DownSyn Forum

rlstewart · Posted: February 07 2010, 9:25 AM Post subject: Bizzare experience

I’m standing in line at Whole Foods hugging on Henry. A woman from the line next to me comes up, seeming very excited to talk to me.

She says something like, “they have new drugs for that.”

I look at her very confused

She then says, “he has downs, right.”

I reply with a yes, still confused. Henry does have a boogery nose, is she talking about cold medications for kids, but what in the world does that have to do with him having DS. Then I get all mad thinking there’s nothing wrong with Henry, what is this lady talking about.

She continues with something about blood pressure medication giving cognitive ability to our kids and a friend of hers with a 16 year old son, but the medication doesn’t seem to work as fast on him.

I say , “oh, is that right” and continue to look at her like she has purple horns growing out of her head.

She goes back to her own line saying Henry is really cute and has quite a little personality.

I smile, say, “thanks” and turn back to my children.

As she is leaving the store she calls, “ask your pediatrician about it, and good luck.”

_________________
Racheal
mom to Henry (01/06), Ramona (06/08), and Cora (2/10)

Don't underestimate my ability
Don't definate my character
Don't belittle my authority
It's time you recognize my quality

-Peter Tosh, I Am That I Am

DanielsMommy · Posted: February 07 2010, 9:44 AM Post subject:

She must know my best friends mother!! She told me the same thing. She said she saw it on the news that they had shots they could give them. Rolling Eyes

She is a kind woman who loves Daniel and always makes such a fuss over him. She is older, didn't finish high school...so I just smiled and told her I'd talk to my ped.

My girlfriend overhead her mother tell me this. Later she said "please don't be offended, you know my mother and she means no harm...she doesn't understand".

This was a few years ago and she continues to fuss over Daniel every time she sees him, and she truly loves him and always says how beautiful he is and what a blessing.

_________________

Lisa - Mommy to Elayna 10-1-02 and Daniel (Ds) 6-7-05
Always have hope....Without rain, there can be no rainbows.

lespring · Posted: February 07 2010, 10:26 AM Post subject:

ROfL

Here's what happens: A person has a friend, or even a friend of a friend, who has a child (or niece, nephew, cousin) with Down syndrome, who is using piracitam, or some other medication. Or, maybe they saw a documentary and there was a 2 minute clip about Down syndrome, OR...even better...they saw the old 20/20 episode about plastic surgery and piracitam,, etc. Whatever it is, they got a tiny piece of information they don't understand or know anything about, but they are suddenly an expert and feel the need to share their newly-found doctorate with everyone they meet!

_________________
~Leah~

Did you visit my mom's blog today?
http://www.gardenofeagan.blogspot.com

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Noah 23, Tyler 21, Angela 14 (DS)

Grady's Mommy · Posted: February 07 2010, 10:46 AM Post subject:

Do they have drugs for idiots yet?

_________________
~Kathy
Grady (DS 5/26/04)
Hailey 9/20/06
Expecting #3 8/1/10

lespring · Posted: February 07 2010, 10:50 AM Post subject:

It's for situations like these that I have "scripts" floating around in my head. Things that I'd like to respond with if I ever run into the situation again. I like what Grady's mom said, and would probably use it. Something like, "Thanks for letting me know. I wonder if there is a medication available for you?"

_________________
~Leah~

Did you visit my mom's blog today?
http://www.gardenofeagan.blogspot.com

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Noah 23, Tyler 21, Angela 14 (DS)

Annieo · Posted: February 07 2010, 11:25 AM Post subject:

Aren't people weird? A woman at church tried to sell me some stuff that would supposedly change John's appearance so he didn't look so much like he had DS. And when he was on chemo the loonies came out of the woodwork trying to tell me about their alternative cures for cancer. I finally said to one woman, "So, we should abandon the treatment that has a documented cure rate of 85% for some herbs that a friend of your mom's who's a nurse recommended because she had a patient who used them and was cured?"

_________________

"There's a release in knowing the truth no matter how anguishing it is. You come finally to the irreducible thing, and there's nothing left to do but pick it up and hold it. Then, at least, you can enter the severe mercy of acceptance." Sue Monk Kidd

"Never doubt that a small group of thoughtful people can make a difference, in fact it is the only thing that ever has." Margaret Meade

Ann, married to Tim, mom to Sally, Mark, Jane, John (12/02, DS), Paul and Alice

www.caringbridge.org/visit/johnbremer

Tigger · Posted: February 07 2010, 7:22 PM Post subject:

LOL That woman probably went home convinced that she has 'changed your lives with her advice'. I guess we need a loony component in society to keep things interesting.

_________________
Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

burnsun · Posted: February 07 2010, 7:34 PM Post subject:

There was soething the other day abot curing / improving the mr coponent of Fragile X and it was a blood pressure medicine....... they thought their next study would be on severl different types of mr caused by variety of factors

_________________
Jane
mom to
Colin Miguel (11/19/00) DS
Devon Richard(4/13/01) DS & Autism
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03)
Eliza Marisol (5/15/04) DS
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy
Jordan Alexander(3/17/2007)
Emerson James (1/08/2009) 33 week preemie

wife to the best & greatest guy Eric

http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

ME's mom · Posted: February 07 2010, 11:31 PM Post subject:

Well, wasn't that a fun exchange. lol When stuff like this happens I so wish a group of us were together, so that we could just circle the person and say, "Tell us all you are thinking about this!" Consider this your circle of friends doing that. Seriously, people need to wake up!!

