The hurricane did not throw Gus off; going back to normal did.

We came out of Hurricane Sandy relatively unscathed. No property damage, no flooding. We lost power for about 48 hours, and were almost out of water, but the situation was manageable. Gus did quite well, all things considered. He adapted well to the power outage, sleeping without his noise machine or any night light, relocating bedrooms for one night, not opening the refrigerator or playing with the lanterns too much. He even had to go to school yesterday and had no trouble getting ready in the dark.

The storm didn’t even completely ruin Halloween. We went trick-or-treating at the mall, and Gus stood in lines and stayed with us despite the crowds of children. We went out for dinner and had a lovely time. He didn’t even fuss at having to take a sponge bath with cold water before bed. He was incredibly easy going, which for a kid who hates disruptions to his routine, was major.

So, I was utterly unsurprised when the other shoe dropped.

The power came back on at around 11:30, long after the kids had gone to bed. My husband and I woke up and couldn’t sleep for a while afterward. We turned off lights and radios. Gus and his sister never even twitched. We crashed around one. Fast forward to 3:33.

“THE POWER IS ON! THE POWER IS ON!” Gus has a bright future as a town crier should we ever go back to those days. He got out of bed, realized no one was responding and then went back to his room.

“CAN SOMEBODY SHUT MY DOOR? HEY! I FORGOT TO SHUT MY DOOR!”

This went on for a good five minutes. When I could no longer pretend it was a nightmare, I whisper-yelled back, “Get up and shut your own door!”

“I’M TRYING TO SLEEP!”

“SO ARE THE REST OF US!”

He finally got up to shut his door. That lasted for a minute or two. Through the closed door, I then heard, loud as a foghorn, “CAN SOMEBODY SET MY CLOCK!”

Over and over. Then he got up again. Apparently, he had now woken his sister and went back to proclaiming, at the top of his lungs, that the power was back on.

From her room there was a muffled, “I know!” and some other grumblings that I couldn’t make out, but that I assumed meant she wanted to punch him out.

Realizing that he had no audience from his sister’s room, he came to ours. “Can somebody set my clock?”

“Not right now. Go back to bed.”

“How am I supposed to get up in the morning?”

“I’ll wake you up.”

“What time is it?”

“IT’S 3:30! GO BACK TO BED!”

“I had a nightmare.”

I don’t know what the nightmare was about. I was distracted trying to figure out what the nearest large heavy object was with which I could beat myself in the head.

He was still rattling on when I interrupted. “I’m sorry you had a nightmare, but right now, you need to go back to your bed, shut off the light, close your own door and go back to sleep. You have school tomorrow.” Clearly, I am not a smart woman in the middle of the night.

He followed most of the instructions. My own fault for giving him four things to process at once, especially while he was so frazzled.

“HEY! CAN SOMEBODY SHUT MY DOOR?”

Originally published June 7, 2010

“But the moment you turn a corner you see another straight stretch ahead and there comes some further challenge to your ambition.”  ~Oliver Wendell Holmes, Jr.

“It’s not that I’m so smart, it’s just that I stay with problems longer.”  ~Albert Einstein

Gus, and many other people along the autism spectrum, perseverate.  This means that they will repeat a particular phrase, motion or behavior for, what might seem to an outsider,  no cause.  What I find interesting is that he easily perseverates, but perseverance comes so much harder.  So close and yet…

Over the past several weeks, Gus and MM have been running different races that we find through the Runners club.  Kids their age generally either run a mile or 1K (.6 mile).  I have to say, some of those mile runs are killers.  And for Gus, with his low muscle tone and endurance, it is beyond challenging.  He often wants to quit and I can hardly blame him.  Now add the fact that he is almost always in last place, far behind his little sister.  So why keep him doing it?

Simple: he has to learn.  Sticking with an idea that he is interested in is no great feat for him; however, his life is going to be chock full of things that are monumentally hard.  Most things are going to be hard for him, from making friends to managing whatever career he chooses.  Learning to stick with the things that he most wants to quit will help him a great deal as he grows.  It won’t hurt that running will also build up that endurance and will continue to build his focus.

The strategies that have worked best to keep him going have been:

• Constant, constant, constant encouragement – even when I am having trouble catching my own breath, it helps us both to keep up the litany of ‘you can do it’s.
• Not going it alone – wile Gus is probably okay to run some of these tracks alone, I think it helps, especially since he is often at the end of the pack, to have someone with him, even if it’s just for company.
• A sense of humor – Gus finds it highly amusing when I pretend to be a zombie chasing him.
• Shifting tactics – when zombie chasing stops motivating him, we switch to pretending to be Sonic the Hedgehog or some other character.  If that starts to lose power, we sing a song or start to build in some competition.  It’s always good to have a readied arsenal of motivating tricks to draw on, especially with someone whose focus changes so rapidly.
• Small steps – instead of focusing on the end markers, which we usually can’t see, we shoot for each turning flag.  When we reach one, we can shift our gaze to the next.
• Competition – Gus is nowhere near as competitive as his sister, yet even he hates to lose.  I tell him as long as he stays ahead of me, he’s not last.  When all else fails, I start to pull ahead a little and challenge him to pass me, and he does.

None of these are revolutionary ideas, and they apply to many people in many situations, but they bear repeating because sometimes we forget.

Every race sees him getting better and better at persevering through the miles.  One day I expect he’ll be able to do it without me on his heels – he’ll have his own internal motivator.   Then I can just wait for him at the finish line and cheer my head off with all the breath in me.  Until then, we keep putting one foot in front of the other.

Update: Gus has since gotten much stronger as a runner. Where he used to come in dead last, he is now finishing races in the middle of the pack, and he has even run a race or two on his own, without someone shadowing him. In the year and a half that he’s been working at this, although he still struggles with endurance, he has expressed an interest in training for a 5K race. Hopefully, we’ll reach that goal in the spring.

Leafy Greens Hydroponics image by Ryan Somma

For as much time as I spend thinking about the issues surrounding the autism spectrum, I focus almost as much on food and the environment.  This week, I came across a product that blew me away – produce from a company called Finger Lakes Fresh, which is owned by Challenge Industries.  Finger Lakes Fresh uses hydroponics to grow produce,  like arugula, basil, and other greens, in nutrient-rich fluid instead of soil.  Their prices are reasonable, and the produce is delicious, but that’s not what struck me about this company.

Challenge Industries’ basic mission is to employ individuals “with disabilities and other employment barriers.”  So by supporting these companies, you also directly support Challenge’s efforts to show disabled adults that they are valued members of society.

I would encourage anyone who has a child with special needs and is concerned about eating quality food, to reinforce Challenge’s work.  Your child will one day enter the work force.  Send the powerful message, by way of where you choose to spend your dollars, that individuals with disabilities deserve to be allowed to contribute to society like anyone else.

*image from Wikimedia Commons under Creative Commons Attibution License.

** This post does not contain any affiliate links.