As much fun as we had on our vacation, I got a wee bit tired around…day 2. Not because the kids were making me crazy or because we had been driving for hours on end or because I had to hold down the string to get water and there were no fluffy robes. No, that wasn’t it.
It was how people were treating us because we have a child with special needs.
I’m not sure if it’s because she’s older now and it’s more obvious that she has special needs or what but seriously people. STOP. LOOKING. AT. HER. ME. US. Take a f’ing picture, it lasts longer!
Let’s start with the Josh Turner concert (I am still waiting from his press people for pictures!). We checked ahead of time to make sure that strollers were allowed. The venue was outside and there would be a lot of walking. Olivia’s a good walker, but tires out pretty easily. The website said strollers were allowed.
We get to the venue and they wouldn’t let us bring in her stroller. Even though we explained that it is really her wheelchair. They gave us all kinds of crap about it but finally let us in. Thank God a girl named Kelly who worked there stepped in and took over or else we would have missed meeting Josh all together.
But still I was pissed.
I know there are rules but sometimes it’s not black or white. It’s gray. And you need to use your freaking head and realize that this stroller should be allowed.
Then the staring. Seriously, I don’t understand people. Even kids that stare piss me off. Haven’t they ever seen anyone different in their whole life? I’m assuming they’ve left their house before. That their parents have told them not to stare at someone who is overweight/bald/ugly. Same freaking rules apply here!! It’s just so ridiculous.
And so very tiring.
While swimming at the pool one day and enjoying the nice afternoon with my kids, and old woman (at least over 65) swims over to me and says “She got cerebral palsy or what?”
She doesn’t know me from Adam! Why does she care? What’s it her business? Leave me alone!
I look at her and in my bitchiest voice say “No, she has Cri du Chat syndrome.” Which always shuts ’em up. They have no clue what I’ve just said!!
My friend Michelle says I should make up business cards that say “Leave me the f*** alone. Google Cri du Chat Syndrome.” Whattya think?
We go to my Dad’s lake and at one pool they will let Olivia where she was allowed to where her floaty suit and another where she wasn’t. Same place. Seriously. Then they said she couldn’t wear it to go down the slide that was in 7 feet of water. She was allowed to go down the slide though. We explained our situation and they still said no. So I’m all “So you’d rather my daughter who has special needs and can’t swim go down the slide in really deep water and chance drowning than just let her wear the suit?” Yep. Then 5 minutes later? Down go 2 kids with floaties on. I almost lost it.
It’s just constant stuff like this that makes me insane. Just leave me alone, only say something to me if it’s nice and stop staring at my daughter.
Is that too much to ask???
I like the business cards. I may get them for you for christmas.
I’m starting to feel the business card idea…..Just breath! It makes me mad just reading about it. But I’m starting to understand your frustration. The sad part is alot of parents nowadays do not teach there children manners or what is or not is appropriate, especially to accept everyone and be polite. And people think there opinions are wanted even when it’s none of there damn business. People are clueless!
common courtesy is lost in our society today. so is common sense. really? you don’t think it’s okay to bend the rules JUST a bit so the special needs child doesn’t have to walk a far distance when it is more difficult for her than for you? REALLY? you don’t think it’s okay to allow her to wear a floatie suit down the slide so she won’t drown? sheesh. i’m sorry all of that happened to you and to her.
I am so thankful that my children have grown up with a great uncle that has DS, as well as other severe cognitive disabilities. It is visible that he is different than they are, but since he has always been there, he is just “normal”. It has made them understand from a very early age that people come in all different packages and it doesn’t matter! You have every right to be angry, frustrated, etc. You are a better person than me – I may have pushed that 65 year old under the water.
I sort of get why other kids stare (I think I’ve mentioned that I have a “starer” who stares and everyone and everything because she is Miss Curious) although I’m sure that doesn’t help you feel any better, and I wish parents would teach basic manners. But that older woman??? Seriously??? You should have asked why she’s so ugly. KIDDING! (Not really.)
I’ve come to realize that the stares won’t ever go away. I have felt all of what you have expressed here. So, I ask myself, “How can I get over it?” I haven’t found an answer because being upset and hurt about the whole thing is all part of being human. I just hate the constant reminder that our lives our different even when we’re trying to do something “normal”.
