Monday, March 31, 2014

Poor Steve Jobs

Ryan's teacher has started using a system called n2y, "your home for effective symbol-supported tools and materials for your students with special needs." It involves rebus-like reading materials on various non-fiction topics.
So far, Ryan has brought home n2y-related worksheets that seem to have been produced by corporate sponsors. The first was about Lego and made reference to the Lego movie being in theaters. Today he brought home a lesson tied to the 30th anniversary of the Macintosh computer. I'm not going to scan the whole thing, but imagine rebuses like the picture above that go along with the text:
Apple (R) made the Macintosh (R) 30 years ago. Today computers are everywhere! Old computers were big and hard to use. The Macintosh was small and easy! Users could just click on the mouse. Today computers are in homes and schools. Computers help people work and communicate. How do you use a computer?
The pictures are supposed to help kids with special needs learn to read; I have no idea how effective this actually is.

Then there are related activities: cut out pictures and match them to other pictures (my kid is 8, I think this is a bit below his level);  a page of vocabulary words; graphing; circle the pictures that relate to the topic; write a story on the topic using thematic symbols (Ryan's entire story was "The Macintosh is a user-friendly computer.").

I don't know if any of this is helpful or educational, but I do know it resulted in the single greatest worksheet Ryan has ever brought home:


It said "Use a pencil to draw glasses on the second Steve Jobs," and Ryan interpreted this to mean drinking glasses. He stacked two drinking glasses on Steve Jobs' head. The bottom glass is half-full. On top of that glass is an upside-down glass, which, naturally, poured water all over poor Steve Jobs, leaving water droplets all over his face. It seems someone then asked Ryan to add some eyeglasses, though I'm sure Steve Jobs would much rather have had a towel.

Sunday, March 30, 2014

The trees are different!

"The trees are different! The cars are different! The signs are different!"

Ryan rattled off a monologue in this vein from the back seat of our rental car that lasted the entire ride from the West Palm Beach airport to his grandparents' house.

Maybe he paused for a block or two. Certainly no longer.

As soon as we arrived at his grandparents' house he started grilling us for details on when we would be going home. Ceaselessly.

We've entered a phase of repeated questioning: Ryan will ask the exact same question, phrased in the exact same way, a dozen or more times in a row, even if he already knows the answer. We answer him the first time. And the second. And then our answers start getting stupid.

"Have we landed?" he asked while cruising at 38,000 feet.

"No."

"Have we landed?"

"Not yet. We'll be in the air for another hour."

"Have we landed?"

"What do you think?"

"Have we landed?"

"..."

"Have we landed?"

"Look out the window."

"Have we landed?"

"Yes."

"Have we landed?"

"Ryan, if you ask me again I'm going to scream."

"Have we landed?"

[screams]

"Have we landed?"
 I'm really not sure what he's going for here, which makes it difficult for me to provide the correct answer. Other questions he asked similarly during this trip included:
"Is it sunny?"
"Are we above the clouds?"
"Are we flying?"
"Can I see the whole view from here?"
"Are we in Florida?"
"Is that a palm tree?"
"Is this milk old?"
As we have established, Ryan's behavior on vacations is entirely different from his regular behavior. At home lately he insists on drinking with a straw to avoid contact with surface bubbles; in Florida he never even asked for a straw. While I'm hoping this repeated questioning will fall into this only-on-vacation category, I do not take it for granted that he's able to ask questions. I'm thrilled to answer questions for him.

Once.



Monday, March 17, 2014

Another reason to hate the anti-vaccine movement

Scientific fact: there is no evidence that vaccinations have anything to do with autism.

I know, you've heard your favorite vapid B-list celebrity tell you otherwise, but dozens of studies on the subject have turned up NO connection. The one study that ever showed a connection was later retracted and shown to be fraudulent.

Plenty of folks in the blogosphere are, thankfully, talking about the importance of vaccinating your children for the safety of the herd, so I don't feel the need to echo their good advice.

I have a secondary concern, though: the depth of fear that parents-to-be have of autism.

The anti-vaccine crowd is so afraid of autism that they're willing to risk their children's health and the health of people around them to avoid having a child perhaps be autistic. They make the emotional (ie not science-based) calculation they do because they have been led to believe Autism is Bad; that having an ASD is worse than catching measles, mumps, rubella, or polio; that they would be remiss if they didn't do everything possible to prevent their child from developing autism.

Is autism that scary?

Autism is often portrayed in the media as an affliction, a disease, an epidemic, a societal burden. In 2010 the fear-mongers at Autism Speaks put up a terrifying video in which a scary narrator had amazing lines like, "I work faster than pediatric AIDS, cancer, and diabetes combined," and , "if you are happily married, I will make sure your marriage fails," or  "I don't sleep, so I make sure you don't either," or even "I am still winning, and you are still scared, and you should be." Thanks to protest from the autism community, this crap is no longer available on YouTube. You can read more of my thoughts on Autism Speaks here (hint: I'm not so fond of them).

I'll admit, I've had some scary, frustrating moments in raising a kid with PDD-NOS, and my kid swims at the shallow end of the spectrum.

But raising any child can be scary and frustrating.

Raising my autistic son has also brought me lots of moments of tremendous joy, just as every other parent experiences.

I have no evidence, but I'm going to go out on a limb and guess that almost nobody has ever experienced joy treating their beloved child for an infectious, life-threatening disease.

My son is healthy, happy, and atypical. Being atypical is neither good nor bad - it's just a different way of being. Illness, on the other hand, is bad - potentially painful, potentially crippling, potentially fatal.

I would be devastated if he contracted measles or polio or another preventable disease because I had withheld standard vaccinations. I find the risks posed by viruses far scarier than autism.
 




Thursday, March 6, 2014

Walking for Autism and Roller Derby

I seem to only get things done when I know someone is counting on me. The only person I feel ok letting down is myself. That's why I started this blog: I love to write, but I lacked the discipline to sit down and do it until I knew there were people looking over my virtual shoulder.

For months now I've been thinking about a novel I want to write. In this story, a more selfish and less responsible version of me abandons her family to walk US Route 1 from Maine to Florida. I think she leaves a note before driving off to Maine, but that's about the extent of her planning. I thought about the story, about how the chapters would alternate between the woman walking and her family figuring out what to do without her, about literary devices to indicate her internal monologue. One morning I walked from Milford to New Haven for research. I even wrote a few pages. And then I got busy with...I don't even know what...and put it aside.

Last night I made a public declaration that this novel is going to get written. I announced my intention to walk across Connecticut from border to border as research and inspiration for this book. I made this announcement in the form of a GoFundMe campaign: as I walk I will be raising money for two charities close to my heart, and I will be blogging my adventure to force myself to write.

The charities that will benefit are the New England Ballet's adaptive dance program for kids with special needs, and CT RollerGirls.


For the past four years, New England Ballet has included young dancers with special needs in an adaptive production of The Nutcracker Suite, alongside members of the professional dance company. They have given Ryan and dozens of other kids with autism, Down syndrome, and various physical challenges the opportunity to express themselves through movement; to learn the discipline that goes along with rehearsing a show; and to gain the self-confidence that comes from performing what you've practiced and getting well-deserved applause.


Raising a kid with special needs isn't easy, and I've owed my sanity over the past few years to roller derby. There's nothing more therapeutic than making good friends and knocking them off their skates. The ladies at CT RollerGirls create an environment that's both inclusive and competitive, allowing all its members to tap into their inner beasts and be their own heroes.


Please join me on my journey!