Are we too sensitive?

(And by "we", I mean us parents of kids with special needs)

I've had this post rolling around in my brain for a while now. I decided to finally sit down and type it out. I think it is an important topic and maybe one we should discuss a bit. I'm wondering if I'm too sensitive to people's remarks, reactions, or responses to Caleb. When you are a parent of a child with special needs, especially something that is obvious...like a cute kid with spiky hair in a bright green wheelchair...people notice and they say things. They stare. Sometimes, often times, they say the absolutely wrong thing. But do they mean to? Are they intentionally trying to be rude? Let's discuss.

I'm going to share some recent examples:

We were at a birthday party last weekend. The party was at a skating rink so Caleb was in heaven. He was free to take his wheelchair on the rink and go as fast as he wanted, do wheelies, spins, etc. People stared, of course. That's nothing new, people always stare at Caleb. But one man seemed to really get a kick out of Caleb. He asked Caleb to show off by doing some wheelies. The man even called his daughter over to see Caleb performing his tricks. The man asked Caleb some questions like "How old were you when you started using a wheelchair?" Afterwards, the man looked at Glenn and said: "He's an inspiration to me." On the way home Glenn and I started talking about it. My first reaction was to be annoyed. Caleb isn't a circus act, he doesn't need to perform tricks for you! And the "he's an inspiration to me" comment. He's 7, he's a kid, he's not here to be your inspiration. I could feel myself getting all fired up about this stranger at the skating rink. Then I took a breath. The truth is that the man was really interested in Caleb. He talked to him. He smiled at him. The man had 100% good intentions, I have no doubt. And Caleb loves doing wheelies and looks for any opportunity to show off. Caleb loved every second of it. And Caleb is an inspiration to a lot of people. I can think of about 200 fellow SB parents who are encouraged and inspired by Caleb. He inspires me. He doesn't think of himself as an inspiration of course. Again, he's only 7. And he may never be comfortable with being called an inspiration but he is whether he likes it or not. 

One day Caleb came home from school complaining that some boys were playing basketball at recess and they wouldn't let him play. My first reaction was to get upset. Why didn't these boys let Caleb play basketball? It's because he uses a wheelchair! That's discrimination! Then I took a breath. I have no proof that the boys excluded Caleb because of his chair. Maybe they just didn't want to play with Caleb right then. Not everyone has to be his best friend. I have no reason to think that Caleb was excluded because of his wheelchair. Maybe I need to chill out a bit.

This is just 2 recent examples of about a billion I've had over the past 7+ years. I'm beginning to wonder if I have been too sensitive to comments, questions, reactions, and responses to Caleb over the years. Maybe we have all been too sensitive. For fun, I did an informal survey on Facebook to see what other parents (specifically those with a child that has special needs...I mostly heard from fellow SB moms). I got more than 50 responses to my question. I'm going to share the main issues and then share why I think I (or we) have been too sensitive about each one. I'm also going to share some of the comments I received.

1. "What's wrong with him/her?"

"I have a few words/descriptions that bother me but I think the #1 question that Bryce is asked that really bothers me is "What is wrong with you"? Or they ask me what is wrong with him. I had to teach him years ago that when he is asked this question, he is to tell them that NOTHING is WRONG with him, and that he was just born with Spina Bifida and that the muscles in his legs are not as strong as theirs and he needs the help of a wheelchair to get around. The first time he was asked that question it took all I had not to come unglued! I immediately got down and told Bryce that NOTHING was wrong with him and that he is perfect in my eyes and that I love him very much. I will probably never forget that day. Now when he or we are asked that question it does not bother me AS much but I do wish that people would just take a second to think before they ask a question and how the words they are about to use will affect that person."

So yeah, this was a big one. I know I have heard this from so many people over the years. Obviously it sounds like the person asking this question is saying that there is something WRONG with our kid. Seeing as we don't think there is anything wrong with our child, we take offense to this question. I agree it is a poor choice of words. But a poor choice of words doesn't mean ill intent. Here is what I think happens. The person asks "What's wrong with him/her?" but what they really mean to say is: "I'm curious why your child is in a wheelchair (insert you choice of special need here). I don't really know how to ask about your child. I'm nervous and I'm curious. I don't mean to say the wrong thing...but I don't know how to ask." Sometimes, often times, people blurt out the first thing that comes to mind. 

2. "Ahhh, bless his/her heart", "Poor thing" or "I'm so sorry"

"Yeah, I guess the "poor thing" looks we get drives me insane, like when people frown and stare in a sad manner when we walk into a restaurant  Some people say aweeeee and it's strung out like they feel sorry for Samantha. Gets on my nerves."

