about common autistic

behaviors

that ds people have. Also, I wonder if it would change Jenna's life to be also

diagnosed with autism if she does have that as well. Any opinions on that

issue? PS it is really cold here in Minneapolis, but it's snowing too,

beautiful. Thank you for listening.

HI ,

Welcome to the group. There are several people on this site with Celiac (at

least their children have it). My son is 7 and, although he has not been

officially diagnosed with it, I have had him on the diet for about 6 months

now. It seems to have helped some of the autistic behaviors. He can focus a

bit better, he makes more eye contact, he's a little more " aware " of his

surroundings. The changes are subtle, but they're there.

There are a lot of people on this site with a lot of knowledge on this

subject (I'm not one of them), and they have helped me getting started. I'm

still learning all the time.

As far as the autism dx -- do you feel that she has it?? Having a diagnosis

is not going to change her life, but it could help you with some of the

services she may be eligible for. And you can zero in on some of her target

behaviors and address them as needed.

I think this group will be a tremendous help to you. Lot's of support and

good ideas and suggestions of what's worked for others. Chances are someone

here has had experience with whatever the current issues are. Enjoy and

welcome to the group.

Patty

[Guest guest]

Hi Joy,

Welcome aboard. You have mentioned alot of what many of us have been

through. We do understand indeed.

I wanted to suggest something here. Request for the teacher or

whoever works with to come over to your house. One good thing

about what you had shared about the difference at school and home,

its nice knowing this because this does give that nice feeling how

well she will do with others and how she trust them.

Please do not feel bad when she is at home, home environment is

totally her comfort zone she is releasing of what she has been having

to do at school which is needed because this is great on her

accomplishments and knowing that she can do this.

Take advantage of this, this could be part of some Parent or In-Home

training, invite them or whoever would like to come over to help you

at home.

My son did something similar during his toilet training years and I

had the teacher come over since he did not want to work with other In-

Home trainers or mom but she was willing to help in this area as he

was doing wonderful. Boy, was he pretty complaint with her, no

problem. Since then they call her the " Toilet training queen " and it

only took her less than 30 minutes. After that he cooperated nicely

with me and followed the routine steps needed.

The schedule at home is not the same like school, its more

structured, the consistent is there and the help of having many

helping helps too.

Request for an In-home trainer to come over to your house in the

areas related on what is doing at school.

At 8 y/o, I see this as wonderful news. I know not at home, but one

day at a time for now. Does receive any OT/SI, on what you have

mentioned I could see having an OT who specialize with sensory

integration implement a sensory diet along with some ABA also

implemented.

Hope you receive alot of responses to choose from here on the list as

many can relate. I do see alot of potential here working in the areas

you have mentioned with .

Irma,18,DS/ASD

[Guest guest]

Welcome Joy!! we do know how you feel, glad you found the group,

sounds like yall have worked so hard, I love the response you have

received so far, this group is fantastic. just one other thought,

does she love to swing? if she seems to, maybe lots of swinging when

she is home? maybe this could organize some of the stuff going on

with her sensory problems.(we have one made of material, lycra is

good, inside that he can curl up in) anyway, just a thought, wish

you the best, let us know how it is going, Dawn, s mom who is

9yrs old

>

> Hi Everyone,

>

> I just thought I would begin by giving a little background

information about us. We are a family of five. My husband Dave,

Joy (me), (18), Becca (14), and (8) with DS/ASD. And

I can't forget about psycho cat, Mittens.

>

> has a very long medical history since birth that has

mostly been resolved. At age

> 2 1/2 she had a complete bowel shutdown. In the emergency room

the attending nurse placed the NG tube into her lungs instead of her

stomach and refused to remove it insisting that was panicking,

had oxygen saturation levels in the low 60's, and had high pitched

breath sounds because she had down syndrome. I still can't forgive

that woman (sorry). Anyway, then got pneumonia on top of the

bowel shutdown and a bacterial infection in her bloodstream. Even

though had not yet completely recovered from this serious

illness her former pediatrician recommended that we get her a flu

shot. Unknown to me this shot had thymerasol (too tired to look up

the spelling in case it isn't right) base in it. I didn't know

anything about thymerasol in those days. never recovered.

