anxiety

30 October 2012

A Different Kind of Storm

Hurricane Sandy may have passed, but clouds remain on our horizon. I’m not yet ready to post about our boy’s ordeal over the past couple of weeks, but as we stumble through the second day of weather-related school cancellations I see a furrowed brow and a short temper that prompts me to warn my younger son to cut his older brother a wide berth. Other families face much greater challenges from aggression than we, but I am so conflict-averse that even the rough and tumble of typical adolescent boys sets me on edge. We are all off kilter from too much TV storm coverage and howling wind and pouring rain, followed now by creepy cloudy silence and listless lack of routine. We know we are fortunate to have the power on and the trees intact – it wasn’t our turn this time but who knows what the winter will bring now that we have used two of our snow days.

We read on Facebook about some families taking delight in the drama of storm prep and others – the ones with kids on the spectrum – wary of how no power or school might unsettle their kids. We are somewhere between. My boy slept in the basement last night to protect his trains and animals from the perceived threat of the storm – his strong protective instincts run from cutting trees with Dad to carefully tending to his stuff: the Thomas trains stored in their sheds and Playmobil animals in the barns – even the portable DVD player that is the Sodor Drive-in theatre tucked safely away. Camping on the couch in his sleeping bag is part of what makes him such a beast today even though he came upstairs at dawn and finished his rest in our bed after Dad went to work, his feet looking for mine while he fidgeted in his sleep.

And as I write I hear the boys talk in warm tones and the sun emerges to cast a brighter, wintry light on wet fallen leaves and bare branches. The clouds are expected to come and go with maybe one more wallop of rain from the backside of the storm. We’ll proceed cautiously through today and look forward to the routine of tomorrow – which, I now realize, is Halloween. Oh boy.

10 October 2012

Did We Do Something Right?

The lesson learned every day? That we don’t take the blame for what goes wrong and we can’t take credit for what goes right. We tried to accept a long time ago that most of what happens in life is out of our hands – and yet…years of data collection and analysis have forced us to look at evidence and then try to predict outcomes. We are compelled to try and control whatever is within our grasp, no matter how slippery.

So now we have this explosion of language and introspection and creativity and we cannot resist the urge to ask, “Did we do something to make this happen?” Maybe. Somewhere out of the many new situations that life gave our boy, a window opened, a breeze blew through and the seeds of success landed and took root. We created some of the circumstances (camp) and others decidedly not (the loss of JM) but at this moment we see a sense of strengthening purpose and engagement and the hope it brings leaves us blinking in the sunlight.

We know it might not last in its current state – I don’t think we will ever be free from regression. And we all regress sometimes, learning from those same mistakes again and again (Why did I eat that? Why did I say that? Why did I drink so much of that?). But when fundamental skills – like speaking in paragraphs instead of phrases – ebb and flow we find we will do anything to keep that window open and the breezes flowing knowing full well we could wake up one morning to find it closed. The prospect of losing something so hard won triggers every possible human response: hope, fear, optimism, cynicism, love, faith, superstition, luck, magic, and faith – all tempered by what can only be called PTSD. The shock and awe of those early years can return in an instant when he looks at me and his eyes are blank and he is seeing only what is inside his head.

But thinking about it now won’t make it happen – and it won’t fix it when it does – so I will be thankful for the gifts we have today and have faith that they will still be there when we wake up tomorrow.

16 September 2012

A Direct Line to Heaven

When our boy was small and we were still trying to figure out what was happening with him, I often said that he was a little closer to heaven and to hell than the rest of us. He was – and is – so much more in touch with his emotions than with the practical world and it magnifies both his joy and his pain in any given situation. As one can imagine, it is a gift and and a curse, but as a parent I place much more value on his gift for presenting vivid, unvarnished snapshots of the most fundamental joys and sorrows in life. This is never clearer than when there has been a death of someone close to him.

He recently lost a classmate to a short, intense battle with leukemia. It all happened while he was at camp, and this turn of events still dominates his re-entry into home and school. He has panic attacks most mornings at school, causing physical and behavioral distress, and we enlisted the help of the school adjustment counselor and the nurse to address his worries.

Earlier this week I met with his teacher and behaviorist who told me that his friend’s parents would be visiting the school to accept a big card that many students from the high school signed honoring their lost classmate.  Leading up to this, our boy was writing down his feelings in a letter to his friend JM and they showed it to me – it was phenomenal, full of apologies for being away while he was sick and a long list of people who miss him. He is really working things through with the counselor, which seems to be making a difference, because he appears to be having fewer the panic attacks. They said that he printed out a photo of JM and drew a gravesite on it. Sometimes he puts his hands on the picture and prays to him (which makes the adults in the classroom cry). When he came home from school that afternoon he sat with me and showed me a bracelet JM’s mother gave him with JM’s name and dates on it. He said that it was good to see his parents and to know that JM’s mom misses him too. I asked him if he cried. He said yes.

We went to the dump that same afternoon and on the way back we passed our church (we do not attend often – singing and crowds, you know) and I told him the church was empty and asked if he wanted to say a prayer for JM. He said yes.

We went in, and I reminded him about the presence of the Holy Spirit and about genuflecting and then helped him say a couple of prayers – he kneeled and held his hands in perfect position; so earnest. I asked if he wanted to go or stay and say some of his own prayers. He said stay. He told JM that he was sorry for missing his funeral and that he hopes he is happy in heaven. Then he closed his eyes, bowed his head and put his hand over his heart and said very quietly,

“In peace. In peace. In peace. In peace.”

It was as transcendent as anything I have ever seen in church. He was quiet for awhile and then said he was ready to leave. I asked him he he felt any better. He said yes.

As we got in the car he said.

“Boy, I really can’t wait for Halloween.”

Why?

“So I can see JM’s ghost!!”

I couldn’t help it, I burst out laughing.

“Was that a funny thing to say?”

I asked him if he thinks ghosts are real.

“Noooo. But I still can’t wait for Halloween.”

I asked him if he knows that I am totally in love with him.

He said yes.

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.

26 August 2012

Vacation Revelation

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.

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.

31 July 2012

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.

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…