Autism Awareness:: Zach’s Story

Our days start early. My husband, David, wakes up at 5:30 am and gets ready for work. Our 14-year old son, Zach, used to get out of bed at the same time but now that he’s hit those magical teenage years, it’s hard to get him out of bed. He’s a light sleeper, but he loves to lie in bed as long as he can. Our 13-year old daughter, Elise, has been up a while now and sits at the computer with her headset on. She’s checking her Facebook and chatting up a few friends before they all catch their buses to head to school for the day.

After David is out the door to work, I try to rouse Zach out of bed again but all I get from him is silence. He’s curled up in his comforter on the futon in his room. He has a regular twin size bed right next to the futon but insists on sleeping on the wooden framed futon. It’s smaller than his bed, but he likes it because he feels more pressure from the wooden frame than he would if he were lying on the regular bed with a mattress. He also curls up on the futon so that he doesn’t have any of his limbs hanging off of it. I stand at the end of the futon and call to him to wake up. In response, I’m told, “But Mom, I don’t want to get up. I’m too comfy here. It’s like I’m in blanket heaven.”  The bus will be here before we know it so I keep doing my “mom nag” until he drags himself out of bed.

“Zach, take your medicine right away,” I say. “Hold on, Mom. I’m going outside to look for moths,” Zach says back.

It’s that time of year that he waits for all winter. His life has revolved around creepy crawly things since he was a wee one. Now that the weather is a little warmer and the green is starting to creep back out of the earth, Zach spends every moment he can outside. He’s usually outside long past sunset and is often found with a flashlight looking for whatever slithers, flies, creeps, or crawls.

This morning, he’s got his net in one hand and one of what seems like hundreds of bug jars in the other hand. He’s out the door before I can stop him. His medicine sits on the counter and I look at the clock and figure that I can give him at least five minutes to look for moths. I pack his snack and his gym clothes into his backpack and putter around the kitchen. Five minutes later, I call out the door, “Zach, you need to come in and take your medicine and eat breakfast.”

As Zach walks in the door and sheds his shoes, he holds up his bug jar to show me the moth he found warming itself in the spring morning sun on the side of the house. I give him the validation he’s looking for and then prod him into the kitchen for his medicine. It’s only been the last three years that he’s been on medication. We waited a while until we could wait no longer. It was a hard decision to make, but we knew it was the best for him and everyone else.

Zach was officially diagnosed with autism when he was five years old. He had a “working diagnosis” of autism when he started intervention at 18 months old. Most children don’t have a diagnosis or start intervention until they’re in preschool. We were fortunate to see that something was going on early.

After he takes his pills, he pulls the entire bag of cereal out of the box and pours one of the biggest bowls of cereal I have ever seen. Cheerios and milk spill over the bowl and onto the counter. Some even end up on the floor and he calls the dogs to lick up the mess. He’s recently discovered that he doesn’t have to clean up the floor if he can get the dogs to do it for him. It doesn’t matter that I’ve told him he needs to wipe it with a rag after the dogs have cleaned up because it’s not really clean. I remind him to clean up his mess and he complains about how much his life sucks. He tells me, “This is the worst part of my life; cleaning up my messes.” I tell him he’ll get over it and to sit down and eat. He walks from the counter to his place at the table and spills more milk and Cheerios on his placemat. His placemat is the only one at the table. The placemat denotes that this is HIS spot. Like Dr. Sheldon Cooper on “Big Bang Theory,” no one else is supposed to sit in his spot.

He’s recently hit puberty and his growth spurt and after he finishes the bowl of cereal, he pours another. I remind him that he doesn’t have time for this and that his bus will be here soon, and as usual, he makes a second mess all over again and then has to try to wolf this bowl down because time is running out. It doesn’t matter that I’ve tried to put my foot down. He poured that bowl of cereal and he intends to eat it.

Now, we’re really running out of time. I have to create a sense of urgency with him so I start telling him all the stuff he needs to do to get out the door on time. He tells me that it’s okay if he’s not on time because the bus driver will drive down the street and turn around for him if he’s not at the end of the driveway when she arrives.

