Re: Jayne Re: Brght Beacon

[Guest guest]

Ah . I was also in NORVA with the NAvy when Elie was little. HE was

one of the first kids at the group - then called Tidewater DS group. And

the only one with 'behaviors " . HE could not stay with the sitters when we

had meetings, he disrupted meetings if I kept him with me. And I hated

using my few respite hours so I could go to a meeting. So gradually we

stopped going to anything but picnics. Even then - the other kids would be

on the playground having a good time, and Elie would either be laying on the

ground screaming and flapping like a dying roach or sitting off by himself

flapping, dangling, watching his hand.

The good things were that Norfolk had a great pre=K special school and K-2

grade were awesome.

>

>

> Jayne,

>

> I'm in hampton roads and I didn't see that in the newsletter. Why didn't I

> meet you!? I though my kid was the only one who couldn't play. The only one.

> We just got the autism screening this month and nobody even suspected until

> 6 years ago. So before that I just wondered and wondered why my kid couldn't

> do what the other kids with DS were doing. The few kids I met at my son's

> school who were like him... well I didn't know they had too. Such

> a long journey to peace.

> http://thekitchenexperiments.blogspot.com/2010/07/long-journey-to-peace.html

>

> Were you with DSAHR when they used to do something for an orpahage in

> russia? I keep wondering what happened with that. I don't think they do it

> anymore.

>

> Sometimes I really really hate the navy.

>

>

> http://thekitchenexperiments.blogspot.com/

>

>

> >

> > Hi all -

> > Just wanted to stick this tidbit in here.

> > I still get the Down syndrome newsletter from Hampton Roads (even though

> we moved away 4 years ago...), DSAHR, there was a blip in there about a site

> that pairs parents of children with special needs with others in their

> area... It was started in 2008 by two pediatric residents.

> brightbeacon.org

> >

> > I have no affiliation with brightbeacon.org. I haven't even visited the

> site yet. Just passing on the info as another way for families to get more

> info.

> >

> > Hope all is well with my dear listmates.

> > Jayne

> >

>

>

>

--

Sara- different pathways lead to Nirvana.

[Guest guest]

MB - no wonder we are all sisters! If I say dying roach in most groups,

they think bug instead of kid. Well - sorry to all the newbies who haven't

had the advantage of my graphic descriptions. Been YEARS since Elie has

done that altho he still does freeze in place sometimes or sits and refuses

to move - usually on a chair, but could be the floor!!!

Even our local group for people with disabilities doesn't REALLY get it that

Elie has a great time going to their adult activities, mostly by sitting in

a corner and watching, while flapping his handkerchief. They want him to

'participate'. What they are working on getting is that HE IS!! Just not

their way.

>

>

>

>

> Hey Sara,

>

> Oh my goodness! I just realized how long it has been since I have heard you

> say the words " flapping like a dying roach " ! Unfortunately, that does happen

> to paint the picture perfectly. Only on this list, hahaha!

>

> Thanks for the chuckle, and, oh yes, we went through the same exact thing

> with Pete for both Challenger Baseball and Special Olympics. All those

> well-intended folks who said, " Your son will LOVE these activities.... "

>

> I had to stop attending our local DS group for several years from about the

> time Pete was age 4 or 5. I saw a little girl who had been in his early

> intervention class, also with DS, at that same age pour herself a drink,

> then walk around taking sips from the open cup. She was talking, and her mom

> was telling us about all the chores she did at home. I went out to my car

> and had a good long sob before I went home. I couldn't go back to any

> meetings, with or without Pete, until a few years ago. He did successfully

> attend a teen dance class (with an assistant) and that was wonderful. It's

> taken a long time to convince the parents in our local group that I am not

> exaggerating when I say Pete cannot participate in most of the activities

> that they sponsor.

>

> Some people also grumbled that " it must be nice " for us to have help for

> him. I had to shrug it off, as I didn't want any of the participants to be

> the recipient of one of Pete's impulsive whacks, kicks, or hair-pulls. Our

> helper for Pete was so good that she could essentially shadow him but steer

> him away from getting too close to anyone. She also could anticipate when he

> had had enough and needed to leave- while he was still doing well.

>

> Hope everyone is staying cool where you are...

>

> God bless us, Every One!

>

> Beth

> 20 y/o Pete's Mum

> Central (Columbus area) Ohio

>

>

> laying on the

> > ground screaming and flapping like a dying roach or sitting off by

> himself

> > flapping, dangling, watching his hand.

> >

> >

>

>

>

--

Sara- different pathways lead to Nirvana.

[Guest guest]

Beth,

Hi, this is Westerville, Ohio, Barb with Ethan age 5 DS/ASD..Are you back from

your mom's.. I hope it was a good visit.. We have to get together and share what

you know with Pete.  My cell is 570-3463.. You leave a message if I don't

answer.. Thanks!!

Love in Christ,

Barb Bianchetti

Subject: Jayne Re: Brght Beacon

To:

Date: Wednesday, July 28, 2010, 12:41 PM

 

Hey Sara,

Oh my goodness! I just realized how long it has been since I have heard you say

the words " flapping like a dying roach " ! Unfortunately, that does happen to

paint the picture perfectly. Only on this list, hahaha!

Thanks for the chuckle, and, oh yes, we went through the same exact thing with

Pete for both Challenger Baseball and Special Olympics. All those well-intended

folks who said, " Your son will LOVE these activities.... "

I had to stop attending our local DS group for several years from about the time

Pete was age 4 or 5. I saw a little girl who had been in his early intervention

class, also with DS, at that same age pour herself a drink, then walk around

taking sips from the open cup. She was talking, and her mom was telling us about

all the chores she did at home. I went out to my car and had a good long sob

before I went home. I couldn't go back to any meetings, with or without Pete,

until a few years ago. He did successfully attend a teen dance class (with an

assistant) and that was wonderful. It's taken a long time to convince the

parents in our local group that I am not exaggerating when I say Pete cannot

participate in most of the activities that they sponsor.

Some people also grumbled that " it must be nice " for us to have help for him. I

had to shrug it off, as I didn't want any of the participants to be the

recipient of one of Pete's impulsive whacks, kicks, or hair-pulls. Our helper

for Pete was so good that she could essentially shadow him but steer him away

from getting too close to anyone. She also could anticipate when he had had

enough and needed to leave- while he was still doing well.

Hope everyone is staying cool where you are...

God bless us, Every One!

Beth

20 y/o Pete's Mum

Central (Columbus area) Ohio

laying on the

> ground screaming and flapping like a dying roach or sitting off by himself

> flapping, dangling, watching his hand.

>

>