Beautiful Autism

Moe is a beautiful child. I'm not saying this because I am his mother and I have to think he's perfect. He really is gorgeous.

He has light blue eyes.

Moe, 18 months

He has perfect curly hair.

To. Die. For.

He has a button nose, and rosy cheeks, and a perfect smile filled with perfect little white teeth.

I've heard it said many times that kids with autism tend to be unusually good looking. Moe's teacher said she's noticed in her many years of experience that her autistic students are almost always really beautiful. She noted "it's not fair," and I knew exactly what she meant.

Then again, isn't it fair? Since one of the primary markers of autism is difficulty with social interactions, wouldn't it be only fair to have a beautiful face, one that might draw people to you? Genetically this seems to make sense. Adults with autism (or shyness or other social anxieties) might find it difficult to meet people. But those who are good looking might have a better chance at attracting a mate, passing along both those beautiful features and their autistic ones. (This may also be why there are such high rates of autism in the Bay Area: all those smart engineers who are valued for their brains and higher earning potential. Those "geeky" traits might not be fully appreciated elsewhere.)

Did I mention I'm not a scientist?
Did I mention I married an engineer?

Moe's teachers are immediately drawn to him. He is a lovable kid, but he can be difficult, mischievous, and frustrating. He bites. He makes an enormous mess at snack time. He takes off his diaper. Jeff and I often find ourselves saying "it's a good thing you're cute." I know Moe's teachers and therapists would teach him with love and professionalism no matter what he looked like, but his adorable features do serve him well. You want to help him. You'll do almost anything to see him smile.

This isn't always a good thing. During Moe's intense year of ABA (behavior therapy), Moe walked all over some of the less experienced therapists. It's hard to say no to his face. It's hard to make yourself stop his giggles to get Moe to focus and do some work. And he knows it. He uses it.

If you looked like this, wouldn't you?

Written for this week's Red Writing Hood prompt: Physical beauty. It can open doors - and can also shut them.Write a scene in which a physically beautiful character is somehow impacted by that trait.

Sibling Rivalry

I worried that Jelly would get lost amid Moe's needs, his therapy schedules, the extra time and energy he requires. But from her earliest days, Jelly has demanded my attention.

When Moe sits on my lap, she demands to sit there too. When Moe has a toy, she wants it. She even gets upset when I give him his vitamins. She is not old enough to understand that she is not the center of the universe. And I worry about the day she figures out that Moe's needs will need to come first. 

Will she be jealous of the extra attention he requires?
Will she resent the things she can't do because they don't fit with Moe's schedule?
Will she envy the relationships her friends have with their siblings, the vacations and outings other families can take that we cannot?
Will she act out in an effort to remind us that she, too, deserves one hundred percent?

Moe does not yet seem jealous of Jelly. He is happy to be with me, or play on his own. He doesn't put up a fight when Jelly takes a toy right out of his hands. But someday he might.

Will he be jealous of the attention Jelly gets just because she is able to ask for it?
Will he hide behind her vivacious personality, fading into the background?
Will he be jealous of how easily Jelly learns new things, makes friends, navigates the world?
Or will jealousy be something with which Moe is never burdened?

Sibling rivalry is a normal part of growing up. Jealousies may be a little more complicated in families that have special needs, but it is not unique to us. I am heartened by the people I know who have siblings with disabilities. They are educated and compassionate, often becoming advocates and educators both personally and professionally. But most important, they are brothers and sisters like any other: annoying, loving, protecting, and with a relationship all their own.

Today's piece was inspired by the Red Writing Hood prompt "jealousy."

 

A Salute to Lieutenant

Our family dog was named BJ. She was an adorable mixed breed puppy who turned into an ugly dog. We loved her fiercely.

After I left for college, BJ was my brother Billy's constant companion. When she grew old and died, as dogs do, we were sad but old enough to understand. My mom, who was tired of barking and messes and the general inconveniences of owning a dog, swore she'd never have another.

