Another question from Jessika

[Renee']

I agree with Tammy
I know Lauren doesn't notice right now and she is 9. She doesn't even know what Down Syndrome means. Her sister loves her and is too young to notice that people stare. I have to say this though, when I see a child or person with Down Syndrome I look at them for a while. My mom pointed that out to me because I was upset that a person was staring. Some people stare because Lauren is beautiful and high functioning. Just Sunday we were at the Outback, my husband and 3 daughters, and I had a lady in the bathroom tell Lauren how beautiful she was. Then when we were leaving I stayed to pay the check and my husband walked out with the 3 girls. The family across from us looked at me and said "You have a beautiful family"
The point is some will stare at amazement, some will stare at their beauty and love and some will stare out of pure disgust. The latter of those I don't see to often.

I was eager to meet families when I was pregnant. I found out when I was 22 weeks. I wont lie it was difficult at first. I read everything I could. I asked lots of questions and I missed out on just enjoying the fact I was pregnant. Later it eased up and when Lauren was born I was ready to meet the world.

[steffaroni]

Hey jessika...

BTW very nice to meet ya. I am Steff mom to 10 yr. old Olivia and we reign from Los Angeles CA. One of the few here...me n jelanis ma Anyhow u r going to maybe laugh at my response cause well its very honest maybe too honest but here goes. Our story...

Olivia was born at a toity beverly hills hospital that shall remain nameless because I am not a fan of theirs in the least bit and tell all who will listen round here when they say they are going to have baby there. k had Olivia in an hr and a half. Tiny thing had to get outta me cause she didn't seem to get real big in there a mere 6lbs at full term and I swear her first and only cry at the hospital sounded just like a kitten. (mirrored the dream I had prior to her birth whereby I dreamed I had a litter of kittens lmao) I notice the dr.'s kept coming over to me looking at my nose... I thought they liked it lol but alas they were most likely saying that child that just came out of her did NOT just get born with a teeny nose like that. Now my brother was there and being a pediatric nurse knew right away when he overheard the 5 or so dr.'s in the room talking. Funny thing was I thought wow what a gr8 hospital look at all the dr.'s taking care of my new little girl.. Well to make a long story longer I will end the hospital part saying that the best part of my total of 29 hour stay(I had to get out of that place) was the candy striper who told me a story bout the kids she knew with ds as she was a part of the special olympics. She told me lotsa nice stuff.So I go home n literally go outside every night for the first 3 weeks or so n cry my eyes out. I still have a handmade doll an 8 year old girl across the street made me when she found out bout Olivia and saw me out crying on my porch every night after I got my son who is 14 months older asleep.So finally after reading waaaaaaaaaaay too many books and getting faaaaaaaaarrrrr to ahead of myself. I decided to answer a call from this cheery lady sent to talk to me from our ds subgroup..Well #1 the lady was so darned cheery I wanted to literally hang up the phone immediately. But she convinced me to meet her and I did. Now maybe my experience wasn't like most but her son made me even more fearful. He was about 5 and extremely delayed. I did not know that all kids with ds are soo much different in their own ways so it really only delved me further into depression. But when Liv was about 4 months old I decided to go to our group. WOW whatta relief. The ppl were so nice and it wasn't like the psych meeting I was expecting it was an informal get together to share resources and ideas and to present new topics.. There I learned about a gr8 center-based early intervention program and really got into my girl as she was developing a gr8 personality. Now the stares LOL to Susan I had a similar experience with Olivia but it was because the child was the chubbiest baby ever not because of ds as I had though it was cause she had 9 rolls on her arms and 5=6 on her chubby ole legs and the chubbiest cheeks u ever saw and smiled at all who would look at her. Not just a smile a eye sparkly smile that is too contagious to ignore.Once she learned to wave hi at about 8 months I had her wave to anyone who was staring at her and they would come up to us and love her to death. I truly believe in the short 10 years she has lived her very social nature has changed a number of minds about ds. Maybe she just took the fear of the unknown out of them with that wave and not too long after the wave and gruffly gravely voiced alto HI. Yes she notices stares when she is paying attention or not busy and usually does this funny stare right back at em. Her feelings do get hurt but we talk about it. Mostly though its still about her weight which I have been working on forever. BTW take a tip don't introduce any junk no matter how skinny your child leave the juice boxes out of the picture and remember when he gets to be a toddler.... remember this word of advice. I promise u u will thank me later on. k so will say if u can teach your child to interact with ppl usually either like ur friend said by loving em and hugging on em and making em giggle which is a HUGE HIT among strangers lol or by teaching em when they r tiny to be social creatures and say HI and wave whatever pple will react very well. I am amazed at how many wonderful ppl I have met thru Liv. Hey its a long road enjoy each moment and don't start looking into milestones and fretting over em u will lose ur mind. ( or not u sound much more stable than I lol)Good Luck and like Tammy said I say DITTO. LOL (((HUGS))) Steff

