I Should Have Known

Driving back from my parents’ house last weekend, Ethan uttered, “I hate long car rides.”
This statement was no surprise to me. Ethan, whom only stops moving long enough to watch a 30-minute episode of Transformers Animated, complains routinely about being strapped down in a car for more than 31 minutes. Sure enough, 10 minutes later, Ethan stated, “Man, I hate long car rides.”
I didn’t respond, hoping that by not saying anything, Ethan would drop the topic.
A few minutes later, Ethan asked, “Mommy, do you know what?”
“What?” I said.
“I really hate long car rides.”

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I’ve received this award from Tanya of Teen Autism for being a creative blogger. Tanya's writings about raising a kid on the spectrum are filled with such honesty, integrity and hope that I can’t help but feel inspired even on my most challenging autism days. Thanks, Tanya, so much for the bloggy love.

Catching Up

When Ethan was 4 years old, we bought him a three-wheel scooter. We were hoping, despite his lack of coordination due to his autism diagnosis, that we could work with him to get him to ride it. But it proved to be too much for him, and the scooter soon collected dust in our garage. Ethan walked to his first grade class last year while his peers zoomed by him on various scooters, bikes and skate boards.
Then, a few weeks ago, our neighbor’s son invited Ethan and James to play with him. He and some other kids were racing down the street on their scooters. At his point, Ethan’s three-wheel scooter was too small for him, so one of the girls graciously offered him an extra Razor scooter in her family’s garage. I held my breath as he shakily pushed himself down the sidewalk, trying to stay in the race. But then it clicked, and the look of worry on his face blossomed into a smile. I think practicing taekwondo all these months gave him balance and coordination he needed to ride a scooter.
We bought Ethan his own Razor the next day. Now he zooms down the street to school with all other kids, and my heart swells at the sight of it.

Thrill Of Our Lifetimes

Ethan has graduated from mini-roller coasters to the Twister II, the roller coaster I used to ride as a teenager.
























Thanks to Ethan's sensory-seeking needs, I haven't had this much excitement since I was 17 years old.

Atomic Play

The first person whom came to my mom’s mind when she bought this toy was Ethan. Sure enough, he loved rolling around the inside of this blow-up ball like he was on the spin cycle of a front-load washing machine. I’m sure it gave Ethan the proprioceptive feedback his body craves.

What did he think?
"It's like being inside an atom!"

A Not-So-Typical Summer Camp

Last Friday afternoon, Ethan, James and I met my friend and her two kids at a gymnasium. Ethan had a wonderful time jumping off the trampoline into the foam pit with my friend’s daughter. When the play date was over, Ethan turned to her and said, “When can we see ourselves again?”
This pronoun-mangled statement highlights how Ethan’s autism makes him struggle socially. Using the correct syntax in sentences and reading facial cues make conversation with his peers difficult. Many times, a peer will have to say Ethan's name repeatedly to get his attention. He’ll sometimes respond with silly answers or hyperactivity, which only confuse his peers more.
Ethan’s social struggles made me seriously consider enrolling him in a summer camp for autistic kids. He had a ball at the camp last year, getting his sensory-seeking needs met with swimming and going to bounce houses and parks. The counselors understand autism, so they don’t blink an eye when a boy has a meltdown over not getting to play his CD in the car or has a difficult time transitioning from playing at the park to getting back in the car to go home.
Yet, Ethan had made so much progress socially this year, I wondered whether he was ready to be in a camp with typical kids. After all, the down side of the being in a camp with all autistic kids is that there aren’t any good peer models for Ethan to learn social skills.
In the spring, I looked around for “typical kids” summer camps, but didn’t find any that I felt completely confident about. Often these camps only lasted a week or two, so I worried that by the time Ethan got comfortable with the other kids, it would be over. Or worse, he wouldn’t like it and just refuse to go. So I went with my gut feeling and signed him up for 10 weeks of Camp Le'ale'a.
Two weeks into camp, I’m glad I went with my gut. Even though Ethan may not be getting good peer social models, he’s getting great help from the counselors. They patiently listen to Ethan’s perseverative, one-sided conversations about how many zeros are in the number google. They meet his sensory needs with rough-housing in the park. And yesterday, he excitedly told me that he jumped off the diving board at the swimming pool for the first time.
At this camp, Ethan doesn't have to worry about whether he said or did the right thing to fit in with his peers. When I pick him up, he’s tired and happy, which is how any parent wants to see their kids spending their summer days.

On A Roll

All those extra practice sessions paid off, and Ethan his yellow belt. He was so proud of himself! His growing confidence in the sport is thrilling for me to see.

