August 3, 2011
This past weekend Jeff and I hosted our annual summer pool party, an event which pretty much encompasses the entirety of our entertaining forays for the entire year. It’s not that we’re anti-social, it’s just that it’s been complicated at times to host people, provide food and a modicum of decent conversation, and simultaneously keep both of our kids alive and reasonably happy. Recently however, in fact just over this past year, both boys have finally decided their lives are pretty fabulous after all. Since their behaviors have been seriously reduced, we’ve had the energy to invite people over more frequently, for what we sincerely hope passes as “a good time”.
At least, that’s the goal.
I’m fairly certain we achieved that milestone on Saturday, what with the almost sauna-esque pool water, crystal clear skies, and abundant wine and cheese our NY friends tote with them annually that I swear tastes better than anything we could procure in Jersey. For once the parkway gods were kind, and traffic didn’t plague either family as they wended their way down from northern regions. All seven of our progeny played well together, which is lovely for them, and most importantly, allows the grown-ups the chance to reconnect and relax.
Which, despite the pretense of having a pool party for the kids, is really why we hold this bash in the first place.
Most of the people who graced our outdoor tables this weekend have known each other for over twenty-five years, with myself and one spouse constituting the “new-comers”. Trust me, it’s a bright crowd, constituted of two brilliant lawyers, a spouse in telecommunications, and a woman who does something with money in three languages and fifty countries that my little blond head will surely never comprehend. If you think I’m selling myself short, you should know that for the space of several seconds this Saturday I couldn’t remember whether or not our house has Wi-Fi, and that was prior to the second wine cooler.
I look forward to this little fete we’ve carried off going on six consecutive summers, in part because the conversation is generally scintillating (keep your wits about you if you want to keep up). I also enjoy it in part because it’s a glimpse for me of what my husband must have been like in college, pre-autism, pre-employment, and pre-responsibility. I love watching the weight of the world, his often very difficult world, slough off his shoulders even for just a few hours. I’ve also come to enjoy this event so much because their comes a point in every marriage where either your spouse’s friends become yours too, or they are forever relegated to the polite but cordial corner of “Jeff’s college friends”, etc. Fortunately, we transcended that barrier years ago.
Should Jeff and I ever divorce, I would insist on shared custody.
There are more serious reasons why I anticipate this annual gathering however. The one that comes forefront to my mind is that for years the mainstay of our conversations with these couples revolved around autism, its issues, its conundrums, and most importantly, the devastating effect it was at times having on our family. None of the adults have more than a passing connection to the disorder in their own respective lives. Despite this fact, they’ve shown us such an abundance of compassion, and yes, comprehension as to its import for us, that it lifted our burden just a little, even for a few short hours. Collectively they asked questions because they truly wanted to know how it was for our family, how the boys were, what the daily rigors of this chaotic life often entailed. They really wanted to know if we were coping. Sometimes we were. Often, we were not. Either way, kindness, acceptance, and a genuine offer of “we don’t know how you do it” were always offered at table.
At our last soiree one of our crew (who writes such a fabulous Christmas anti-missive it’s worth befriending him just to be on the mailing list), felt deeply inclined to pen his ideas on how best to help families through the ordeal of autism. He promptly returned home, ruined a good night’s sleep for his lovely spouse by rousing at 3:00 AM, and created one of my best “guest posts” ever, right up there with the erudite contributions of Susan Senator and Jess from Diary of a Mom, and that’s some elite company. In general, I prefer not to recycle material. This piece however is pretty fabulous and worth repeating, particularly as I abandoned Guest Blogger Thursday a while back due both to sheer laziness and a lack of desire to harass people. It won’t be resurfacing again, and I think it should have its day once more.
So to our friends, and particularly to Brian, “Salut”, and thanks for your continued friendship, and especially these words.
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 diagnosis 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 Justin, 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. Back then the “R” word was used casually, and I still have to be mindful to avoid it.
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.
