camp

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.

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.

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…

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.