Tromping Off to the Emergency Room…

He’s fine. I’m pretty sure.

It’s just a dislocated knee from, to quote the boy, “too much dancing and jumping.” The camp nurse, MB, broke it to me slowly, which is good because I was driving when she called to say that his knee was injured and the ambulance was on its way. It was all I go do to stop myself from getting on the highway and driving west toward camp. It didn’t matter that it would probably all be taken care of by the time I got there – the thought of him in an Emergency Room without me sent my stomach through the floor. But I held it together and kept my sense of humor, laughing when she told me that, when they went move him he glowered and them and warned, “Don’t even think about it!” I’m sure there was plenty more of that before the night was out.

As our strange brand of luck would have it, he already had some ER experience under his belt. Thanks to an emergency appendectomy in 2007, he’d already been to an emergency room, already had pain killers, already had x-rays and an I.V. Some of those memories were traumatic – courtesy of an atrocious phlebotomist – but we had worked them through for the most part already. But in 2007 (five years ago to the day from this event, now that I look at the calendar) I never left his side for days at a time. Now all I had was a guy named Tom the EMT at the other end of a cell phone and a counselor named Liam with a fabulous British accent, both telling me that he was fine. I had gone from not trusting anyone with my kid to allowing two complete strangers to ride in an ambulance with him  (that part was new – I think he thought it was cool) and advocate for his care.  How this happened and why I didn’t drive through the night to get there I am still trying to figure out.

But I had no choice but to ask a lot of questions and hope they got the best care they could. The plan was to give him some pain killers, pop the errant knee back into place, take some more x-rays to assure that nothing else was wrong and send him tromping back to camp with a brace and a boatload of Motrin.

I spoke with him on the phone twice in the ER, and he sounded pretty good. At one point he said, “May I return now?”

“Oh, you’ll be going back to camp in a while, don’t worry.”

“No, I mean come home.” No tears, no angst in his voice, just a simple question. I had to answer fast, since any hesitation would reveal my ambivalence and would be taken as an opening for negotiation. I wanted to say yes and so I can’t remember exactly what I did say, but I know I laughed and assured him that he would be fine among his friends at camp and added that we would be visiting soon anyway. I am so proud of his bravery in the face of all these transitions I could not possibly let him think that getting hurt was the way to come home. I have too many pictures of him smiling and it was too close to family day to let what appeared to be a recoverable injury undermine his summer, even if he didn’t quite see it that way.   No worries, I told him.

Family day is coming up. We’ll check out the knee, check out the boy and see what comes next. Our turn to tromp.

Second Phone Call: Talk to Me

Damn the communication disorder. We agreed on early morning phone calls because we wanted the call to be as far away from bedtime as possible to avoid homesickness, which is more likely to strike at the end of the day. But now he comes to the telephone sleepy and hungry, ready for breakfast instead of conversation. Sweet and groggy, he gives maddeningly short answers.

What’s your favorite thing? “Evening swim.”

How’s the food? “Good!”

Are you having fun? “Yeah.”

What do you think of camp? “Awesome!”

I know these are good and encouraging answers, but I want details. Reassurances. Stories. Questions about how things are at home. I remind myself that I, too, am monosyllabic at 8am. More importantly, this isn’t any different from the conversations we have over the phone when he is here. I know that he is looking at his counselor as he speaks, waiting for prompts, and that the short answers mean that he is not getting prompts because they know I will hear it if they model answers for him. I also know that if he really wanted something, he would tell me. All of that is good, but at the halfway point of a 7 week separation I can’t help but want more. I am being unreasonable.

So the voice, with a trace of sleep in it and a smile behind it that I can detect, will have to suffice. And I blog about because as I write it down it gets more encouraging in the retelling.

What are doing today? “Having breakfast.”

What’s for breakfast? “I have no idea.”

What do you want for breakfast? “Pancakes.”

What do you think of camp? “I’ve been here a lot of weeks!”

Is that okay? “Yeah!”

We are coming to see you on family day! “Good!”

We will all give lots of hugs. “Yeah.” <heavy sigh>

We love you and are so proud of you. “I love you, too!”

We can’t really ask for more than that.

