Autism Watch: 2007

How’s your son doing?

Posted on: January 3, 2008

Such a simple phrase, you’d think, right? So easy to ask. Takes two seconds, and it’s just the nice thing to do. Why don’t people actually say it then? And before I go any further — this could be categorized as a rant of something that has annoyed me for quite some time now. I bet many of you can relate; others, you may find it annoying, but that’s okay, it’s my blog, and maybe if someone actually says it out loud, someone will realize “hey, that’s me. Never meant to do that.”

Like everyone else, I had a busy Christmas season. With so much going on, in addition to working right up until Christmas, and maintaining the same, normal schedule of appointments, therapies and whatnot, I didn’t get out paper cards, so I sent out a boatload of e-cards with photos of the four kids together. I didn’t expect responses back, as everyone else is equally busy, but I still have to say I was surprised with a couple of the responses I got. From people who send me things about their own children, no less, I got … wait for it … nothing about my son. Before I sound picky, let me just say it’s part of a pattern. “My son graduated from college!” I give appropriate congrats. “My son is a doctor now!” More appropriate congrats. “My son is getting married!” More appropriate congrats. It really is all about them..even when I throw in a comment on email #372, mentioning that I can’t go somewhere because ds had a bad day or ds has a new therapy appointment. It’s an ongoing thing, and the Christmas card non-response is just one example that shouldn’t disappoint me, because it’s only a card, yet it makes me sigh…one more opportunity for someone to express concern a long friendship should engender, but doesn’t.

 Let me preface this by saying that I am one of the last people to say that every email deserves a long reply or that every picture received requires a laundry list of compliments or questions. People are busy. Life anymore is demanding. Even the most patient of persons can suddenly find themselves so inundated with day-to-day tasks of living that they don’t have time for basic courtesies. That’s okay — but when it happens consistently, constantly, and occurs in every communication, there’s a problem.

Autism used to be one of those things people didn’t talk about a lot. It was the thing that existed but was ignored, the proverbial elephant under the rug. Or like one of my favorite silly but much-needed-laughter-inducing movies, “Scary Movie,” where the Scream character is hiding behind the curtains with his feet sticking out and the blonde girl on the phone saying “I can still see you,” with the character seeming surprised. Awareness has come so far that it no longer seems to be the elephant under the rug, but that doesn’t mean it’s the elephant involved in our discussion either. Many times, it’s the elephant sitting right next to the person who doesn’t have to deal with it firsthand. They know it exists, they look at it from time to time, but can’t quite figure out what to say — so they say nothing, ignoring it even though it may bump into them as it jumps around on the couch, or it may interrupt the conversation when it has a meltdown or it may tell them they smell funny. How people can ignore this is beyond me, but some seem to have it down to an art. (And I realize that in some cases, people just are so self-centered, it has nothing to do with the autism, though I think that’s less common because many people find time to ask about one child or something else going on. It’s hard to believe they run out of time one sentence shy of hitting the goal line.

So just what do I want? (I apologize for my prolific use of the word “so” today. It just seems to fit. So, I’m going to use it a lot.) I want acknowledgement. I don’t want your sympathy, your pity, your help. I just want acknowledgement. My son is a person. He is not autism. He may be autistic, but he is an autistic child. An autistic boy. My autistic son. Notice the qualifier in each of those sentences? He’s a person. Period. His autism changes who he is, helps make him who he is, but he’s still a seven-year-old boy. If someone has a seven-year-old boy suffering from a health issue, people generally ask how he’s doing. But if he’s got autism? Many people simply move on to the next topic. “Beautiful picture!” or “Congratulations to your daughter on her piano recital!” or “How’s your older son doing in college?” But “how’s your son doing?” Bzzzzt.

So, really, what is it I want? It really is as simple as saying “How is your son?” Just because I don’t mention his autism doesn’t mean you can’t mention it. I’m not ashamed of his autism, nor am I afraid of discussing it. I don’t expect you to phrase your questions perfectly if you aren’t dealing with autism, because I know I knew little-to-nothing about it at one point. I don’t expect you to necessarily understand the problems or joys we may be experiencing, but that doesn’t mean we’re worthy of being ignored.

