Ds support group "of the elite"

[jelanismom]

OK just needed to let you all hear this one...

I made a phonecall to a center-based agency in Lomita not too far from our house, just to inquire about services and therapies they provide. A very nice lady gave me info and she just happened to mention a *new Ds support group* that they're starting...and that they also plan to have family outings and activities. Wow, I thought, how cool, I had always wanted to find a support group that I could attend and Jelani could socialize...Ok, here's the part that sounds bad...

The lady then says, "it's a group of, (she pauses) and then goes on to say, "I don't want to sound classist, but it's an uppercrust group, not middleclass, but we welcome everyone."

HUH??? WTH??? So she asks for my phone number and email address and says someone will be contacting me. She asks if I'll be home, and I say "yep, I'm a single SAHM and have all the time in the world to wait for your prestigious group to call me"...just kidding, I didn't say that, just the single parent part after she took my number. Anyway, I wonder to myself, will I be accepted? What crust am I and my son, middlecrust? What about the car I drive? Is it acceptable? Is there an innitiation into the support group? Like being in a sorority? Simply fr*kn amazing...I've heard it all now. Heh Steff, can you believe it?!?

Just had to run this one past you all.

Dawn

[steffaroni]

OMG Dawn... I say we go with our front teeth blackened out. scratch our butts and borrow the BIGGEST BEATER car we could find. lmao. You gotta be kidding me...never heard of any group calling themselves lmao uppercrust....crackin me up there Dawn.... hee hee (((HUGS))) Steff

pm me the name and number and I'll call n see what they tell me I will have a really snooty voice . your crackin me up where u find these things.. hee hee ((HUGS)) Steff

[adnegron]

Really, you would think that parents of children with DS would have realized by now that EVERY child is amazing and there are bigger things to worry about than flippin social status!!!!!

[damarasmom]

I love Steff's idea...you both need to show up looking really funky, kiddos dirty and take a video camera (hidden) what a great video to see!
Seriously, I would love to see what type of people attend such a group....What a bunch of snobs!

[Googsmom aka Jennifer]

{quote} OMG Dawn... I say we go with our front teeth blackened out. scratch our butts and borrow the BIGGEST BEATER car we could find.

OMGoodness ROTFLMAO!!!!!! Good one Steff Maybe you girls could roll up in a tractor....LOL... Kiddin'

I forgot... What kind of group would say something like that? Just rude and wrong. We're all in this boat together arn't we?!!!

[jelanismom]

thanks guys, I thought it was just a little peculiar, but I suppose they term it "designer jeans" instead of genes and I wonder if they even discuss Down syndrome during their "support meetings?" go figure!

[Pat]

I wonder, what special needs parent have you ever met that didn't become family right away? I've never thought, "You're below me or above me." I'd just try it out and ignore what she said.
Pat

[Jackie]

I say you guys go for it...take pics...and share it all with us...LOL...this is wayyyyyyyyy tooooo much! ;D

Jackie

[jelanismom]

Heh Steff, did you get this letter I sent you???

I wanted you guys to see what I received in my email lastnight.
"Bonnie" was the person who said "uppercrust", she's an OT at the center-based program I spoke to on the phone. She gave my email to the founder of the group who wrote this letter.

Anyway, just wanted to share, for anyone interested , just to follow-up and end this thread.lol Hope you haven't been bored to death reading. ;D

so pm me Steff, K?

Does anyone know what 'tide pooling is?' lol

Hi Dawn,

Bonnie, OT at ECF gave me your e-mail and suggested that you might want to
get involved with our Down Syndrome group here in the south bay.

We are a small but growing group (about 20 participants I e-mail) from Palos
Veredes, Redondo Beach, Manhattan Beach, Torrance, San Pedro, Long Beach and
other nearby cities. Most of us have children with DS ranging in age from
almost born to 14 years old. When I started this group my goal was to 1.
Meet and relate with other families that have children with Down Syndrom, 2.
Give my daughter (20 mo old with DS) and opportunity to grow up with other
children with DS. and 3. give my son (3 yrs old) an opportunity to relate
with other children that have sibling with DS.

