A long day in the life of an autism mom

A day in the life of an autism mom is a LONG day, but some are longer than others. Some are so long that it is almost funny.

Will you tell me the story of one of your long days?

500 words or less, please. You can even do it in list form if you like. I’ll be posting winners on my San Francisco Chronicle Autism Blog. Winners also get a copy of my book. There will be honorable mention prizes, too, but I haven’t figured out what they are yet.

Please email them to me and paste them into the body of the email-NO attachments please. l shumaker AT pacbell DOT net

Here is a sample of one of my long days. It’s an excerpt from my book A REGULAR GUY: GROWING UP WITH AUTISM

 

It is day five of Matthew’s spring break visit. Here is how the day unfolds.

I am lying in bed at 6:30am waiting for Matthew to stir. Peter has left for work, and my sons John and Andy are off skiing with friends.

At 6:31, I hear the front door slam, and know Matthew has gone out to watch some gardeners work a few houses down. It is a cold, drizzly morning, but I know Matthew is wearing shorts and a t-shirt that reads SHUMAKER LANDSCAPING with our phone number below.

At 7:30, I am up and ready for Matthew’s breakfast ritual. He will make pancakes, stack them on a serving plate, then go in his room and sing a song and say a morning prayer.

Just like at Camphill.

After breakfast, Matthew tells me his plans for the day.

“First, I want to go to the mall with Ben, then I want to go to work at Dorothy’s.”

Ben is a student at a nearby college, a friend for hire when Matthew is home for breaks.  He has a heart of gold and movie star good looks, making trips to the mall for Matthew a wonderland of pretty, flirty girls who would normally avert his hungry, pleading gaze.

”Matthew, Ben is on spring vacation, and I don’t know about Dorothy. I’ll call her. But first we have to go to the dentist.”

Matthew insists on calling Dorothy. He knows that he is more persuasive than I. After a few minutes, he hands the phone to me.

“Sure Matthew can come work in the garden. But first I’m waiting for the vet to come to euthanize the dog.”  I tell her how sorry I am Perhaps Matthew can work for her another day, but Dorothy says today would be fine, after they have taken the dog away.We decide not to tell Matthew about the dog or he would ask questions.

“How old was the dog? Where was I when he died? What was I doing? What were you doing when the dog died?”  All the while oblivious to weeping family members.

I drive Mathew to the dentist, and he tells me to wait in the car; he wants to go in himself like a regular man. After 30 minutes, Matthew comes out. The dentist would like to speak to me. Matthew follows me in and sits in the packed waiting room while I talk to the dentist. It turns out I need to schedule a time to have Matthew’s wisdom teeth removed.

On my way out, I see that Matthew is intently reading, “The Berenstain Bears go to the Dentist”.  By the expression on his face, you’d think he was reading Dostoevsky.

“Time to go, Matt.”

“I’m not finished with my book. I’ll meet you in the car when I’m finished.”

I scan the faces in the waiting room, all stifling laughter. I flash an embarrassed smile and walk out to my car.

After five minutes, Matthew gets in the car.

“Can we call Dorothy now?”

”No…she said she’d call after her…doctor’s appointment”

It’s 9:30. The dog is to be put to sleep at 12:30. I need to keep Matthew busy for three and a half hours so he won’t pester the grieving family.

He goes to work in our back yard, mowing, trimming, blowing and raking while I do laundry, pay bills and vacuum, stopping every 10 minutes to check on him. At around 11:30 Matthew stomps into the house, his shoes caked with grass clippings.

“We need to go to the hardware store. I need oil for the lawn mower.”

Off we go. I walk in with him but give him space. He appears with the oil but I don’t have cash, and have to pay with a credit card. As I approach Matthew, he yells,“Let me buy this myself! I’m a regular man!”
“You’re a regular man with no money and you need me to pay for this. Be quiet.”

He points at an elderly man in line. “You don’t see him shopping with his mother!” Matthew shouts, and once again, I’m on stage.

“Shape up, or we’ll leave the store and there will be no more gardening today,”I say.

We pay, and as we walk out, the motherless elderly man winks at me sympathetically, a slight kindness that makes all the difference in my day.

Once home, I take a moment to fold some laundry when Matthew enters the room, looking shifty.“Dorothy called” he lies.

I never heard the phone ring.

“Did you actually call Dorothy?”

“How did you know?”he counters, looking sheepish.

“I just know”, I say with a sigh.

“She said we can go over now.”

