We Go With Him

15 on 5/15

My thought was to do something special for this post for Charlie's 15th birthday. After all, he is 15 years old today, 15 May 2012, the Ides of May MMXII. This thought was the impetus for me deciding at 7pm on Monday night that, despite the absence of cake flour in the cupboard, to make cupcakes for him to bring into school just as my mom used to bake me a pan of treats to pass out to my classmates, in those innocent pre-food-allergy-awareness days of yore.

I found a recipe via the Big Oven app on my phone and was soon creaming butter and cracking eggs. My mom (who is more precise in such matters) spooned the batter into the cupcake wrappers. I frosted them once they had cooled, Charlie watching a bit warily as I sought to generalize 'baking' beyond brownie mix. My dad studiously cut up and reassembled a USPS box to ensure safe passage for the cupcakes on the school bus.

After a weekend of strangely routine sleeping (the un-routine does have a way of becoming the routine in autismland, you know), Charlie went to sleep at 2.30am Sunday night and appears to be on his way to doing the same on Monday night. He was very tired getting up on Monday morning and that prevailed at school, though he still had a good day. He and I waited in the front yard for Jim to return, chanting 'daddy' back and forth after I had taken out the bikes. We were joined by my mom and dad, who decided he and Charlie should walk up the street to meet and greet Jim.

It looked like it might rain, and it was indeed sprinkling a bit when Jim and Charlie set off. But the rain held until the night and they got in their (yes, routine) 12 miles.

And Charlie, despite a bit of a stomach issue and being extra-excited with my parents here and this birthday business, and being wakeful into the night and therefore sleepy in the day, was peaceful easy-feeling-going.

When he was little, we made much brouhaha about his birthday. There'd be a party planned at school and, for two years in a row, there were pool parties with pizza and sushi (for the birthday boy) and gluten-free casein-free cake. But after seeing Charlie wracked with worry at the mention of the word 'birthday' and 'cake,' and ending one of those pool parties with him banging his head on the black car, we started to lowkey his birthdays. My parents always visit and that alone has led to heightened anxiety in Charlie; the party and special foods and presents and guests and all that can just add to it,hence Charlie banging his original iPad so hard the screen cracked at his previous birthday, and that headbang on the black car. Too much of good things is just too much.

So the celebration this year will be modulated and moderate as it was last year. Charlie has just his one big present to be presented Tuesday night, along with some cards and envelopes from my California relatives. We don't insist he open them and we stick to the usual round of things: The bike ride, the walk, the usual dinner.

As I thought as Charlie and I went on our usual evening walk, the best gift we'd like him to have is a peaceful-easy feeling, storm-free birthday, to celebrate that he's gotten this far, and how very far he's come. Charlie's only 15 on the 15th once, after all.

 

 

Change is Change

Around 2pm, I saw I had just missed a call from Charlie's teacher and knew he must have had an incident. It's been several weeks since Charlie got upset at school -- it's really been a good school year for him behavior-wise (which is not to say there have not been some intense storms). I emailed his teacher and, besides Grandparent Anticipation (and possibly birthday anticipation too) and chronic sleep woes, thought to mention a change in our household, Jim and me being done teaching.

Meaning that, Jim will be home every day for a bike ride.

Meaning, a change -- and, even though it's a good change, Charlie was wary.

This was apparent to me as soon as he got off the bus. His face had the troubled look and when I said we could wait for Jim to be home, he called for the car.

At first, as Jim wouldn't be home for an hour, I said ok. Jim texted it would be best not to get in the car. I mentioned waiting again, Charlie pressed for the car.

Then he stood at a certain spot in the kitchen and called for a long local bike ride.

Smiling, we made brownies and Charlie had a big snack and then a long slow bike ride with Jim.

Haircut Memories and a Mighty Wind

A very strong wind has been blowing since Saturday, providing a bright and clear sky and causing contact-lens wearers (myself) great discomfort and, on a morning walk with Charlie and a jog later, temporary loss of vision.

For Charlie himself, the might wind was a reason to stop, stand and stomp in rhythmic ways beside his bike a number of times, on a morning 14-miler and an early evening one (the first extra-strenuous one resulting in Charlie conking out for a couple of hours in the afternoon).

Inbetween, Vince the barber gave Charlie a super haircut and shave, after which Jim took his turn in the barber chair and I thought about taking Charlie to kiddie hair salons where he sat on a merry-go-round horse and wailed the dickens out of his lungs while dodging the scissors. Jim would try to hold him and I'd be ducking around handing out Holgrain cracker bits for seconds of still-sitting and blowing bubbles.

Yes, autism is a journey not a war.

 

A Boy Who Can Handle Things

 

Friday night we heard an unusual noise while the shower water was running; on going upstairs (in a non-rushing kind of of way), we found Charlie standing by the bathroom sink and holding the shower rod and curtain. He was grinning.

Obviously, time for a new one!