"I'm so sorry".... For what? Having an awesome kid? Drives me crazy, as if my son is something to feel pity for. Most days I feel like I won the lottery being chosen to be his mom! Certainly nothing to be sorry for.

Yep, I've heard these many times as well. These phrases have a strong ring of pity to them. I don't want anyone to feel sorry for Caleb. But the truth is that people do feel sorry for him. And honestly I know people feel sorry for me as his mom. I know they do. Before I was on this journey, before I had Caleb, I could totally hear myself saying any of these phrases to someone. Maybe they don't mean it to sound like pity. Maybe they are trying to be sympathetic but it comes out wrong. Again, oftentimes people blurt out the first thing that comes to their mind.

3. "As long as the baby is healthy."
"I hate when pregnant women say flippantly that they don't care the sex of the child but they just want a healthy child- well um... What will they do if the child isn't healthy..not love him/her."

"When people say "as long as the baby is healthy". Well, then what? Does that mean he/she is less of a person if they are NOT. My unhealthy baby has been one of the biggest blessings in my life!"

When I was pregnant with Caleb, after we found out about Spina Bifida, I had someone ask me if I was having a boy or girl. I told her I was having a boy, I didn't mention SB. She made a comment about how boy or girl, as long as the baby is healthy, that's all that matters. Ouch. Of course she had no idea what I was going through, she meant no harm. And I've heard "as long as the baby is healthy" a hundred times from pregnant women over the years. I think this one bothers me because I hear them saying that Caleb isn't healthy and therefore they wouldn't want Caleb and they don't want their own baby if he/she isn't healthy. But the truth is every pregnant woman on the planet wants a healthy baby. And I think women say "as long as its healthy" because they're scared. They are wishing and hoping that nothing is wrong and that everything goes perfectly. 

4. Not using people first language

"We hear "the spina bifida child" by the receptionist at our PT."

"Defining him by his condition "a Spina Bifida kid" REALLY rubs me the wrong way."
"It gets on my nerves when doctors refer to him as "Meylo". "Hes' a meylo."

So we want our kids to be seen as a person, not a diagnosis. Caleb has Spina Bifida, he isn't the Spina Bifida kid. Fair enough.

5. "I don't know how you do it."

"I don't like being called a Super Mom just because I am raising a kid with SB. I'm not doing anything all that remarkable. I'm quite lazy some days."

"I don't know how you do it". How do I do what, love my kid???"

I've heard this one many times. This one kinda makes me laugh because I think what people are really saying is: "Girl, I'm glad it's you and not ME!". And honestly I think "I don't know how you do it." anytime I see a mom with more than 2 kids. Seriously,I am in absolute awe of those of you with more than 2 kids. And I think this about some of my fellow SB moms that have kids with higher medical needs than Caleb. I'm overwhelmed by all they have on their plate and I've wondered how they do it. But the truth is that I could do it and would do it if I had to.

Here are some of the other comments:

"Will he outgrow it" really??? That one always gets me!! I had someone ask before where did I get his walker that it was a good idea, they wanted one for their grandchild."

"When I was pregnant the WORST was it seemed everyone felt compelled to tell me about their "uncles, brother's neighbor, who went with them to elementary school—HE walked! So your son will be fine." THOSE have to be the comments that bothered me the most. Only worse when followed by, "Should I have them call you?"

"I do find 'handi-capable' and 'blessed with SB' and things like that really patronizing. They're kind of dumb things to say."

"I find handi-capable downright hilarious! What does that MEAN???"

"I hate the Holland story! People have always read it to me or given it to me like SB is thrilling- I'm sorry but SB or not I want the Caribbean!"

"People mean well, but I don't like when Simeon is referred to as a "fighter" or "superhero" or an "inspiration." It just seems unfair to put this little baby on a hero pedestal. I want him to have permission to not be a hero. I want him to feel he can grow up to be whatever kind of man he wants. I want him to feel that he can be disappointed or blue sometimes if he needs to be. It's strange because I know a lot of moms who talk about their special needs child in these same terms but, for me, it seems to set him apart even more and place unneeded pressure on him to be "super."

