I don’t know why it is that we get so tired of some things while others endure. The excitement of chases has been there since the first game of tag in the toddler days. It is a cumulative process; we watch, do and draw the same things over and over year after year, just adding details and getting better. A few years back there was an Open Season for Rabbits and Ducks sign nailed to a tree in our back yard. I love that he added the latin name for Wile E. Coyote – he really empathizes with him even as he delights in the Road Runner’s narrow escapes. “That poor coyote, he keeps getting killed, and that road runner is just far too fast.” There’s a metaphor in there somewhere.
I wish there was a simple answer to this question. Was it the right thing to do? Yes. Are we glad we did it? Yes. Did it result in miraculous, instantly recognizable changes? In some of us, yes, but how if affected our boy and how it influences our next moves to plan for his transition to adulthood I am still not prepared to say. We still need to assess his physical health with regard to his diet and digestive system not to mention the dislocated knee (which appears to be fine). We also need to benchmark his academic skills and assess his social development. The latter shows greater depth and fluidity, but I can see the potential for him to fall into old patterns with old friends. He seems generally more communicative and more cooperative, though we are still in the glad-to-be-back-home honeymoon period.
Those miraculous, instantly recognizable changes allude to those of us left to fend for ourselves, boyless, at home. My own angst has been clearly documented here, but it must also be said that for all of our hand-wringing the most surprising change was that things here did not change nearly as much as we expected. Special diets, elaborate toy tableaus and the occasional Gerald Mc Boing Boing sounds are not as disruptive to our lives as we may have thought. In our case, the burdens of autism are not nearly as heavy as we were lead to expect – when he was gone we felt more far more emptiness than relief. In earlier years we may have felt it more than we did at this point but I feel the need to point out that the camp experience was more about him being away from us for his benefit, not our need to be without him. Some people really do not understand that. And we do recognize necessity that our other children need to know that his independence as an adult is just as important to us as theirs, which is a point that absolutely must be made with both actions and words. In reality, the hardest part of the camp experiment is that it is so lovely to have him home that we are loathe to think about ever letting him go away again (for the record, he is also perfectly fine with that).
And there’s the rub. The urge to become complacent is, at this early moment, almost irresistible. But we must keep our eye the prize of independence, or whatever measure of it we can hope to achieve. He is vulnerable – we know now that he can endure a lot but we also know that he may be just removed enough cognitively that he might be forced to endure things that he should not. He was in an environment that we knew would not exploit his good nature – where else can we possibly find that outside of home?
So camp, in the end, did not give us as many answers as we might have hoped, but it is making us rethink our questions.
We went straight from camp pickup to vacation; now is the only significant length of time between June and December that we will all be together. There is a lot to process: camp, work and school transitions, the sudden loss of friends and colleagues over the summer. It seems I say in every post that we are learning a lot, but each time I write it I suppose I really mean to say we are learning unexpected things about the twists and turns our lives take, beyond what we have come to expect in the earlier years of raising children and getting older. The more I try to live in the moment, the more these unanticipated events seem to get in the way.
Even as I write a hurricane (Isaac) has popped up out of nowhere to bluster through our trip and set us back a day – it’s causing both excitement and anxiety, but right now the nearly empty beach is populated by just two people, Dad and boy out for a snorkle in a window of late afternoon sunshine between the bands of wind and rain. This is the revelation of the vacation for me. Usually too chicken to snorkel, the calm waters of Caneel Bay convinced me that even I could venture out into the reefs. Much as I am enchanted by graceful sea turtles and spiky urchins down on the sea floor, the most breathtaking sight is the beauty of our boy moving through the ocean. I have always known he is more content under the water than above it, but I never understood the truth of that until now. While I have to remind myself to breathe through the snorkle, he dives and darts down through the water with an ease that astounds. This is a moment I can savor and one I would give him every day if I could.
And when he comes out of the water he rests. And then he talks. And most of words and phrases are his – not scripted or non-sensical. He wants to know more about his friend who died suddenly of leukemia while he was away (we don’t have a lot of answers; we can’t make sense of it, either). He wants to talk about school and home and his sister going to college. The water has cleared the static in his brain and it reminds me a little of Oliver Sacks‘s stories of people who gain clarity and lose it again. Even though the increased fluidity does not last, the gift from the sea is a window into his mind, and I wish and wonder how we could prop it open a bit longer before the storm arrives, passes, and we go home.
We got the best hugs ever and spent much of the day just soaking up the feeling of being together again. It was hot and humid and so group activities where we could socialize and learn more about camp just seemed impossible – we strolled off in search of a breeze and found it on a hill overlooking the lake.
One look at his cabin made me feel so proud of our boy – living in close quarters in that heat (lots of fans) for so long would test the best of us. And of course this is no ordinary group of boys. They are quirky and sometimes challenging kids, and fortunately the counselors are young men with good hearts and lots of energy. It is clear that he copes by drawing – the walls next to his bunk are plastered with art in which every part of the paper is colored. Our girl found a little note written on the wall next to his pillow: “6 weeks can take forever and all summer.” At that moment it was hard not to whisk him to the car and bring him home, until I asked him what he missed most. He looked wistfully away and sighed. “Wireless internet.” Okay, he can stay.
And the reality is that he showed us he has the tools to stick it out for another couple weeks, and do so happily. His knee is great, he is taller (I think), more muscular (for sure), and much more self sufficient. He swims twice a day and has learned to water ski. He got and wrote some terrific letters; there’s an impressive pile of them next to his bunk. I am overwhelmed at the generosity of all of the friends and family who make the effort to write to him and send him care packages. It is an unexpected blessing of this whole enterprise that so many people would take the time from summer work and travel to think of him – he got packages and postcards from Europe, Ohio and California representing family, friends and teachers he has known at every age all the way back to preschool.
Our world – his world – is bigger than we thought. That alone is worth the price of separation.
Naturally just before Parent’s Day they get the kids to get caught up on their correspondence – just in time to ask you to bring them stuff. You know they’ve been sitting around his bunk for a while because there’s no mention of the knee injury. Doesn’t matter – I live to see his distinctive handwriting (best in family), which I keep trying to make into a font.
You can tell that the bulk of his letter-writing experience has been to Santa Claus and the Easter Bunny because he’s got the gift requests down pat – very specific, down to the materials and manufacturers. The boy understands how to communicate when he wants something – he includes visual prompts. He drew the cookies he wants me to send.
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…
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.
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.
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.
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.