She completely lost all of her language and regressed terribly in

all areas of her development except for gross motor.

>

> Five years later I read the newsletter from disability solutions

about DS/ASD. It was if someone reached out, grabbed me by the

throat, an slapped me in the face. My daughter was jumping off the

pages at me. Thank god for that newsletter. When I approached our

pediatrician about the possibility of having autism he laughed

in my face. That was the last straw. We went to another

pediatrician, was referred to a child psychiatrist, and we got

the diagnosis of DS/ASD. It absolutely devastated me because I am a

paraprofessional (teachers aide) in our local school district and

know all to well just how debilitating that autism can be. You may

ask how I didn't pick up on the autism in my own daughter. Denial?

Maybe.

>

> has now had 1 1/2 years of intensive autism therapies. We

chose Dr. Greenspan's program because of all of 's sensory

deficits. In the last 1 1/2 she has gone from sitting and whole

body stiffening (stimming) and shaking dangley objects in front of

her eyes, and severely abusing herself, to speaking again, using

PECS to make sentences, playing with toys appropriately, seeking out

other children to play with, knowing her colors, shapes, some

letters, numbers 1-10, counting by rote 1-25, counting by 2's, 5's,

and 10's, etc. She even told me she loved me for the first time

several months ago.

>

> The down side to all of this is now that she has come out of her

autistic haze, where she would look right through you and you didn't

exist, she is giving me a run for my money behaviorally. She is a

perfect angel at school. She has a full day of school and comes

home to 20 hours a week of intensive autism therapies. Her day

doesn't end until about 7 pm and she has therapy on weekends too.

She gives the therapists a hard time sometimes, but when they leave

she turns into Mr. Hyde. She pulls down her pants and pees and

poops on the floor or in her pants when she has no accidents in

school. She is almost totally non-compliant. Taking her out in the

community is a nightmare. She pulls things off the shelves at

stores, throws things (one time hitting a gentleman in the head with

a candy bar), runs off, she has gotten away on several occasions

sending the whole family into a total panic because she has

absolutely no safety awareness, if we verbally reprimand her she

> yells and screams or hits herself.

>

> If anyone has any suggestions for me about discipline please

help!!! I'm at my wits end. On Friday we went to the eye doctor.

While her eyes were dilating we went for a walk and got a snack, she

tried to run off every step of the way and proceeded to throw fruit

at me while eating our snack. When we came back to the waiting room

she reached in her pants, pulled out a handful of poop, and handed

it to me in the doctor's waiting room. This was just after I had

taken her to the bathroom five minutes before. Today one of the

therapists where I work told me what a perfect angel had been

during a community outing to a restaurant. She told me how

used her communication device to indicate she had to go to the

bathroom and went. I cried all the way to pick her up from school.

I'm very glad she was good for them, but why does she behave so

differently at home and when I take her somewhere. I thought about

getting some respite for the first time.

>

> Sorry for the long post. Hopefully some of you will understand

that I really needed to vent. No one seems to understand.

>

> Thanks,

>

> Joy

>

>

> ---------------------------------

> Have a burning question? Go to Yahoo! Answers and get answers from

real people who know.

>

>

[Guest guest]

> Five years later I read the newsletter from disability solutions

> about DS/ASD. It was if someone reached out, grabbed me by the

> throat, an slapped me in the face. My daughter was jumping off the

> pages at me. Thank god for that newsletter. When I approached our

> pediatrician about the possibility of having autism he

> laughed in my face. That was the last straw. We went to another

> pediatrician, was referred to a child psychiatrist, and we

> got the diagnosis of DS/ASD. It absolutely devastated me because I

> am a paraprofessional (teachers aide) in our local school district

> and know all to well just how debilitating that autism can be. You

> may ask how I didn't pick up on the autism in my own daughter.

> Denial? Maybe.

