Aware

Who’s aware? I hope all the people who don’t lead the life that I do. Self-pity? There’s no such thing to the dad I am.

 

I’m aware to my core. “I was going to send you an Autism Awareness Day card,” a friend wrote a few years ago,” but I couldn’t find one in the Hallmark aisle.” Why not? God, she was smart.

 

I am aware when my elder son Alex slams our bedroom door at 8 on a Sunday morning and a few moments later I hear a door slam in the hallway and something tells me to get my ass out of bed and find out what neighbor’s apartment he’s in. Aware when I get check in the mail for $313 in reimbursement from a well-meaning agency for stuff I don’t remember buying but that I wish I could just pay for. Aware that some of that reimbursement money goes to the camp where, for two weeks this coming August, they will make him happy and my wife and other son and I will get some time to sleep.

 

Aware that Alex goes to a “school” where they do all they can for him – I believe this – and that it will not be anywhere near enough. Aware that I grew up in a world where they could spend on autistic people one way, and that I have stayed alive and now they don’t have as much to spend on autistic people.

 

Awareness is a crock, a way for those who don’t understand to try to understand. They will be aware but they will never understand until it happens to them.

 

Aware that Alex will never read what I write here and be mad at me. That I have signed him up for an afterschool program that’s available only to people who have a future in a world where “compassion” is a changing word. Aware that I have no way of knowing what bus he’s coming home on because I don’t have a sure way of knowing if his afterschool program is open today. I don’t know because they don’t tell me even if I ask, because they’re over there and I’m over here.

 

That now when I say, “Hug for daddy, Alex?” the shoulders meet my chest and that I don’t have to bend over at all. That he will be out there in the world unable to speak or tell me what’s going on until my life is over.

 

3,129 Steps

 

My first guest blog! Gayle Nobel has a lifelong connection to autism through her brother and her son. She holds a BA in special education, is an inspirational speaker and parent mentor, and is the co-author of It's All About Attitude: Loving & Living Well with Autism (2006) and the author of Breathe: 52 Oxygen-Rich Tools for Loving & Living Well with Autism (2010). Gayle directed an intensive home therapy program for eleven years for her son, Kyle. She resides in Phoenix with her family. 

Kyle came out of his most recent cycle over the weekend. Hurrah! On Monday, I didn't want to send him to his day program because his 1:1 aide was not going to be there and the readjustment of the first day back might have been much harder without her.

 

How should we fill the day? Kyle had been home for eight days so an out of the house activity was definitely in order. It was a gorgeous day in Phoenix, Kyle was racing around the house with exuberance, and I was pining for my hike.  North Mountain, with it's paved trail, and  close proximity to our neighborhood, was calling out to us.

 

As soon as I opened his door, Kyle bolted out of the car to the trail. He took the first leg at a run before stopping to survey where we were. The beginning part is very steep but it soon mellows out to a gentle upward climb.

 

Hiking with Kyle is stop and start. At times, he is running up the trail, then at others, he needs a long break to stop and smell the roses and gather himself up. We went from running to stopping with everything else in between with lots of water breaks.

 

I decided I would have no agenda for our pace or how far we got. This hike was so that we could spend time doing something enjoyable together while getting exercise. It was not going to be at my usual pace and that was ok. What a gorgeous sunny, but not yet too hot, day in Phoenix and how grateful I was that Kyle was able to have a life again after the rough waters of the previous week. Life's simple pleasures are the best.

 

I was thoroughly enjoying my time outside, being with Kyle, and seeing him enjoy himself. People watching was fun too. I marveled at the variety of shapes, sizes, and ages going up and down the trail. Since the hike is short, many people do the trail more than once so some of the faces became familiar. My favorite was the mom pushing her toddlers in a double stroller with a baby in a pack on her front while chatting with her friend. I noticed her friend had the stroller when they passed us on the way down and I was hoping she had a really good grip.

 

Swirling thoughts:

 

We should really do more of this especially before it gets too hot.

 

Maybe if Kyle had some extra doses of endorphins, it would help ease the debilitating cycles every month. Note to self.

 

Phoenix is so beautiful when it's not blistering hot. Days like this are why we live here. 

 

Kyle is suddenly keeping such a good pace, we may make it to the top where we can eat our almonds on the only bench on the mountain.

 

Wow, it takes so much energy for Kyle to do this, he must burn twice the calories as the average person.

 

The amount of mental energy seems exceed the physical energy.... his focus to keep himself moving is a bigger challenge than actually moving. Go Kyle. 

 

About three-quarters of the way up, my swirling thoughts were interrupted by an abrupt stop. Uh oh, fatigue? My instinct told me it was time to turn around. Even though the downhill was less strenuous, Kyle didn't really want to walk when we turned around. 

