Help me with comments, please...

[faithhope]

Hi Everyone! So here is the latest. It has begun already. We were at the park today, which I haven't really been getting out to much lately so maybe this is why I am first noticing this.
Noah was going down a slide, the cutie was so wild about being at the playground, anyways 2 little girls ( probably around 4 yrs. old.) were at the bottom of the slide and they were staring at Noah and the said to eachother " He looks funny". At first it hurt, it shocked me. I thought, can't believe at there young age they notice anything like that, ( it's not like he has a third eye. ) I know NOah has noticeable Ds to us adults but I didn't thing that such young kids would see any difference.
So I didn't say anything becuase 1st didn't know what to say, or what they would understand at there age anyways. 2nd I know they weren't being mean, ir was just honest, they weren't laughing or anything like that.
Then we went to Chik-Fil-A to that indoor playground, and 2 little boys ( 4 years also), looked at NOah and said "He looks different" and that was it, I asked them there names and then we all just played together and they were very good with Noah.
Another thing that happened was yesterday on my was into Sams Club with the kids, of course, a woman who works there was on the way out. She turned back as she passed me if I was chrisitan. I said that I was.Then she asked if she could speak to me away from the babies, because they understand, she said. She told me that she recently prayed for a woman whos baby had Down syndrome, now the baby is totally healed or 100% normal, don't remember exactly if she said both of those things or more. I was kind of stumped. I know she meant well, her heart I felt was in the right place. She was just ignorant. I told her that it is ok to pray for him. She began to pray for Jesus to heal Noah that he would be 100@ normal and everything working perfectly ( or something like that). I wanted to say that he is perfect, but I didn't. The only thing I said was you know Noah is amazing, he is so smart and just a wonderful blessing and she said she knows and she was very loving with both him and Noah.
So after all that I guess it is safe to say that this is a lesson for me, I need advice on how you handle these types of situations, one situation was a sweet but ignorant older woman, the other were children not trying to be mean.
Does anyone have similar or different stories to share?
Thanks you guys, ultimately I know that nobody will ever know what a blessing our kids are except us but I am beginning to understnadthe idea of advocating for our kids, on a daily basis. How to teach people of all types how to be around our kids.

[Googsmom aka Jennifer]

Oh Jess {{{{{{{{HUGS}}}}}}}}}} I have no advise really. I've only had a few incadents I remember. One day me and the girls were at the grocery and a little boy, maybe 4 or 5, said something. I did not hear it nor did Mary but all of a sudden the mom freeked out on him and started screaming at him in the line to never say things like that again. I felt bad for the boy but kept my mouth shut. When we were leaving the line I had Brooker say by-by to him and he did say by. The mom smiled.

Then we have the assistant at Mary's oral surgeon who would look at Brook w/ sort of a "glare". P me off!! I told Dr that she was not allowed to be our nurse anymore!! The next time we went there for the check up she "glared" again. This time I was not so nice. Told her, in private, that if she looked at my kid like that again it would not be pretty LOL. She avoids me at all cost now days.

We've all been there. It just takes a strong Momma, Daddy, family to stand up for what is right. You are that strong Momma!!! I think the little kids just don't understand. I always try to explain there is nothing wrong w/ Brooker, she just has very pretty eyes in a very sweet, nice, caring way. I had one little boy ask if she could talk. I said of corse ask her her name. He did and they were buddies the whole time we were at the bank.

With the older crowd, I will take my stance and usually they come around to see things my way. If they don't, they end up in a corner w/ one mean Momma explaining the situation up close and personal

Noah is a rockstar. I love him to peices. Mean people are few and far between. I just keep pluggin along and maybe I am a bit oblivious to some things or I chose to ignore the dorkyness of some. Our kids are rockstars and I for one will stick up for them and advocate untill the day I die.

Love ya Jess {{{{{{{{{{{{{{{{HUGS}}}}}}}}}}

[kg91207]

Wow, this is tough! Our support group leader has always told us, it's ok to be angry, but instead of lashing out, EDUCATE. There is nothing wrong with telling those kids, especially since they weren't being mean, that yes, he DOES look different! And then tell them why! It doesn't hurt for them to learn now! We are ALL different, in one way or another. Fortunately, we haven't had to deal with people saying these kinds of things yet. We had one person come up to us at the capitol building last year, who was a special ed teacher and recognized that Kaelyn had DS and she just wanted to know more about Kaelyn. The other night at the park we had a little girl come up and wanted to know Kaelyn's age, name, and then helped push her in the swing. But I know it will happen. That is why we are going to teach Kaelyn to punch people. hee hee. Not really. But I do want her to be able to educate people herself!!!