I call Dorothy to verify the facts. The lifeless dog is being carried away on a stretcher at the moment. Could we wait a little while?

I hold Matthew off till 2:30, about an hour post mortem. Dorothy’s twelve-year-old boy is mourning in his room, and her teenage son and daughter bravely greet Matthew, who tells them– “You better big time not mess with me.”  Dorothy tells me I look tired, and we talk briefly about Copper’s final hours. I promise to pick Matthew up at 3:45; then I drive home and collapse on the couch, waking at 3:30. Time to get Matthew.

Once home, Matthew goes in his room and listens to music, his favorite, the Beatles. I plop down on the couch and turn on Oprah. Lisa Marie Presley and her mother are guests. The mother has had a lot of work done, and she looks younger than her daughter in a freakish way. What’s with her upper lip? I hear Matthew emerging from his room, and he comes in to see me, tears rolling down his face.

“Do you hear this song?” he asks, and I listen…and hear Paul McCartney singing mournfully. “All the lonely people…where do they all belong?”

“Am I kind of like Eleanor Rigby?” he chokes.

“Awwww” I reply, rocking Matthew in a hug, telling him it hurts to be lonely, doesn’t it, and reassuring him that he belongs, is needed and is loved. I feel pain in my chest, the kind of pain that a mother feels when she knows she can’t fix an aching heart.

“Who loves me?” he asks, sobbing.

I tell him a long list of all the people who love him. I tell him to go wash his face, and while he does, I call Peter, my father, and my brother, and ask them to call Matthew and tell him how great he is. They do, and Matthew recovers. He makes plans with all three men…Going out with pizza with dad, going to the beach with Grandpa, working with Scott in the garden. I am so grateful for all of them, and proud of Matthew for pulling himself together. Soon, he is in the back yard, remowing a patch of lawn, raking and sweeping. I take a deep breath. Now what?

Peter comes home at 6:30. Matthew shows him all the work he has done today, so proud. The two of them joke around about poisonous plants. After a while Peter comes in and comments that our lawn looks like a putting green. He tells me I look tired and gives me a hug, and we sit down to a scrounged up dinner; dried up chicken breast, toast, and carrot sticks, washed down with good wine, and eat with the rumble of the lawn mower in the background. I go over the events of the day, and by the time I get to Priscilla Presley, we are in hysterics. Matthew appears before us and tells us to stop laughing.

Matthew has warmed up spaghetti, spinach salad, and sparkling apple cider out of a wine glass for dinner, bathes, and settles down for the night. I sit on the couch and watch American Idol in a daze while Peter and Matthew listen the Beatles, their evening ritual, before Matthew goes to sleep. The phone rings, and it’s for Matthew. It’s Ben and he’s back from Spring Break. Does Matt want to hang out tomorrow? Maybe go to the mall or something? I sigh, my heart full of gratitude, and Ben tells me “Don’t even try to pay me.”

Peter and I catch the end of American Idol, and I tell him I’m sorry I’m not more talkative, I’m just so tired. He understands. We go to bed and read. After 3 minutes, my book drops to the floor, and I drift off. Not such a bad day. Maybe Matt will sleep in.

Read the first three chapters of my book HERE.

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About the author

Laura Shumaker is a nationally recognized writer, autism and disabilities advocate. Her essays have appeared in many places, including the New York Times, CNN, NPR, and in a popular autism and disabilities blog for The San Francisco Chronicle. She’s the mother of three terrific sons, and her oldest son, Matthew, is the subject of her book A Regular Guy: Growing Up with Autism.

Trackbacks

  1. [...] 1) When it’s a bad day, and the kids are sick and I’m stuck at home all day and am STIR CRAZY, I resist the urge to say “YOUR TURN!” and race out the door the second my husband gets home. We hug and kiss and I smile at him(even if I have to force it). I wait about a minute and then say “I’m going nuts. I think I’ll go to the book store for a little bit. Is that OK?” When I get home, the kids are bathed and in their jammies. Isn’t that nice? [...]

  2. [...] 1) When it was  a bad day, and the kids were sick and I was stuck at home all day and completely STIR CRAZY, I learned to resist the urge to say “YOUR TURN!” and race out the door the second my husband got home.(It took me a while to master that one…) We hugged and kissed and I smiled at him (even when I had to force it). I waited about a minute and said “I’m going nuts. I think I’ll go to the book store for a little bit. Is that OK?” When I got home, the kids were bathed and in their jammies. (This was not automatic. It took some time and some counseling for Peter to learn this.) [...]

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