Re: Local Support Groups

[Guest guest]

Here in SA,

The DS support group is only for the younger kiddos with DS but the

doors are always open whenever needed for anything else and do carry

the information of the dual dx and during any conference they invite

some speakers who work with kids with autism and they also include any

announcement on autism on their newsletter.

The SA ASA support group welcomes anyone and this has been the best

place for us parents with our kiddos with the dual dx, here in SA.

I was asked to become president or vice-president but I turned it down

reaizing it would require too much of my time especially after the

coupled of falls I had in the past months and realized that I should

not and had nominated others and they are doing a great job. They just

welcome whatever information I have to share with them.

We're just trying to keep this under one roof with the autism that has

interfere with any co-existing dx's. Many of the school district &

Agency's who have some type of resource/library room will carry the

info and also certain doctor's facilities. It has made some tremendous

impact for many other kids with the dual dx of DS & AU.

Not going to let any child or parent miss out like & I did.

Thank you for being proactive in your community and thensome. Its nice

to know we are not alone, not that I thought this, just nice to know

that many will open their doors for many to think out of the box.

Irma,17,DS/ASD

>

> Does anyone belong to a DS-Autism support group in their community?

I was thinking about what a need there is for those types of groups.

>

> Liz

>

>

[Guest guest]

Irma, Did you see the newletter from the National Down Syndrome

Condress? The issue that I have talks of the dual DX, and they want

to know stories we have to share. Lets write. Ya know Lifetime

movies wanted to know last week if someone were to play you in a

lifetime movie who would that be and I said Delta Burke. Who would

it be for you? Cyndi

>

> Here in SA,

> The DS support group is only for the younger kiddos with DS but

the

> doors are always open whenever needed for anything else and do

carry

> the information of the dual dx and during any conference they

invite

> some speakers who work with kids with autism and they also include

any

> announcement on autism on their newsletter.

> The SA ASA support group welcomes anyone and this has been the

best

> place for us parents with our kiddos with the dual dx, here in SA.

> I was asked to become president or vice-president but I turned it

down

> reaizing it would require too much of my time especially after the

> coupled of falls I had in the past months and realized that I

should

> not and had nominated others and they are doing a great job. They

just

> welcome whatever information I have to share with them.

> We're just trying to keep this under one roof with the autism that

has

> interfere with any co-existing dx's. Many of the school district &

> Agency's who have some type of resource/library room will carry

the

> info and also certain doctor's facilities. It has made some

tremendous

> impact for many other kids with the dual dx of DS & AU.

> Not going to let any child or parent miss out like & I did.

>

> Thank you for being proactive in your community and thensome. Its

nice

> to know we are not alone, not that I thought this, just nice to

know

> that many will open their doors for many to think out of the box.

>

> Irma,17,DS/ASD

>

>

> >

> > Does anyone belong to a DS-Autism support group in their

community?

> I was thinking about what a need there is for those types of

groups.

> >

> > Liz

> >

> >

[Guest guest]

HI Cyndi,

This I do not receive so have not read it. Is this through

subscription or am I able to access this online?

Sorry as I have strayed away from the DS community and I really

should stay updated with it too when possible. My life has revolved

around since the " A " word enter my world. I eat, sleep, breath as

this had opened many doors for us. If I had not run into the

Disability Solutions Newsletter who knows where I would of been now?

The DS community in the DFW and SA were of no help for me for

numerous of years. I was so close in losing it.

LOL, good one, got me here for who if asked " could play me? "

Hey, I like Delta Burke, good choice. In my case whom can I think of?

It would have to be a Latina, a Tex-Mex. Maybe Selma Hayak, she is

full Mexican, close enough, just not with an accent. The other person

could be but do not know her name who potrays wife's on

that TV show whom my dh has mentioned when I had asked his

suggestion.

Now, you left me wondering? Oh well, do keep me posted on your

mission with Lifetime. I love that station.

