autism

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.

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.

2 July 2012

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.

30 June 2012

The Pre-Tromp Romp

Now is a good time to note that, however camp turns out, we have learned and grown enough in the last two weeks to make it worth it. From a delightful and heartwarming exchange with the creators of Hoops & Yoyo to the deepest conversations ever with our boy about growing up and what camp is for, we have already made great strides. We have packed a summer’s worth of activity into one week and watching our growing children do the same things they always have shows us how much they have grown physically and emotionally. So, for a moment, we smile and breathe easier, understanding that we were a little better equipped for change than we thought. Hearts full, fingers crossed – here we go.

Photo: a parade of sparklers.

13 May 2012

Mother’s Day: Instant Respect!

Any holiday that results in the world being filled with flowers and slightly burnt toast can’t be all that bad. Our mother told me that some of the best days of her life as a mother were when her own children had kids of their own and felt the weight of responsibility that comes with holding a newborn.  She paused for emphasis and raised her hand with a flourish and proclaimed: “Instant respect!!” And she treated all of us like people all the time – no talking down – never really couching her guilt trips (there were many; they can be useful) in a way that diminished motherhood itself.

A feminist who disdained the very word, she understood the power of matriarchy and wielded its grandly. And her belief that children are gifts from God, given to us to teach us about ourselves as part of a the pursuit of the divine was probably her greatest lesson to me. She believed in everyone having a divine purpose and often said that pride was her biggest obstacle to pursuing the path laid out for her. I get that.

Mom said she had to remind herself that she could neither control nor shape the fates of her children (though that really didn’t stop her from trying) but the more powerful thing she said was that her belief in divine providence reminded her that she could neither take credit for our successes nor blame for our mistakes. And while there were times I thought that statement was a cop out, I can see how she thought that when I look at my own children; I don’t know that much more about them today than I learned in the first 24 hours in the hospital after each of them was born. They have all been so much themselves from the very first moment we met, and yes, I factored in the autism. Certainly we must give them all the tools we can to release the full potential they have; to keep them healthy and safe but most of all to help them know and understand the power and meaning of love.  It sounds simple and it’s pretty straightforward until you have that moment as a mother where the greatest love means letting go.