The Name Says It All

Maybe it was the fact that my husband and I are hosting Thanksgiving dinner and need more seating—or maybe we just needed some retail therapy—but a couple of weeks ago we bought a new couch for our family room. We got a big, comfy leather sectional that has a recliner on each end—my husband’s primary requirement.
This couch replaces a 20-year-old one my husband bought in college. It’s a couch so worn out I’m too embarrassed to show you a photo of it.
I didn’t realize my husband and I were the only family members excited about the new couch until after the movers delivered it. “Come try out the new couch!” I said to James.
“No,” he said. Instead he went into the garage, where we were keeping the old couch until the person whom responded to our Freecycle ad for it could pick it up. “Aren’t we going to keep Couchy?” he asked, resting his head against the back of the old couch.
Couchy? Who is Couchy? Oh, you mean that decrepid thing? “No, someone else is going to take it,” I said. “Now come in the house and try out our new couch!”
“I don’t want to sit on Mr. Couch,” James replied, sulking.
Until that point, I didn’t realize that James was losing a friend. Couchy didn’t mind if he and Ethan jumped up and down on its cushions. It also didn’t care if they got Goldfish crumbs all over it, or spilled juice on it. They could take Couchy’s cushions off and build forts with them any time.
Mr. Couch, on the other hand, won’t put up with any of that nonsense.

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.

Too Good To Be True?

Every morning, I feed my sons these:
















No, these gummy delights aren’t candy—they are vitamins. But, they look so good that I when I saw this, I had to get it.
















Even grownups can use a little "candy" kick start their day.

Buy It Yourself

Who knew my husband Terry would have the opportunity to teach money management skills to our kids while picnicking at Eldorado Canyon State Park? But that’s what happened when we entered the park’s visitor center to use the bathroom, and James caught sight of some overpriced stuffed animals in the center’s tourist shop. I thought we would have to abort the outing because James almost lost it when we told him he couldn’t have a stuffed marmot. But then my ingenious husband gave him the option of using his allowance to buy the toy. James thought it was a great idea and walked out of the building hugging his new buddy. Ethan cried foul when he saw the stuffed animal until Terry told him he could use his allowance to buy himself one. Ethan didn’t think the toy was worth $10, and the crisis dissipated.
I like this allowance thing more and more.

Worry Less, And Just Be

Have you been to Chuck E. Cheese's? It has photo booths in which you sit for a picture, and it comes out as a computer simulated drawing. James and I took this one a few months ago, and I love it. When I look at it, I still feel him all warm and cuddly in my lap.
We went to Chuck E. Cheese's last weekend, and James wanted to take another photo. Only this time, James didn't want to sit in my lap. He wanted to be in the photo by himself. Alrighty then. The problem is James is too short to sit on the bench and be in the photo's frame, so I tried to get him to kneel on the bench. James insisted on sitting. While I practically wrestled him into position, the camera clicked and this is what we got--a blurry, uncentered photo in which James is not all there.
James scampered away from the photo machine, and I looked for a trash can to toss the photo. Then I looked at it again and stuck it in my purse. It reminded me of my mental state some days. Instead of being fully present, my worries blot me out, and I get through my day only half there.
So I'm going to keep these photos as a reminder of what I need to work on this year. I need to keep my worries in check so I don't let all the good things pass without truly appreciating them.

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.

A Zen Moment at the Mini-Golf Course

Yesterday was James' last toddler golf class. We met at the park district's mini-golf course to test his skills. James picked an orange golf club and a blue ball (his favorite color). Then we headed out to the course.
With company in town, we had missed two of the classes, so I knew James was clueless at golf. I'm not a golfer, so I'm pretty clueless, too. We got to the first hole, and I told James to put the ball down on the marker and then hit toward the hole. I soon noticed that James still wanted to hold the club in front of him like it was a crochet club.
I grabbed him and made him stand perpendicular to the ball and then swing. It wasn't natural to James at all.
Then we caught up to a mom with her own 3-year-old. I smiled, thinking, how fun--let's take our toddlers mini golfing. But she was taking this much more seriously. Her son had his very own golf club, which he proudly showed me. She asked us to go ahead of her so we wouldn't intefere with her and her son's golf game.
Our conversation got me nervous. I felt like I need to stay out of her way, which is ridiculous because I'm dealing with a 3-year-old who has never played mini-golf before. The fun of the whole experience just drained away. Soon I was barking orders to James--"Don't pick up the ball!" "Stand like this!" "Hold the club like this!"
What had gotten into me? I could care less about golf--why was I trying to turn James into the next Tiger Woods?
Luckily, my friend and her two kids walked up to us, and that snapped me out of my competitive mind frame. We caught up with each other's lives, and soon I forgot to tell James what to do. He was having a great time hitting the ball in his own special way and getting it into the hole. At one point he and my friend's son were battling over the ball like it was a hockey puck instead of a golf ball.
When James managed to get the ball in the hole, he jumped up and down for joy. We clapped for him like he just make a hole in one at the U.S. Open.
This experience made me realize how easy it is as parents to let our insecurities interfere with our childrens' lives. As much as we want to support our kids, we also don't want to be shown up by other parents. And those feelings suck the joy out of just being with our kids.