Perhaps, Charlie is indeed learning how to handle small catastrophes.

 

CRASH!

That sound came from upstairs Wednesday night. It was not accompanied by bangs, slams, screams, cries, stomps, jumps, smacks, shattering sounds, as has been too often previously the case and I continued to cut watermelon.

Charlie came downstairs and asked for a walk.

I went upstairs to check on things and saw that the shower curtain and rack had fallen down. With his penchant for ordering, Charlie has been fastidiously arranging it just so and that, with the combination of wetness on the walls and humidity in the air, must have led to the whole thing falling down. I reattached it as Charlie watched and we went for the walk.

Jim came home past 10.30. Charlie was still awake and, despite very little sleep the previous night, stayed up past midnight and just got up cheerily and onto the bus.

Changes, small in scale yet epic.

 

Something Very Sad

This news story is too sad, and awful. Obviously I cannot stop thinking about it; Jim too.

It's too easy to say 'how could that mother have...'. Her neighbor said she spoke of being tired. So far, even when I'm more tired than I've ever felt I've been, I've been able to keep scrubbing, walking, running (as the case may be), going. So far.

This article, by a mother of two autistic sons (one 19, one in his early 20s) -- it's Charlotte Moore, author of George and Sam -- shows the struggle for her sons once school was over (at age 19 in the UK).

Charlie is closer in age to all of these young men. One point Moore makes especially stands out to me: Our kids' development is not 'normal' -- they are developmentally delayed individuals -- so the thought that they would be able to be all done and ready with their education at the same age as other children is ludicrous. I understand all too well why there are cut-off ages; like Moore, I think that is something that needs to be changed and/or that, we need programs in place for our kids beyond when they become legal adults, but are still far, far from ready to be case into the big wide world.

I didn't think about any of this all Wednesday afternoon, which Charlie and I spent together as Wednesday is Jim's day to work late. He got calmly off the bus, asked to get a burrito (that's become a Wednesday routine) and had his happy-joy-sweet smile for the whole ride. He was still hungry when we got home (Charlie hasn't been eating much lately due to his cold) and then we went on a walk. Lots of people were out enjoying the warm weather, from stroller moms to skateboarders.

Soon as we got home, Charlie announced he was ready for bed and upstairs he went. He was sound asleep before 7pm.

Not every day can or will be so peaceful easy. How one does appreciate the days that are.

 

Harsh Experience Has Taught

A shaky energy possessed Charlie on Sunday. He was up before 7am and not so much asked as needed a walk shortly thereafter. He was happy to get on his bike at our new alternate start by a pizza restaurant in Jersey horse country (he and Jim end up on the bike trail but it's good to be on the road too as some parts of the trail are iced over); wanted another ride after a short rest at home (so it was a 40 mile biking weekend); requested two more walks, the first of which saw him running steadily than fast and furious across the field that is the penultimate stretch of the walk.

Before the last two walks, he had been walking around the house after an early dinner. I was in the kitchen and had just exited when the sound of plastic hitting the floor was to be heard.

It was just a little bowl with some apple slices and Charlie standing by the kitchen counter with his face in the brooding frozen look he gets at such moments. We suggested he sit in his black chair at the foot of the stairs and he grabbed his iPad and did. Within fifteen minutes, the features of his face relaxed and he even smiled a bit.

About twenty minutes before the apple bowl throw, he had asked to get in the car for a ride but we sensed that edge under his loud and increasingly ardent requests. In the past, we would have scurried into the car, thinking that providing what Charlie asked for would assuage him. but harsh experience has taught us that acceding to such requests has precisely the opposite effect -- Charlie, in the car, would only get more and more agitated and then more. Home is the proper place to be when feeling out of sorts.

And lately, Charlie has been showing himself a bit more able to keep his physical responses in check and feels all the better afterwards. If you don't have a really big difficult moment, you don't have to deal with so much lag afterwards.

And you can spend the rest of the evening hanging around the house, making sure your mom puts the juices in the lunch boxes in the fridge for school tomorrow, watching favorite videos, and even having a little snack in bed before falling deeply asleep after a full weekend.

Dentist Success

Sometimes you have to just step back -- remembering the ER visits, the broken window in the pediatricians' waiting room, the screaming/wriggling/back-arching child you tried to hold down in your lap while the dentist (another dentist than the amazing one Charlie has now) tried to scrape his teeth -- and enjoy the moment.

No cavities, either.

 

Every Day Starts at 6am (approximately)

Charlie has been waking at 6 or 7am most days, weekends including: While I admit it would be nice to start Saturday and Sunday a bit more slowly (i.e., without hearing the clompclompclomp, getting right up to give Charlie his medication and a glass of water, grabbing a jacket and shoes and heading out for a frosty one), Charlie being able to get himself up at those hours consistently means school day mornings have become almost too easy.