Irma,17,DS/ASD

>

> Irma, Did you see the newletter from the National Down Syndrome

> Condress? The issue that I have talks of the dual DX, and they want

> to know stories we have to share. Lets write. Ya know Lifetime

> movies wanted to know last week if someone were to play you in a

> lifetime movie who would that be and I said Delta Burke. Who would

> it be for you? Cyndi

[Guest guest]

The DSASA is a fantastic group and I think they make everyone feel

very welcome! They do have great programs!

I think it would be beneficial for parents to write a letter to their

DSA about the dual dx. At IMDSA we have letters to grandparents from

a grandma about MDS,and letters to parents, but we do not have an

autism letter. (something for us to work on!) I think just receiving

a general letter from a parent who is experiencing the same thing is

very helpful to new parents. Something with information about the

dual dx as well as some uplifting and encouraging words is very

helpful.

Kristy

> >

> > Does anyone belong to a DS-Autism support group in their

community?

> I was thinking about what a need there is for those types of groups.

> >

> > Liz

> >

> >

[Guest guest]

Irma, I received the newsletter in October but just got around to

reading it. I do not know if you could read it online. I will try to

find out. Oh you want a spicey vixon to play you. Well you will

certainly be sexy. My brother always said they wrote Delta Burke's

character on Designing women after me. You know how she said "

Excuse Me " and she was vain well so was I in my younger years. I

found the local Ds office in the early years had nothing for me but

they are trying to help people with both DS & autism. I too eat,

sleep, and breath autism. This newsletter has a great article about

DS and Autism.Well dinners ready talk to ya later. Cyndi

>

> HI Cyndi,

> This I do not receive so have not read it. Is this through

> subscription or am I able to access this online?

> Sorry as I have strayed away from the DS community and I really

> should stay updated with it too when possible. My life has

revolved

> around since the " A " word enter my world. I eat, sleep, breath as

> this had opened many doors for us. If I had not run into the

> Disability Solutions Newsletter who knows where I would of been

now?

> The DS community in the DFW and SA were of no help for me for

> numerous of years. I was so close in losing it.

>

> LOL, good one, got me here for who if asked " could play me? "

> Hey, I like Delta Burke, good choice. In my case whom can I think

of?

> It would have to be a Latina, a Tex-Mex. Maybe Selma Hayak, she is

> full Mexican, close enough, just not with an accent. The other

person

> could be but do not know her name who potrays wife's

on

> that TV show whom my dh has mentioned when I had asked his

> suggestion.

> Now, you left me wondering? Oh well, do keep me posted on your

> mission with Lifetime. I love that station.

>

> Irma,17,DS/ASD

>

>

>

>

> >

> > Irma, Did you see the newletter from the National Down Syndrome

> > Condress? The issue that I have talks of the dual DX, and they

want

> > to know stories we have to share. Lets write. Ya know Lifetime

> > movies wanted to know last week if someone were to play you in a

> > lifetime movie who would that be and I said Delta Burke. Who

would

> > it be for you? Cyndi

>

[Guest guest]

Hope 's doc figure's out what is going with him and he is

recovering nicely.

is finally doing well and was such a good sport yesterday

evening at an early Christmas family gathering. Sounds, lights, music,

people, even the candles he did not bother to blow them off and there

was one right next to him. He was such an angel and one of my brother-

in-law's BIL works with our major local grocery stores that he was

going to give us supplies of GFCF products to try out along with some

coupons for other healthy approach products. Just awesome, such news

for us as I know the GFCF diet is part of his lifestyle. Finally have

succeeded SOME to get to the root problem or at least understand. I

have noticed most of the non-food items he ends up eating gives him the

Opiate feeling. Its all steps and trials and errors but worth it when

staying on track.

Irma,17DS/ASD

>

> Irma, I will write in more details latter taking to Dr. He is

> sick to.Then basketball with sister. I put on the group a note to

> you. See Ya Cyndi

[Guest guest]

Adrienne,

We're new to the list, also parents of 3 in the STL area. I sent you a separate

email re: offline discussion and would love to hear from you. Thanks

Dennis

> >

> > Does anyone belong to a DS-Autism support group in their

> community? I was thinking about what a need there is for those types

> of groups.