We meet every 3rd Wed. of each month at Panera Bread (in Torrance) at 7pm to
socialize and hear speakers if we find them. Most of the time it is a
social hour or two where we talk about our wonderful children and exchange
information.

On the third weekend of each month (Sat or Sunday- depending on the month),
we get together with our families in a given spot. Last month we went tide
pooling (which was very cool) and this month we will be meeting for a
potluck at the beach.

I will be e-mailing the group on Friday with details on next week's
activities. This coming Wed., one of our very own (Jessica Bear) who is a
speech pathologist will be answering questions related to speech.

My family will be going on vacation from July 12th-19th, so I will not be
able to make it to the Wed. night meeting but I will be at the beach
activity on Sunday.

I really hope you and your family will come and join us for any and all our
events. It is very informal and if you know of other people that might
benefit from coming, invite them too.

If you have any questions, don't hesitate to e-mail me or call at
310-265-1809.

Looking forward to meeting you!

Ayala Socol

[momofrussell]

Actually, I am having a harder time with my thoughts on the agency worker. As an agency, it's not her job to thrust opinions of what "crust" a support group is.... that's a big no no if you ask me. She could very well be an opinionated soul who really has NO CLUE and she JUST gave you some preconceived notions based on what? Now you think this group is "upper crust" because she said that...

She could have easily given you the contact information and left it at that. Leave the opinions to YOU after you MEET people.... she may have ruined your thoughts of maybe forging good relationships because she threw all that into the mix.....

I'd be more inclined to call that agency back up and ask for a supervisor to talk about what happened. I'd get reamed if I did that and represented our DSA..... it's uncalled for....

I hope you take her words with a grain of salt and try the group.. you never know!!!!

A.

[jelanismom]

Thanks A!

I appreciate how you put it into perspective, it really is a shame that the OT said this. I'm inclined too, to call the person in charge, imagine how many families she says this to? I'm not calling, I'll maybe attend the informal meet and greet at the restaurant. Maybe the OT is jealous or something because she's not invited?!

[damarasmom]

The E-mail sent to you doesn't sound "snotty"...there was no reference to social status...I think I would go and check it out on my own! You never know, this could wind up being the best thing EVER!

[danikins]

You know, you might just find Jelani's future girlfriend there. It sounds very casual and a place for people to chat about the love of their lives.
Go and let us know how it went.
Kim

[Emilysmom]

Dawn,
The email by the founder of the group sounds very informative and inviting!! I'd check it out!! The reasons for starting the group sound like exactly the reason any parent would want to be a member of a Ds support group. (And the reason I love Uno Mas get togethers so much!!! Good for Emily and my other kids too!)

I have NO idea why the OT felt the need to even mention the whole "uppercrust" stuff. That's silly to me. But, the email didn't give any hints of that mind set. I'd go to the beach get together...........sounds like fun to me!

Susan

[Monique]

Hi Dawn, As a former Southern California gal, those cities she mentioned are very affluent areas. So maybe that is what that lady meant by upper crust. But i would totally go there. No harm in trying. Cuz even though those people may have way more money, we all got kids with DS so i'd say the playing field is even, dont you?

By the way "tide-pooling" is awesome. There is a beach area where there are little pools of water where starfish and sea anenomes and shell fish collect after the tide goes back out to sea so there are very shallow pools of water that are maybe ankle deep that you walk around and can see and collect these very beautiful sea creatures. Super fun. I had a "surfer dude" boyfriend (we are talking eons ago) that showed me this or this "city" girl would have never known what that was either.

Go just for that experience. You and your kids will love it. And bring a friend if that makes it more comfortable for you. Remember you dont need money to have class and having money don't give you class either.

Let us know how it goes.

Monique