Sunday, he was raring to go out to New Jersey horse country but we wanted to wait as it was about 1 degree Celsius and we knew it would be a bit warmer later in the morning. Just some months ago, we had used a timer and all manner of stratagems to help Charlie get through an hour. Yesterday, I made coffee, cut up an apple that Charlie ate, went running, cleaned the floor, chopped up some vegetables for later; Charlie watched and stood, eventually sitting down in the black chair and dozing a bit. Once he woke after a few minutes, he asked for 'white' (as in our car) and, as it was nearing 9.30am, I got out the bikes, Jim loaded them, we were off.

Jim made sure that he and Charlie both added a key piece of winter gear, skullcaps under helmets to keep ears warm. He couldn't get Charlie to change into warmer gloves; one thing at a time. He did convince Charlie he didn't need to run into the bushes when they encountered a dog running ahead of its owners on the path. Charlie had stopped and got off his bike while the dog jumped a hello on Jim, who was quite aware that Charlie was not going to like that. He assured Charlie to stay put and they got back on their bikes and kept going on the otherwise empty trail -- it was 0 degree Celsius and the trail was muddy and, in some places, icy.

With all that, they did 15 miles, Charlie smiling as he pedaled up to the car. He kept smiling at particular moments for the rest of day, when I looked in his room where he was stretched out for a nap after we got home; after a crisp walk in the early evening; after an ice cream and lemonade run (summer time foods that know no season); after a late evening walk.

He willingly assenting to wearing his new green coat for the walks. It's a size large and Charlie has taken to it quite quickly. He still fits his blue coat from last year but on discovering that the zipper is broken, and seeing how such immediately consternated Charlie, we immediately ordered him a newer, bigger one in green, a color Charlie seems to favor along with blue. Black isn't such a good idea for a jacket for Charlie as it's harder to spot in a crowd.

Or ahead of you on a muddy bike path since, except when Dad's needed to help with a dog, Charlie so often leads the way.

 

Fall Break, Whether You Want It Or Not

 

In a non-surprising development after the past week, Charlie does not have school on Friday. We were hopeful there would be. Although, after hearing Charlie say a steady 'no school' in response to our neighbor asking him sympathetically if school was still closed, I did wonder if maybe, rather than have to get him into back-to-school-transition mode only for one day, it might be better for him, and us, to go through the rest of an entire week off and start anew next Monday.

And as things turned out, this will indeed be the case. I'm back to teaching Friday so Jim will be home with Charlie all day.

Thursday started with a walk followed by a bike ride followed by lunch and a walk and then a five-hour-plus wait for Jim to return from New York. I alternated watching Charlie from the (open) front door and stepping out and sweeping leaves and the porch and, as 6pm approached, getting out the bikes. Charlie seems to like this 'alternate' approach in which I'm a presence but not an in-your-face one; in which I'm there but give him plenty of space, literally and otherwise.

When Charlie was little -- especially when he was doing intensive ABA -- I subscribed to the mantra that there ought to be no such thing as 'down time'; that we had to keep Charlie's mind stimulated at all times. We did not accommodate, though, for Charlie having his own ways of keeping his mind busy, by 'processing' and working through thoughts and experiences while standing still and staring ahead of him. No wonder he sometimes became incensed seemingly 'out of the blue': In some cases, we must have been breaking into his thoughts.

A better understanding of how Charlie needs to think through and work through experiences -- such as finding himself home for five unexpected days in a row -- and simply to be -- i.e., to spend those five days -- has some role in his getting through this 'enforced staycation.' Another is that, in the past several weeks, Charlie just seems to be showing a lot of maturity. He has been steeling himself to wait to go for a car ride and get something to eat, to go for a bike ride, to hang on till Jim or I return home from work. He doesn't really want to wait and often asks for whatever he wants ('Dad home') about a hundred-plus times, his worry peaking with each utterance. But, for the most part, he has been able to wait.

I can't say I always handle those moments of saying-something-100-plus-times right. Sometimes I repeat each utterance after Charlie. Sometimes that assuages him (it did Thursday night) and other times it only seems to make his anxiety-o-meter rise (Monday morning). Our imprecise strategy is to discern where Charlie is and let him know that whatever he's feeling is understandable, is valid, and then to communicate back some nonchalance, in order to let him know, things are all right and calm. While sometimes (not really this week) there is storminess, Charlie's anxiety (and repetitive speech) often peaks and crests and then dissipates as a result of he himself working it through, and us acknowledging that he has to.

Also, I used to think, when Charlie had a day off from school due to a snow day, we had to make sure he still got in his academics and learning. I was overlooking, though, that Charlie needs to summon a lot of thought and strength to help himself get through something unexpected; that just being in such an out-of-routine situation requires an extra effort on his own part.

Thanks to all this, we've been cohabiting with each other's differences reasonably peaceably and this surprise fall break has been good times not a chore, but some fine times together. Perhaps by communicating (mostly non-verbally) this to Charlie, he's felt much better about snow days in November too.