The one thing I HAVE had to deal with, and it just happened this morning, is listening to coworkers (we are all in cubes) use the "r" word in casual conversation. I am still learning to be assertive, so I have a hard time saying something to them in person. But, since I AM the developmental disability specialist, I get passive aggressive and send out flyers and info on not using the "r" word! ha! ;D

[faithhope]

Thank you guys so much you are both so sweet and funny LOL!!! I cried and laughed with the advice and stories. I didn't even really think I was hurt by it until I heard from my fellow mamas. well I felt hurt the first time with those little girls this morning but quickly got over it becuase I knwo they were just innocent. By the way can't believe that about the dental assistant, what a you know what!!!!!!!!!
I love the passive aggresive flyer passing out idea! That is great, that is how I would handle it!!!

[Pat]

Jess, I always use them as teaching moments.
One day a boy at the docs office made a face at John-John. His mom gave him a killer look. I told them things that are the same, things they can do ..he'll take a longer time to learn, things he can do... they'll take a long time to learn. Within minutes all four of the kids in there were checking each other out physically & trying to stretch like John-John. Of course they couldn't. In a few minutes I had my paper work & was ready to leave. One of the boys said, "Don't go, I want to play with you." ;D
Just an opportunity to make friends.
Pat

[kellied]

Hi there
I had a cashier at the corner store whisper to me that she has a neice who is "mongoloid". I quite surprised myself when I calmly said "we don't use that term anymore, we say a child/neice with Down Syndrome". She was all flustered and said sorry she's old school. She made friends with Sean and is very nice to me everytime I go in. She was so lucky it was me and not someone else. I think she got the hint and will never use that term again. I was so glad I didn't freeze like I usually do.
As for other kids I tell them that everyone is different, different hair, eyes, height, etc and that sean can do everything they do but just learns differently. They usually accept this and move on. I also have a video called "It's Ok To Be Different" that I gave to the school and had them show some classrooms when comments were made about Sean at school. Seemed to help.
I think I would have lambasted that nurse!!! Some people!! Actually I've heard that in some cultures they think our children are possessed. Sigh....

[char]

I don't have a story but my son does. He was away from his normal reserve post and all of the guys had to get new ID photos. Some guy said to another, "You need to get another picture. You look like a mongoloid idiot." My son nearly had a fight in the PX, and ended up telling the guy who outranked him that he'd clean up the pavement with him the next time he ever heard those words. I guess it took the guy a minute or two to realize what caused my boy to get so hostile, and then he could not apologize enough.

Other than that one incident, people have been very kind to my kids and my granddaughter. My son once said to me that he hoped that he and his wife could help others understand more about Down syndrome and to see what beautiful people Ds folks really are.

I have met a number of Ds folks since Abby was born. I don't hesitate to speak and engage folks if we are in a store. I met one woman who was having her 41st birthday. She was so happy and excited. We had a GREAT conversation. Her name is Susie, and her mom was as sweet as can be.

One thing that really impressed me was at Abby's Buddy Walk last October in Nashville. The girls' basketball team from Vanderbilt came over and lined up on both sides of the starting line. They high 5'd all of the kids. Abby grinned from ear to ear!

Char

[Chris]

Small children are easy. You just say, my little boy has Down syndrome and he loves to play with kids. No big deal. Chances are they will just play.

My daughter is eight and I have just noticed other kids really checking her out. Most of them ask why she talks funny. I just say she has Down syndrome and it is hard for her to talk but she understands everything you say. I do monitor her pretty closely when we are out in public at a kids play area.

When I was pregnant with Sarah, we knew she had Ds and a heart defect. A well meaning parent of my daughter's best friend really wanted to annoint me with oil and lay hands on me so she could heal Sarah of her Ds. I told her I would be happy for Sarah's heart to be healed but God created her with Ds. It isn't a disease it is simply the way she was made. I have many Christian friends but this was the only one who didn't understand that Ds is not curable.

Like others have said, I try not to let my overprotective momma part of me take over but try to educate instead. It would be easy to get angry and rip someone to pieces but it wouldn't help.

Hang in there. Most people are very kind.