Click on the Seven Clown Circus button in the sidebar for more Wordful Wednesday.

Pushed Just Enough

One evening last week, Ethan ate dinner with a worried look on his face. When I asked him what was wrong, he said, “I need seven stripes on my belt before I can test for my yellow belt, and I only have two stripes.”
Ethan is scheduled to test for his yellow belt in Taekwondo at the end of the month, but after this conversation, I realized that moving up a rank was not a done deal. He needed some more practice before he would be ready to test, so I resolved to take him to extra classes for the next two weeks.
Helping Ethan succeed in Taekwondo is important to me because this activity has done so much to boost his self-esteem and improve his motor skills. My heart swells when I watch him practice a form, which is a series of choreographed kicks and punches, because a year ago his motor skills were so poor his could not do a single sit-up or push-up. This martial art has helped him work on his motor planning skills in a fun way.
But it’s also a lot of work—more so for Ethan due to his autism. His lack of coordination and poor motor planning make memorizing these forms difficult for him. Ethan’s teachers have to walk the fine line of pushing him to improve his skills without deteriorating his self-esteem.
Thankfully, Ethan’ teachers have done an excellent job. Last Saturday, for example, one of Ethan’s teachers grilled him on a certain move in a form. She made him repeat the move until he got it right. I watched with a knot in my stomach, worried that this grilling would push Ethan into a meltdown. But, thankfully, the teacher acknowledged that Ethan was doing his best and put a stripe on his belt.
Even though some of Ethan’s peers are performing at a higher level than he is, because of his disability, he is working just as hard. The fact that his Taekwondo teachers acknowledge this and are rewarding him for his efforts makes me so grateful we’ve found this wonderful activity for him.

Miniature Greenhouse

Here's a great way to reuse plastic large juice bottles: cut the bottom off the bottle and place it over plants at night to keep the frost off of them. We're using the bottles to help our newly planted strawberry plants survive in Colorado's fickle spring weather.

Click here for more Thifty Green Thursday tips.

Also, today is World Autism Awareness Day. Click here to learn more about events taking place around the globe to provide awareness about this disorder.

Hii - ya!

When Ethan started tae-kwon-do in January, I wasn’t sure how long this activity would last. Ethan’s lack of coordination, due to his autism, makes sports hard for him, and he gets discouraged easily. But the teachers at the tae-kwon-do studio have been so encouraging. When Ethan forgets the movements of a routine, they patiently help him through it. All the hard work paid off when Ethan moved up to a orange belt last week. The spring in his step when he walks into the studio now makes me think this sport is a keeper.

Happy Blogoversary To Me

In March, I not only celebrate Ethan and James’ birthdays, but the birth of my blog, “Sippy Cup Adventures,” which quickly became “The Clothesline.” Looking over a year’s worth of posts made me realize that I worry a lot. Take one of my first posts on "Sippy Cup Adventures," titled “Countdown to B-Day.” In this post, I practically have a meltdown over the thought of Ethan having a meltdown from celebrating his birthday at Pump It Up. I was afraid the kids, noise and excitement would be too much for Ethan, whom has autism. But all that worry was for nought--we had such a great time we threw similar party for Ethan and James this year. How was my mental state this time around? A little better—at least I didn’t hyperventilate. I’m trying to take my own advice.

A Mammoth Opportunity

Last weekend, the National Sports Center for the Disabled, in conjunction with the Colorado Mammoth lacrosse team, hosted a free 2-hour lacrosse clinic. When I told Ethan he was going to participate in it, he asked how lacrosse is played.
“It’s like soccer, only you catch and carry the ball with a stick,” I said.
“How do you catch a ball with a stick?” Ethan asked.
Oh, yeah—I forget to mention there’s a net at the end of the stick. Shows you what I jock I am. No worries—those Mammoth players can fill you in on the details.
And two Mammoth players—Nick Carlson and Tom Ethington—did, along with a host of local college and high school lacrosse players whom volunteered for the event. The volunteers drilled the participants on the basics—passing, cradling the ball, and scoring.
But having fun was the clinic’s biggest priority. Even when a participant dropped the ball or missed the goal by a mile, the volunteers cheered them on.

In addition to learning lacrosse, Ethan got to speak with “Wooly,” the team’s mascot. I can’t think of a better lacrosse team for Ethan to root for, since, for him, prehistoric mammals rank right up there with dinosaurs.
At the end of the clinic, the participants had a Q&A with Carlson and Ethington. Ethan raised his hand. I held my breath.
“Do we get an award now?” Ethan asked.
“We’ve got snacks and goody bags for you,” said Carlson.
Hey, that’s much better than an award.
I give the NSCD and the Colorado Mammoths an award for hosting an event that gave kids whom struggle with sports a chance to shine.

