On Tuesday morning, Nathan and I went to the grocery store. Typically, we arrive early when there aren’t many shoppers, but I had coffee with friends and showed up later in the morning. Nathan was on a roll. His new thing is waving, so he grinned and waved at every person we came in contact with while navigating the aisles. His wave is like a dog’s tail – his enthusiasm causes his arm to move his whole body. By and large, he received positive feedback (which is what kept him doing it, of course) and time and again I heard
“He’s so cute!”
We get that a lot.
Now, I don’t want to be too suspicious of people, but sometimes I wonder how many of them really mean it. He IS a super cute kid, so maybe they all do. Maybe they see an adorable blond dynamo, not Down syndrome. Maybe I’m overly sensitive and people really aren’t thinking anything other than “He’s so cute!”
But my gut tells me something different.
A lot of these smiling people are genuine. It shows in their faces, the questions they ask, and how they linger and engage with Nathan. For others, I often feel that “he’s so cute” is simply a filler that people throw out to be nice, because they don’t know what else to say. Many of them probably walk away and never think of us again, a few may briefly thank the Creator that they aren’t me, and others may wonder if the lab made a mistake in my prenatal testing (because surely I would not have chosen to have a child like that!)
Maybe they mean it, or maybe it’s just one of those things that people say to make themselves feel better.
I met a woman recently whose family was affected by a horrific car accident that left her daughter with brain damage. We talked about why, when you’re facing difficulties in life, people say, “God only gives you what you can handle.”
It’s a well-meaning sentiment, but it rings hollow.
This wise lady gave me her take: she said that it’s not about making the hearer feel better. It’s about reassuring themselves that they aren’t ever going to face what you’re facing. Because they don’t believe they can handle it, so they are reassured that God won’t give them that challenge.
It’s not unlike the oft-repeated phrase, “God only gives special children to special people.” First, it’s simply not true – some horrible parents do have special children. A little part of me thinks that when people say that, they’re saying that I’m different from them – special in a way that they are not – and because they aren’t “special”, they can breathe a sigh of relief that they won’t ever have to face the challenge that I’m facing. As much as I appreciate a compliment, I don’t ever want to be placed on a pedestal.
But since when does “difficult” equal “undesirable”?
Plenty of things about life are difficult, and we choose many of them – marriage and childbirth, to name two. Both are challenging; both are worth the effort.
Anyone who’s ever run a marathon will tell you that it’s difficult – the training eats up a lot of time, your muscles ache, and your mind screams at you to stop, because it’s too hard. But thousands of people choose to run the marathon every year, and many people choose to run them over and over again.
Why? Because the marathon isn’t just a test of physical ability – it’s a test of your mettle. When you cross the finish line, you become special. You become a person who battled adversity and came out on top. Everyone wants to feel special.
Hi, Just thought I’d read your blog this morning and glad I did. I’m a PT and so I know a lot of the difficulties you face but I also know the joys too of children with special needs. I checked out your profile after you mentioned the marathon analogy and you are a runner. Was just telling my husband I want to offer free email coaching (tailored plans, injury help…) to moms and dads of kids with special needs or ones at risk. I know how much time it can take to be a parent and love that you make time for yourself. So if you or anyone you know is interested, head my way!
Running is my sanity, Andrea!
I would agree that people who say things like “God only gives you what you can handle” are making themselves feel better because God would never give that to them because they don’t feel like they can handle it.
Here’s where I stray from you a little – I would argue EVERYONE wants special children. Because I believe all children are special. Maybe in my rose-colored world the idea that not everyone wants special children doesn’t hold because I don’t see your children as any more or less special than my neuro and physically typical children. Every child has different obstacles to overcome and different things about them that make them unique. There’s something about each of us – our own journeys, our own genetic makeup, our own challenges – that stands us apart from the rest.
I know you well enough I think to know that you aren’t trying to say that your kids are somehow more special than anyone else’s (although I think every mother thinks that, don’t they?) but I can also see how easy it is to fall into an “us-them” mentality with respect to the way the world works. It’s a difficult thing, as a minority, to show the world the wonderful things that make your children unique but yet promote the idea that they’re just like all the other kids. If we constantly hold up that they’re special in a different way than all the other kids, then mainstreaming, equal access, and societal acceptance become harder to come by rather than easier.
