Re: Anyone have suggestions?/Re: Green, etc.

[Guest guest]

Hi,

Glad I was one of those parents who attended her sessions, she is

incredible and I was fortunate to have an opportunity to speak to her,

so that made my day. My husband would not have survived the session as

he is still in the dark and I had to send him to listen to The Real

Rain Man breakout session. He does support ABA but this would not have

been for him as I just wanted my moment listening to her without any

interruptions.

The other sessions that I enjoyed attending was with Batts whom

I see posting here on the list of future workshops which is so sweet.

Anyone wanting to learn about the Toileting or Visual startegies she

had some very creative ideas.

I have someone in mind who should be one of the speakers out there and

hopefully many professionals would attend if she does not mind being

one of the speakers is Gail Wayman. She was incredible at one of the NT

FEAT Workshop on Growing Language Workshop, Using Sign to Facilitate

Verbal Language. Reason I mention this is due to the fact that many

school district's that my son has attended from the DFW area to SA

automically have denied sign lanuage because one of the excuses is " its

not universal " , after listening to Gail, its knowing how to teach the

child by some form of sign language and shaping it correctly to the

proper signing but at least its getting the child to make a connection

and begin wanting to decide if this is what they would prefer signing

or vocalizing, but it is making a connection.

Kelle Wood would be another one, unless Gail does not mind also

discussing the basics of ABA at another breakout session. I did have an

opportunity to hear and Carla and they too were incredible when

the discussion was Teaching an Older Child with ABA, something like

this. Great team out there.

Another great speaker is Chemin Schneider, O.T.R.. I love how

she interacts with the audience and then allows time for Q & A. Which I

know the other speaker have, but this one was motivating. Would make a

shy person speak up.

Who I would like to see back is Doyle Iland, B.A., she shared

great information Understanding ASD, Considerations in the Diagnosis of

ASD, Reacting to the Diagnosis, Supporting the Family of a person with

ASD, Sharing Information about people with ASD, etc.

Then there are 2 incredible people whom I've always made a point of

attending their sessions and that is listening to 2 incredible great

advocates besides just being professionals are Kathy Kelchner and Joane

Walvoord, Golden Ideas for Golden students. Wonderful strategies

defusing a meltdown in the classroom, out in the community, how to

carry communication tools in an appropriate manner. I was told if I

wanted my son to learn the PECS or any type of visual strategies that

expect him to carry a book full of pictures to exchange, not after

hearing Kathy and Joane, there are ways to use the visual communication

tools. Plus when using some form of communication/visual tool they

definitley do not regress it helps build and make the connection to

vocalize or at least show some expressive skill. Plus they had shown

some examples of how to make some Fun teaching acitivities or

vocational task acitivity.

I would like to attend some breakout session with something having to

do with demonstrations, like the Cooking stations on TV when it comes

to sharing recipes, will the same could be done for us people who are

in the GFCF journey. At least the basics.

Another breakout session- How to Implement Sensory-Motor Integration

Activities in the classroom and at home. I attended a wonderful

workshop when it was on The Community Collaboration Sensory and Motor

Integration-Pathway to Education by Pamela S. Buchanan, Jody L. Jensen

and the students of the University of Texas. Department of Kinesiology

and Health Education.

This workshop was about the importance of sensory information to our

everyday activities-writing, speaking, running, jumping, reading,

playing games, working.

Examples of how to make simple inexpensive play activities to make and

do for the sensory needs for the Vestibular, Auditory/Visual, Tactile,

Prioprioception, Bilateral/Cross Lateral, etc.

Break-out session on Social Stories.

