An excerpt from A Regular Guy: Growing Up With Autism

“Grandma, I don’t like you to wear that,” Matthew said, standing in the doorway of my parents’ bedroom. He was referring to the plastic tube that cradled Mom’s face, pushing oxygen through her nose. It was the last day of August 2002, just before Matthew was to return to Camphill for his second year.

“Matthew, you can come over and sit next to me. I’ll show you how this works.”

He plopped onto the bed next to my mom and listened as she explained how her lungs were tired, and how the plastic tube carried oxygen that kept her going.

“I don’t like it, it looks bad,” said Matthew. “I like you better the other way. I like it better when you’re not in bed all the time.”

“Matthew,” I started, but Mom signaled that she could handle it.

“Here,” she said, pulling the plastic tubing from her nose, just for a few seconds. “Is that better?”

Matthew’s face exploded with joy.

“Hi, Grandma!” he said, holding her too tight, but not tight enough.

Just one month later, with Matthew safely back at school, my father called at 3:10 in the afternoon, and I knew, because we always talked at 8:30 a.m., and then at 5:20 p.m., right before Tom Brokaw.

“Mamma died,” he said. I told him I’d be right there.

I drove to Carmel calmly, yet tearfully, calling people from the road to share the news. Everyone expected it, but no one could believe it. Only 71 when she died, she never complained during her steady decline. Instead, she remarked daily about how lucky she was.

Dad had taken care of my mother cheerfully and tirelessly. His family and friends encouraged him to get help, a night nurse or an aide, but he refused, and somehow survived the years of constant caring, lifting, and lack of sleep. When my mother was discouraged, he would take her face in his hands and tell her he loved her. Even when she was at her worst, Dad took her to get her nails done or her hair styled, or out to lunch at a favorite spot. He made sure her lipstick was always nearby; he prepared and presented her meals with flair. She continued to laugh at his jokes, and he at hers, his eyes glistening with grief.

By the time I got to Carmel, Mom’s body had been taken away, and Dad was leafing through his address book calling one name after the other.

“Joannie? Phil Bowhay. Susie passed away this morning. I know you did, she loved you too.”

My dad was so distraught that I didn’t dare shed a tear or cave in to my grief, and I took over the phone calls when it got to be too much for him. But there was one phone call that neither of us had the courage to make that day.

“When are you going to tell Matthew?” Dad asked. “You’ve got to call Matthew.”

It was bedtime in Pennsylvania, so I decided to put the call off until the next morning. I shared the news with Matthew’s housefather, David, who encouraged me to call early the next day so that Matthew’s housemates could say a prayer for my mother at the morning meeting.

“Hi, Matthew. It’s Mom.”

“Why are you calling?” he asked calmly.

“Matthew, I have some very sad news to tell you. Grandma died yesterday.”

“She died?” he yelled. He dropped the phone and wailed, “My Grandma died! Oh my God! I loved my Grandma so much!”

“Matthew?” I tried yelling into the mouthpiece loud enough that he would hear me and pick up the phone again.

“MATTHEW?” I started crying, sobbing for the first time since I’d heard the news myself.

Matthew picked up the phone again and started to ask questions. When did she die? Tell me everything. What was she doing when she died? What did Grandpa do when she died? What was I doing when she died? Was I just kidding, and was she actually alive? No, I cried, I’m not kidding.

“What was the last thing she said?” he asked tearfully. I turned to my father.

“Dad,” I sobbed, “Matthew wants to know what Mom’s last words were.”

Dad took the phone and said, “Matthew? The last thing Grandma said was ‘I sure am proud of Matthew. I sure love him.’”

An excerpt from A REGULAR GUY: GROWING UP WITH AUTISM

It was after a public anxiety attack at California Pizza Kitchen, where our family of five was celebrating my birthday about a week after the babysitting fiasco, that I came to the inevitable conclusion: I needed to find my own therapist.

That night, Peter and I had just suffered through a particularly grueling meeting at Matthew’s school, where he was now in the fourth grade. One of the behavior specialists had come up with the idea of polling Matthew’s peers, the regular-education kids that he was mainstreamed with at recess, and asking what they thought of him.

“He’s weird.”

“He smells bad.”

“I’m scared of him.”