> >

> > Liz

> >

> >

[Guest guest]

Dennis.. I got your email and am thrilled to know another family with

a child with the dual DX. I was just forwarded a parent's number via

email from a mutual friend in our area too.

There is strength in numbers I tell ya!

A.

> > >

> > > Does anyone belong to a DS-Autism support group in their

> > community? I was thinking about what a need there is for those

types

> > of groups.

> > >

> > > Liz

> > >

> > >

[Guest guest]

Irma, I know exactly how worn out you must have felt after having to

physically promting . Since got bit a school I have to

fight him in the mornings to put on his clothes. stiffens up and

takes his clothes back off.Then he throws himsself on the floor or

bed and won't get up. I have a morning pic schedule but he could

care less.He does his stop, drop, and flopp routine after we finally

get our clothes on and brush our teeth, just before going down the

stairs. I have an aid to help in the mornings but she does not know

what to do with him. I take him to the autism center and we are

trying a immediate reward system to see if this will work.By the

time I have done all this struggling with him to go to school and he

leaves I feel like collapsing.It takes physical and emotional

strength out of you completely. Only another mother like you and I

would know this kind of paid.You cannot describe it to an outsider

they just would not get it. When I hear parents talking about the

trival problems they have I think to my self. If you only knew, and

you should thank your lucky stars that's all you have to deal with.

I live in Louisville, Kentucky, and no I am not barefoot and thank

God I am not having a baby, and I do not talk like a hick. Ha Ha But

I might be a Redneck as Jeff Foxworthy would say. Take it easy and I

will mail you the info on DS/Autism as soon as I get a chance. Today

my daughters class and I went shopping for the Hurricane victim that

was autistic previously list on this groups website. The little boy

seemed very similar to my son and is the same age, 10 yrs old.I hope

he likes what we got him. See ya Cyndi

>

> Cyndi-

> No problem. I understand. Sounds like a lot of shuffling between

> Basketball practices and all, never fails our lives are never

boring.

> Where do you live? Sounds like a lot of snow or cold weather going

on

> everywhere. Oh those unexpected issues, hope all turned out well

with

> the running around for you and everyone is safe and sound.

> Finally figured out what was wrong with having some odd

> regressive behavior. He was coming down with something and sure

> enough the low-grade fever and the runs made him have lots of

> discomfort and zoned out which he has not experienced for quite

> awhile, especially because he had one entire good week.

> My fault, I had allowed the school to allow him to order from the

> school lunch for one entire weeek and sure enough this was the

> culprit, plus he had some community field trips (CBI trips)with

the

> school too. I had a busy week supporting one of my sisters and in

> between running around during that week that I did not have

's

> menu meal's made, just gave him money to buy his own food to

choose

> from and figure it would not hurt him but it did. Even I messed up

> with my medical intervention plans, so today just preparing the

meals

> for and I for all these unexpected on the go.

