Monday, April 27, 2009

That's just life

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As gratified as I was by the response to the last post, indignation at the woman's comment wasn't really my intent. I was really just jotting down my thoughts on the zoo experience and how it must feel to my little guy. I wanted to remember the struggles he deals with, for those moments when I'm not feeling so patient, so willing to carry his growing body. (And yes, Beth, I most definitely felt that "workout" the next day!) Forcing myself to see the zoo through his eyes and senses made me realize what an overwhelming place it can be. Talk about a constant influx of stimulation!

But you all reacted to what the woman said. How she passive-aggressively told me I was babying my big boy. Funny though. While I certainly was annoyed by her comment at the time and knew not to bother explaining my actions to her, those feelings of annoyance didn't stick. Not really.

And it's not that I disagree with you all. She was way out of line. And I would never even think to say something like that to a parent. But, you see, that type of experience just isn't that rare. I'm sure any of the special needs parents that read here could easily share a story of unrequested opinions and advice. Or recount episodes of glares, pointed looks, and angry body language. There ought to be a slogan in the Autism community about the gateway to Hell being deep in the bowels of any grocery store.

Autism is an invisible disease. You can't look at a kid and know he's Autistic. But many have behavior problems that are oh-so-apparent. George is a screamer. Not so much as he used to be. Every word added to his vocabulary is one less scream. But still, the tantrums happen. And, to those who don't know him, they look like a bratty little boy not getting his way. And his mom giving in to his needs, letting him "win". And sometimes, instead of screaming, he needs to cuddle with his mommy. And for the sake of his sister, who still has an hour's worth of animals she's excited to see, his mommy is willing to carry him for that hour.

I don't know where I'm going with this. Just that, I'm used to the comments and looks. I don't like them, but I understand how he appears. And as much as I would like this to be a perfect world where people don't judge and maybe consider that something they can't see is in effect. Well, that's just not the real world, is it? I do wonder why some people feel it's okay to share those judgements, though, I can't imagine why they think they would be appreciated, valued, or listened to.

But seriously, does this look like a brat to you?

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Anonymous said...

You know, I wanted to comment on your last post, but didn't have words to say. Everytime I get 'the look' when Liam is throwing a tantrum in the floor and grunting/screaming/saying non-sense words, I think to all the times that perhaps I would see an older child do that and think "why in the world don't the parents teach that child to talk and behave right?". I feel kind of sick to my stomach then. I hope that, at least for me, Liam's speech problems will teach me patience and empathy toward others. Because you never know until you walk in someone's shoes for a while. You never know.
And nope, that beautiful boy definitely doesn't look like a brat to me! Hugs!

Mom said...

Your blog generated a lot of discussion and isn't that valuable in itself? It remains frustrating to find people who just don't know any better but maybe it is up to the rest of us to do that much more educating. Love all those little guys and girls!

loonyhiker said...

I don't think I was upset so much about the autism aspect as much as an adult saying something inappropriate which really hits a sensitive spot with me. When I was dating my husband in my college years, a woman came up to us at a steak restaurant and told him that she was surprised that I knew how to use a fork. Just because I'm Chinese I guess she assumed I only knew how to eat with chopsticks and that I didn't know how to speak English (which is the only language I know!). So I have little tolerance for ignorant adults and feel the only way to educate them is by responding. Thanks so much for a post that makes me think and encourages conversation!

Michelle said...

Brat? I certainly wouldn't say that by looking at this picture or by knowing him the little that I do. Every child has issues and most are underneath and not something that can be seen. All three of mine have them, the 18 that I care for have them, but it is up to us as parents and providers to notice them and help them grow the best way we know how. You are a strong woman and a wonderful parent for both of your children. Keep up the good work and carry those children wherever they want to go!!! :-)

Anonymous said...

I have a friend with a child with Cystic Fibrosis (CF). When they were looking at colleges they were on a tour with a group of other interested people. Her son did not walk very fast as he would get out of breath. There was a group of boys behind them who started making comments about being stuck behind such a slow poke, a slug, a physically retarded person. She cringed... wanted to scream. Her son was devastated, but was used to comments. I pondered why shy did not say something to the boys... something guilt oriented such as explain the disease or that they would still be alive in 10 years while her son would not. But... she used all her strength everyday to support her son, make him the best he could be. The image of the boys, though, has stuck in my head.

When my son was 4 we were stuck in the Las Vegas airport, having missed a connecting flight to Maine. 11 pm, Naturally, this airport was full of gambling machines, smoke and loud people and we were waiting in line after line hoping for the next flight.

Our son was in a stroller and was half asleep with a pacifier in his mouth. He has autism and the pacifier is monumental in its ability to sooth him and stop meltdowns. The airline employee helping us (yet, it was after 11 pm) find another flight leaned down to our son and said in a VERY loud voice, "Aren't you a big boy? Why do you need a pacifier? Those are for babies, right?" and on and on. My husband and I were already exhausted and so stunned that we were wordless. Here was an autistic child who just missed a connecting flight, late at night, in a loud airport- yet he was sitting quietly in his stroller slurping on a binky.

I leaned over to the man and said, with a straight face, "It helps with the chemo". The man visibly blanched and helped us immediately find a new flight.

I seethed over his 'need' to let us know we were too lenient and to be the one to inform my son that he was being a baby.

Yet, in hind sight, who knows what battles he was having at home with a grandchild or someone else over the same issue.

I do keep the 'chemo' comment in my mental readiness, just for situations that might help educate an insensitive person. Perhaps jolt them enough to contemplate that all is not as it appears.

Tanya @ Teenautism said...

What a cute face! And thanks for the reminder that sometimes when people make a negative statement we need to just let it go (at least, that's what I got out of it. And needed to!)

mommy~dearest said...

I'm with Tanya. And ohmigosh- that is an awesome pic! Love the freckles!!!