Chris

[CC]

Honestly for me it really depends on the mood I may be in when things like this happen.

Some days Yes I am fine educating others but some days I am like give me a break.... I can get a bit sarcastic (sp?) some days I am like whatever and say nothing... and so on.

For me one of the worst was from a Nurse when I had to bring Chris into the ER for a heart rate of 280 and she asked me why I did not have the amino (sp?) prior to having him I was like are you kidding?? Even if I did I would have had him and she said to me REALLY.. YES REALLY I told her then asked for another nurse. Sorry I had no time or interest to educate her, KWIM

Jess you said "ultimately I know that nobody will ever know what a blessing our kids are except us" I could not AGREE more.

I will add that my guy is 17 and mostly we get nothing but SUPER GREAT reactions and lots of love from others to our Chris.

Maybe because Chris is older but Colin and I just mostly ignore ignorant people

HUGS

CC ~

[Jackie]

I always have a hard time when I see someone with a child who has DS in public....or an adult with their family. I soooooooooooo want to go up and say..."Oh I have a daughter with DS, too"...but somehow that seems wrong to just go strike up a conversation with a total stranger just because their child has DS. I wouldn't do that with the person standing next to them in line or at the next table in a restaurant. But since DS is somewhat of a 'bonding' situation for most of us it makes me want to meet them.

I remember going through a period in my life when I thought Em was acting so appropriate that maybe people weren't aware she even had DS...and I wonder if I would have been devastated if they mentioned it. However, I think with me I was usually the first to initiate conversation about her having it with strangers. I would say things like "despite her DS she can do this and that" breaking the ice and letting them know it was ok to ask some questions. When she was little and people would say "what is her name" or "how old is she" I would quickly go into my song and dance routine about her being in early childhood intervention or whatever. Who knows...some of these people might have just really wanted to know how old she was ...or what her name was...LOL.

I remember meeting Brandi who posts here at the Sprint store. She didn't have Kaelyn with her but she had a shirt saying something about DS on it. I waited about a half hour then got up my courage to go ask her about her shirt and she so happily told me she had a daughter with DS. It was the start of a nice friendship. I don't know if I would have ever had the courage to go up to her if it was just Kaelyn she had with her. I think this is why I mention DS if I can so that if people approach me they can talk about their situation or their niece or whatever.

I have been at this so long I sort of feel like we are one big fraternity of people dealing with this...but I am sure not everyone feels that way.

[kg91207]

Oh Jackie, I am so grateful I was wearing that shirt that day!!! what a blessing it has been to know you! I was not offended at all. My husband has found when he wears his shirt, he will have someone at least once say "I like your shirt". We figure they get it and probably because they have someone with DS in their lives! I had a guy at a scrapbook thing one day ask me why my kid would have more chromosomes than his, so I said "because she has DS" and he just said "oh" and walked away.

I've had people ask me when they hear Kaelyn is in therapies "what's wrong with her". Well, nothing! ha!

CC-I can't believe that nurse asked you that!!!! We had a nurse ask in the ER when Kaelyn had her febrile seizure if she had DS, and my husband asked her how she could tell, and she said she saw the space between her toes and the reason she knew that was becasue she is related to Maria Garcia-Joe's Mom (Jackie, I bet you know them). She was really nice tho!

[faithhope]

((((((((((((((((((((((HUGS 2 EVERYONE)))))))))))))))))))))))))) I find a piece of myself in each and everyone of your stories. I guess for me it is like CC says, it depends on my mood. By the way I think you handled that nurse perfectly, people like that are SO IGNORANT, no point in even trying to educate that kind of nerd. Jackie, I actually do that all the time. I actually have people going wild over Noah anytime we are out in public, it never fails" look at that gorgeous red hair!!!" look at his beautiful blue eyes, and so on, Noah has an amazing and special affect on people, they can't resist smiling when they see him. He is also so social, he is always waving to everyone like he is on parade, it is adorable. So I guess this is why the not so beautiful comments are an extra shock, it IS rare. Like I was saying though about Jackies comment, I also bring up the Ds myself when they say something about his hair, age, whatever, I use that to bring it up, I also think it gives people permission to talk about it, if they want. Usually they don't seem to really to be going in that direction.
Jackie I too always want to go up to people who are with someone with Ds. Sometimes I do and that person is always overjoyed to meet me and Noah. It is a special bond.
Brandi, I would love a shirt like that! Where did you get it??? Chris you are right Most people are very kind. In fact my usual problem which I think I may start a new topic for it is that Isabella, my sweet little girl, usually gets ignored, at least at first, sometimes completely = (. I don't know if people feel that Noah needs more attention or what but I usually try to bring Isabella into the conversation.
Char you are a wonderful grandmother, good for you for being proactive and going up to families with people with Ds. I love when someone comes up to me. It is an instant friendship. I wish my mom could meet you. I also think that grandmas of special needs kids are in a special group of their own. Can't believe what that guy said, but it sounds like he didn't mean it at least once he realized how rude it was. How embarrased he must have felt.
Thank you all, please keep sharing.
Love you guys!
Jess