>

> has now had 1 1/2 years of intensive autism therapies. We

> chose Dr. Greenspan's program because of all of 's sensory

> deficits. In the last 1 1/2 she has gone from sitting and whole

> body stiffening (stimming) and shaking dangley objects in front of

> her eyes, and severely abusing herself, to speaking again, using

> PECS to make sentences, playing with toys appropriately, seeking

> out other children to play with, knowing her colors, shapes, some

> letters, numbers 1-10, counting by rote 1-25, counting by 2's, 5's,

> and 10's, etc. She even told me she loved me for the first time

> several months ago.

>

> The down side to all of this is now that she has come out of her

> autistic haze, where she would look right through you and you

> didn't exist, she is giving me a run for my money behaviorally.

> She is a perfect angel at school. She has a full day of school and

> comes home to 20 hours a week of intensive autism therapies. Her

> day doesn't end until about 7 pm and she has therapy on weekends

> too. She gives the therapists a hard time sometimes, but when they

> leave she turns into Mr. Hyde. She pulls down her pants and pees

> and poops on the floor or in her pants when she has no accidents in

> school. She is almost totally non-compliant. Taking her out in

> the community is a nightmare. She pulls things off the shelves at

> stores, throws things (one time hitting a gentleman in the head

> with a candy bar), runs off, she has gotten away on several

> occasions sending the whole family into a total panic because she

> has absolutely no safety awareness, if we verbally reprimand her she

> yells and screams or hits herself.

>

> If anyone has any suggestions for me about discipline please

> help!!! I'm at my wits end. On Friday we went to the eye doctor.

> While her eyes were dilating we went for a walk and got a snack,

> she tried to run off every step of the way and proceeded to throw

> fruit at me while eating our snack. When we came back to the

> waiting room she reached in her pants, pulled out a handful of

> poop, and handed it to me in the doctor's waiting room. This was

> just after I had taken her to the bathroom five minutes before.

> Today one of the therapists where I work told me what a perfect

> angel had been during a community outing to a restaurant.

> She told me how used her communication device to indicate she

> had to go to the bathroom and went. I cried all the way to pick

> her up from school. I'm very glad she was good for them, but why

> does she behave so differently at home and when I take her

> somewhere. I thought about getting some respite for the first time.

>

One possibility is that she's 'holding it all in' until she's with

you. It might be such a strain to be good for school and therapies

that she loses it as soon as she can take a break. Many disabled kids

will try to minimise their differences when in school or therapies

but then have a rebound effect where all the stuff they were holding

in comes out.

I know if I was expected to deal with being in school and so many

therapies, I would be very overwhelmed (I don't have DS, but am

autistic). In my case I tended to act out in school, but if I had

felt it more important to please the teachers I'd probably have acted

very badly for my parents. (I have very strong principles and when

the teachers told me to do something that went against my principles -

like act normal when I knew I wasn't - I refused to obey.)

I understand that you want your daughter to learn as much as she can,

but it might be overloading her. At

http://ballastexistenz.autistics.org/?p=63 an autistic woman who uses

typing to communicate describes how she learns using an analogy of

Zometools. She shows a structure you can build and shows what happens

if you put the wrong length of rod in it. It doesn't fit, but it can

be forced into place. As you keep building, the structure gets more

unstable until it falls apart.

Here's another post by the same person,

http://ballastexistenz.autistics.org/?p=274 in which she describes

how she was in near-constant overload from trying to meet the

expectations placed on her and began self-injuring as a result.

A third post by this person describing her energy levels and

abilities using the analogy of a stork.

http://ballastexistenz.autistics.org/?p=190 She also links to an

analogy about colored sppoons she wrote.

I don't know if that describes what is happening with your daughter,

but if so, you may need to cut down on the therapies and focus only

on the most important stuff, such as communication. If gradually

lessening the pressure on her results in better behavior, then that

would indicate that it might be overload causing the behavior.

I hope this reply is helpful.

Ettina

[Guest guest]

Welcome ,

This is a great place to be! My son Jake is 8, DS-PDDnos. We are in PA.