Ibby · Posted: February 08 2010, 3:46 PM Post subject:

I get so tired of the Freak Factor out there!! I would have wanted to respond like Leah...."Are they telling you your condition can be treated or is this a permanent thing for you as well?"

Grrr.....

Ibby

_________________
Ibby
Wife to Tim- 22 years. Mother to Maggie,21; Bridget,19; Kevin,17; Sean,15; Daniel,12; Catherine,11; Robert,8; Emily,7; Maria,5; Hope, 4, AJ (Ds) June 14, 2006

http://www.onetruemedia.com/shared?p=26012b09b29bd00fe629cb&skin_id=0&utm_source=otm&utm_medium=text_url

lgmtseawa · Posted: May 24 2010, 11:03 AM Post subject:

I know you all are talking about things that don't actually exist or are really peripheral, or things that people thing will "cure" DS... in other words, people talking about stuff they really don't know anything about and that isn't really helpful.
But do keep in mind that there is *real* research being done, among other places at CU Denver by Dr. Alberto Costa, on the effects of actual drugs for memory; this research is currently (afaik) still being done on the mouse model of DS, but I think they were also looking to start human trials (starting with older individuals, not little kids)... so some day there actually WILL (fingers crossed) be a drug that HAS been tested and DOES help with certain memory issues... and naive folks will hear about it and run up to you with the same silly "there's a drug to help that" statement, but hopefully then it will be true!
-C

_________________
Carolyn B-G
mom to Kyle (6 1/2 yrs , T21) and Brent (12 yrs)

TheBradyBunch · Posted: May 24 2010, 1:27 PM Post subject:

I don't think she meant to offend you. I try to look at people intentions. In her mind she was helping you help your son possibly achieve his maximum potential. I wouldn't think of her as an idiot...there is research going on, people hear bits and pieces of it...people have friends with kids who have DS...their friends talk to them (as we all talk to our friends who don't have kids with DS). I'm sure when the changing minds foundation started with their protocol they were questioned, people probably accused them of trying to "fix what isn't broken" and probably accused them of being ignorant or idiots. If someone told me about something they knew could improve Noah's cognitive ability I would actually ask my ped...even if the info came from a stranger, or a person who didn't even finish high school (which actually has no basis on a persons intelligence). Just sayin...

_________________
Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10)

lespring · Posted: May 24 2010, 2:59 PM Post subject:

I don't know. I think it's really rude of total strangers to come up and say stuff like that. I mean, if you went up to someone who was obviously blind, would you say something like, "You know, they have guide dogs for that!" Or someone with grey hair, "They have hair color to cover that!"

I'm not sure what gives people feeling they have the right to give their opinions to total strangers about their lives. I cannot imagine bine so rude.

I'd turn right back around and ask, "What? Does something need fixing with my child? Is there something wrong that I'm missing?"

_________________
~Leah~

Did you visit my mom's blog today?
http://www.gardenofeagan.blogspot.com

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Noah 23, Tyler 21, Angela 14 (DS)

mom2marty3 · Posted: May 24 2010, 5:29 PM Post subject:

"... security?!" (lol, in my head, this is what i would have responded with).

when marty was first diagnosed, a best friend of mine said "pray he has mosaic, that's the kind you want." i wouldn't mind mosaic ds, but i was a little weirded out by her statement, especially when i told her he had T21 afterwards. another weird thing she did was send me information on treatments they can do for people with ds, like certain vitamins or natural supplements that improve their disposition. i've never told her that it bothered me when she did those things. i know she means well and she is just trying to help.

one the other hand, i don't know if i'd be as obliging to someone coming up to me out of the blue and saying those things.

_________________
wife to martin II

mom to marty III (8/6/09, T21)

"I praise you because I am fearfully and wonderfully made." (Psalm 139:14)

dect · Posted: May 25 2010, 6:44 AM Post subject:

Tigger wrote:

LOL That woman probably went home convinced that she has 'changed your lives with her advice'. I guess we need a loony component in society to keep things interesting.

Now that is an absolute truth about society. I don't say things anymore I just give them a 'look' Razz

_________________
Deryck
Dad to Xena 2 Aug 97, Lucas 28 Jun 99, Persephone 12 Jan 2004 (DS & AVSD repaired, artificial mitral valve)

Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind - Theodore Geisel (Dr Seuss)

http://www.picklesnet.co.uk

thatfield · Posted: May 25 2010, 7:03 AM Post subject:

we adopted Chloe, and were looking for a long time for a child with Ds so I just say " We ordered her this way".
You should see the look on peoples face. Priceless , I love it.

_________________
teresa,
mom to chelsey 6-9-84 collin 2-17-95, Caty 2-14-98, clay 8-3-99, chloe ds 1-21-03, caycie 9-28-04, Caden 4-9-07, mammy to Mason 11-30-06, new grandbaby due 8-27-10

maziebaby · Posted: May 25 2010, 8:36 PM Post subject:

Kathy, you took the word right out of my mouth!!! I always say Mazie's biggest obstacle is going to be peoples ignorance

_________________
Lisa Wife to Glenn Mom to Johnathan 24 Allison 21 Chad 15 Greta 14 Sarah 12 Jennifer 9 and Mazie 6 (DS/ vsd repair 8/03)