's response to Ellen's question...

[Guest guest]

Hi Ellen,

I hope I did this right. I just responded to you by hitting " respond

all " . If I did not do it right, please tell me what I need to do or

can you forward this reply to the group. Thanks,

I don't know what you did wrong, , perhaps Laurie will read this

and know, but your posting did not come to IPADDU it came to my

personal email. I was laughing as I was reading your suggestions

because so much of what you said is stuff I SHOULD know and SHOULD do

but did not!!!

We have gone to my sister's house for years for Thanksgiving. We

are usually there for several hours...Noah almost never really

enjoys being there...she has two dogs (Noah doesn't like dogs much)

and it is a smaller house with not much room to move around...That

said, no one ever pays much attention to him and your suggestion for

involving him in something specific...bringing out food, cleaning up,

would probably work well...I usually get distracted because I enjoy

visiting with my sisters...but, it would be a great demonstration to

everyone of his abilities. As for putting away the china...duh! I

never even thought about it...next year...I will implement the plan

and report back! By the way, my sister LOVES having Thanksgiving at

her house and I am VERY happy to let her have it

Thanks!

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From: laurawald@...

notify-dg-ipaddunite

Subject: RE: Digest Number 986

Date: Tue, 9 Dec 2008 20:46:06 -0600

For Ellen,

Well, after a 2 1/2 hour commute home, an hour and a half more than

usual, I finally get to sit down and respond to your post.

Thanks to you all for your very kind invitation to be a guest on

IPADDU.

I always start my day reading IPADDU and appreciate all the good

information and posts that I always share with the families that I

work with to as well as to " brace " them for what lies ahead for their

loved one(s) in the state of Illinois system.

Holidays can be hard, there is no getting around that.

Ellen, I have read your posts about Noah's behaviors for the last few

weeks, and know that you and your family have been struggling with

some challenging behaviors, some old ones, and sounds like some

behaviors may or may not have " morphed " into some new ones as the

weeks have gone by.

The simple answer is for your sister to put away the collectibles

before you arrive, but I'm sure that you probably suggested that to

her. I am also sure that you have been sharing your on going concerns

that you and your husband have been having with Noah for the last few

weeks.

Holidays certainly do present a challenge. Changes in routines, meals

and " unstructured " family time can be stressful. Having to make small

talk around the table for several hours, as well as all of the

preparations that lead up to the meal, can make for a long, long day.

A very long and usually unstructured weekend, in fact. Holiday dinner

times seem to be out of sync with the usual routines of breakfast,

lunch and dinner. Many foods are also different and are only served a

few times a year at best.

My guess is that you prepared your sister with a discussion of how

things are now and that behaviors may appear to go in cycles. I'm

also guessing that you probably came to her home with an Ipod,

headphones, or whatever activities might help to calm Noah down or

distract him during lulls or breaks before or after dinner was

served.

Was there an opportunity to give Noah a task, preparing something to

eat, setting the table, bringing food to the table, loading up the

dishwasher after dinner to make him a part of the preparations and

meet his sensory need for physical activity?

I am sure that you primed him for what the general order of the day

might look like, and that small conversation might be a part of the

social experience of the holiday. How does he usually do with that?

You did not indicate how long you were at your sister's house

altogether or when you arrived prior to the meal being served. Was

Noah required to sit with everyone or were there other places in her

house where he could " chill out " for awhile? Were their other guests

at the table besides the usual family members?

Many of our children and young adults have behaviors that come and

go. Now, don't shoot the messenger, but would it have been possible

for you to change the " venue " and shift the dinner to your house to

allow Noah to feel more comfortable in his own home. Is your sister's

house a usual comfortable place for him? You did mention that your

sister is usually very patient. Do you have to worry about jumping

and possibly beaking valuables whether it is Thanksgiving or any

other day? Do you think your sister could be flexible enough to bring

her dinner to your house so as to make the possibly of breaking

things less anxiety provoking for you and your husband, allowing

everyone to enjoy the meal in comfort for as long as the adults want

it to last. Would this work for your husband, too?

Not to say, I guess, that you should " host " each and every holiday

meal, but hopefully when the next holiday rolls around, Noah might be

in a better space.

What do others think and/or how have other handled being in the same

situations? Sometimes, families come and go to holiday dinners and

services for such a brief period of time in order to make it work for

their young adult that it seems to be equally as frustrating

a " solution " . Some find it easier to add an hour more or so with

family as each year goes by.