Zach takes a bus by himself. He has been doing this since the beginning of the last school year. The bus is too much sensory, visual, and auditory stimulation for him. He was suspended from the bus for two weeks last school year due to behavioral issues. Students that receive three write-ups from the bus driver are put on suspension. Yes, he’d gotten three just a month after school started and the school and bus company devised a new strategy. The bus drops off the elementary kids off at the school down the road, and then swings by our house to pick Zach up and take him to the middle/high school. During those two weeks of suspension, he was made to pay his allowance money towards gas for our vehicle since I had to drive him back and forth to school. It was only $10, but in his eyes, that was a lot of money. We wanted him to understand that this was not only affecting him, but others as well, and therefore, there were consequences across environments because of his actions. It worked. 

Zach finally finishes his bowl of cereal and takes his time getting into the bathroom to brush his teeth and apply his “armpit cleaner” (deodorant). The bus has just stopped at the end of the driveway and Zach is still in the bathroom. I shout to him, “Zach! Your bus is here!” “Hold on! I need to dry my face and hands.” Instead of using a bath towel, he walks into the kitchen with his hands dripping water all over the floor and takes at least seven sheets of paper towel to dry off. At this moment, Zach insists on washing his hands again, this time in the kitchen sink. He says they’re dirty because he had to open the trash to put the paper towel in. He washes his hands, takes another seven pieces of paper towel, puts it in the trash, and then repeats this twice more. By now, the bus driver has indeed driven off and turned around down the road and is on her way back.

“Zach, you need to stop washing your hands and get out to meet the bus.”

“But I can’t stop washing my hands, Mom.”

“I know, but you have to try. Just stop washing and get your shoes on.”

Zach hit the jackpot with diagnoses. Not only was he diagnosed with autism, he has also been diagnosed with clinical Obsessive Compulsive Disorder.

I realize that he still hasn’t changed his shirt and I quickly run to the laundry pile and get a shirt out. When I hand it to him, he throws it back at me. He doesn’t like the way it feels on his skin and so I give up and let him wear the shirt he has on. We’re completely out of time now.

Zach has Sensory Integration Dysfunction; just another diagnosis to add to the list. There are things he doesn’t like to eat, wear, feel, etc. They bother his senses.

The bus is now sitting at the end of the driveway, waiting yet again. Instead of getting his shoes on, Zach goes to his room to make sure his door is shut. He has a fear of one of the dogs or cats getting into his room while he’s at school. He’s afraid they’ll take his toys or poop on his floor. He sees that the door is shut and finally puts his shoes on. As he walks out the door, he asks, “Mom, can I play Xbox right now?”

“Zach, what do you think?”

“No, I can’t.”

“That’s right, you can’t. It’s the same answer every day.” Indeed, it IS the same question and same answer every day.

As he walks out the door, he yells back, “I love you, Mom!” I yell back the same. If I don’t, he’ll keep yelling it until I do. It’s not just with this response that he continues to yell; it’s with a lot of other statements that he makes. Yet another part of his OCD. 

If I don’t tell him to run to the bus, he’ll walk as slowly as he can. After I wave to the bus driver and make sure he’s on the bus, I go about my own business around the house and get ready to leave for work around lunch time.

In between the time that Zach gets on the bus and I go to work, I brace myself every time the phone rings. When a call does come from the school, it’s usually because his teacher and interventionist (he has a one-on-one during the entire school day) notice that his behaviors seem “off” and he’s most likely forgotten to take one of his pills and it’s still sitting on the counter. The school has back-up pills that I supply in case this happens. The morning will be shot by this point because it takes a little while for the meds to kick in, but it’s better than no meds at all.