July 21, 2011
“Mom, will my friends be here today?” my smallest son inquires from the back seat of my SUV, straining forward in an attempt to escape the clutches of his shoulder strap so he can begin his morning. My failing eyes stare ahead to his camp’s playground where the “starfish” convene as the program commences, and I can see at least three or four little figures in the distance as I reassure him he won’t be alone. Zachary has summer school four mornings a week in July, and I like to send him to camp on Fridays in part to give me a break (let’s be perfectly honest here), and in part to keep him familiar with their routine until he returns several mornings a week in August. The only issue with Fridays in the past has been that often kids are absent, and at times Zach’s practically been the only camper in residence. He does have an aide with him, but as fun as playing with a twenty-year-old adult can be, it can’t compare to a pre-schooler.
Or so I’ve been told.
I slide out of my seat and walk around the back of the car to free him, and he bounds out of the vehicle even with my death grip on his shoulder, the one I employ to keep him safe from the proximity of an extremely busy road. His hand seeks mine as we stumble slightly onto what seems like moving tarmac on this unusually hot summer day, and as we cross the parking lot, I hear it in the distance. Through the sounds of a hundred other campers sampling the delights of the outdoors I hear a chorus of cries, and look up in time to see three little girls pumping their swings to the heavens, screaming in complete unity, “ZACHARY IS HERE! ZACHARY IS HERE!”
Trust me, they were yelling in capitals.
I look down in time to see that irrepressible broad grin dominate my child’s face, and Zach squeezes my hand tighter as he looks up at me and says, “Mommy, my friends ARE here today. Those girls are my FRIENDS!”. It’s all I can do to keep hold of him as we reach the latched gate, and as the criss-crossed steel door swings shut behind him, he makes a dash for the swingset, his aide close behind him to prevent him from being kicked in the head. We’ve learned the hard way that when Zach is in the thrall of enthusiasm, common sense leaves the building.
I’ve also been told that’s not necessarily autism, that’s just being four.
I sign my boy in, joke briefly with the camp’s director about what a rock star he apparently is, then head back to my car. After making certain one of my Jersey brethren is not heading toward my trunk I slow my SUV as I round the corner to the exit, and Zach abandons his loves momentarily to “chase me” along the fence, blow me kisses, and gobble the ones I unceremoniously toss back to him. At this moment in time, he’s still very much his momma’s boy.
And the joy of this is, I can say with absolute certainty, it won’t be this way forever.
I know with this child, the “mom and dad are the world perspective” won’t dominate his thinking for many more years, perhaps four or five at best. This reality was driven home to me harshly when I taught in Virginia, and sometimes ate lunch with several of “my girls” at their request. I can recall one such meal where we somehow started talking about parents, and I remember asking these amazing ten-year-olds, girls-you-longed-to-adopt/would have been friends with if they were twenty years older ten-year-olds, if they still enjoyed their time with their caretakers. A moment of silence followed in which one child reinvoked the “circle of trust” we employed during these meals, and I can remember her looking at me straight in the eyes, and sweetly saying, “We love our parents. But we’d rather be online or hanging with our friends. We do it to make them feel good”.
I recall being a bit taken aback (after all, some of their moms were really cool, at least in my book), and inquiring as to when the girls began to feel this way. They regarded me a bit sheepishly and responded, “Nine. Eight. Eight. Seven.”
Seven? Really? Seven?
There were many such experiences I mentally “bookmarked” for parenthood over the course of my dozen year career in teaching, and this one has remained forefront in my mind. In general, we aren’t sun, moon and stars for our kids for that long, and that’s as it should be. I’m aware Jeff and I will probably play that role eternally for Justin, and that fact fills me with a sadness I doubt I’ll ever shake.
Also, there’s a huge possibility he’ll eventually grow bored with us. I wouldn’t rule it out.
This won’t be the case for Zach however. I admit, my mother’s heart is both thrilled he’s found friendship, and thrilled he’ll still forego these relationships to blow his mommy a goodbye kiss.
Happy Friday, Zachy.
July 11, 2011
Always a bridesmaid, never a bride. Just kidding.