When Billy's brain tumor returned, and aggressive surgery left him with extreme left-side weakness, he had to move home. He was in his early twenties. When "for a while" turned into "long term," he was understandably depressed. He asked for a dog.

There were rules: no puppies, already housebroken, not too big. Something like a beagle, we agreed. My brother, now motivated to get out of bed in the morning, would surf the internet researching dogs. In January 2000, Superbowl weekend, we drove to Beagles & Buddies dog rescue.

The four of us wandered the premises, greeted by the many dogs playing in the yard. I fell instantly in love with Beauty, an elegant fox hound who followed me our entire visit. Shiloh the puppy, was still recovering from injuries sustained at birth, and would not be available for many months. We asked to see the back kennels.

Billy spotted Lieutenant right away. Louie, as we would come to call him, is a "lemon" beagle mix, with light brown markings on white fur. He was young but not a puppy, playful and energetic, but jumped up on a bench to sit with Billy when he needed a rest. Louie came home with us that afternoon.

Lou, as is common with rescue dogs, had some behavior issues. It took many weeks to get him to do his business in the dog run rather than on the grass. Several times, he sprinted out the front door and we almost lost him. He was incredibly affectionate, but could turn aggressive toward visitors, though he never once even curled a lip to a member of our immediate family.

Louie stayed with Billy for the next two years, as my brother slowly descended further into his illness. Lou was the first dog my father ever allowed on a piece of furniture, and to this day, nine years after my brother's death, Lou still naps on Billy's bed.

Louie's aggressive tendencies are now gone. When I visit, if I'm the first awake in the morning, I sit on the floor with Lou cuddled in my lap. I always notice how his spots go all the way to his skin. He creeps slowly like a hunter when a tablecloth brushes his back. When you open the back door for him, he dashes out, sprinting counter-clockwise around the pool, before going to his designated potty spot. He still cheats sometimes and goes on the grass. Louie's elbows are calloused from chasing lizards up the side of the house. Sometimes he catches them. He pounces like a puppy when chasing a ball.

Lieutenant is old, at least 13 but we suspect older, his beagle's puppy-face and bounding nature betraying his true age. He was recently affected with a strange loss of balance, and although mostly recovered, we are reminded that he is not going to live forever. His death, when it comes, will be significant. He is one of the few things we still have that my brother also loved, and we are scared to lose that connection. My dad will take it the hardest.

We will be sad, but we are old enough to understand.

This week's RemembeRED prompt was to write about a time something terrible happened, but looking back, it brought something wonderful.

Notice of Eviction

To Autism:

This letter is to inform you that, effective today, you are formally asked to vacate the premises. Your presence here shall no longer be tolerated.

I don’t remember asking you to move in. You just let yourself in, uninvited and unannounced. I don’t know if you came via injection, ingestion, inhalation or inheritance and frankly I don’t care. However you got here, I just want you to leave.

You are the worst kind of house guest.

You have imposed yourself in every aspect of our lives. You do not allow us a single meal or visit to the park without your presence.

You’ve cost us and the state of CA, two entities who can hardly afford your exorbitant prices, approximately $300,000 in the two years since your arrivial. Funds were spent on multiple therapies (speech, behavior, and occupational), as well as numerous specialty items (including but not limited to weighted lap pads, chewy tubes, and three identical stuffed monkey toys), not to mention, time, gas, and additional bottles of wine consumed. Complete, itemized list available upon request.

Specialists have told us you will not go easily. They say it takes years to evict you, if it’s even possible. Others say to just let you move in and accept your presence. They say as I get to know you I might even learn to like you. I admit, at times you can be a charming devil, but I’ll take my chances. We can keep in touch on Facebook.

Please remember to lock the door on your way out. I won’t let you lead Moe outside only to find him drowned in a neighbor’s pool. This story is all too common and invades my dreams at night. I guess you’ve taken root there too.