But a letter would be nice…

Take Me to the River

It is easier to leave than be left. When you are the one leaving there are no empty spaces to fill – you can become immersed in the going, in new environments and sights and experiences. And so I took the opportunity and, for a few days, we left our partially empty nest and explored a brand new place. I chose a destination that I always wanted to visit but that held no particular sway for my boy and would at least not completely bore my remaining children: the Hudson River Valley. It had the added appeal of being a place I know my father would have loved, with the river, the railroad and the legacy of FDR. This post, 20 years to the day after he passed, is for him.

Let me say now that my kids were fabulous sports and that I told them this repeatedly as I stuffed them with food they loved.

Everyone deserves to get their way sometimes, and I made sure that we all had a say in what happened each step of the way. I fed my inner history geek with visits to Franklin and Eleanor Roosevelt’s sites, the Vanderbilt Mansion, historic Hyde Park and charming Rheinbeck, NY. The weather was sweltering but the views were fabulous, and I will never forget a golden hazy afternoon driving down the Taconic Parkway toward the river – we were the only car on that undulating road, and it was as though we were moving through time toward the bygone days of FDR, the Vanderbilts, and the railway chugging along the river, with each view painted to perfection by someone perched upon the hills. Oh, that I had been driving something other than a minivan, but no matter.

I was determined that this summer would mean something more to us than surviving camp and preparing for college. I wanted to give a little of what I got from my childhood, trailing my mother though cities and museums and restaurants, only half listening but loving being part of something that seemed bigger than me. I like being where things happened, I like knowing about those places, I like sharing what I see and marrying it with what I read. All of this generally requires a lot more talking than the autistic mind would prefer, and so my inner narrator has in many ways become the blogger (see also, Lettershead).

The complicated story of the Roosevelts was not lost on me as I toured the vastly different homes of Eleanor and Sara Delano Roosevelt. Each of them doggedly pursued the agenda life set before them, with many changes of course and myriad joys and disappointments along the way. Both raised in privileged surroundings, one used money to exert power, the other to buy whatever freedom she could get for herself and selected others. We looked at their things, looked at their spaces, and talked about their influences on the presidency and the nation, independently and through FDR. It reminded me that there is only so much you can plan, only so much you can expect to preserve, and that if anything is to prevail it is the spirit. All else is fleeting at best.

Photos: Overlook of the Hudson River from the Vanderbilt Mansion, Hyde Park; The Eveready Diner, Hyde Park; The stream at Val-Kill; Corner walkway of Springwood, the Roosevelt Home; View of the Stone Cottage from Val-Kill from Eleanor’s Val-Kill cottage, with ramp for FDR in the foreground.

Day 21: Forbidden Fruit Out on the Table

And so begins another week, boyless.We are holding his place for him even as we try to take advantage of being able to do things that it doesn’t make sense to do when he’s home. You never know what you are going to miss, that’s for sure, and you never know what small temporary joys will pop up – like being able to leave a bowl of apples and peaches on the table. Other items are scattered around the kitchen that aren’t typically in plain sight – bananas, french rolls, hot dog buns, home made chocolate chip cookies. He loves them but should not eat them – they cause physically mild but emotionally distressing reactions – but if they are within reach he cannot consistently resist the temptation (kind of like me and chocolate). It almost seems disrespectful to have them laying around; like an open bar to an alcoholic. It’s not that big a deal but it is nice to have the food where I can see it – how many rotten apples, black bananas and moldy breads have I found in drawers, closets and cabinets over the years? I hide the food better from myself than from him much of the time. Often I just don’t buy what he shouldn’t eat but when others in the family request it I think it is important to respect their preferences, too.

The place holding is literal as well as figurative – his seat at the table is marked by two ceramic hearts he made last spring, professing his love of art and of us. I can’t predict how much he will have changed when he gets home, but I am certain that I will be different having gone so long without him. The hearts will prevail, though, that I know.