This past weekend I had the honor of being chosen to participate in the wedding of a dear friend from DC, a friendship neither diminished by our five years apart since my relocation to Jersey, nor the two hundred miles of interstate that now geographically separates us. I was thrilled to be asked, and since it’s pretty clear my life is complicated, this says a great deal about the woman requesting my presence. I began six months ago to pull off the seventy-two hours of coverage required to keep both kids alive and happy, and due to the generosity of friends and family, we accomplished our goal. All went well, and my boys were thrilled to revel in the constant attention usually paid to them when their parents are out of the house. Jeff and I were equally ecstatic about the opportunity to sleep past 5:00, as well as the opportunity to string two consecutive sentences together without interruption.
Clearly, the weekend was a win-win for all.
I admit, on Sunday, when the cobwebs cleared a little and we were headed once again toward the duties of parenthood, I felt this post clamoring violently for attention in my brain on the long ride home. I took some notes as Jeff thankfully drove, and I struggled to retain my thoughts long enough to set them irreparably in ink. I find my little vignettes sometimes have a theme to them, and I also find that frequently the one I conclude with is not the one I had in my head when I began. To be honest, that could be in part because by the time I’ve finished I’ve often forgotten what I had in mind when I started. More often however, it’s just that my writing frequently takes uncharted twists and turns, and is yet one more thing I seem to have very little control over.
Much like everything else in my life.
I could tell you this post is going to be about unions and families, and in part that would be true. Despite our closeness, the first time I met the future husband of my friend was at the church prior to the rehearsal. We had a moment of rushed introduction where it was clear we knew a great deal about one another, a meeting of the minds which resulted in all of my hopes for my friend’s future being completely validated. Witnessing the strength of the connection between these two individuals, coupled with the way they complement one another in every aspect of their existence, was bounty enough. Watching the way two families blended together until they appeared one seamless stream of relations was an even further unexpected, and welcome, blessing as well.
Trust me, the proof is in the reception footage.
I could share with you that this post is about teachers (shouldn’t every post be about teachers), for I was fortunate enough to reconnect with a group of professionals who once comprised what my co-worker aptly describes as the “dream team”. This compilation of educators was ever-changing, never static, but came together during what we think of as the “Camelot years”, which took place under the direction of two different but dynamic principals who in their own unique ways pushed us to their limits. For the most part we were young, as yet unencumbered by our own progeny, and simply fueled by a singular passion to create the greatest educational clime ever. At our facility there were operas created from scratch by ten-to-twelve-year-olds, productions eventually performed on the stage of a local university. We held a school-wide museum that covered every square space of the massive second floor designed to accommodate half of the twelve hundred students who went there, complete with live exhibits and docents. Creativity simply had no limits.
And yes, we’re talking public education here.
I could inform you this post is about acceptance, as I realized that eight years have indeed transpired since I gave birth on that benevolent and prophetic spring day so many years ago. While I was attempting to convince my children that the world was indeed a fun place to reside I’ve put my career on hold, and in the process been eclipsed by many of the professionals I worked with “back in the day”. I was seated with the young woman brave enough to take over my classroom for those last seven weeks of school while I took maternity leave, a lovely individual who is now an assistant principal helping to command an entire school and every classroom within it. The bride herself was my mentee many eons ago, and has recently conquered yet another step in the steep ladder of educational administration herself. Bossing around big people was once my dream too. For a variety of complicated reasons, in all honesty, I can say it is unreachable for me now.
And finally, I can also say I’m at completely at peace with this truth.
Obviously, today’s post is about all of these things, but in the end, it will really be about friendship, about a hard-won and enduring bond. It’s about finding those people in your life who will remain with you no matter how infrequently you call or visit, or how tired you seem when contact is finally made. It’s about a woman without her own children, who nevertheless comprehends the complications and disconnects of this often chaotic life as much as it’s possible to do so. It’s about a foundation built so solidly on shared experience that new friends, careers, and even husbands will never take it down.
Finally, it’s about her generosity of spirit and a limitless compassion I’ve come to depend upon over the years, and know without reservation will thrive with resilience in the years to come.
I’ll close this now with the tag line from my mother’s wedding toast (I’m sure she won’t mind I’ve stolen from my own words), as well as heartfelt wishes for a wonderful honeymoon to be spent in the redolent beauty of Hawaii (good luck in that shark cage).
Karen and Mark, may you live long, love well, and laugh often.
I am completely confident you will.