Sex Education for Parents of Children with Autism (Mark Steege and

L. Peck) have been wonderful unless there are some whom others

are aware of. They do have a manual out

www.steegepublications.com

I know the Conference would continue with all the basics heard which

is needed so I leave with a pleading please please invite a couple of

people who will make a difference for the community of the dual dx of

a journey I and many other parents travel on. My son was born with DS

and he had attended a private school when it was just for Down's back

when he was about 5 months old until near 3 y/o here in SA. My dh had

to transfer out there to the DFW area, my son attended out at

The Child Study Ctr. but here I was still learning about the Down

syndrome and then it was time for public school at the age of 3 y/o

and he recieved the necessary services when he started attending out

with the Keller School district and his Special Ed teacher kept

telling me to get him checked with his Ped-doc, as he just would not

stay seated and she had to use the Rifton chair on him, time-out for

this and that for not cooperating. At home he ended up running

away/escaping and some neighbor came to my door carrying a child in

her arms with only wearing a diaper, yep my son. First week the new

kid in the block and then with the school issues things were already

happening which I thought was part of his disability. So I took him to

be evaluated figured maybe ADHD as the teacher suspected but the doc

said " no " . Then I decided to join the Tarrant DS support group and boy

did I not fit in as their kids were doing so much than mine and me not

able to sit still as I had to lift him up and hold him to stay still

and I was really getting depressed as I thought my parental skills were

bad and I still had continue attending the DS support group and I just

did not fit in.

Then it was time to move out and sell our house as my dh was being

transfer again but there was a little halt in between so we ended up

moving into a 3 bedroom apt. out in the Bedford area and the school he

attended with the HEB SD, boy another nightmare, time out for this that

again, just kept building, by this time I had already given up

attenfing the DS support group. I was given information to attend some

behavior classes which entailed for students with ADHD and nope just

did not fit in. We ended up moving again back here in SA in 1995, once

again same old story would not sit still, time out for this and that.

By now I was trapped and could not go anywhere because he would cause a

a scene. I ended up taking him to numerous medical professionals again

and no luck once again so during his elementary years it was very

frustrating because you name it I did listen to several docs when we

tried the medication route, Meg-vitamins, Melatonin or prescribed RX

for sleep aides, removal of tonsils and adenoids, you name it without

any luck and still not toilet trained and about to attend MS and many

professionals were unable to work with him, until it brings me to when

he was 12 y/o as I found a wonderful newsletter called The Disability

Solutions Newsletter of a mom who wrote about her son-

Please invite her.

http://disabilitysolutions.org/pdf/3-5-6.pdf

Joan Guthrie Medlen, R.D., L.D.

Managing Editor, Disabiilty Solutions

Project Director, Creating Solutions

Here are some random facts to help you out.

The incidence rate for the dual diagnosis is between

7% and 10% and the average age of diagnosis is around

age 14.

It is not an easy diagnosis to make as you must be

well-acquainted with typical development for children

with Down syndrome to be able to see when things are

going differently. That is a part of why it is

diagnosed so late.

The other person would be my son's physician who specilizes with the

dual dx out in Ohio. This has open the doors for my son to where he is

at with the medical and educational arena when he was finally dx with

autism and boy it has been some relief of HOPE!

This was the underlying missing piece.

Primary dx of autism, then the DS, what a journey as he is 17 y/o and

I would hate for anyone who is walking in my shoes to miss out like I

did.

Bonnie

E-mail Address:

Bonnie.@...

Thanks for reading this far, just had to share a little of my story as

the medical and educational professionals had missed out on knowing

how to work or treat my son. I finally return to my first DS conference

in 2005, figure things have changed. I still did not fit in but many of

the speakers who were there are people whom I have heard at the AU

conferences and we hit off so that paid off, Wheeler, Joan Green,

etc.. My world has been eating, sleeping just breathing autism.

At least I can say I wrote a suggestion sharing this with no regrets.

Thanks!

Irma

>

> She was at last year's conference. They put her in a room for 250,

and only

> 40 people showed up--20 of those were parents. Sadly teachers don't

seem to

> have a lot of interest in what science says, but it's a great

suggestion. I

> think she's on the list, and this year they will put her in a full day

> pre-conference workshop spot so more folks will see here.

>

>