First Phone Call: Permission to Breathe, Granted

Week two. We have proof now. He is still the same boy we dropped off last week. He is as strong as we knew he was and so much stronger than the school experts – and I use that term loosely – said he could be. He is always capable of throwing us a curve but he will never let us down when it really counts. Everyone who knows him well knew he would rise to the occasion.  The voice is still a little flat, the answers short but sincere, and no discernible traces of angst. He is still wary, still not entirely comfortable with being so far away from home (I see the Scooby Doo he smuggled to camp tucked under his arm now and then, a telltale sign) but he sounds safe and brave and proud. And in the typical role reversal he has given me permission to be braver and prouder than I was a week ago, because I have as much confidence as I have ever had that he feels and is safe. These are rare moments, indeed, for in this world there are few places that provide both haven and meaningful activities for people with developmental delays, and the older they get, the narrower the choices become. So many people are working to expand the options and opportunities for adults with autism and I can see that I will soon be joining them in building a community of which we can all be proud. I still don’t know what it will look like but from the sound of his voice it appears, for the first time, truly possible.

A Woman Adrift

I thought that a break from managing autism would mean less stress but what it has created is a vacuum in my attention span and total emotional disequilibrium. The opportunity to not build my day around the boy has made the opportunities that emerge less easy to embrace – maybe it’s latent exhaustion, or latent guilt, or just a loss of identity. I did not expect to be happy for him to be away, but the sudden moments of devastation take me utterly by surprise. There have been plenty of moments of grief in my life, but this physical emotional ambush is entirely new to me; I need to be able to identify the signs so I can see it coming or my family will stop going places with me. Add to this the realization that, while I was building my attention around him, everyone else built their attention around other things and people. With him away, I feel excluded. I haven’t yet figured out how to reinsert myself back into my own life. I’m lost, boring, and stupid.

And yet these are good problems to have because it means that he is doing well at camp and I don’t have to focus on making that situation better at this point. I recognize the luxury of breaking down and cannot decide if it is a process I have to go through or one I have to beat back.  Depression and self reflection and recovery all sometimes seem like the same thing to me. Healthy time and space or withdrawal from life? It all depends on the  moment, doesn’t it? On the quality of the thought? Sleeping too much or too little? I seriously do not know.

All I really do know is that an hour of absolute quiet here and there is what I always crave and is what is allowing me to process these thoughts now. No music, no TV, nothing but the humble spin of the clothes dryer and an open window that lets in the summer breeze. I think that if I can have these moments for part of every day I can get my groove back. And as I sit before my keyboard and type this I find – yet again – the startling image of me as my mother. Drinking coffee and typing, thinking, ruminating, and inexplicably driven to write down what is on my mind. How is it that I work so hard to cut new paths only to find myself on these well worn tracks? Am I carrying on a valued tradition or am I just a cheap knockoff of an extraordinary person? I can’t say that I am living in her shadow; our lives are so different. It’s more of a behavioral blueprint that my brain references without my permission. It is the best and worse part of me that makes me overly analytical and controlling and keeps me from being in the moment and thus I never appreciate anything fully unless it’s in hindsight. But I am really good at hindsight, I must say, which can make me good at planning, too. But this constantly looking backward and forward is making me dizzy and literally unable for focus on what is in front of me.

My sister has advice that I remember at times like this. She talks about making sure that you structure your life so that you are in “moving water.” I find this concept incredibly helpful because it can mean so many different things. When you are a stay at home Mom the difference between moving water and a riptide isn’t much. I remember vacations on the Carolina coast when I felt like I was standing still, bouncing gently in the water, enjoying the salt water’s ability to make the baby in my belly float independently.  And then I  realized I was a half mile down the shore from the beach house that was in front of me a few minutes before, carried south by swirling waters made stealthily swift by an approaching hurricane. I recall the sensation of emerging from the water, feeling the satisfactory weight of the baby settling back into place, order restored. I made my way back up the beach to the place where my life waited for me.

See how that happened? I started out in one place at the top of the post and now here I am making a metaphor out of a distant vacation. Equilibrium restored, for now.

Day 11: Side Effect

We are down to a skeleton crew of three, with Dad traveling and boy at camp. Dinner is never this simple when there are gluten-free folks in the house. We ran summer evening errands at the end of a golden day and picked up pizza on the way home, which is more of a treat for us than it is for some – and we like it that way.

Time, now, to park in front of the computer and wait for daily photos posted by camp.

