Re: messy personal stuff/MODERATOR PLEASE READ - A note from the list owner

[Guest guest]

>

> I as a parent of an 8 year old do NOT have the experience that some

> of you with children that are in their early teens/twenties have,

> give me a break, share with me how you made it work, don't make me

> hit the same stumbling blocks you did when your child was my child's

> age.

>

Hi Nori.

I understand your concern. I tend to be a pretty direct person when

I " m on the internet these days and am very solution-oriented after

publishing and editing Disability Solutions for 10 years.

This is the list created after I went public with Andy's story

regarding being diagnosed with autism. Have you read that? Have you

looked in teh " files " portion of this website? There are some good

tools in there for visual strategies and other resources. You may need

to wade through it a bit as we do not vet the information.

One of the things I learned over the years is that for many, many

families whose kids have Down syndrome and...something else...there IS

nowhere to talk. To talk about the good, the bad, the ugly. We do seem

to have some unique stressors in our lives that creates a need to

discuss some " messy personal stuff " at times.

It's true, there are things posted at times that *I* wouldn't put out

there, and sometimes people make mistakes and send a public reply when

they meant to send a private one. That's life.

What I hear is that you are looking for some tools. Good fo ryou for

asking!

First, I'd go to the DS Autism Center web site and read some of hte

information there:

http://disabilitysolutions.org/dsaiic/index.htm

Then I would cruise through Disability Solutions. Why? Because EVERY

article written and published had a tie in to my life- and Andy has

DS, autism, Celiac Diesase,and does not speak. There are a number of

topics that may interest you.

Third, Tell US some " messy personal stuff " about your child. Tell us

what his strengths are, his challenges...what are you interested in

learning? Visual STrategies? Try " Visual STrategies for Improving

Communication " by Hodgdon. (usevisualstrategies.com) Behavior?

Try Pitonyqk's site for a starting point (dimagine.com) NO idea

how to tease out what your chld wants? Try Smulls work

(elpnetwork.com)

It really just depends on what you need to know!

What I DO know about this group is that if you ASK, you will hear answers.

*I* am guilty of recently posting " messy personal stuff. " I did it

because I care about this 1100+ member list and I know when I am

absent for long periods people wonder. I " m currently gonig through

something that was harder than Andy's having autism, which is watching

my mother - who was one of the first Early intevention teachers in our

state, devoted her career to people with vision imparements, and a

champion for my son - fight a losing battle with cancer. It relates to

Andy in that she is someone he connects with like no other. And it's

tearing my heart apart.

So. Guilty as charged, but not apologetic.

As the owner, I get overwhelmed by these chatty cathy's. I read from

the archives and post based on topics, usually. It works well. YOu

canf ind them at:

groups.yahoo.com

sign in and then find this group. Mark your membership as " no mail "

and then you can come and explore at your leisure and skip over the

stuff you don't want to read.

I am sorry we are frustrating you.

PLEASE feel free to ask questions. YOu can even write me directly 0

but don't write to yahoo! send your qeustions to

joan@....

Take care,

Joan

Andy's Mom. He's 19, has DS, autism, celiac disease and does nto sp eak.

's Mom: He's 22 and about to move to SEattle.

Project Director, CReating Soltuions

Editor Disability Solutions

Proud owner of the list