Therapeutic Bouncing

If you have a kid on the autism spectrum, whom also happens to be a sensory seeker, I’ll bet you’ve gone to facility with “jumpy castles.” In fact, I suspect you've celebrated their birthdays at these places because your kids love it. With all the jumping, sliding and crashing into inflatable slides and jumping rings, these places give kids with proprioceptive and vestibular sensory issues the input their bodies crave.

A new joint—The Hop—opened a few months ago by our house. I’ve gone there two days in a row while Ethan and James are on Christmas break from school. I pay $10 to let my kids crash into puffy, plastic walls, and I get a few moments to chat with my friends—it’s a win/win situation!

A Ticket To Ride

My boys are home from school for Christmas break, and I need to come up with some activities to keep us all from getting cabin fever. While the two are enjoying “crash pad” now, I know it will get old soon, so I came up with this variation.
Instead of Ethan and James taking turns running headlong into the bean bags on the couch, they take turns sitting in a laundry basket and pushing each other into the bean bags. The “heavy work” of pushing James gives Ethan the proprioceptive feedback his muscles and joints need.
Hopefully these two activities will help keep our house from turning into a wrestling arena during holiday downtime.

Crash Pad

It’s common for kids with autism to poorly process information obtained through their senses, such as taste, touch and smell. For example, kids oversensitive to touch can’t tolerate having lotion rubbed into their skin.
Ethan has poor proprioception, which affects the way he positions and moves his body. He has little body awareness and poor motor planning. His lack of proprioception is evident in the way he slaps his feet when he walks, chews on his clothes and bumps into people and objects. All these actions give his muscles and joints the additional feedback they crave.
Ethan poor proprioception has led to some behavior problems. His body’s need for feedback makes him want to wrestle with James, which often leads to James getting hurt since Ethan literally doesn’t know his own strength.
In order to provide a positive outlet for Ethan’s physical needs, I’ve created a “crash pad” in my living room. I got this idea from the book, The Out-of-Sync Child Has Fun, by Carol Stock Kranowitz. I took two bean bags my mom made me for the boys and piled them on the couch. Then Ethan runs headlong into them, ricocheting off of them into a heap on the floor. At first I worried he was crashing into the bean bags too hard, but then I saw the joyous look on his face after he “crashed.” This pad hit the spot.

Is This School The Right Fit?

Terry and I have mixed feelings about Ethan’s school. On one hand, the staff is wonderful—they are committed to accommodating Ethan’s academic needs. On the other, Ethan tells me on an almost daily basis that he doesn’t like school.
Because of his autism, Ethan has a difficult time making friends. During recess, he only wants to play “dinosaurs,” and gets frustrated when kids want to play other games. He has no give or take—when another child wants to be the “lead” dinosaur, he gets upset. He can’t negotiate through these situations, and ends up feeling isolated.
Unfortunately, this issue isn’t a priority for the school. It only offers social skills groups to kids whom don’t even attempt to talk to their peers or are aggressive. In its mind, Ethan is doing great because he says “hello” and “goodbye” to his peers, and he hasn’t become a big behavioral problem in the classroom.
But, as Ethan’s psychologist says, if his deficits aren’t addressed now, the the social gap between him and his peers will only widen. No matter how smart you are, if you can’t get along with people, how will you succeed in life?
Terry and I felt resigned to making the best of Ethan’s school until we heard about a new charter school in the area. The school, which if approved, would start in the fall of 2009. It would accommodate the needs of “divergent gifted learners.” By that term, it means taking kids whom are underachieving or unsuccessful, and “provide these students with an educational environment that will equip them with valuable academic, emotional and social skills that will enable them to become successful students and individuals.” To do that, the school would limit enrollment to 150 students for grades kindergarten to eighth grade. It would also staff the school with special education teachers, whom are trained in accommodating special needs kids.

A school that takes social skills as seriously as academic skills—this prospect is extremely appealing. But how, exactly, would the school do that? These are questions that need to be answered before Terry and I pursue this option further. At any rate, the possibility of sending Ethan to a school that he really enjoys would make our hearts sing.