Thank you for choosing to live in the Bush Family. You’ve taught us much and altered our lives forever. Now get out.

Sincerely,
Jennifer Bush
Director of Operations, Bush Family

Today's Red Writing Hood prompt was to write a formal letter to your greatest fear.

 

Stolen

There were words: first baby, then banana. We looked at belly buttons, pointed at pictures, made animal sounds.

And then the words disappeared: first banana, then baby.

Stolen.

I thought autism had taken everything. It wanted more than just words. It wanted my whole child, his mind, his innocence, his future.

It wanted to steal from me too. Wanted my time, my friends, my dreams, my marriage.

But now, as I work to clean up the mess, straighten up the drawers of life that were thrown open, their contents strewn about, I can see that all was not lost.

Friends who stuck by. A husband and father who loves no matter what. Hope above all.

And once in a while, we even find a word or two.

 

Post written as part of The Red Dress Club, and is, of course, open to concrit. 

Today's prompt: "Someone has stolen something from you (or your character). Something of tremendous value. What will you do to get it back? Or will you give up?"

Fish For Sale

For Sale: Two Fish

Two beautiful African Cichlids for sale. Possibly South American. Does it matter? They're fish. They're yellow. You're watching them swim, not talking to them.

Fish are flexible and won't mind moving. I watched them from their first days when they were hatched into their mother's mouth. Yes, it's weird, but that's what happens. I rejoiced as they were first released and allowed to swim on their own, cried when so many of their brothers and sisters were eaten by other fish in the tank. Okay, I didn't cry so much as cringe, but these two survived, so they're probably the smartest or strongest of the litter. Pack? School? Whatever.

These two fish were born at a large office at Microsoft, but later adopted and moved to a cubicle at Apple. One fish seems to have made the transition completely, although I often find the other scratching "I'm a PC" in the gravel. Fish were expecting to stay at Apple, but when adoptive father, my husband, moved to another competing company, fish were relocated to our home. Fish were instrumental in the launch of the iPhone and may be aware of much of Silicon Valley's intellectual property.

Wouldn't even begin to know how to tell you the genders of these fish but I'm pretty sure they are the same, since they have not bred their current tank, despite what I am sure are optimal breeding conditions. Fish are approximately 6 years old. You'd think they'd be dead by now but apparently they are just scraping middle age.

Ten gallon tank requires minimal care. Just change the water when you can no longer see in the tank. At least that's what my husband does. When water levels get low enough, noise from filter will make you believe you have a waterfall in your living room. Great for those who enjoy white noise for sleeping. Warning: sound will also make you want to pee.

Cichlids are known as "aggressive" but as far as I can tell, they only fight with other fish. They have never harmed any children, especially young, sensory-seeking boys who like to put their hands in the tank. Fish may hide behind plastic plants (included) for days after such incidents but they seem fine. Will include extra fish antibiotics.

All reasonable offers considered.

Today's post inspired by The Red Dress Club: We want you to imagine you've just had a fight with a friend, a co-worker, husband, significant other, child - you get the picture. You're mad. It's time for revenge. What would you sell? Write a humorous listing for eBay or Craig's List. Talk about the history of the items, why they must go.

 

Forever Linked

I could never have imagined that events so seemingly unrelated would be forever linked in my mind. There are four events, two then two more, that, although separated by time and distance, are such strong reminders of each other that I cannot think of one without thinking of the others.

The first two took place in 1994. I was a senior in college, living in a small cottage in Berkeley, my parents and brother in the San Fernando Valley. My roommate and I had ignored an early morning phone call, but when it rang again I picked up. It was my mom, telling me about an earthquake. It was big, she said, lots of damage, but they were okay. I turned on the TV to see the ruins caused by what we learned to be the Northridge quake, my roommate unable to reach her mom who lived in that very same city. It took at least a half hour before we noticed the blinking light on the answering machine: a message from her mom, also safe, who had been our first early morning caller.