Day 5: Coping Mechanism duJour – Play Journey’s Greatest Hits at Deafening Levels.

It’s true – we are making extra loud noise just because we can. A few nights ago night we took strange special joy in letting our other two kids bicker and poke each other incessantly in the car, something we could seldom do because the sensory overload would be too much. And when my husband downloaded and cranked the volume on Journey’s Greatest Hits I didn’t need to ask why or tell him to turn it down. Journey is music from the past, with memories entirely adolescent and totally devoid of any reminders of the empty bed in the house.


It takes me back to Michigan summers, the Stony Lake Bar, Vernor’s, fried mushrooms and double cheeseburgers. Journey playing on the jukebox, us playing Ms. PacMan in the corner, and an endless stream of Camp Miniwanca gossip. My friend Sooz and I contemplated the merits of VW busses held together by duct tape, Gore-Tex, and why anyone would say “INsurance” when they meant “inSURance.” We laughed at teen-aged girls who earnestly discussed the finer tasting points of their favorite beer: Bud Light. I had a psychic reading done in that bar that, in hindsight, told me absolutely nothing. Sooz is still in our lives, witty and wise in ways we could never have foreseen.

And there were late nights driving through the Western Michigan corn and asparagus fields, windows down, music blaring. One night the moon was so large and full we turned off the headlights and drove only by the light in the sky. I still have my National Asparagus Festival tee shirt, the one that says Every Inch Edible – now that my eldest is the same age I was when I did and wore such things, I recommend neither the no-headlights trick nor the slogan on the shirt. But we sure had fun.

And now we drive through New England orchards in broad daylight, windows down and Journey blasting again as my teens sing at the top of their lungs and play air guitar – and when we go to the movies they make me play Ms. Pac Man because they can’t quite believe that I can kill at it.

Maybe everyone else has been doing this all along – cutting loose, being loud – but it’s new for us and it feels good in a way that keeps us from feeling sad about the boy we miss.

A Week of Milestones

The first week of July is full of memories; for most everyone this is likely true with the holiday but this year I am compelled to make a list:

  • 90 years ago our Mother was born (July 3)
  • 59 years ago our beloved Foxleigh was born (July 8)
  • 34 years ago we had our last 4th of July on the River in Cedar falls (July 4)
  • 34 years ago we moved to Saint Louis (July 8)
  • 30 years ago J&J were married (July 3)
  • 22 years ago I started my job working for the President of MIT (July 1)
  • 20 years ago Dad threw a 70th birthday party for Mom; that trip was the last time I saw him (July 3)
  • 19 years ago we bought our house (July 1)

And this year we took our boy to sleep away camp for the first time. It is hard to say how pivotal this year’s milestone is, but I am more conscious of it here in the moment than any of the others, that’s for sure. And the image that goes with it is of our garden, where 19 years ago the only blooms to be seen in early July were the lilies on the right; all of the rest we have planted and tended ourselves with the expanding sunlight, a lovely cascade down from the elegant Japanese maple. We found that by taking down a birch and a pear tree we freed up enough water to sustain the maple, green the lawn and provide sun for the perennials. We didn’t plan it that way, it just seemed right to trade shade for sun near the house and all of the other things followed.

Day 1: I Miss the Grocery Store Rules

Off to camp for just over 24 hours and everything was just fine until we went to the grocery store and realized I only have to make one kind of dinner tonight. No special burger, dog, or pizza, just the regular stuff. I was okay with all that – happy, even – then, stashed under the checkout on the way out, I saw the ice melt with the Road Runner on the package, and no one said “Beep! Beep!” in my ear. I realized that for the next several weeks I will not need to invoke the local grocery store rules:

  • No Road Runner sounds.
  • No Tigger bounces.
  • No yodeling.
  • No skipping.
  • No chasing.
  • No DVDs.
  • No Scooby Doo gummy snacks.
  • No buying every single container of lemon sorbet, box of Rice Chex, or package of gluten free chocolate chip muffins (one of each only).

There are dozens more and they will all come back to me every time I go to a different store. There will be days when the suspension of the rules will come as the relief it is supposed to be, but today there’s just an empty space where the “Beep Beep!” usually is.