Re: ds/autism info please?

March 8, 2001

Judy,

My son wasn't diagnosed with ASD until he was 9. I don't think it is ever

too late to udnerstand what is going on with your child and try to change

things. For me, personally, I read much more about autism these days than

DS. Most of the same types of interventions used with kids with autism are

used with kids with DS/autism. There are many areas to look at: How well can

she communicate? Does she have a communication system in place if she cannot

speak her thoughts? Does she have alot sensory issues? If so, have you

worked with an OT to try to put a sensory integration program in place. Does

she have many problem behaviors that make it difficult for you to take her

places or for her to be at school? If so, does everyone on board understand

why she may be having those difficulties and is there a plan in place that is

helping alleviate those. Medication may help. There are many medications

that have helped the children on this list but from what I hear, it is really

on a try and see basis...no child is the same. Joan posted a good website a

few weeks ago on ASD. It covers all the basis and would be a great place to

start: Go to: www.autism-society.org/packages.html

Lauri

March 8, 2001

Ashton sounds like she's doing really well. What drugs is she currently on that

are helping her so much?

Keep up the good work!

Kathy

March 8, 2001

Thanks Lauri...I will check out that web page. Sara being blind adds another

mix into the pot but I had the blind school here for 2 days to assess her and

they think her " odd behavior " has nothing to do with the blindness...so we

are on the road of elimination.

Judy

March 8, 2001

Thanks, Leah....I'm hanging, but very frustrated with the system, I should

have trusted my instincts...My Sara used to talk and write her name and read

but all that is gone and she is further disappearing...at the rate we're

going won't be much left...most people thought I pushed her too much and

needed to leave her be...but not a chance...I'll be her pain in the butt till

the end...she can fool them but I know she's still in there.

Judy

March 8, 2001

In a message dated 3/8/01 9:53:29 AM Eastern Standard Time,

Judithrehling@... writes:

<< My Sara is 15 and just diag. with ds/autism (although I suspected it for

years) nice to have it confirmed. My question is now that we are all on the

same page what can we do different? Are educational stategies different than

that for just a downs child, are other interventions available or

appropriate, medications helpful?, neurologist?, specialists and what kind,

behavior interventions?.

My biggest concern is that over the last 5 years she has lost a lot of

skills

and we can't get her to join " our world " , doesn't really have any motivation

and could care less about the family or what is happening around her. Do we

just accept this new diag. as an explanation for her odd behavior or " come

at

it with all we got? " 15 is a little late to be getting into the game.

Judy >>

Hi Judy,

Well, I say better late than never, right!! I don't know if I have any

professional opinion to back my take on this, but I would guess that the same

techniques we use on kids who are younger would have some benefit. If it

were me, Heck, I'd still be willing to take a shot at it. For instance, at

my daughter's school, there are older kids in classrooms for autism and they

use the ABA method (applied behavioral anaylsis). There's also Floortime,

and sensory integration, PECS and the TEACCH program. We've done and and

are doing all of the above, except for TEACCH. If you go to the ds/aut

page, you'll find lots of information on these type of treatments. You

should read Joan's D/S issue on DS/ASD too. Also, there's plenty of info

right here. Lots of the kids on this list are on meds and can offer you

advice in that area as well. My daughter (Maddie, 7, DS/ASD) sounds much

like yours in that she prefers to be left alone in her own world. The

Floortime method really helped open her to our world, and now we're seeing

fabulous results from ABA.

I'm looking forward to hearing more about your daughter and your family.

Donna

March 8, 2001

In a message dated 3/8/01 11:07:22 AM Eastern Standard Time,

mashawnag@... writes:

<< getting him the strings, i found them hiding in his socks--one was hanging

out alittle, >>

Cracking me up!!!! LOL Wonder where he will hide them next? LOL The

possibilities are endless! LOL

Gail

March 8, 2001

In a message dated 3/8/01 9:53:12 AM Eastern Standard Time,

Judithrehling@... writes:

<< 15 is a little late to be getting into the game.

Judy >>

Judy,

It's never too late for anything in life. Look at the 80 year olds going to

college! I'm 47 and learn something new every day. With all you have done,

this is small potatoes! LOL

Gail

March 8, 2001

judy,

this is just my personal opinion, which you will find i hold nothing back

and state my beliefs full of passion....:-)my *baby* is almost ten years old

and i didnt get a diagnosis until this year,,,,,ashton is just now doing

things which i had given up on....i always have pushed for her to great

things, but was feeling in a rut and was coming to accept that she would

never write her name,verbally respond, have real friends, learn to read and

enjoy words, comprehend money and be able to shop on her own.... DON'T GIVE

UP!!!!!!! after a major drug change and major restructuring of our home and

class placement change, ashton is writing her name, she is doing basic math

with manipulatives and doing some reading.... but we have to take the

backdoor approach with her...if she thinks she is Working,

forgetit....everything has to be a game or be her idea...we are not even

able to say the " W " word(work) at home or school, she freaks out like a bee

is stuck in her pants....heehehe i am not trying to brag,(maybe a little)

but everyone of us on this list has felt like giving up and even

contemplated out of home placement for the moms, leave the kids and dh to

fend....lolo but i just want you to know your not alone and there is hope,

it just takes a long timeto get there...i am searching still every day for

straws to grasp at and new creative things to further push her to reach for

the sky....she is still a pain in the butt on most days, but i do believe

that it's genetic from her mother....lolol hang in there and please feel

your amongst friends for life.... welcome to you and sara.... tc leah

mom to ashton 9-ds-pdd-my angel with crooked wings

and cameron 5-full of energy and handsome as a prince

>From: Judithrehling@...

>Reply-To:

>To:

>Subject: ds/autism info please?

>Date: Thu, 8 Mar 2001 09:44:28 EST

>

>My Sara is 15 and just diag. with ds/autism (although I suspected it for

>years) nice to have it confirmed. My question is now that we are all on

>the

>same page what can we do different? Are educational stategies different

>than

>that for just a downs child, are other interventions available or

>appropriate, medications helpful?, neurologist?, specialists and what kind,

>behavior interventions?.

>My biggest concern is that over the last 5 years she has lost a lot of

>skills

>and we can't get her to join " our world " , doesn't really have any

>motivation

>and could care less about the family or what is happening around her. Do

>we

>just accept this new diag. as an explanation for her odd behavior or " come

>at

>it with all we got? " 15 is a little late to be getting into the game.

>Judy

>

March 8, 2001

kathy,

she is on seroquel...it's in the risperadol family but doesnt seem to cause

the weightgain as much.... but its not only the meds, don't get me wrong

they are great, but we restructured....i used to let her watch disney movies

all day if she wanted, i don't know what i was thinking, but she became

grossly addicted to them...couldn't go to walmart without her falling out in

the floor playing wet noodle over a dang disney movie...what a sight that

was to see... and metrying to carry her 80 lb butt outta there...lmao we

have schedules and we pretty much follow those.. i use pictures everywhere

and i make her responsible for her actions and give her chores and jobs to

earn her movies... i also have no time for myself anymore because we engage

from the minute she is off the bus until she falls asleep....but the work

has paid off...me and her teacher gang up on her and double the work for

her...she hides her homework folder under the bus seat...hehehe what a

turkey.... it has been hard on me as a mom because i am not organized, buti

have to be now and its a pain in the butt,,,,but seeing her shine and have

color in her life for the first time in a longtime isworth the