Funny Moment

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Gus brought home a Level 1 transition form, which basically looks at his “interests and abilities” in preparation for steering him toward a career. The exchange I just had with him made me think of the form.

I touched my nose to Gus’s and said good night as I always do.

“Your nose is warm,” I said.

“I know.”

“Mine is cold.”

“What are the odds?”

He was completely deadpanned, but I caught the crooked smirk he was trying to hide. The kid has a quick wit and incredible timing. If he doesn’t grow up to be a comedian, I will think something will be very wrong with the world. I think that’s what I’ll write on the form.

Hurricane Sandy: The Aftermath

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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?

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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.

Book Review: Marcelo in the Real World

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Author: Francisco X. Stork

Summary

Marcelo Sandoval is a 17-year-old young man with an unspecific cognitive disorder similar to Asperger’s Syndrome. His father makes him take a summer job in his law firm’s mailroom. If Marcelo succeeds, he can finish his last year of high school at the private school he has attended. If he does not succeed, Marcelo has to go to public school for his last year. As he learns to navigate the social minefield of the “real world,” he finds himself in the middle of a legal drama, faced with tough and sometimes dangerous choices.

Review:

Overall, I enjoyed this book a great deal. Stork’s prose is spare, but impressively tight. He conveys complex emotion and vivid imagery without a lot of bloat. The plot is well constructed and moves along at a pace that holds the reader’s attention. The characters are mostly well done, although this is where my main issue originates.

My one problem with the book comes down to characters. Marcelo has a unique and engaging voice. Stork, by refusing to commit to the Asperger’s or any other diagnosis for the character, cheats a little so that Marcelo can behave inconsistently at times. At the end of the day, I was able to live with that inconsistency and chalk it up to his character growing in fits and starts.

The character of Arturo was another story for me. I found myself hating Marcelo’s father and not being able to believe him. He is an ivy-league trained, high-powered lawyer, but he makes moronic decisions and forces them on his son. It is one thing to challenge your child, but I have a hard time buying that a parent would intentionally put his son into demeaning and potentially dangerous situations without warning or preparation. Moreover, there doesn’t seem to be a good reason for some of Arturo’s behavior. On Marcelo’s first day of work, he is ready, but Arturo refuses to leave until the last possible minute forcing them to have to rush for their train. Now, this could have been Arturo’s way of desensitizing Marcelo to the possibility of not being able to always leave on time. Sometimes you are rushed. But why wouldn’t he just explain that to him? What is the point of trying to teach a lesson if it’s just going to hang there between them? Arturo struck me as someone smarter and more conscientious than that. I found his behavior toward Marcelo to be extreme, mean and contrived most of the times he appeared in the story. With more development, I may have found him less offensive. Perhaps Stork meant for him to be offensive.

Despite all that, Stork really pushed my buttons, which is what successful writing does. I’d rate this story lower if I hadn’t felt anything reading it. Granted, I wasn’t reading through a remotely objective lens. Even though I found the story painful to read at times, and I had a hard time not seeing my own son’s face when I pictured Marcelo, I was glad to have had the experience. Marcelo in the Real World certainly evokes questions, some of which I am still trying to answer for myself.

Rating:

3/5 – recommended

Lawsuit Filed Against Autism Speaks

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I’ve had enough reasons in the past not to support the organization Autism Speaks, but this takes the cake. Age of Autism reported about a lawsuit filed against Autism Speaks by a woman who was offered a position with them. The position was later rescinded. Why? Because she has an autistic child and they did not want to have to make accommodations for her to care for him.

Read the claim documents and decide for yourself if this was pretty heinous. They had already offered her the job and had been given a start date. Clearly they found her qualified for the position. The offer was taken back only after she asked for alternative arrangements because of her son’s school schedule. When her request was denied, she made alternative plans and did not need to adjust her work schedule. So not only do they decline to hire autistic individuals, now they won’t hire someone having to care for an autistic individual.

Way to go, Autism Speaks. What exactly do you think you’re saying?

 

 

 

 

 

*Clip art © by Dixie Allan, ?http://webclipart.about.com

A Reflection on Autism Awareness

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A few years ago, someone, probably that blue-puzzle-piece organization, came up with this idea of a World Autism Awareness Day. I, personally, am aware of autism every minute of every day, but I recognize that this day or Autism Awareness Month are not geared toward me. They’re meant for the people with whom our loved ones on the autism spectrum have to interact. They’re meant to help those “typical” people move past a state of ignorance about the condition, which is all good, right?

I’m all for promoting awareness, but I can’t support that organization anymore. I haven’t for a long time now. I found their ad campaign about autistic children being “kidnapped” by autism offensive and counter-productive. Maybe I would view the organization better if they actually listened to the many autistic individuals who can speak for themselves. And all that money they’ve raised? How much of it is actually going to support and advocacy programs versus salaries and administration of the organization? I think the numbers might be disproportionate to say the least. Maybe some of those millions would be better spent making therapies more affordable for the average family raising a kid on the spectrum. Just a thought.