I've heard all of these and then some over the past 7+ years. I've had my feelings hurt more times than I can count. I've wanted to smack people for staring and for saying dumb things. But I'm realizing that the vast majority of people mean no harm. I think I have been too sensitive. Too quick to assume that everyone who stares is being ugly or everyone who gives me the head tilt along with "I'm sorry" is expressing pity. I know before I had Caleb I would totally stare if I saw a 2 year old rolling around Target in a wheelchair. I would totally wonder "What's wrong with him/her?". I would totally think, "I wonder how that mom does it." Maybe, just maybe, most people are nice. They are curious. They want to ask questions but they might not ask the way we want them to. And that's okay.  After I posted this topic on Facebook, I got a message from an old friend:

"I teach my kids that being different-whatever the case may be! (race, religion, special needs, etc)-is part of humanity. To be sensitive to others feelings, and not judge based on appearances. There are times when we have been in public and one of them have stared to long or made comments out loud that made me want to crawl in a hole. Hopefully I have always handled it gracefully. I would like to be the mother who feels comfortable approaching someone (for the sake of knowledge and understanding for my children) without looking like a fool. I hope I'm not looking like a fool right now... When is someone too intrusive? When is it acceptable to ask questions? And what is an acceptable question?

Her message to me proves my point. We've made it too hard for people to say the right thing. I think most people want to say the right thing, they just don't know what it is so they say the first thing that comes to mind and often its the wrong thing to say.

"I honestly think the world has gotten so politically correct that nobody knows WHAT is okay to say anymore. Even being a disabled person myself, I sometimes get looks when I use certain words. I refer to myself as "handicapped" "disabled" and a bunch of other things, and sometimes the SB community looks at me like I cussed in church! Lol! For me, I guess it all depends on the character and meaning behind the words. I don't mind if my friends tell other people I'm handicapped or whatever. What's more weird for me is when someone refers to my disability and appears uncomfortable about what to say about it. As long as you're not calling me a derogatory name in a hurtful manner, I'm cool. Call me what you want. Just don't be mean."

"I honestly don't get offended by much. I understand people don't know how to come out & ask the right way. I know people are going to stare. I find myself staring at times but only because I'm curious as to what condition someone has. I love teaching people about SB so even if they do stare or ask what is wrong or come off the wrong way, I take advantage of it to spread the word. I'm sure a lot of people think "shoot, that came out the wrong way" but its too late to take back the words."

"I don't let some of the things people say bother me because I feel like most of it comes from a good place or good intent."

"Overall I don't mind most comments, because I know their intent behind them is innocent or from a place of caring. I'd rather they try to connect than to say nothing. I love to educate."

"I was very easily offended as a new and young Mommy. Now, I could care less. Unless someone is intentionally being UGLY. As a Mom of 2 kids with special needs, this is just LIFE, I realize that the average Joe on the street doesn't have the same exposure and comfort as I do. People are much too sensitive, always looking for a reason to be upset."

"I don't get offended by much because I probably wouldn't have known what to say before I had Ella."

"I think most people who say things that might rub someone the wrong way, do so out of their ignorance, so I generally just chalk it up to their lack of education on the subject. Most people don't mean to be rude so I try to look at it that way."

"I know that people are just people and some have more exposure and experience and common sense and some people are just uncomfortable and awkward. So, I treat them with the same respect I hope they will treat me and my kids with. For the most part, I don't think anyone means to offend. If I get offended I try to think why am I so sensitive about that and I get over it."

"I think for special needs parents that reaction to feel judged is heightened. I think it all stems to before we HAD kids with special needs. If we saw a special needs child in the store or an adult with a disability we could take a moment to say, "man, they're so brave." "So strong." "So unlucky." "wow, I pity them." I think it's these past experiences that make us so vulnerable to feeling segregated.
So, if somebody says something about our strength or our courage we take it extra hard, because we've been inside their brains before, back when it was our brain. lol We know what those speechless, sad eyes mean. We're being pitied. They're feeling sorry for us. So, we have the sad pity-you eyes that we also once delivered to SNPs. And we have the ones brave enough to speak up with their generic, but still well meaning, "Boy, he really gets around in that thing." kind of comments."

I guess my point in this ridiculously long post is that I've been too sensitive. Maybe we all have. So the challenge to myself (and to you as well) is to filter the comments/stares/responses/reactions/questions with the assumption the person means well. Assume they have good intentions. Use it as an opportunity to educate. We know our kids are awesome so let everyone else know it too. Are there some people who are just plain mean and will say awful things on purpose? Yes. Yes. Yes. But, I do believe those folks are the minority and not worth our time anyway.

The more things we add to the "Don't say this!" list, the less we make ourselves available. We have made it hard for people to know what to say because we keep adding to the list of things NOT to say.

I'll get down from my soapbox now. :)

I welcome comments and thoughts. Thanks to everyone who commented on Facebook. I loved reading all the responses.