Some days later, I received another phone call. This time, the news was of my brother’s first seizure, the starting gun to what turned out to be a long race against the brain tumor that would eventually kill him.

Years later, my brother still alive but bedridden and only sometimes lucid, I was living in a different place and with a different roommate, but we received another early morning call. This one started “turn on the TV,” which we did, just as a plane crashed into the second twin tower. Shortly after that, I went down to visit my family, and realized that my brother, so worldly yet a believer in the goodness of people, had no knowledge of those events. The understanding that there was no longer a need to let him in on significant world events had a profound effect on me.

In early March, to celebrate my birthday, I went to New York to visit a friend. That was the first time I saw the empty space at Ground Zero. My parents called me to cut my trip short as they believed the end was near for my brother. It turned out those weren’t his last days, though he died toward the end of the month.

An earthquake, a seizure, and a terrorist attack all reported to me through phone calls. But I was there for the last event, sitting on my brother’s bed as his breathing slowed. It stopped, and then the whole world shifted.

Written as part of The Red Dress Club, a community of writers. This week's prompt was to write a piece that begins with the line, "I could never have imagined" and ends with the line, "Then the whole world shifted."

Letter to Myself (August, 2009)

Dear Jennie,

A blizzard is coming. It is a storm of epic proportions, one that was not predicted nor one you could prepare for. The blizzard will knock out your power, blind you, keep you snowed in for months. Don’t get me wrong, you’re still in California. The sun may even be shining.

You will be hit by the storms that follow an autism diagnosis, the blizzard of early intervention. You will be trapped inside your house. Therapists will come and go, three times a day and you will not be allowed to leave. They will leave your house, your schedule, your emotions, in chaos. You will watch them interact with your child, but you will not participate – not much anyway. You will be sick with cabin fever for months.

You will also have a newborn to care for.

This will be one of the most trying times of your life, but you will survive. You will write and you will share survival tips with others who are also snowed in, living off cans of soup and the last crumbs of their emotional reserves.

In time, the sidewalks will get shoveled and the streets will get plowed. Your autism storm will not end, but snow and ice will gradually turn to rain. When your son starts school, the sun will peek through the clouds and it will be safe to go outside. There won’t be any rainbows, and memories of the blizzard will continue to chill you the bone. But you will live through it.

You will survive.


Written for this week's Red Dress Club prompt: to imagine you are trapped alone or with others at a single place during a ginormous blizzard or its aftermath.

Dreams of a Parallel Universe

“Autism,” the doctor said. But surely she didn’t mean my baby. Can’t she see how smart he is? Doesn’t she know he plays peek-a-boo?

Even though we had suspected, the words hit me like a lightning bolt. Fear pulsed through my body. Great tears welled up as I tried to make sense of what this meant for us, for him. He was barely 2 years old, and already so far behind.

“Is there anything else I can help you with?” “Just tell me he’s going to be okay.”

“Kleenex?” she offered.

Life would never be the same. My son wasn’t normal. “Neurotypical” I would learn to call it, months later, after I absorbed the lingo. Other people survived this; could I? Parents faced much worse, I knew, but I wasn’t sure I was strong enough. Quietly, we left the office.

Reality hits after soon after. Speech therapy, occupational therapy, behavior therapy fills our days. Time passes slowly as Moe seems to regress even further, or maybe I’m just seeing his delays in new light. Ugly tantrums take the place of baby giggles, often taking me long minutes or even hours to figure out he is just hungry, or tired, or cold.

Visions of an uncertain future crowd my brain. Will he be happy, have friends, learn to drive? X-ray my mind and you will see my dream of a parallel universe. Young children are playing and when my son runs up to me, I notice he is shivering slightly. “Zip up my coat, Mama – I’m cold.”

This post was written for The Red Dress Club. This week's assignment was to write a short piece in which each sentence starts with a the next letter of the alphabet. This piece is 26 sentences long.