Now, that’s not to say you don’t talk about what makes Nathan or Sarah Kate different and advocate for them. I see this in my life fighting for equal access to marriage/family rights. Yes, I talk about what makes me different and what makes my family special. But really what I want to get across is how much we are the same. My family is just like yours.
I know what you’re getting at in this post is the idea of prenatal testing and the fact that over 90% of prenatal DS diagnoses already end in termination. And you know you’re preaching to the choir with me. I think, though, that sometimes we all get so caught up in what makes us or our kids different that we separate ourselves further from the goal of equality for everyone, regardless of what makes them special.
I remember an old episode of “Roseanne” where Roseanne’s youngest asked her if he was an “accident.” She said he was a “surprise.” He asked her what the difference was. She said, “An accident is something if you had it to do over again, you wouldn’t. A surprise is something you didn’t know you wanted until you had it.” Wouldn’t it be wonderful if we could see all of our differences as surprises rather than accidents? How much of an impact might that shift have?
I guess I should have been a little more specific in my closing question, which really meant special NEEDS, not “regular special,” because I think everyone does want extra-special kids, and I do think all kids are special. I think what I was getting at (the whole post was a bit of a ramble, which is rather unlike me, and this comment is no different) is that all of the things that people conventionally view to be “special” – excelling in sports, high IQ, popular, what-have-you – are desirable, but disabilities are not. Yet, when you watch the Olympics or the Ironman, what athletes do you remember? You might remember the gold medalist’s name, but it’s the guy that didn’t medal who had a great story whose face and details you remember.
I love everything that you’ve said, k. I wish I had more to add. I particularly love the quote from Roseanne (really!) Nathan was definitely a surprise. 🙂
OK, I disagree totally. Your kid is really freakin cute. So is Sarah Kate. I follow your blog. They are cute not on the outside, not to make me feel better, not 50 percent or 75 percent. 150 percent gorgeous.
Period.
I come from Specialville. Special upbringing. Special relatives. Special family.
Personally, I think we’re pretty damn special. 🙂
@writewrds
Thanks, Pam! I happen to think he’s pretty cute, too. 🙂
Great post. I think about a lot of these issues too. Especially now that the difference between my twins is getting more obvious, I wonder if strangers are beginning to notice that Malachi isn’t quite right.
The line about “God only gives you what you can handle” drives me nuts too. I feel like MOST of the time MOST people are going around NOT handling the things life has given them, thus wars, addiction, abuse, and plain-old ordinary you-didn’t-take-the-trash-out conflict.
But so Andi, truth: would you want another one?
HA! I wondered who the first person would be to ask me that question – I should have known who it would be. 🙂
The answer is both yes and no. I am happy with two children and there is no part of me that yearns for another child – at all. However, if I were thinking of having another child, I’d probably look long and hard at adopting a child with a disability (though, if I’m being honest, I would probably stay within the familiar and select a child with CP or Ds – I’m too old to learn another “condition” – HA!)
🙂 Yes, it is like running a marathon and at a certain point you are tired of running marathons!
i must just live in a dream world because i 100% believe that when someone tells me that rachel is cute. because if they didn’t think that, would they really even bother saying something?
Then you are probably enjoying your daily life more than I am, maggie! I can’t help it – I’m a thinker and a ponderer and an analyzer. Honestly, I do think most people mean it – there’s just a little niggling part of me that has to wonder, though.
Well Andi, your blog always makes me think. The cliches about special parents for special kids and God only giving us what we can handle drive me nuts. My experience says neither of those are true. I’m not sure why people say them. I can tackle the cute statement from my point of view. When my youngest brother was pre-k and younger that comment did not bother me. He is cute. When people comment about babies and toddlers being cute… I think they mean it at face value.
