Liz

[Guest guest]

<<The Dr. is going to try Tori on Ritalin for her impulsivity. Anyone have

any words of

wisdom about this med? >>

Hi, Everyone....Liz...just like the other meds, it depends on the kid.

Ritalin made Gareth very irritable and Adderall made him down right schizo. He

can't take stimulants. Start low and go slow!!!

Take care, Everyone.

Margaret

[Guest guest]

Thank you Liz,

I am very glad that you have open the doors for the Down syndrome

support group in your community. Tori is such a cutie I could see her

becoming the " poster child " , what a Blessing. Following up reading

your post since when you have first joined here, it so good to read

what an advocate you have become not just for Tori but for many who

also follow in a similar path.

I hear you, definitely will have to open doors here with our

community if there is a need but I'll move on its just that one day

feeling compared to when was younger and having no one. I'll

make that move one of these years. It was better this year compared

to last year though. At least most of the speakers or people from

different agencies knew me, they made me feel welcome.

Yesterday I had noticed what maybe others would not mind hearing. At

least it left my mind brainstorming on what will help if by then it

will not add too much stress in my part as I do have so much going

on. I wanted to join our local Buddy Walk Oct. 7th, but on this day I

already have commitments which I'm unable to cancel at the time.

I do understand on what you meant with the parents in the autism

arena. This is exactly the feeling as an " outsider " but totally the

opposite here with me as many here have asked me to become part of

the leadership setting with the autism arena in our commmunity and I

keep turning it down and nominate someone else just to get out of it.

Even in Austin with the Texas Autism Council Committee. I have a

friend who is a council board member with an 18 y/o with the dual dx

of DS & AU which we could relate, just nice to have that connection.

She too, had mentioned the same thing as I did and always return to

the autism community as we're always welcome. The only one interested

requesting for the dual dx info has been the Certified Developmental

Ped., one of them is a Director of a large medical facility & part

board of a health university, teaching her medical staff with the

information I have provided.

This is now and I have caved in. I'm rounding up an adult support

group meeting, have calls coming in with the need here in our

community now I might have to find a larger place to meet which will

be held on the 30th of this month. Everyone just wants to follow me

wherever I'm at as told, professionals jumping in the band wagon when

they find out that I'm part of the picture. Nice but I have that

feeling once again that opposite part you have describe where I'm

unable to shake off where my son was born with DS and their kids did

not and some had kids who grew up as the " perfect baby " then things

went down hill for them. They do not care when I bring this up and

everyone has met , they just welcome him. Some people do not

even see the DS features until I bring it up, it is obvious though

but the autism characteristic is the first detected. Most remember

with what I have been through and have seen the dramatic

changes/progress to see where is at.

At least I have my foot in with the local DS support group and will

see what I can do, its just the parents with younger kids with DS who

have this attitude. Actually can not blame them too much as they are

still in their denial or grieving stages just searching for answers.

I really do not want to add on when I hear similar issues going on

unless its more tamed like on not overwhelming them. I have several

friends here now whom I have gotten to known with younger kids with

the dual dx and they too have told me the same thing and tried to

promote the information to them but they kept feeling as an outsider

even helping out going the extra mile so they return to the support

groups I'm at. I guess when the time is right, I'll still remain in

contact though with them.

Now I have the founders of our local FAS (Fetal Alcohol Syndrome)and

CD (celiac disease)support groups adding me to their contact list to

join them which is an honor, they have welcome me not as an outsider.

Sounds like alot, but its a necessity due to some personal issues

going with the FAS issues (not dx yet, under the process)with my

grandson whom everyone has graciously been supporting my oldest son

Roland in this arena when they find out who " mom or grandma " is. Need

to rule it out once evaluated or receive the services needed at any

early age. Thank God I have friends with our local agencies who are

all on standby to assist with services if diagnosed even with partial

FAS. Studing in this FAS arena, its so sad to know how many kids

might of grown up undetected and have gone down hill when they become

a teenager which I have been noticing of the history of people I

know.

The CD support group because the people have been graciously nice to

share for with dairy & egg free recipes which has recently

helped tremendously especially for the school district on educating

them and of course for myself. Such a learning curve here but at

least I'm not alone. I might plan a cooking get-together with several

friends in the same boat. I'm planning on investing on one of those

small freezers, also one those food savers to help with planning on

the meals here especially while is at school. I have already

reorganized my kitchen cabinets and it has made it easy when its time

to restock and cuts down expense wise. My family are so visual like I

am that this had helped when I had left last week for our State

Autism Conference trip. I was so proud of them.

Hope Tori is coming around these days and continue taking care of

yourself.

Irma,18,DS/ASD