"Can I ask what his disability is?" he says.
"He has cerebral palsy," I say.
"Ohhhh," he says. "That must be hard for him."
"Nope," I say, cheerfully. "He's a happy kid."
"How does it affect him?" he asks.
I explain that Max has issues with speech and using his hands, the simplified way I usually explain cp.
"Doesn't it bother him that he can't talk like other kids can?" the guy asks.
Wow. That's bold. "No, it doesn't—because he doesn't think he's different," I say. "He tries to talk in his own way, and he has an iPad with a communication app. He plays like other kids play. He laughs like other kids laugh. His cerebral palsy does not impair his ability to be a kid!"
And then I pull out a picture of Max with his gigantic grin and show it to the guy. "Does this kid look unhappy to you?" I ask.
"No," he says, and we move on to other topics, and I'm just a little flustered at having to explain, once again, that Max's special needs are not a tragedy.
It's not just strangers. I've had conversations along these lines with friends and family. Early on in Max's life, a very close family member once wondered out loud whether the reason Max smiled a lot was because he was simple-minded. It took a few therapy sessions to get past that one.
My child is happy with who he is.
I need the t-shirt.
Groan.... I just did a blog post in this same vein a couple of weeks ago: http://www.doubledoseofspecial.com/2011/02/happy-lives.html
ReplyDeleteThis is why I love research! Research shows that children with disabilities are no more prone to depression/unhappiness than their typical peers.
ReplyDeleteAnd to be honest, I'm getting to the point where I bristle at this entire line of thinking. I mean. this is one of the few areas of life where as group, we feel completely comfortable questioning the worth/value/happiness of someone that we've never even met. Why is different the same as unhappy? I mean, you live in New York and I live in the rural south, but I don't sit around thinking that you must be desperately unhappy because your life is different than mine.
If it makes you feel any better, my Hubby who's officially gifted, and who set the record in his ROTC squadron in testing--yeah, somebody asked my MIL if he was slow. Some people just need to shut their mouths.
Well, speaking as a former disabled child, and a disabled adult (difficult-to-diagnose peripheral neuropathy compounded by what might be mild-CP), I can say that in my case, I was NOT happy. And part of that was due to the disability. And yes, I smiled and laughed quite a bit, often to hide pain.
ReplyDeleteI'm not saying your child isn't happy, I'm just saying some of us aren't, and generalizations of any sort, even the positive kind, can be problematic.
Ellen, you can always give the a-holes what they want, with a serving of snark on the side...."Oh yes, Max is devastated by his 'affliction'--in fact, he let me know today that he wanted to try out for the chorus of Lion King on Broadway, but, dang the bad luck, he couldn't do all of the dance moves." Or "He's really pissed because they don't offer a class in thermonuclear physics at his school, so yeah, he's pretty miserable..."
ReplyDeleteNow that I am over my fit of pique, here's the real truth about your conversation--that guy stumbled and made a bit of an ass of HIMSELF, and you did just fine. The bright side--at least he was reaching out. He gets points for that. I'll bet that guy learned something, too. Maybe, with luck, he will pay it forward and not lump all kids with special needs into the same convenient pile. We can only hope!
Tam, who posted above, proves the rule--some kids certainly are miserable. I think it depends a lot on the environment in which they are raised, how included they are, how supported they are, and how much they're made to appreciate how much they can do, rather than being shoved off to the side and told that they cannot do what the rest of the kids are doing. And this is true regardless of their degree of need (special or otherwise).
I think it's fantastic that you're open to talking to people & sharing information "in real life." :) However, I wanted to say that I don't think his question of if Max was sad about his speech differences was all that bold. I was born profoundly deaf & yes, I do grieve for my lack of speech & am even attempting to learn speech even though many would argue that at 21, it is too late. Speech is such a vital part of how the world operates, that it makes sense he would wonder. However, I do believe it WOULD be bold if he asked Max that about himself or if somebody questioned me, "Do you ever feel sad you can't _____?" because that's not very tactful & pretty personal, as opposed to asking something about someone else who isn't present. But, I can understand how you might take it personally: he's your wonderful Max.
ReplyDeleteI am totally open to talking about Max; I do it all the time, here and in real life, in the interest of raising awareness. But I did think it was bold of this guy to ask this question because it's such a personal one. Of course, I also got my Mama Bear on because it's my Max, but also because of the line of thinking behind the question (he might not be content because of his disability).
ReplyDeleteTam: I'm sorry for what you went through as a kid. I wasn't saying that every child with special needs out there is happy. This is a post about my own experiences and my own Max. RIght now, Max is fine with who he is. It may change. I hope it never does.