Perhaps they can raise awareness about the side of autism that doesn’t involve sensational, negative projections of gloom and doom.

I see a need for awareness of the fact that Gus and others like him are smart, funny, sweet, talented, sensitive, emotional, and aware. They are not brats or products of bad parenting because they exhibit behaviors “typical” individuals don’t understand. Yes, some people still think that. I’ve met some recently. I wish they were aware of how obnoxious and mean their dirty looks are and how much I’d like to smack them when they make snide comments about my son’s behaviors. I would love them to have more awareness of how much fortitude it takes to cope with their intolerance.

There are people who still think autism isn’t a real condition—just a construct of the medical field created to give doctors and pharmaceutical companies something to do. They could use some awareness too.

I would love to see more patience, understanding and compassion toward individuals on the autism spectrum. Maybe at some point, awareness will actually lead to acceptance. If the blue-puzzle-piece organization could pull that off, I might give back my support.

 

 

 

 

*Clip art copyrighted by Bobbie Peachey,http://webclipart.about.com

Spotlight on: Kevin Healey, Autism Advocate

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A week shy of World Autism Awareness Day (April 2, 2012), autistic activist Kevin Healey is just over a quarter of the way toward his fundraising goal of £3000 toward the release of his short film Twin Brothers Worlds Apart. Kevin has spent the past decade pushing for awareness, support and services for individuals on the autism spectrum in the UK. Kevin has also recently been selected to carry the Olympic Torch this summer—a great honor and a greater challenge. The proceeds from Twin Brothers Worlds Apart will go to Kevin’s charity, the Staffordshire Autistic Adults Society. In honor of World Autism Awareness Day, throw some support behind this young man who has done so much for the autism community in the UK.

 

 

Update on Jesse Saperstein

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About a year and a half ago, I posted about Jesse Saperstein, who had recently released the book Atypical: Life with Asperger’s in 20 1/3 Chapters. I had the privilege of hearing a presentation and then the pleasure of reading his work. I’m happy to say that he’s back on my radar. I saw on Facebook that a friend of a friend had posted this incredible video, Free-Falling to End Bullying:

Jesse, in conjunction with the Anderson Center for Autism have embarked on a journey to battle bullying of not only individuals on the autism spectrum, but all those victimized based on their “differences.” Along with Jesse, the almost-13-minute video features young people with autism recounting their experiences as former victims of bullying, and there is a brief segment with Temple Grandin sharing her thoughts as well. I encourage you to watch and offer your support for this worthy cause.

Way to go, Jesse!

Teaching Kids on the Autism Spectrum to Swallow Pills

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Originally published June 14, 2010: Back when we tried Gus on Strattera, one of the biggest problems we had was just getting the medication down his throat.  At that point he was about 7 and couldn’t swallow the capsules, so I used the strategy of breaking it open and mixing it into applesauce.  The taste was so godawful, though, that he could only barely choke it down.  All the gagging was traumatic.  Within about 2 weeks, he started refusing to take it.  Even after we stopped the meds, he wouldn’t eat applesauce for a long time.

That particular medication didn’t work out for a number of reasons, but on occasion he still has to take something, allergy medication for example.  This probably doesn’t seem like a big deal.  After all, allergy medications come in childrens’ liquid forms or chewables.  The problem is that children’s medications can be more expensive than their adult, yucky tasting, counterparts, which can also be purchased in dollar-saving bulk.  It seemed to me that this would be a good time for him to learn to swallow pills.

Looking around online, I found some advice, like these Pill Swallowing Tips from About.com, on the best way to accomplish this, but many of the suggestions didn’t work.  He will take a crushed up pill in applesauce for a short period of time, but the taste is so bad that soon he can’t stomach it.  The one trick I that’s worked best for us has been putting a whole, small pill in a spoonful of applesauce.  That way he doesn’t really see, feel or taste it.  Yogurt would probably work just as well for him.

At some point in time we may try medication for Gus again.  Also, we give him a fish oil supplement daily, and it would make him happier, I’m sure, if he could just swallow a capsule instead of the liquid.  Hopefully, this will be a way for him to make that transition.  For now, he’s content.

Update 12/1/2011: Gus started taking Intuniv over the summer, and it seems that our prep work paid off. He swallows the tablets with water, with no problems. He is also finally taking those fish oil capsules like a champ.

Perseverance, Not to be Confused with Perseveration

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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 perseverates, as do many other people along the autism spectrum.  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.

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 runs are killers.  For Gus, with his low muscle tone and endurance, it is beyond challenging.  He often wants to quit, and I can hardly blame him.  Add the fact that he is almost always in last place, far behind his little sister, and I have to ask myself, “why keep him doing it?”

Simple: he has to learn.  Sticking with an obsession is no great feat for him; however, his life is going to be chock full of things that he wants to do but 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.  Running will also build 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 – while 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 12/11: 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.

Update 8/2013: Gus has done well at the 5K distances. The running season is about to kick off, and he expressed an interest in doing even longer races (5 mile and 10Ks). The most exciting thing is that he wants to try out for his school’s Cross Country team. Hopefully, he will qualify. Wish him luck!