But, so make us all giggle a little … I often catch my little guy staring at other kids who are different from him (those in wheelchairs, with fancy walkers, etc.) I can imagine the moms thinking, “What’s he staring at?” It’s just quietly funny to me because he sooooo stands out himself!
I truly believe that they stare at Olivia b/c she is SO beautiful. (Wish we could have met her in person, too, but I totally get being able to pay attention and complete a thought while at the Conference!) I think we have people looking at us too, b/c they are trying to figure it out… the 65 y/o probably thought she guessed right and had to find out! So rude. Altho one time a gal at the supermarket came up and said, “Is she CP?” and I was all set to get mad, but it turned out that she had a son w/ CP and lived around the corner from me. Her approach could have used some tweaking. A SN mom should know better. Hasn’t it happened to her?
That stroller thing has happened to me, too. I think any place that is a public accommodation has to ACCOMMODATE, or risk being sued. That said, we were at the zoo in Chgo one time and were first denied access, then a supervisor directed us to the “wheelchair area” for the dolphin show, which was BEHIND a WALL none of us could see over! UGGGHHHH. Says to me, “This is what we think of you handicapped people.”
Had a thought related to the fundraising issue… and since so many HS kids find Cdc such a intriguing syndrome for their “rare disease” reports… when people rudely accost you or email you to provide info for their biology assignment, have a card that includes info on where to send donations! That might get rid of them quickly.
I am constantly perplexed by the invasive nature of strangers. Why is it any of their business? Why do they insist on being rude? And do they understand that they can utter a few careless and casual words and then walk away without considering the consequences for the other person? Seriously I don’t get it. And I am sorry these incidents happened to you. But given the smiles in the pics over the last few vaca pics, I hope the good outweighed the bad.
OMG TIF.FA.NY!!! I can totally relate because of my learning disability and for being a biracial couple IN. THE. WHITEST. CITY!!!! At Disneyland (where I use to work) that shiz would never ever fly, more places need to learn from Disneyland. Seriously, don’t be afraid to threaten to sue, because they are breaking the disability laws. If you want I can send you some information. And I also follow them on Twitter. Tiff I got your back girl! This is totally 100% unacceptable. I don’t think people know they are breaking the law, and sometimes you need to tell them. Also I have to bring that paper with me to the DMV in case they ever try to be difficult with the written test. You should just keep one in your purse. There are laws to protect you, Olivia and your family. And I totally wish I was there to be like “B please!!!” while doing the z-snap ahahhaha! I actually had a friend in college who was quadriplegic and he couldn’t work. He would go around to places and if they were not up to code with the disability law he would sue or settle. I can’t say I agree with that as a form of making a living, but he truly believed he was doing society a service. And I guess he is right.
Brittany is starting to get it too. While I was visiting her she took Lils to the doctors office and a lady working there was asking all sorts of questions like “what causes Cri du Chat? Why is she so skinny? Are you feeding her enough?” Brittany came home upset and emotional. DON’T PEOPLE GET IT!!!! Curiosity killed the cat, isn’t just a funny saying…. it can really cut deep.
I am sooooooooooo so so so sorry Tiffany! I wish people had manners, why do people do things like stare and make comments? Seriously, where in their filter does it say “yeah go ahead and say those words.” I actually just wrote a post about the racism we have gotten in the last 2.5 years. It can really hit a nerve, a passionate nerve! And it makes me so sad that someone as precious and tenderhearted as you and your family would still experience discrimination! I am soooooooooooooo sorry!!! Seriously let me know if I can help you in any way!! OK!!!!!!
I wish I had advice for you. Instead, just know that you’re not alone. So many of us out here are either going through it or will and are dreading it. The fact that you’re open about how much it bothers you and how intrusive it is means a lot. I hope people reading your blog are some of the starers and realize how much it can hurt.
Where do I began! So far we have been lucky because Lily is still so young and people just think she is six months old instead of a year. Anyway I dread dealing with this because I am not a very confrontational person, and I really don’t know how I will handle this stuff. I am sorry this was to tiring for you, it should have been a relaxing trip, and thanks to the jerks out there it wasn’t!
I’m channeling Bill Engvall right now. I can’t stop picturing the ridiculous people staring at Olivia, placing judgement on you. Hello people! “Here’s Your Sign!”
Hugs to you my dear friend.