parenting

4 September 2012

So, How Was Camp?

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.

28 August 2012

“I can still smell the look of it.”

This was our boy’s observation as we pulled into the drive thru at McDonald’s yesterday. The fast food Mecca is the bane and savior of many an autism parent’s existence. I wish I could say that I took him there only because after 7 weeks of camp he deserved the french fries, but the fact is that after 7 weeks of him at camp plus a college drop-off I craved the Big Mac even more than he did the fries. I knew we would both be sorry in a few hours but we had both been on our best behavior for so long it seemed a minor transgression.

And the phrasing of his remark may not be grammatically correct, but it sums up perfectly the mixed feelings those of us who still go the McDonald’s (oh, come on, you know who you are) have about it – that smell and the very act of pulling up to the window are a sensory memory none of us ever forget. If you have not heard Jim Gaffigan‘s riff on McDonald’s, you owe it yourself to go here.

So, contraband procured, our boy clutched the bag and said, “Shall we wait until we get home?” and then immediately began to eat them – longest ones first. My favorite part (other than the Big Mac) was, as I watched him munch out of the corner of my eye, I asked him to share a fry with me – and, as usual, he gave me the shortest one he could find.

16 August 2012

The Home Stretch

It’s the last week of camp. I have pored over all of the camp’s photos of our boy and verified that he does look older. We’ve had a phone call and an e-mail over the last few days and I recognize that the flow of communication from him has not evolved as much as we had hoped – the separation did not widely increase the level of detail he provides in letters or over the phone. Still, we know that he is well and happy and we are all anxious to be together again. By any measure the venture has been a success, but the real specifics will be revealed in the coming weeks and months as we observe the re-entry to home and school.

Meanwhile, we have had seven weeks of clear floors, with no trains or set ups of Pride Rock, The Big Harbor, or Playmobil farms and zoos. I had the carpets cleaned yesterday; they are vibrant, soft and beautiful. All prepared for him to come home.

12 August 2012

I Left My Sweet Tooth in Upstate New York.

Last weekend I was so hot and so worried I lost 5 pounds and did not even notice until now. Suddenly I’ve lost my taste for sweets.

Week seven underway and we are all tired of our quiet house. I told myself at the outset that I would not spend the summer waiting for the boy to come home, and for the first six weeks I made good on that promise in some ways but not others. I spent time with my other kids doing things they wanted to do and sharing with them new experiences that are interesting to me. I promised to have drinks with lots of people to help pass the time but I didn’t make good on that one. I said I would sort through his drawings and keep the best ones, but I can’t go anywhere near that mountain of paper with any kind of gusto and certainly not a shredder.

But the biggest elephant in the room right now is that this adventure is supposed to prepare us for more separations in the future, and even though I should feel better about age 22 now than I did, I still can’t envision a life without this person under my roof. We were not prepared for the scale or the depth of the adjustment at home; the house is neater, cooking is simpler, and car rides are quieter, but nothing is better without him here (which is not at all surprising). I have to remind myself that this particular kind of absence isn’t what camp was about – that long distances and separation over several weeks is not the model we are shooting for, that camp is only an experiment and not a template for his adult life.

We still have lots of data to collect before we really know what we have learned, and the surprise at this point is that most of the learning has been about ourselves and not him. But a few things are certain – we are all stronger, smarter and better prepared for the next steps we take toward independence, and that we still need to address what independence really means within the structure of a family.

10 August 2012

The Visit: Longest and Shortest Day of My Life.

We went. We visited. We came 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.

2 August 2012

Letters? Oh…you mean theeeese letters…

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.

Awesome.

25 July 2012

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…

22 July 2012

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.

15 July 2012

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.

12 July 2012

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.