Hurricane Sandy: The Aftermath

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?”

Semantics over Substance? Really?

image by sendimonline at Photobucket

I got roped into watching the debate last night. I won’t comment too much on it, but one thing stood out for me, and it had less to do with the debate itself than with the reactions I witnessed on Twitter. At one point, President Obama spoke about Medicaid. Thankfully, the New York Times snagged the quote:

“Referring to possible cuts in Medicaid, he said, ‘that may not seem like a big deal when it just is, you know, numbers on a sheet of paper, but if we’re talking about a family who’s got an autistic kid and is depending on that Medicaid, that’s a big problem.’”

The point the president was trying to make was that Medicaid benefits matter to those affected by the autism spectrum. So what was the tweeting point? The president didn’t express himself in the way many people feel is the politically correct way. Too many of the comments boiled down to (pardon my paraphrasing) he should say child with autism, not autistic kid.

Seriously?

I’m a writer, so yes, language means a great deal to me. However, intention and content matter more. Can we really afford to haggle over semantics in the face of such a huge issue? I don’t think we can.

Our family is fortunate enough to live in an area where Gus has had access to his services through first the county, then the school district. But as he gets older, those services dwindle. At some point, he will likely need to apply for Medicaid. There are an awful lot of areas where people don’t have access to those services. Gus is making amazing progress in middle school, but I can’t say he would be doing as well if he hadn’t had such a strong foundation during the elementary years. If we had no access to services or to Medicaid…I shudder to even consider where he would be now. We would never have been able to afford those supports for him on our own. Many families—too many families—end up bankrupting themselves trying to meet the needs inherent in life along the autism spectrum.

Frankly, I care less about the language. I want to know that the help will be there for the individuals who need it now and for us if/when we need it later. We need to focus on the real issues, not on labels. What someone intends to do to help my child is more important than what he calls my child.

To be fair, some responses echoed mine—that while the president’s words may or may not have been everyone’s preference, his desire to keep Medicaid benefits available should be the conversation.

In terms of the semantics, for the record, my son is an “autistic kid” and “a child with autism,” but most significantly is not a label. He’s just Gus. And I want his needs to be met no matter what you call him.

An Evening with Jesse Saperstein, Author

Originally published 5/19/2010: Last night I had the pleasure of listening to a talk given by Jesse Saperstein, author of Atypical: Life with Asperger’s in 20 1/3 Chapters.  Mr. Saperstein spoke about some of his challenges growing up on the spectrum as well as how he’s fared as an adult with Asperger’s.  He was candid and engaging when recounting his difficulties with transitions, the awful time he had in college, dating and even the occasional inability to keep a job.  Yet, he never gave the impression that his life was all bad.  As a matter of fact, he said that there were times when it was rather amazing.  For example, right after college, he hiked the entire 2000 + miles of the Appalachian Trail.

I was very impressed with this young man’s wisdom and took some of his advice to heart.  He stressed the need for parents of children on the spectrum to accustom our kids to managing without aides in different environments.  To paraphrase: once they walk through that door after high school, all that support disappears.  Mr. Saperstein also advised that we let out children have as many ‘mainstream’ activities as they can handle, let them experience failure in order to learn from the process and to make sure that they understand that their behavior has consequences.  A strong work ethic instilled early on is absolutely essential if our kids are to succeed as adults, and while this is true for everyone, it is doubly true for individuals with social disabilities.

I look forward to reading and reviewing Atypical.  I just purchased it so the review will be soon.  If the book comes anywhere close to being as funny, honest and hopeful as Mr. Saperstein is in person, it will be an incredible read.

Update 12/1/2011: I highly recommend Jesse’s book, Atypical. He is a fascinating individual with an honest and unique voice. He displays a sharp wit, but also moments of vulnerability. This book is an excellent and quick read that sheds a good deal of light on what it is like to grow up with Asperger’s.

Combating Environmental and Social Issues

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.