In her book “Louder Than Words,” Jenny McCarthy mentions that when you announce your child has cancer, people show up with food and offers of help, but when you announce your child has autism, the same doesn’t happen. In our case, we had people get impatient with our refusal to maintain the same social schedule, and we had people refuse to try to understand that our son’s explosive diarrhea made it impossible to brave a trip from the confines of the house. People weren’t openminded enough to listen to the explanation that ds “didn’t look autistic” or “didn’t act autistic” at a certain time or on a certain day because we’d bent over backwards to control his environment enough so that he didn’t have a major meltdown. They weren’t willing to learn that we had to pick our battles — yelling at ds because he wouldn’t eat his dinner wasn’t even a consideration when we had to focus on just getting him through a day at a crowded event, where the noises and crowds and smells were causing an internal pileup that would explode later when he felt safe. But I digress…if people don’t understand autism, or aren’t willing to learn, they simply stog being interested. They stay in their cave of “if they’d just learn to parent him differently” or they think, well-intended, ”I don’t want to say the wrong thing, so I say nothing” or they simply say nothing and simply stop inviting us places. We wonder — do those people think that he’ll cause a problem at their party? That he couldn’t handle it, so exclusion and ignorance is better? That he is, or we are, too stupid to notice that he’s left out?

So (there it is again) if you have a friend with an autistic child, or a neighbor, or an acquaintance, or a relative — take a leap. If you’ve not asked about the child in a long time, or ever, try it. I highly doubt you’ll be met with a leap of joy and “WOW, you actually ASKED about him!” Instead, you’ll probably get a quick hesitation while they realize you asked, and a hesitant reply to gauge if you’re really interested. If you are, they’ll know, and you’ll have given a stressed-out or busy, but proud parent an opportunity to talk about a child they love more than life itself. You’ll have tightened a bond with this person much more than you’ll ever know. Maybe it won’t bridge a gap that lack of apparent interest has caused, but we parents are a lot more resilient and forgiving than you may think. We simply don’t have the time and energy to hold a grudge or be hard-hearted. We’re tough, and we know that life happens, and because we don’t want our children judged unfairly, we tend to be less judgmental. So….give it a try.

Me, in the end, I’ve been fortunate. We had a few friends pull the disappearing act in the beginning, unsure of what to do. But it strengthened our bonds with many others, and we found our social circle increasing after we gave others a chance. Some of the initial isolation was our own fault; we simply didn’t want to deal with the stares and ‘what the heck?’ comments (amongst others). We decided to spend our time on our children. It took a very good friend of mine to sit me down and tell me, outright, that I needed to give others a chance, to remind me that people loved us for who we are, not what our house looked like mid-tantrum, and that our son biting me or screaming odd things or messing himself was not going to scare true friends away. She was right. Once I let down the guard a bit, things quickly improved. Now we have a wonderful group of friends to socialize with — they don’t judge, they don’t tell me how to parent (though we talk about parenting a lot), they don’t shake their heads, they don’t hang their heads in shame if ds acts out when they’re with us in public, and they jump in to help. They offer to watch our children so we can get out. They show up at the hospital when dd has a seizure or when ds is sick. They call even while traveling to see how things are going. They offer to run errands, and most importantly? They invite us to their home or to join them on other events. They advocate for my son, they speak up for him, and they love him unconditionally. When he hugs someone out of the blue, they know the excitement we feel. When he gets an award at school, they are happy for him. Those are the only kind of people we want to hang out with anymore. And those people, they are definitely not the few who can’t insert the one quick sentence at least every six months, “How’s your son?”

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1 Response to "How’s your son doing?"

This brought tears to my eyes. We still don’t go out. We still don’t have friends. We have two children with autism. And if we can, we celebrate a breath of empathy from her, or a tad of responsibility from him. And we don’t go to noisy, overcrowded places.

How do you compete with all those great accomplishments? I was sitting in a museum one afternoon just thrilled my daughter had asked another child to play with her, at the age of seven, when she hardly spoke to anyone. The woman next to me started talking about how her son of the same age had just auditioned for some international music school and been accepted. I felt crushed. i shouldn’t have. But I did.

Better to stay insulated and still be able to appreciate those small victories as they come.

babs

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