I do get a phone call today, but it’s not about his pills. It’s about the red Sharpie marker he’s brought to school. On the short drive to school, he sat in the last row of seats and drew questionable pictures and words on the two back seats. The bus driver found these while cleaning the bus out after dropping him off. This resulted in another write-up; number 2 for the year. When he was asked why he did this, he responds with, “I thought it would make the high school kids laugh and I didn’t think the bus driver would come all the way to the back to see them.”

This is typical, though a first. He’s all about cause and effect, action and reaction. He does things to see what will happen or to see what someone’s reaction will be. The reaction and effect today is that he spends the next two and a half hours wiping and scrubbing the seats until none of his artwork existed. To keep things consistent across environments, his Sharpies are put away for a couple of weeks at home.

This all happens before noon time. 

School isn’t any easier throughout the day. The seat cleaning took place during one of his favorite subjects in school. He is keyed up throughout the rest of the day and doesn’t get much work done. He finds it hard to focus and carry out instructions.

Zach also deals with ADHD. 

Things are easier when Zach gets home. I’m at work, but David has a long talk with him about respecting other people’s property, consequences, and appropriate and inappropriate artwork. Being at home is Zach’s “natural habitat,” as he calls it. He’s in his comfort zone. I call David from work while I’m on my dinner break. He says the talk went well and that Zach will be writing an apology note to the bus driver and the bus company in school the next day. He had fun catching spiders after school.

I’m home from work now and it’s 9:30 pm. Zach should be sleeping but he’s a light sleeper and he hears me walk across the deck. He calls me into his room and asks me to lie next to him and scratch his back as he falls asleep. He tells me about his day and says, “I’m glad tomorrow is a new day.”

“Zach, you’re right. Tomorrow’s a new day. It’ll be a good day.”

“Mom, when is my voice going to change? I’m jealous of all the boys at school that are in puberty and their voice has changed. What happens if I die before my voice changes? Will my voice change when I’m in heaven?”

“It’ll probably change soon, Zach. You just have to be patient. And you’re not going to die soon, but I’m sure God would make sure your voice changed in heaven if anything happened.”

“That would be magical. I love you, Mom.”
“I love you, too, Zach.”

The next morning, the routine starts again, he almost misses the bus, he asks to play Xbox as he walks out the door, and when I walk back into the kitchen, there’s a big pile of barely wet paper towels. I notice that his pills are all gone and a half full glass of water sits on the counter where they once were. There’s no call from the school that day and no news means good news. It’s definitely a new day and a good day. It’s just another day in a house where there is never a dull moment. This is our little world of autism, but we welcome any and all to be a part. It’s magical.

Here’s a letter I wrote to the world in June of 2008. I added it to a scrapbook page I made about Zach.

Dear World,

There’s some things about autism that I want you to know.

In spite of what you think, our kids aren’t contagious. They’re
not something you need to be afraid of. They’re not the boogie man. Different doesn’t automatically equal bad.

You say you want us to explain, but it’s complicated and you seem to be disinterested after a while.

You say you want to embrace diversity but when you don’t understand something, you fear it and push it away.

You say you want to hear what we have to say, but you seem to plug your ears when you get too uncomfortable.

You say you want to see what we go through but when you don’t like what you see, you turn away or put blinders on.

When we share our world with you, we’re not looking to make excuses. We’re just looking for a little bit of the Patience, Understanding and Compassion that you’re always talking about.

Love,
a mom and her autistic son

[typography font=”Delius Swash Caps” size=”24″ size_format=”px”]Written by Erika Martin[/typography]

Erika Martin is a 30-something mom of 2, husband of 1, a psychology degree student, and also works full-time working with the older generation, specializing in therapuetic and sensory art. She lives in Ferrisburg with her family and her 3 Siberian Husky mixed dogs and 2 cats. She spends her free time creating commissioned alternative art, teaching art workshops and retreats, writing, reading non-fiction, and doing anything to keep her hands busy. There’s never a dull moment in the Marting Household, but she makes sure it’s filled with love, peace, understanding, compassion, rainbows, and sunshine. You can read more about her family on her personal blog or in her new book that is currently available for pre-order called Zach: Uncensored, autism without a filter.