here's a montage of my girl from 5months to 3 yrs of age. hee hee

[damarasmom]

Well, Damara is the starring type. I think she makes people uncomfortable! But she is such a people watcher. It doesn't help that both myself and daddy are people watchers too!
Anyway..she will stare, then when she feels she has the persons attention...she will wave her hand and say "HI"! They usually smile and say hi back...if they don't she will just say it again, and again....until they either walk away or she gets a response!
As far as the siblings...Damara has 3 older , 2 sisters and 1 brother. 2 of them are married and 1 still single. They all simply LOVE and adore thier little sister...she is always being talked about and pictures are always being shared...they all call to talk with her on the phone and are very patient when she goes on and on in her Damara language, they don't get frustrated and they are all very PROUD of her!
We have raised some pretty wonderful kids, and they are all great adults!

[Jackie]

You know...this is interesting...because like many of you ...I was consumed with DS from day one. I was constantly on guard for others reactions...and ...know what...they just weren't there. And I gotta say for the first year of her life...Miss Em was a STRANGE looking baby. She had "failure to thrive...8.5 lbs at birth and 9.3 at six months...but growing in LENGTH...so she looked like a third world baby! The only pointed stares I remember were one day at a toy store...she was in an infant seat on the floor and she would root on her tongue...but when she did this...she would sometimes stick it WAY out...and back in really fast. She had the LONGEST little skinny tongue. Some little kids asked me..."why is she doing that?"...I was really taken a back...so without thinking said..."well I think she is pretending she is a frog...and is catching flies"....NOW...why in the world did those words come outta my mouth?...LOL. But it worked ..they just smiled and went away...didnt give anyone a 'lecture' on DS or anything.

But I don't think many have ever 'stared' at Emily...at least not in my presence...and she has never mentioned it. Now that she is older I have even quizzed her about this...asked her if she thinks having a disability makes people stare or look at her differently...and she assures me it doesn't.

So whether they do or don't ...I am quite content that she is comfortable in her skin...and has excellent self esteem.

Jessika...an interesting side note. My father in law has been blind since WW2 and we often have gone out to eat with him. Through the years...Emily has never had a wait person ask me or anyone else what SHE wants to order...they deal directly with EM (and I do mean NEVER)...but...they always ask the person nearest my FIL..."What does HE want?" Now he has a Ph.d in psychology...and is a brilliant man...although non sighted. He wears very very thick glasses which do him absolutely no good but bring many stares.

And...LOL...we have had the discussion here many times of how to approach another family who has a child with DS to let them know we walk in the same shoes. I am not sure we have ever come up with a good "pick up line" that doesnt indirectly say...I see you have a child who looks a lot like mine...LOL.

I think most of us are sensitive as to how our child appears to others...for me now...it is more now worrying about how others perceive her weight...(which IS getting better ) I do think people tend to 'stare'...not becaue they think our kids are ugly or gross...but because DS is becoming so openly talked about that they are probably interested and wondering what our "story' is.

Jackie

[Chris]

I just wrote a nice long post and accidentally deleted it!

Okay............first, Sarah doesn't give people the opportunity to stare since she greets them first. I don't think we have ever had a negative experience with strangers. I always think people are looking at her because she is so darn cute and charming! ;D Sarah is one of those lucky kids who assumes that everyone loves her (and they do!). She is a people magnet.

When Sarah was a baby, I used to go walk at the mall with another mom of a baby with Ds. She was sure everyone was staring at her son because he had Ds and I was sure people were looking at him because people love babies! I don't think most people even notice the Ds in babies. I had to try to convince a few strangers that Sarah had Ds.