Oh, we get that as well! If I had a dime for every stranger who gave us the pity look and an "Aw, poor little guy" comment, I'd be able to pay for all of Monkeys therapies and treatments that insurance won't cover. The interesting thing is that Monkey is by far the happiest person I have ever met, yet people often ASSume that he's suffering.
ReplyDeleteThey may mean well, but I wish they would keep their pity comments to themselves. Not only are they way off base, but such comments do nothing but send my son the message that there is something wrong with the way he is. If he feels upset about his diagnosis, that is his business; nobody has the right to tell him how he should feel. However, making him out to be a victim does him no good.
Because my son has DS, I often hear the comment, "People with Down syndrome are so happy all of the time". While my son has a sweet disposition, & most times is a happy little guy, he is not ALWAYS happy. Trust me. I'm not sure why it is difficult for others to understand that people with special needs are still PEOPLE. They have varying moods/emotions just like everyone else.
ReplyDeleteI think the way you handled it the situation was great. And the fact that while you thought he was rather 'bold' you were able to respond in a manner that kept a conversation going may have opened his eyes a bit.
ReplyDeleteI'm glad that Max is such a happy kid, so very cool. My stepson who is 6, and has CP, is basically a happy, friendly, outgoing kid. Unfortunately this school year has been really tough on him. He has become very aware of the differences between himself and the other kids and doesn't want to talk about his CP and now hates school. The fact that he is getting bullied doesn't help either -- you can imagine all we're going through with that. He's a smart kid with a huge vocabulary - no problems with speech - but still struggling with reading doing to vision issues. So he is tall for his age, and talks like a much older child but reads about pre-k. How do we help him so that this bright, cheery, optimistic outlook of his, that has gotten him through years of every sort of therapy, got him to walk, to ride a bike, etc, doesn't get destroyed?
I really appreciate your story as a reminder to realize that he is just a kid, and his issues are not always a big deal to him. Even if right now, we're struggling with how those issues are affecting his life at the moment.
I think that for the most part, our children with special needs are happy and content with their lives. That doesnt mean that they dont have emotions like typical children like someone pointed out, they can be frustrated, sad and in pain just like any other kid.
ReplyDeleteBut it's usually us adults who end up spending time worrying, upset and overanalyzing things.
That being said, i think that man was out of line, just like the guy who I met this week who asked me if I did pre-natal testing (my son has down syndrome), if I was worried when I was pregnant with my other children, and if my son is high-functioning....
"A very close family member once wondered out loud whether the reason Max smiled a lot was because he was simple-minded...."
ReplyDeleteWhat. The. *&%$.
Hmmm,, well said Ruchi..
ReplyDelete"But it's usually us adults who end up spending time worrying, upset and overanalyzing things."
I get those types of questions all the time with Junior. The other thing I hear regularly is "oh that poor thing, just so sad". My little guy is the happiest person I have ever met. He doesn't see himself as disabled to him this is life and he loves his life.
ReplyDeleteI can't stop May from smiling and laughing. Sometimes I find it difficult to feed her because she is giggling so much!
ReplyDeleteCertainly the guy was rude and intrusive. He should not have said what he did--but given that you described Max's CP as affecting his speech and hands, with no mention of cognitive issues, could you really blame him if he wondered (to himself, at least) whether Max was "bothered"? Max, in addition to his sunny disposition, seems blessed by having his mind and body developing in tandem (albeit at his own unique pace), but Rude Guy had no way of knowing that from your "simplified" CP explanation. It does not seem unreasonable to imagine that a kid (or adult) whose cognitive and physical abilities were very out sync (for instance, age-typical language comprehension along with physical inability to form words) would indeed be frustrated.
ReplyDeleteFrustration comes from being unable to do what you can imagine yourself doing. Max is not in that position--but I think Rude Guy can be forgiven for assuming that he is, given the incomplete picture he got from your brief CP description. (No need to forgive him from being remarkably rude and intrusive, though.)
Julia: WTF indeed.
ReplyDeleteMr/Ms. Anon Y Mous: I totally get why this guy wondered if Max were bothered by not being like other kids. But the tone of his line of questioning was that kids with special needs much be bummed about their sad lives. I'm very sensitive to that sort of special-needs think, as I've encountered it a lot over the years.
Ellen - thanks so much for this blog. I've learned so much from you already in what it means to be a special needs parent.
ReplyDeleteI'm sure this type of thing will annoy me, too, as my 6-month-old with CP gets older, but to me, it sounds like this guy was just trying to be sympathetic. It makes me wonder what you would have preferred him to say when you told him Max has CP:
"That's great!"
or
"Ohhh, that must be hard for you"
or
"Oh. I am completely neutral about that. Shall we talk about the weather?"
Please excuse my smart-alecky-ness. I really am curious.