[kg91207]

We got our shirts from the local support group-it says "my child has more chromosomes than your child". I've seen "My grandchild has..." too (my mom has one). You can find shirts like that at cafepress.com. I think they also let you come up with your own logos/sayings. I've made coffee cups on there with Kaelyn's picture on it! The other shirts we have say "Are you Down with it?" They are so fun!!

[momofrussell]

I have yet to encounter a comment that was delivered in such a fashion that I needed to be rude or a b.i.t.c.h. because of it. I choose to receive the comments, smile and educate. They are trying to "connect'' usually....kinda like that "Oh, how did you break your leg" question you ask the person that JUST finished explaining it 15 times before you asked....it's just conversation and usually no ill intent. I am very sarcastic by nature so I try to keep that in check unless it's needed....I tend to be a humorist by nature....with a sarcastic edge...LOL

I have heard some awful stories but in my 12 yrs with Russell, we have never had anyone say anything truly mean or inappropriate to Russell or towards me about Russell.

As far as kids.....remember, kids are innocent, curious, honest...and some are a product of their up-bringing Friends of Regan's and Reece's have said "Why does your brother look like that" or "his eyes look really wierd".... and my reply usually is "YES, he DOES look different and his eye sure are goofy!"...because, he DOES look different, come on...and his eyes, by far, are his quirkiest trait! ;D When 5 yr olds see eyes that swim, jiggle, and are two different colors, they are apt to point out the obvious

Sometimes we form a circle (like when the friends of my girls were younger) and I'd let them ask all the questions they wanted.....for those little girls that said Noah looked different....I would have done the same for them.

This is new for you so do what is comfortable...but try not to go around thinking the world is out to get you or that you don't want someone to approach you. In order for our kids to be accepted, others need to know about our kids! If we put up walls and react in a mean manner, we defeat that purpose.....and then we look like psycho moms....LOL

And now for my funny story.... ;D When Reece was 5 she had friends over for a Valentine's Party. About 7 or so girls came to play, eat and do crafts. A few of them noticed Russell and I could hear them ask questions to Reece. Her answer was "He has Down Syndrome"...and I could then hear all the girls go "What is Down Syndrome?"...and Reece said "I don't know, it's just Down Syndrome"... ;D ;D

Simple as that..... it's JUST DS!

A.

[dannysmom]

You've already got some great advice...but I wanted to add my 2 cents .

I have had a few comments, mostly nice...some not so nice. One time, I accidently gave Danny adult Afrin instead of the children's Little Nose saline spray. Due to his heart condition...the ped wanted the ER to check his heart rate (he was fine)...but we called 911 and the ambulance took us to the ER. One of the EMT's asked me (and remember, I'm in the back of an ambulance with my son who I just gave adult medicine too..I'm not in the mood for chatter at this point). He asks me "How long do kids like him live". Yes, he really did ask me that!!!

My response was...."I don't know...do any of us know how long we are going to live?". I said if you mean because he has a heart defect...his was fully repaired. Some people with Ds do have major heart defect but most are fully corrected with surgery. Their life expectancy is just about the same as those people without Ds.

What I really wanted to tell him was that HIS life expectancy (meaning the EMT) was about 1-2 mins because as soon as the ambulance stopped I was going to kill him. But I held my temper.

Some kids have noticed Danny...but nothing out of the ordinary....just the curosity of kids. However, there is a little girl our neighborhood who is a bit younger than my daughter and ONLY wants to play with her. She won't pay any attention to Danny and just runs away from him. I've tried to explain to her that Danny is just a kid and wants to play with them. She doesn't have very nice manner to begin with .....and my daughter doesn't really enjoy playing with her either. So, I've decided she won't be playing in my backyard any longer.