My outlook for J changed as the years passed. I had a great deal of hope that he would develop social skills and be like many of the kids and adults with special needs that I had previously known. My brother is still cute but he is now 10 and has obvious severe mental and social deficits. I have caught myself just deflecting with “he’s cute” because talking about his actual development is painful. When other people make the comment that J is cute, I now think that comment is the only positive one that they can make.
Thank you so much for sharing, Janice. I’ve seen enough comments on other articles, blogs, etc., by people who don’t have family members with disabilities to know how some people think. Time and again, I’ve read things like, “That mom is happy now, but her kid is still cute and easy to take care of – just wait until he’s grown and…” so I guess in some ways I’m waiting for the proverbial other shoe to drop.
Excellent post. I love the “since when does difficult equal undesirable?”. So very true. Nathan is adorable so I bet most people truly mean it when they say he is cute. Yet, I know where you are coming from as I think about the same things too.
I don’t think we can help but think about these things, Anna. Which is, of course, just another to add to the long list of things that are the REAL cause of suffering for people with disabilities and their loved ones. Most often, it’s the attitude of other people about the disability that causes suffering, not the disability itself.
The “God only gives” comment is bogus. It’s not even in the bible, although people like to quote it as scripture truth. The real truth is that if God only gave you what you could handle then there wouldn’t be much use for him. All of our troubles really start when we think we can handle them without Him. I think God gives us stuff we can’t handle because He wants to handle it for us. He wants us to trust that He has the right answers to our problems, even if His answers don’t follow our time table or wishes. A genie he ain’t, but I personally don’t want a genie…
As far as Nathan goes, he is cute embodied. You’re just being modest. If he wasn’t, people would say he was “breath-taking” ala Elaine on Seinfeld (if you don’t know the reference, look up the ugly baby episode). Ha ha! 😉
I don’t think you are being overly sensitive or cynical. We all crave geniune words. And, I think they are in this case. Chalk up the he’s cute to that fact that he is. I know what you mean, though. I had someone tell me today that I had a great nose, which I don’t. I’m okay with my nose, but to mention it made me feel like they were only complimenting it because it isn’t cute and they thought I must be self conscious. More on that later…we’ll chat.
I’m totally not being modest. I think my son is the cutest kid EV-ER.:) Except for maybe Sarah Kate – she was a cute baby, too, although she didn’t have that wonderful squishy baby fat that Nathan has.
When people comment on how cute my girls are, I know they mean it because they are generally commenting on their curly curly hair, which is absolutely fabulous (when you have random men commenting on a 2-year-olds hair, you know it’s something special.)
When people tell Julia she’s cute in that baby way that is also used for old people – that is when you know it’s not her cuteness that propmted it, but because they think she’s mentally deficient, which, whether it’s true or not, is unacceptable. You don’t talk to people who are not babies in a baby voice.
Great post Andi. I am not a fan of that comment either “God only gives people what they can handle” – actually a very good friend of mine told me that people that say that are full of crap (well that is not exactly what she said but I didn’t feel right about swearing on your blog 🙂 ) There are other things that people always say to me that make my skin crawl like “everything happens for a reason” – not sure how that is supposed to make me feel better about my son’s limitations. Anyway I am babbling but I also have to say that Nathan is super CUTE and I mean it.
I think people say those sort of things simply because they don’t know what else to say, and they are so damn glad they (think) will never be put in the position to find out for themselves.
My husband and I are raising our grandson who has Down syndrome. He’s six and a half and he’s as cute as a button. He’s also one of the few kids with Down syndrome who is quite tall for his age.
My biggest gripe is the people who say (of kids who have Down syndrome) “Oh, but they’re so loving”
Well, yes they can be, but they can also be just as grumpy, difficult, frustrating, noisy and naughty as any other kid!
Please don’t define my boy as being “loving” as if that’s all he is capable of being.
Yes! Nathan is a very loving child, but so is Sarah Kate – those statements not only minimize all of the other qualities, but also take away from the fact that he IS loving (it’s as if it’s assumed he’ll be that way, through no effort of his own, which devalues the loving nature!)
That woman is very wise and what she said is very true I never thought of it that way 🙂