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Date: Tue, 9 Dec 2008 08:51:35 +0000

From: IPADDUnite

IPADDUnite

Subject: Digest Number 986

IPADDUnite

Messages In This Digest (24 Messages)

1a.

Re: Precious moments... From: G Mrozak

1b.

Re: Precious moments... From: ELLEN BRONFELD

2a.

Completely OT - Supporting our troops From: cporter8404

2b.

Re: Completely OT - Supporting our troops From: Cindi Swanson

2c.

Re: Completely OT - Supporting our troops From: ELLEN BRONFELD

3a.

Hearing on the closure of Howe From: ellenbronfeld

3b.

Re: Hearing on the closure of Howe From: Marie Grass Amenta

3c.

Re: Hearing on the closure of Howe From: Cindi Swanson

3d.

Re: Hearing on the closure of Howe From: ELLEN BRONFELD

3e.

Re: Hearing on the closure of Howe From: Marie Grass Amenta

3f.

Re: Hearing on the closure of Howe From: ELLEN BRONFELD

3g.

Re: Hearing on the closure of Howe From: Marie Grass Amenta

4.

My Testimony From: ellenbronfeld

5.

Save the date... From: ellenbronfeld

6a.

Re: An Article About Winning A Law Suit For Houseing For Disabled Pe

From:

6b.

Re: An Article About Winning A Law Suit For Houseing For Disabled Pe

From:

7a.

Re: Hello From:

7b.

Re: Hello From: ELLEN BRONFELD

8.

For : From: ellenbronfeld

9.

From: Marie Grass Amenta

10.

RTA...final budget hearing From: ellenbronfeld

11a.

Incident reports From: pacmomma2

11b.

Re: Incident reports From: ELLEN BRONFELD

11c.

Re: Incident reports From: pacmomma2

View All Topics | Create New Topic Messages

1a.

Re: Precious moments...

Posted by: " G Mrozak " mrsovaltine@... mrsovaltine

Mon Dec 8, 2008 6:19 am (PST)

When Neal was younger, I began to see that it was not my job to

shield the world from interactions with him that confused them or

stretched them or irritated them. I don't mean in all contexts, but

in some. My shorthand for this is " Everyone is supposed to get 15

minutes of fame. Therefore, everyone can put in 15 minutes of being

patient with Neal. "

Although I'd like to grease the wheels on his social interactions, to

help him improve his conversational skills, I need to let go and let

him learn from others.

-Gail

From: ellenbronfeld <egskb@...>

Subject: Precious moments...

IPADDUnite

Date: Sunday, December 7, 2008, 9:08 PM

Hi all:

I got an amusing email from one of our IPADDU lurkers. She has given

me permission to post it. I think it is important and sometimes even

instructional to share our stories of life in the community with our

children. Some of the stories are quite amusing, while some are

distressing. In sharing them we continue to create solidarity and a

self of community among ourselves...

Ellen

" My husband and I always say, " people need to see what our lives are

like 24/7.

Other people get small samples, while for us, its every moment,

unless their in school or day program.

Our son always makes a very loud, charging-- " invading the store "

moment, when

we first walk in somewhere. I always feel a little bad for the

general public, because, I know for the first few seconds of

his " entrance " , they think either terrorists or

something equally threatening has come upon them.....so I feel bad

for a second, and then I get a secret chuckle..... I used to be a

little embarrassed but after a few years, I think for my mental

health, very little if anything that he does will bother me.

He is what he is.

A month or so ago......

There was a moment, in the women's bathroom, when he totally

stressed me out!!

A woman went into stall #2, and our son wanted stall #2 as well. So

he proceeded to stand outside the stall and " let the autism within

him, rule the moment!!! " I tried to quiet him but she was taking her

time, so after a bit, i just gave up and let him yell....

I thought maybe this might hurry her along, he was becoming more

impatient... .

He was trying to hold himself together...he really was....then, he

starts trying to peer at her through the crack of the stall!!! Then

I totally stressed, turned him around and

we waited for a least 5 more minutes or so....eventually she came

out, I don't remember her being upset, so she probably didn't realize

what was happening, just that there was a crazy person in the women's

bathroom.

Someone else did try to help and direct him to the handicap stall but

he wanted stall #2. One time, I let him go in the men's by himself,

but he stayed in there for about 30 minutes and I kept having to ask

all these men, strangers, if the teenage boy in there, was alright?

They would all come out and say " yes, he's fine, just flapping his

arms and flushing the toilet " .

So after that episode he goes in the womens area with me.... "