Funny Moment

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.

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.

Lawsuit Filed Against Autism Speaks

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

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

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.

 

 

Teaching Kids on the Autism Spectrum to Swallow Pills

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

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!

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.

Morning Haiku

 

Towel in toilet.

Kid in the washing machine.

Why did I get up?

And amidst all this chaos (there’s been much more; those were just the two highlights) Gus just gives me the biggest grin.  I can’t help but laugh.

After brushing his teeth, he looks for a towel to dry his hands and face.

“There’s no towel because you threw it in the toilet.”

“I dropped it in the toilet…Haven’t you ever heard of an accident?  Duh?”

So to sum up: breakfast was a big bowl of chaos with a side of snark.

Good morning!

 

*image from cksinfo.com

Imperfection

Penned in by the idea of perfection?

“The fastest way to break the cycle of perfectionism and become a fearless mother is to give up the idea of doing it perfectly – indeed to embrace uncertainty and imperfection.”

Arianna Huffington, Editor-in-Chief, Huffington Post

I sometimes catch myself feeling that I am the only person, the only parent, who just never seems to ‘get it right.’  That is, of course, a ridiculous, self-indulgent idea.  Just like it’s pretty silly to imagine I’m the only parent who has ever been too cross or too busy or too tired to be as good a parent as I aspire to be.  It would make better sense to wonder where that parent is who doesn’t second guess every other action,  reaction,  decision; who doesn’t beat herself (or himself) up for every screw-up because she doesn’t screw up.  In being the parent of a child with special needs, I think we tend to ramp the pressure up on ourselves even more.  After all, our kids have a hard enough time without us adding to the challenge.  Yet, I don’t recall receiving a Perfect Parent Handbook when Gus was born or when he was diagnosed.   Perfection is unattainable, and it’s important to learn to move on, because mistakes are inevitable.  Not only are they inevitable, but they are an essential aspect of the discovery process.  As the cinematographer Conrad Hall said, “There is a kind of beauty in imperfection.”

How ironic is it that I’d be the first person to advocate for acceptance of my autistic child

with all his imperfections – he is who he is – but it’s damn near impossible for me to automatically extend that same concession to myself?  Now there’s an interesting nugget to chew on.

Do you find it hard to move past a mistake you’ve made with your child?

*image by Tony Wills used under Creative Commons Attribution Share-Alike License 3.0