Hi, Shasta. Hmmm.... I don't think I would have "preferred" him to say "That's great!" Yeah, definitely not that. You can see from the above why that particular question rubbed me the wrong way. It wasn't so much the intrusiveness as the implied thinking (or what I implied, anyway).
ReplyDeleteOk, I guess I'm just still in the "tragedy" phase and wondering what is the appropriate way to react to other people when they tell me about their children's disabilities.
ReplyDeleteI get what you mean about implying that Max is unhappy just because he's different, though.
I'm thinking the guy was just projecting his thoughts about what would happen if he had a special needs kid ... Remember most people haven't had the days, months, years to process the surprise, the unexpectedness, the hard times, and the richness of a life with a special needs child. By talking to him about it, you enlightened one more person. One person at a time!
ReplyDeleteglad you posted about this. we get this all the time. At first we recoiled from the assumption but have come to realise it's a normal line of thinking.
ReplyDeleteIf I, as an adult, woke up tomorrow with Max's CP or Ashley's SOD/ONH I would at first be devastated. So I understand the guy.
BUT and it's a big "but", the most damning thing about people's perception of disabled kids (and adults I suppose) is that the disability is the be-all-and-end-all of who they are. It isn't is it?
Max(and my Ashley)are beautiful sociable little boys who (like all of us) have many many facets. One of them is their disability.
It's his use of Max's disability as a sole defining description that I would find annoying.
Yes, Dave, exactly.
ReplyDeleteShasta, I know where you are. I've always found it most useful to be straightforward with people. Earlier on, when it upset me when people asked questions about Max, I found it very helpful to have stock answers to use. For example:
Person: "Is he talking yet?"
Me: "Not quite but he's coming along!"
Person: "Is he walking yet?"
Me: "Not quite but he's coming along!"
Person: "Is he cooking three-course meals for you yet?"
Me: "Not quite but he's coming along!"
It is amazing to me how people can be so rude! I think that you handled the situation with pose and grace. The family member's comment was horrible. Adults can act worse than children sometimes.
ReplyDeleteI think every kid - and probably most adults - has something or goes through something that makes them feel "different", so to assume that because Max's differences are more obvious. . .that guy was just showing his ignorance. You handled it well - I might have asked him if he was sad about being ugly.
ReplyDeleteThis happens to me on the regular.... except my son is only 1 year old so.. the questions are more geared toward Is he walking yet? or What new foods is he eating? or is he getting into everything? and when i say No and then explain people tilt there heads and say oh... im so sorry! Its the pity that i cant stand....Its funny because at this moment i feel stronger, much stronger. But honestly im not always so strong. But some how someone else feeling sorry for me makes me stand a little taller and prouder! Some times i just get ticked off and some how manage to get angry at people for asking me if my son is walking... i think to my self "WHO ASKS SOMEONE IF THEIR SON IS WALKING YET?" like this question in my world has become the rudest question ever?! i HATE this question!!! LOL!
ReplyDeleteIt's all attitude, being content with what what life gives you. I blogged about this on my post "Autism...where does one stand?" in that when it comes to disability, you can either say "why me" or you can say "hey, why not? thats life"
ReplyDeleteMy blog is at http://ppd-nossocmajor.blogspot.com
"WHO ASKS SOMEONE IF THEIR SON IS WALKING YET?" -Candice
ReplyDeleteUm, who -doesn't- ask this? It's one of those standard baby questions, along with talking and eating solid foods and teething. They don't know your situation unless you tell them. And depending on how you tell them, they might be too afraid to interact with children with special needs or their families, ever again. I was certainly afraid to for the longest time because my mom was always telling me it was rude to ask questions, rude to talk to them, rude to even look or wave or say hi. But then I was told by the people who get ignored that it was much ruder to ignore them (obviously).
I have yet to find any suggestions here on the RIGHT thing to say or ask, even though someone else in this discussion has asked for that repeatedly. All you've said is what not to say. I know I'm not the most eloquent, but no one else is either, and it's much healthier that they ask than make assumptions.
I suggest a t-shit contest...Last April when attending Busch Gardens with Ryan's AFJROTC unit, we walked around the park with him hanging onto my arm, this is what we do in crowded situations, AND since he flat out refuses to utilize a cane. For years I have been telling him you could at least use it to beat back the girls, but what do I know, I am not a 16yo boy...Even at the proximity with which we were walking, people were still trying to push through us, it was so much more frustrating than it needed to be...Anyway, I want a t-shirt that says, "I CAN'T SEE YOU LOOKING AT ME FUNNY!"
ReplyDeleteI did a 3 day drama program and I did well in my performance as Lady Gaga (or Zaneeta Shinn) in "The Music Man". Everyone LOVED it.
ReplyDelete