> This past Wed. evening my middle son Rick had a speech to give

with

> the GT class he attends and I had to be there and as soon as we

were

> ready to walk out the door to the van and during one of our

exciting

> days with some freezing rain with ice, as this rarely happens here

> but of all times. As I placed the key in the door ready to walk

out

> and lock the door, turned around and told " come on " ,

> starts to strip of his jacket, hat and of course pressing for time

> but I ended up battling with him as he threw himself to the floor

and

> I just grabbed him and physically prompted him out the door and

> locked it right away. Then he realize he had no choice he went

> towards the van and finally cooperated. Once we arrived at the

school

> parking lot he still did not want to wear his jacket so I just

placed

> it over him and once we entered the bldg. he sat down and actually

> was well behaved which I was shocked as I was expecting the worse

> still. One of my son's teacher approached me to tell me how well

Rick

> ('s bro)how she so admire him and the impressive work he has

> done and my heart was still beating and she was such a sweetheart

> that after she sat down I finally calm down and apologized that if

I

> seemed rude to forgive me as I was only getting settled in as

> was giving me a hard time and stressed out. Then thanked her for

> always being there for Rick. Its one of those sort of embarrasing

> moments but then have adjusted some, as its always wondering what

> kind of challenge of the day. Then went to the airport to pick

hubby

> up and once home my mouth just fell as ended up giving me a

> squeezeable hug, like comforting me or trying to tell me something

> because as soon I hugged him back and kissed him on his forehead,

it

> was hot, that I just can't believe I did not read through the

lines

> again. Then smelled something nasty and yep, straight to the

shower

> and I just gave him a huge hug with some Motrin and apologized. I

was

> trying to teach him to sign " hurt " towards his tummy and head. I

hope

> he learns this soon to show me whenever this ever happens again.

> Today, he is home again as I kept him home yesterday to monitor

him

> and he ended up getting up on his own to the restroom, Thank God!

> Some hope again.

> I was really going to throw in the towel and go for the meds if

> needed as I was thinking the worst as I had witnessed my step-dad

> when he had his first stages of Alheizmer as was really

> processing extrememly slow, similar to it.

> I'll hang in there as now I know why? Food intolerance was part of

> the culprit.

> Same here most of the older kids I know with Down syndrome they

are

> very high functioning doing lots. Love them, too. They always want

to

> help teach which is so sweet. Even they will ask me " Why

cant

> he talk? " " Why does he stim " ? Hear it from both ends, even those

with

> HF autism and they too would like to help .

> So true, " there is always worst issues than what we deal with " .

There

> is a story I just read to one of my sisters. How this stranger

walked

> and walked came upon a woman who kept complaining about the

> neighbor's goat in her garden and he told her to write it down.

The

> stranger kept walking and walking ran across another person

> complaining about something, same thing, write it down, etc. etc.

He

> had met with all of the people whom he had approached and told

them

> to hang their notes on the clothesline and then started to tell

the

> first person and the next one, etc. to go choose a note other than

> theirs and read it, then that person felt thankful for not having

to

> deal with that person's problem, etc. Thanks for the reminder.

>

> Why thank you, will do, on sending my snail mail. Appreciate it.

>

> Hope all is well at your end.

>

> Irma,17,DS/ASD

>

>

> >

> > Irma, Sorry it took so long to respond. We have had basketball

> > practices, Dr. appointments, etc. Today we were supposed to get

a

> > big 3-6 inch snow storm. What a joke. They closed school early,

so

> I

> > had to leave work about 30 minutes early because the bus

compound

> > said would be home at 1:30. Well I could have worked my

> regular

> > shift and been home before he was here at 2:45. No one cares how

> > hard it is to juggle a job, leaving for Dr. appointments, sick

days

> > for kids and now early weather dismissals.The bus compound said

he

> > will be home by 1:30. Huh. Yes if you send me your address I

will

> > mail you a copy. I tried to find it on the website no luck.I am

> like

> > you my back kills me. is 10 and when he does his famous

stop,

> > drop, and flopp well I have to pick him up to motivate him. Just

a

> > little butt lift. I feel said thinking about when he is 's

> age

> > because I know it gets harder. Ya know we as mothers can only do

so

> > much potty training, teaching bathing, eating, washing hands.

Yes

> > has the pics and schedules, and yes it helps but they still

> > have their days. The stubborn days. I always said I could not

> handle

> > a child with a disabilitie but we do it because we love our

> children

> > and we would not give them back if we could. It just does not

seem

> > fair that we have to have a double whammy with Ds/Autism. Most

of

> > the kids I know with Ds are very high functioning. How strange

is

> > this I was already friends with 2 people that after I had

had

> > children with Ds. One child was born 6 months and the other

child

> > was born 2 yrs. The other weird thing is none of us new ahead of

> > time. With all the modern technology and test. The test failed

to

> > let us know ahead of time.Irma hand in there there is always a

> worst

> > situation then ours. Send your address through my email.

> > Miltonburns@y... Have a great day you vixen. cyndi

>