August 26, 2010
Guest Blogger Thursday
Through my Thursday posts I’d like to provide a more widespread forum for parents, family members, and practitioners of children with disabilities to provide practical tips for parents, as well as a place to share their views on raising a child with a disability. These contributions will be their ideas and stories, and not necessarily reflect the sentiments of those of autismmommytherapist
Today’s guest blogger is Brian Carr, a family friend, lawyer with a heart, and an exceptional writer to boot. Brian (and his lovely wife Jeanne) were two of the innocent bystanders I conscripted to read my original manuscript last year, and the fact that they still speak to me is a testament to our collective friendship. There are some wonderful insights in his missive today, and frankly, I think multiple copies of the second portion of this piece should be dispensed to all parents whose children receive an autism diaganosis so they can pass them out to friends and family (it’s just that good). Many thanks to Brian for giving up sleep to write this (I would never be that nice), and enjoy!
To Guest Blog or Not to Blog. By Brian Carr
“How’d you like to guest blog?” Kim asked my wife and I. That hadn’t taken long. We’d barely sat down with a drink and some chips, having shunted the kids to the pool, when Kim was already asking this question.
I suppose it was my own fault in a way. Saturday was our annual pool party pilgrimage to Jeff and Kim’s house. This month my wife Jeanne and I will have known Jeff for 25 years (since college) and Kim for maybe five years less. It was our job to bring the cheese and whatever else old college friends can offer. Mostly relaxing, casual and clever chat, the easy conversation you slip into with those who knew you before you had to pretend to be adults, when ill-conceived escapades ended up on as fond but secret stories, not broadcast on Facebook to future employers and the world.
It was my fault because Kim asked me how I was doing, and I’d tried to generously volley, saying, “Fine, but how are you? – I’m not the one pushing the rock up the hill.” After a short update on her blog, out came the guest blog question.
Guest blog? Was she honestly asking me to do something just 15 minutes after getting here? Wasn’t it enough that I’d spent the early afternoon the last place I wanted to be, stuck on the Garden State Parking Lot, crawling through traffic all the way from New York. Our two girls 11 and 14, were keen on their pool, but surely there has to be a pool that doesn’t require a 5 hour round trip. But it was a trip I made happily, if grumpily as we sat in traffic, a slog relieved only by a high speed motorcycle/state trooper chase up the breakdown lane, the only possible place to get a speeding ticket that day. The cops are probably still writing tickets.
“No,” I said, pretty quickly, “I don’t know anything about autism and I’d have nothing to say.” Subject changed, we spent 5 or 6 hours of enjoying beers, burgers and good company, then headed back to New York. Around 2 am I woke up, thinking about the guest blog thing. Ideas? None. What do I know about this?
I’d managed to write something before which was helpful, but that was totally inadvertant: our Christmas-time family “newsletter” 5 years ago. I wrote it because…. I hate family newsletters. Which is why mine explained that I’d had such a bad year, having read in their holiday missives how wonderful everyone else’s lives were, about their great jobs, vacations and most of all their perfect kids. The sense of inadequacy, I explained, was driving me to drink, what with my wife who was tired of me, our un-exceptional children, disappointing vacation and generally dull life. After 2 pages of moaning, I concluded by saying that, “while things could always be better, we remain hopeful and most of all thankful, especially for our kind, forgiving, self-actualized friends. From your newsletters we only hope to glean the missing clues to a happier New Year.”
We got three reactions to this little stunt. Some thought it was funny. One couple, close friends, immediately called, offering to help put together an intervention. Seriously. We’re here for you, they said. Which they are, bless them. (Just for the record, they’re earnest newsletter writers. Most earnest.) And then there was Jeff and Kim.
They dubbed it one of the highlights of their year. Almost at the end of their rope from dealing with Justin’s diagnosis, they explained that, that year at least, the circumstances made it too painful to read the otherwise welcome news about everyone else’s children. Hearing about someone’s comic disappointment on the other hand – the first we’d laughed in ages, they said. And so it was that I got to be useful again to them that night, just by listening for an hour or so over drinks in a New York City bar on a rare early day away from autism, as they described their weariness and isolation from having to tend to Justin constantly, the endless bureaucratic struggles for his care, and how I’d accidentally been helpful in print.
But what to say now? About the most I’d had to offer Jeff and Kim directly on topic was early on, putting them in touch with a former high school girlfriend and her husband whose oldest son was autistic and who were very involved in research fundraising. If nothing else, it was someone farther along in dealing with the situation who might offer some words of knowing advice.
Maybe someone could offer a few thoughts about how to interact positively and help out a friend or acquaintance with an autistic child. After thinking a moment, I had to assume this has been done before – my wife says there are no more original thoughts (I’m scared to ask her whether her pronouncement was one since she’s always the exception to her rules). Rather than research the topic to prove her right yet again, and because different things work for different people, I decided to list a few of my own thoughts, such as they are, if only to remind myself of my own goals.
After mulling the categories, it seemed that there was a decent overall rule of thumb, which is not a bad place to start: do those things you would to help someone with any other long-term medical condition.
Don’t withdraw. No matter how casual your relationship, no one wants to think that their child’s condition has made people pull away. Some people don’t deal with illnesses and serious issues well, but you can be sensitive to how you go about things if that’s the case.
Make yourself available. Don’t be afraid to offer. You don’t need to be there all the time for someone in order to be helpful. It’s a comfort to hear someone say that you’re there for them whenever they need you, even if they never take you up on it. Let them decide when to ask. You can discuss when they do whether you’re comfortable with the request.
Don’t contact them every time you see an article or a news story. (There was a featured story in the New York Times just today). Chances are, they’re already reading everything they can about the subject and thinking, if only I researched more… And everyone else is pointing out the latest article. Read a few yourself and you might notice that most articles are general and don’t have anything new or specific to offer. (Probably not this one either for that matter).
Every child is different. Remember that just because someone else you know has a child who’s made great progress doesn’t mean it will translate or apply. Chances are, they’ve researched the therapy in question and considered it. Someone else’s success is great for them, but that’s a painful reminder.
Give them a break. Autism is a full time job for parents. Marriage, work and parenting are hard enough on most couples even without the challenge of trying to help a child to live with, if not overcome, autism. Whatever you can think of that will help ease the load is probably a good idea. Visit, call, send joke spam, send a random gift basket or something for no real reason. Some part of their day has to be their own.
Educate your own children. If you’re going to visit someone with autistic children, explain to your own children what to expect. Children with disabilities are often mainstreamed today, so your children are probably in a better position to understand this than when I was kid.
Don’t brag or complain. Parents of children with autism don’t expect everyone else to stop having their lives which are autism free. By the same token, they also don’t want to hear someone brag about their perfect children, the overcompetitive striving we often default to as we begin plotting almost from birth what college our child will attend. Complaining about how hard our own minor troubles are doesn’t seem to go over well either. Instead, show equal interest, perhaps let them lead the conversation to topics that are comfortable.
Pray for them. I wasn’t much for praying when I was younger but that’s changed over time. Thinking about things beyond myself helps keep the big and little things in perspective, and the details become less stressful. To me, praying is like the moon. It’s far away, but it affects the tides, the spin and even the shape of the earth. If you can, tell them they’re in your prayers. Even if you’re not religious, tell them they’re in your thoughts. How many of us watch TV and cheer on our team as if it has some invisible effect on the game? If you can believe in that, why not cheer on a friend. It’s helps to know someone is pulling for you, like your own fans, your very own moon.
Write a guest blog if you’re asked. A day off from blogging might be a nice present. This one’s for you, Kim. Enjoy. You’re all in my thoughts and prayers.