 

With coaxing, we headed down the mountain VERY slowly. The mid morning sun was beating down on us and our water was going fast. Walk a little, stop a lot, repeat. This was our pace down the mountain until Kyle suddenly came to a halt.

 

Gently but firmly, he grabbed both my wrists, looked me in the eye and told me he was not moving any more. Clearly, he was DONE with this hike.

 

It was only 5 minutes (at MY pace) and a few switchbacks to the car but he didn't care. In fact, he looked as if he might have  felt a little sick. Desperately, I looked to the side of the trail and there was a rock and possible resting spot. Nature's divine intervention because there were not many of these on this trail!

 

It was easy for me to sit down but very challenging for Kyle. The motor planning involved on shaky terrain and rugged slant of the rock was a huge deal for him. I was reminded of how easily we take for granted all the things our body does for us without thought. For Kyle, anything out of the ordinary pattern of movement requires a lot of thought and effort.  Sometimes, he would rather flee the scene than work through it.

 

With my support and a little nudge, I got him to sit down. Phew! No shade, but at least a resting spot. Several people passed us on the way up and then passed us on their way back down again. We sat for a long time and I was starting to worry.

 

What if he won't do the required walking to get to the car? Am I going to have to call for a rescue and how would that go? No, I decided I would wait as long as necessary and we would walk down. I was grateful to see more color in Kyle's lips again.

 

Eventually, after long while, I convinced him to get up and we slowly made our way to the car.

 

3,129 steps, 1.43 miles, 3 hours quality time with my son. Grateful.                   

 

Bolt On

 

Alex slams shut our bedroom door just short of 8 a.m. Something tells me to get up. I don’t, though, and a few minutes later I hear a door shut in the hall outside our apartment. That slam I’ve heard before. The stairwell of our building is across the hall; all you can say is that Alex has never left our apartment building.

 

"Get a lock he can't open!" some have said. Great theory, but again autism proves to us how we’re in a new world: Fire regs forbid a key padlock on the inside of an apartment door.

 

“Regulations” and almost everything connected with the real world seems like mist as I get up and check the rooms of our apartment. “Alex has bolted!” I announce to the form of Jill there in the bed. I could’ve hit the sleeping Jill with a bang stick, but these words get her up quicker.

 

Soon I’m out in the hall. I hear a door slam upstairs, yet I stick to my search procedure of taking the elevator to 15 and then down floor by floor using the stairs. (Stupid dad.) On the 10th floor I find – at this insanely early hour – a delivery man, and then I see a door open down the hall, the lights bright inside and the wood of the floor sparkling new. I hear a woman speaking.

 

 “There’s a strange autistic boy in my apartment ...”

 

Bingo! My life has become saying bingo! to myself on seeing a door open at an insane early hour and hearing a woman saying “strange autistic boy.”

 

“He’s my son,” I tell her. “I’m so sorry…”

 

“I was expecting people,” she says, “so I opened the door and he barged right in!” I peer in and see Alex at her shiny redesigned kitchen counter, standing there with his iPad like someone who will never own a kitchen like this.

 

“That’s all right,” she says. “No problem.”

 

“Alex, come out of there right now!”

 

He does. I’m sorry! he keeps saying. He hugs the woman’s arm. I’m sorry. I take him home feeling like Tom Cruise in Rain Man in the intersection scene. Next day we send a note to the neighbor and slip it under her door: “Hi. I am sorry I came into your home on Sunday. Thank you for being so understanding. Alex…” I have him write it until I see the M and the S just look too … what? Abnormal? Dangerous in an “Oh my God he lives just floor from me!” kind of way? I write the note for him to sign; he does sign his own name.

 

We have tools to keep him here that we didn’t have last summer when he bolted. The iPad, for one. I don’t believe he’ll leave the apartment without it (“I think he will,” says Jill…), so instead of leaving it on the dining room table overnight to charge, I charge it on my bedside table. I also place a chair in front of our door before going to bed and on the chair stack empty tin cans. He’ll accidentally knock them over and make a racket. Solid theory.

 

Stupid dad. How long before he learns to silently remove the cans? Stopping Alex with a contraption is like firing a phaser at a Borg: You get one or two shots at most before he adapts and continues his relentless advance.

 

Please send comments to jeff_stimpson@yahoo.com 

Open Wide

 

 

The Cartoon Network blares over the chair from a TV to distract kids. This practice understands kid patients, I’ve learned over three or so appointments. They especially understand kid patients with special needs.

 

“Daddy’s right here with you,” the dentist says to Alex, who hates the Cartoon Network. I consider asking if they can put on Elmo.

