Re: Wishes for a better world...

January 2, 2011

If not us, than who?

As I was reading a few of the comments about the older woman at the Christmas

Eve service, I was thinking about the lengths the congregations I served would

go to to include younger children. One congregation had small book bags with

child friendly Bibles (mostly, they were illustrated), crayons, coloring pages

appropriate to that days scripture (one of the Christian Ed Director's jobs was

to keep those book bags current)and they were hung on a coat tree in the Narthex

(this is the area that is like a foyer in a church building). Many families

would grab one or two bags as they went into the sanctuary. No one thought

anything of it--keeping the little ones busy and quiet during worship was a good

idea. I applaud those who try to do the same for their adult children--and to

heck with those who don't like it.

Those comments cut us to the quick because we aren't expecting them. It would

be a better world if there were prepared book bags for our kids, but there

aren't so we must do it ourselves. I liken going places with as

preparing for the Invasion of Normandy--all contingencies must be thought about.

That lady has no idea what lengths must be gone to--if she did, she would be

helping and not making snarky comments. We can't be quiet about what we have to

do. Perhaps there would be more understanding and compassion and it would be a

better world.

Marie

>

> I sure hope that 2011 brings increasing tolerance and understanding for our

family members with disabilities. It does seem like the bitterest of ironies

that we cannot bring our loved ones into a faith based setting with expectations

of total acceptance.

> There is so much work to be done, but together we can accomplish a lot...one

day at a time, step by step...

> I hope our shared journey will help to inform and empower each of us, and give

us the strength to carry on. Our beloved family members are worth our efforts.

> Ellen

> Ellen Garber Bronfeld

> egskb@...

>

January 2, 2011

Just came back from Disney World. We took my son Mitch (30 this month, with

Autism... with significant behavior issues and on the " lower end " of the

spectrum). While it was tough on plane, both ways, with all of our planning, and

all of the " stuff " he likes that we brought, he had a great time at times, in

between melt downs, his swearing at people and occasionally hitting people

passing by. Most people were very kind, supportive, and understanding. However,

there were two women we encountered that were beyond cruel, mean... had no

clue... One was at a restaurant at the Grand Floridian. I was bringing him back

to our table after a trip to the washroom. The women told him to shut up when he

was speaking very loud. We explained that he had ASD, and she told us then we

shouldn't take him to a nice restaurant so that he wouldn't " ruin it " for

others. I responded that but for the grace of G-d, it could be her child or

sibling. She then lectured me that there was no excuse and we shouldn't take him

in public unless he could act appropriately. Mitch was shaken... and so was I.

The second was at the United Air Lines Red Carpet Lounge in Orlando. At OHARE we

had no issues, but in Orlando, at the front desk to clerk told Mitch to move

away. Mitch wanted to stand by me. I explained. She said she didn't care. Mitch

banged on the counter. She advised us that if we couldn't control him, we would

have to leave. I explained again that he has Autism. She said that SHE had the

authority to have removed anybody for inappropriate behavior, and that it didn't

matter to her that he has Autism. I took her name and will follow up with

United. On the other hand, the gate attendant when we were leaving was super. It

turned out that she has a brother with Autism in CILA.

Rubin

The Law Offices of

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intellectual or developmental disabilities, & /or mental illness...

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From: teteme55 [mailto:teteme@...]

Sent: Sunday, January 02, 2011 02:09 PM

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Subject: Re: Wishes for a better world...