Brotherly Love

As a parent, I want my two sons to develop a loving relationship that will last through their adult lives. Unfortunately, Ethan’s autism disorder makes this challenging at times. Even though Ethan is three years older than James, his disorder makes it difficult for him to be a role model to James. Ethan struggles with reciprocal play, and often yells at James to leave him alone.
I needed some advice on how to make my sons’ relationship more positive, which is why I attended a talk by Dr. Megan P. Martins of JFK Partners/University of Colorado Denver on how to support siblings of individuals with autism. The talk focused on how having a sibling with autism impacts the relationship, and how parents can support siblings through adulthood.
The good news, according to Dr. Martins, is that studies have shown that siblings of individuals with autism end up fine, with no major psychological impact from the experience. In fact, many end up in careers that help those with disabilities, such as social work or psychology.
But children do experience a lot of negative emotions as a result of growing up with a sibling with autism. These emotions include anger, embarrassment, guilt, frustration, jealousy, loneliness, worry and loss. James is only 3 years old, but already I see him frustrated that Ethan doesn’t want to play with him as much as a “typical” sibling would. Plus, he gets confused and worried when Ethan has a meltdown.
One thing parents need to do to ease these stressors is to constantly explain what this complex neurological disorder is to the sibling. These conversations should be done in small doses on a consistent basis. Dr. Martins said the “autism” label wouldn’t mean anything to James until he’s 6 years old. In the mean time, I need to use concrete language to help situations make more sense to James. For example, when Ethan has a meltdown, it’s best for me to say, “Ethan is feeling sad right now, but it’s ok.” At this stage, letting James know he’s safe even when Ethan acts out of control is what’s most important.
As James gets older, Dr. Martins says getting James into a siblings group is a great way to provide support. The group would help James connect with peers who are going through a similar situation. In addition, it’s important to get James involved in our treatment of Ethan’s autism. For example, letting James attend Ethan’s social skills group is one way to expose him to Ethan’s deficits and show him strategies on how to deal with them.
Because parents of children with autism are often overwhelmed with trying to treat the disorder with numerous therapies, it’s crucial to spend special time with their typical child. Also, it’s important to find activities both children enjoy doing together, such as playing a board game or coloring, so that they have positive experiences to fall back on.
Relationships, even with siblings, don't come easy for people with autism. But with some extra effort on parents' part, a loving, supportive relationship can be realized.

The Way In

Finding a sport for Ethan has been a challenge. We gave soccer a shot, but quit after a season because Ethan found the social aspects of the sport too overwhelming. Ethan loves the water, so we tried swimming. As an individual sport, it wouldn’t be socially taxing on him. After a couple years of lessons, Ethan can swim, but isn’t interested in learning competitive strokes, like the crawl stroke.
Since we were back to square one, we decided to take advantage of a study conducted by Children’s Hospital of Denver. The study looked at the benefits of therapeutic horseback riding for children with autism. It would see if horseback riding improved emotional regulation, movement ability, and daily living skills for these kids.
I have not done much horseback riding, so I wasn’t sure how it would improve Ethan’s physical strength and coordination. I also had no idea if he would like it. Turns out, he did. Mainly, Ethan liked Pretty, the horse he rode every week. He liked her so much, that when he won an award at school for being responsible, he showed Pretty his medal. His relationship with this patient and gentle horse motivated him to follow through with all the exercises, like posting, trotting and riding through obstacle courses.
These exercises, in turn, have improved his strength, balance and coordination. Before the study, Ethan did not have enough core strength to do a single sit-up or push-up. He also had a difficult time following simple directions, such as “touch your nose with one hand and touch your stomach with your other hand.” After 10 weeks of horseback riding, Ethan can do 10 sit-ups and push-ups, and follow most two-step directions.
I owe Pretty for the happiness I felt when I saw Ethan do a push up. She was Ethan’s guide to improved physical and emotional well being.

MTV For Dinosaur Lovers

Here is proof you can find anything on YouTube. This video combines both of Ethan's passions--dinosaurs and alternative rock music. We discovered these videos when we were looking for all things dinosaur on YouTube. At first I thought this was the only one, but soon Ethan had me typing in names of dinosaurs that I had never heard of, like liopleurdon and eoraptor, and all these "tributes" popped up.

This video gives a whole new meaning to Green Day's song, "Boulevard of Broken Dreams."

A Minor Miracle

Two Thanksgivings ago, my mom asked Ethan what kind of pie he wanted with his Turkey Day dinner. "I don't wany any pie made with fruits or vegetables," he said. So that Thanksgiving, we ate pumpkin pie while he tucked into a Hostess chocolate cupcake.

It's fairly common for kids on the autism spectrum to have an aversion to some type of food, mainly because they don't like its texture. Some kids don't like meat, others don't like bread. For Ethan, it was fruits and vegetables. And I'm talking every kind of fruit or vegetable you could think of--even raisins, which are so sweet, they hardly count as a fruit.