 

 

“Open wider, Alex.” I forget how we found this dentist, but on our first appointment he told us how he’d had a condition when he was younger and it gave him insight into kids like Alex.

 

 

This time, Alex won’t sit down, but jumps up to pick a penny toy from a nearby basket. “Go to the bathroom!” says the Big Staller.

 

 

“Hurry up, Alex,” I tell him in the bathroom. “The doctor is in a hurry…”

 

 

Back to the chair. “He’s crowded,” the dentist says of Alex’s jaw, “and his wisdom teeth will be coming in between ages 17 and 25.” Rapture. 

The dentist braces Alex’s head with his forearm; Alex’s mouth is a tight oval, though I keep saying “Open wide like this, Alex!” and stretching my mouth into an elaborately  huge maw. Alex lifts his shoulders off the dentist’s chair. “Kiss the straw,” the dentist tells Alex. The straw is the suction. We all know the whine of the suction, and Alex’s head pops far off the pillow and his legs pivot off the chair.

 

 

“He’s a lot stronger,” the dentist notes. The dentist sees no spots; spots are decay. Bad teeth, so far, is one mess Alex has dodged.

 

 

We used to take him to an agency’s dental clinic; the service was free and the doctors were great, but they changed every appointment. We figured Alex would be calmer if he saw the same face looming over the pick every six months. As his legs pivot farther off the chair, I wonder if the same face makes much difference.

 

 

The dentist touches the pick to Alex’s fingernail; Alex seems to accept the sensation. “It’s just going to be a little scraping. Just a little scraping. Open wide so I can see…” The dentist locks Alex’s head in his crooked arm and touches pick to teeth and gums while Alex keeps saying Nooooo!” I hold Alex’s wrists until the hands turn pink. After a few minutes I have to hold his hands tightly, then in a few more minutes I just have to hold his hands like I do when he’s going to sleep. Blood runs in red fangs between Alex’s teeth; I see yellow patches that not long ago must have been Utz Dark Special pretzels. “See that?” says the dentist, holding up the pick to let me see the red dot on the end. Gross. “That’s build-up. But overall he’s doing very well brushing.” I tell the doctor we’re also into flossing a little bit and use a fluoride rinse.

 

 

“Alex, you’ve gone through so much worse than this,” I say. As usual at the dentist’s, the guy sitting in the chair under the Cartoon Network doesn’t care.

 

Jobs to Do, Part 2

Alex’s service coordinator dropped by his school the other day. “Alex seems to be doing well there,” she e-mailed. “He was sweeping the floor when I arrived.”

 

Really? I thought, looking at the crumbs on our living room floor. Knew I had kids for some reason! 

 

We’ve covered jobs Alex does now: setting the table so the handles of the coffee cups face the same way; emptying the dishwasher every morning. I get the feeling he has the skills. “Alex,” I ask as he tucks in the sheets at the foot of his bed, “would you like a job?”

 

I expect him to parrot back something like, “Like a job?”

 

“A job to do,” he says, tucking.

 

We all have a job to do, but sometimes the job doesn’t find us. Writers know about this; I hope Alex doesn’t have to know about it, too. He could probably scrape by the next six or so decades on what amounts to the pure compassion, maybe the pity, of society. I’d prefer, however, that he learn about that spring in the step after a day of good work you enjoy. He has the skills, I think.

 

Some people also have the attitude, like when a teacher from his school went into a local thrift shop to ask about employment for her students. “We don’t hire the handicapped,” she was told.

 

“We don’t actually use that term anymore,” the teacher said.

 

“Well whatever you call them, we don’t hire them!”

 

(Not to blame anyone, but the initials of the name of the thrift shop are H and W and it’s on East 23rd Street in New York.)

 

LinkedIn connection Jennifer tells me her son started as a cart attendant at a local Target; after three years they added “sales floor” to his cart duties. “He also straightens the store, stocking and fronting items,” she adds. Jennifer advises parents in my position to connect with local stores, making introductions early with businesses that would accept a person with a disability – “really ‘accept,’ not just legally.” Around a student’s junior year, work with a vocational rehab department to secure a job coach and internships.

 

Jennifer’s son had some “less-than-perfect” jobs before Target, she stresses, “so stay positive and keep pushing.”

 

I wish I pushed Alex more. The dishwasher is a dawn routine now, true, yet often simple sweeping of the crumbs slips my mind. Instead, I think how he’s on his iPad watching too much “Sesame Street,” and I let him alone. I’m not together enough to be Alex’s dad. I’m not smart enough for this job.

 

(PS: I went to the following site to pluck quotes and such, but it seems too good to offer except in its entirety: http://dps.missouri.edu/Autism/Adult%20Autism%20&%20Employment.pdf . Comments are also welcome at jeff_stimpson@yahoo.com ).