Holly

new to group

Hi im new to the group i have a daughter 8 whith downs and autism she

has not been clinically diagnosed with autism but she has a lot more

traits. Any way my friend told me about this group and i thouht i would

give it a try. I live it metrowest mass and i was wodering if anyone

else was fom mass and could tell me what type ogf program your child is

in. i like were she is now but latly red flags have been poppong up and

im geting nervouse and think maybe we need a change.

any and all thouvht would be great

sarah Mom to marybridget 8 and two great big brothers nelson(14)and

brian(12)

[Guest guest]

Hi ,

Welcome aboard, glad you have joined us, looking forward reading about

bridget. When DS traits are just not there and other " instincts "

are occurring you have come to the right place as we can all relate.

Glad you are giving this group a try, not too much of change needed,

just adapting of understanding how our kiddos think and we follow how

to work around their groove.

Most of all your timing of your daughters age joining here, you will

read how many here have learn the areas needed when the " girl issues "

kicks in and you definitely will not be alone here.

Jump in anytime, do not hesitate we all learn from each other and

thensome.

Irma,18,DS/ASD

>

> Hi im new to the group i have a daughter 8 whith downs and autism she

> has not been clinically diagnosed with autism but she has a lot more

> traits. Any way my friend told me about this group and i thouht i would

> give it a try. I live it metrowest mass and i was wodering if anyone

> else was fom mass and could tell me what type ogf program your child is

> in. i like were she is now but latly red flags have been poppong up and

> im geting nervouse and think maybe we need a change.

> any and all thouvht would be great

> sarah Mom to marybridget 8 and two great big brothers nelson(14)and

> brian(12)

>

[Guest guest]

Hi ,

Welcome to the group. I live in Ct on the Ma line. My son has not been

formally diagnosed. You will find that this group is a wealth of information and

support.

Charlyne

Mom to Zeb 14 DS/OCD/ASD?

loonma wrote:

Hi im new to the group i have a daughter 8 whith downs and autism she

has not been clinically diagnosed with autism but she has a lot more

traits. Any way my friend told me about this group and i thouht i would

give it a try. I live it metrowest mass and i was wodering if anyone

else was fom mass and could tell me what type ogf program your child is

in. i like were she is now but latly red flags have been poppong up and

im geting nervouse and think maybe we need a change.

any and all thouvht would be great

sarah Mom to marybridget 8 and two great big brothers nelson(14)and

brian(12)

[Guest guest]

,

Mom to bridget,

Welcome to the group. I am from Alabama so I wouldn't know anything about what

programs they might have in Mass. BUT I do know this group is WONDERFUL!!! Look

forward to getting to know you.

,

Grannny to Matt and Will

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

Luggage? GPS? Comic books?

Check out fitting gifts for grads at Yahoo! Search.

[Guest guest]

Hi McKenna,

Welcome to the group. I have two children with special needs and neither of

them fits the " typical " scenarios on other support groups. So, I know how

you feel. It can be tough.

I will write more later but wanted to say welcome and you are not alone.

Blessings, W

homeschooling Mom to AJ (12), (9), ^l^, (5,

Trisomy 18 mosaic AKA 's syndrome) and Birgitta (age 4, adoption

finalized 2/1/05 !!, Trisomy 21 AKA Down's Syndrome, Fetal Alcohol Syndrome,

Autism, SID)

************************************** Get a sneak peek of the all-new AOL at

http://discover.aol.com/memed/aolcom30tour

[Guest guest]

McKenna...I love yours and your daughter's name. Welcome...you are in the right

place. You don't have to feel embarassed here and your Dara doesn't have to have

an ASD dx for you to be here. One thing I wonder about...do you see any evidence

of imaginary play? appropriate play with toys along with the stimming? If so she

may not be on the spectrum what with her sociability and eye contact. If she has

no imaginary play along with a lack of communication verbally I'd be more

inclined to worry about autism.

It doesn't matter tho...you are here and safe and we've all been where you are

and can feel for you.

My daughter also seems to have received every dang gift that 21st chromosome can

give....not leukemia thank God but that doesn't mean I spent any less time

worrying about it. is 18 and we're in Florida. There are lots of families

on board now with little ones your child's age so hopefully they will speak up.

Anyway...big welcome!

Sherry