For a while, I tried every trick in the book to get some fruits and vegetables into Ethan's diet. I made cookies with shredded carrots, raisins and loads of chocolate chips. He would take one bite and spit out every shred of carrot and raisin in the cookie. People advised me to make smoothies, but I knew that was a no go because along with Ethan's aversion to fruits and vegetables, he also hated foods mixed up together. Every food--chicken nuggets, rice, a token vegetable--had a separate place on his plate.

So over the past two years, we've used a lot vitamin supplements to keep Ethan's health up while we chipped away at his hatred toward fruits and vegetables. Unfortunately we would have to reward Ethan for eating a slice of apple or lettuce leaf with sugar, his hands-down favorite food group. At least it got him to eat those vile foods.

But the real turning point occured when Ethan turned 5 years old. Suddenly, he had an appetite, so eating yucky foods became more appealing than feeling hungry. The more fruits and vegetables he ate, the braver I got, to the point where I plunked down this in front of him.

It's lasagna, the ultimate casserole. It's got noodles and cheese, which he loves, but those goodies are covered in tomato sauce, which is iffy. I held my breath when I put the plate in front of Ethan. He looked suspiciously at it, but his hunger got the best of him, and he took a bite. The next thing I knew, the plate was clean. I was estatic. Maybe I won't have to cook two meals for dinner anymore.

There Is No Schmautism About Autism

My son Ethan has autism, but it's not obvious to people who don't know much about the disorder. I inwardly cringe when I try to explain to folks how autism makes my son have a difficult time staying focused on a task, become hyperactive, and, when he is in social situations, act super silly. Those traits make him sound more like a brat than someone with a disability.

When I read this excerpt from comedian Denis Leary's upcoming book, Why We Suck, all my worst fears about people's perceptions of Ethan were confirmed. Here is the excerpt, from a chapter in the book titled "Autism-Schautism":

"There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can't compete academically, so they throw money into the happy laps of shrinks . . . To get back diagnoses that help explain away the deficiencies of their junior morons. I don't give a [bleep] what these crackerjack whack jobs tell you - yer kid is NOT autistic. He's just stupid. Or lazy. Or both."

All I can say is, I wish it were that simple, Denis. I would give anything for Ethan's lifelong disability to be a figment of my imagination.

The fact that Leary devoted a whole chapter in his book to autism shows how this disorder has confused and scared so many people. One reason for the confusion is that autism has gone from a specific disorder to a "spectrum" disorder. When my brother was diagnosed with autism in the 1970's, it was a fairly rare disability. Only about one in 1,500 kids were diagnosed with autism then, and those kids usually ended up in a mental hospital for the rest of their lives. That's what happened to my 33-year-old brother: he can't speak, he needs 24/7 supervision, and spends his days in an adult day care facility.

Then by the 1990's the rate of kids being diagnosed with autism skyrocketed to 1 in 150 kids.
That's a pretty scary leap in statistics. How do you explain it? Obviously, autism runs in my family, so I can confidently say genetics plays a role.

Another reason for the increased rate is that doctors began to expand the definition of autism to include kids that are "higher functioning." These kids have normal intelligence and a fairly good command of language, but still have the core deficits that make up autism, which are impaired reciprocal social interaction, impaired communication, and restricted, repetitive behaviors, interests and activities.

I didn't buy the spectrum argument when Ethan was first diagnosed. I went to the evaluation thinking he wouldn't be diagnosed because he didn't remind me of my brother. I was shocked to hear that yes, in fact, Ethan and my brother do have the same disability, but they are on different points of the spectrum. I didn't want autism to be a "spectrum" disorder because I did not want that label for my son.

Now I'm very grateful that doctors have expanded the definition of autism because it has provided Ethan with access to services--speech therapy, occupational therapy, behavioral therapy--that he otherwise probably wouldn't have gotten. These services have helped Ethan flourish. When he first started occupational therapy, he didn't have the fine motor skills to hold a pencil. Now he draws and colors pictures of dinosaurs, his special interest.

More importantly, these services have boosted Ethan's confidence. When a children's book author and illustrator visited Ethan's school last week, Ethan introduced himself as a "fellow artist," and asked him about certain drawing techniques. If I had taken Denis Leary's parenting advice, Ethan wouldn't have any self-esteem and would probably end up a school troublemaker instead of a budding artist.

As disgusting as it is that Leary is trying to make a buck by ridiculing disabled children, it is giving the autism community an opportunity to speak up and educate folks about this complicated disorder. Better understanding will only make it easier for kids with autism to thrive and become productive members of society. Isn't that what all parents, including Leary, want?