Alyssa is Sarah's older sister by 11 years. They adore each other. Alyssa loves to show Sarah off especially at school functions. The kids treat Sarah like royalty.

I found out that Sarah possibly had Ds when I was 16 weeks pregnant and it was confirmed two weeks later. A couple of people gave me phone numbers to people they knew who had a child with Ds. I never got the nerve to call them because I was so afraid of what their child might not be doing. When Sarah was 4 1/2 months old, I finally went to a Ds support group meeting where the kids were present. Wow! I was so surprised and relieved to find the kids were just adorable kids! They were cute, lively, and into everything! In other words, they were just kids! I think you will be pleasantly surprised when you finally venture out to meet parents and kids with Ds. ;D As you know, many people are already crazy about your son but the parents of children with Ds will be completely gaga over him.

Chris

[jelanismom]

LOLOL Deane!!!! 8-)That WAS cool to see...and a bit bizarre!!!
I would have been stalking them too. ;D He was one of the clan!

Jennifer, your daughters are SO beautiful!

Jessika,
I had nothing but stares of adoration when Jelani was a baby, he was a micropreemie and extremely small even at 6 months old.
People would stop and stare at him the way people do for all cute little babies...his Ds wasn't the centerpoint of their curiosity.
As he's older now, people are still staring..kids in school, teenagers, older folk, etc...everyone comments how cute he is...
and I just soak up all the attention they give him and I'm beaming with pride that yes!this is my cute son!

Now on the other hand, once in a blue moon I'll see a stranger staring at him with a look on their face of "hmm what's wrong with him?" Not often though. More often, I have people in public that relate to him...total strangers just walking up to us and mentioning that they have a cousin or a sister with Down syndrome... and we start talking together like we know eachother already!
See, Jelani's Ds started to become more apparent once he got older, out of the baby stage...and I've only had positive feedback from others, I appreciate that they stare in wonder....I do too! I wonder how I became so blessed to be in the company of an Angel that I call my son, who btw...has Ds and beat the odds when he was born weighing 1 pound 6 oz!!!!
I had to share that! ;D
Luv your questions Jessika, and luv U too!

[mommygwen]

Greg (age 15) does not seem to notice people staring. He often stares, I guess it takes him longer to analyze people/situations. I really worry about it when I let him go to the men's room. I usually try to make sure it empty, or I take him with me to the ladies room.

I am not to shy about talking to people and will greet people who stare. They often want to talk about a family member or friend who has a child with disabilities and the great fun they had with church, ball game or recreation program.

I love to people watch and sometimes find myself looking long at a family with a child with disabilities. Then I figure I must greet them and explain that my son wore AFOs (Ankle foot orthotics), used that type of stroller or some type of connection.

[Jackie]

I think it is interesting too...that for years Emily has come home when she has been in contact with someone new with a disability and she will usually tell me..."They have down syndrome" or..."they have a disability that I don't know what it is...but not down syndrome"...( this is how she says it...LOL).

Jackie

[Kristin]

Clarice (age 9) doesn't really seem to notice the staring either. I view it as people are just curious. Clarice has a younger sister. They are great friends and playmates. They argue just like sisters. They are in the same daycare, but have their own friends. Clarice's sister (age 5) earlier said that Clarice wasn't as smart as her, which we replied was actually true, but we also pointed out all of the neat characteristics of her sister. Out adaptive riding program lets both girls ride in the same class for a small donation for her sister. We've pointed out that having a sister with DS actually expands her friends as she has and will continue to develop friends that are siblings of the other kids with disabilities. Clarice's sister waits with her until she gets on her bus. It just so happens that the special department at sister's school gathers at the same location. They know both girls even though Clarice doesn't attend school there. Just more friends!

[Cbean]

Someone once told me "Emily is happy being Emily." I think that totally summed it up for me. Also what Tammy said!

We got stared at and still do. It's horrible. We get stopped almost everywhere we go. People even at times have the gaul to tell us what a beautiful girl we have! Can you imagine??? Emily is absolutely gorgeous by the way. I think I forgot to tell you that! LOL! Watch out - people will stare at Noah. They do that to babies. Because people like babies. They're cute. Don't instantly believe that they're staring at his DS! Unless it's hanging out! HA! I've never had a negative remark made to us...it's actually funny. Emily is like the pied piper or something! You'll see.