These were just a few of the responses that sent me crying from the IEP (Individual Education Plan) meeting in tears.

That behavior specialist didn’t last in the district very long.

When we arrived at the restaurant, my eyes were still swollen from crying. Peter thought that a family dinner at a kid-friendly place would be a great way to cheer me up.

The restaurant was surrounded by shops in an outdoor mall, and as we took our seats I soon found myself overwhelmed by the crowds streaming around inside and out, by the din of their voices—by everything. With the five of us crammed around a table for four, I remember looking across at Matthew—his blond hair shining under the glaring lights, his beautiful brown eyes not meeting mine, his distracted smile—and feeling a crushing heaviness in my heart, too acute to share with anyone. He wore a red polo shirt, one I had picked out; it made him easy to spot in a crowd should he dash away impulsively, as he was known to do.

Sitting anxiously at the small table, my knees jammed against its legs, I suddenly felt the shock of a spoon hitting me in the chest, hurled by Matthew as he darted out of the restaurant giggling into the sea of people. Up and out of the restaurant I flew, tackling Matthew to the pavement as he was about to dart into a busy street, surrounded by the judging eyes of onlookers. Sobbing, breathless, and utterly depleted, I couldn’t see daylight. I dreaded my future.

I had always been a healthy person, but lately every cold I caught turned into bronchitis or worse. Stomach pains and sleepless nights stretched on for days. I knew Peter and my parents worried about me, but I was beyond their ability to help. I fretted about the expense of seeking professional help for myself, about whether all funds should be devoted to Matthew’s cause, and wondered if I would be able to find a therapist who could connect with me and help me bear the weight of my uncertain future.

I hadn’t had great luck with therapists in the past. The first time I saw a therapist, I was a few years out of college and needed direction. I chose a radio psychologist who told me as soon as I sat down that she was going through a difficult divorce, and that she was waiting for an important call that she would have to take. While waiting for the call, she told me of all the famous people she had met in her role as a radio personality.

The next one I found told me I had a self-esteem problem as a result of having recently been dumped by a boyfriend. She asked me to role-play with an empty chair.

“Tell Charlie how you are feeling. Go ahead and hit him if you’re angry.” I think I actually yelled at the chair, but refrained from hitting it.

When Andy was a baby and we were beginning to worry about Matthew, Peter and I went to a therapist to talk about our struggles with balancing marriage and a growing family. His name was Roger Glum, of all things, and he had an annoying habit of looking at Peter while I talked, and then at me when Peter spoke.

After gauging our reaction toward one another, he paused and asked, “Do you guys watch thirtysomething?”

Yes, we had seen thirtysomething, a TV show filmed in muted tones about whiny couples also struggling to balance marriage and growing families. So?

I asked my doctor for a referral, and he enthusiastically recommended Rebecca Elliott.

The day of my first appointment with Dr. Elliott, I almost backed out. What could anyone say to me to help me with my complicated situation? Where would I even begin? And what if she did the role-playing thing? But I forced myself to meet her at least once.

Dr. Elliott, who I guessed was a little older than my forty years, was a pretty, petite woman who listened attentively as I tried to paint a picture of my life. Midway through my long, tearful, and disjointed monologue, I stopped and said, “Am I making any sense?”

“You are making perfect sense,” she said, and so the healing began.

In my circle of friends who have children with disabilities, we have a phrase we use to describe whether or not a teacher, doctor, or friend understood our situation.

“Does she get it?”

“I don’t think he gets it.”

“I asked her if she got it, and she said, ‘Do I get what?’ She doesn’t get it!”

A session with Rebecca was not the classic “And how did that make you feel?” kind of nightmare. Rebecca was all about action. She saw the big picture and extracted truths and feelings like a skilled surgeon. What can we do to make your life more manageable? You need services. Here is how you get them. Need a new psychiatrist for Matthew? Rebecca knew the best. Your knee requires surgery? Call this guy and mention my name. You’ll need help at home while you’re healing, call this agency.

“You need to get help from the Regional Center of the Department of Developmental Services,” she said, and I nodded reluctantly.

“I’ve been putting that off,” I admitted. “Just the act of calling them is an admission that Matthew’s condition is lifelong.”

Rebecca told me not to weigh myself down by mourning about the future. She pointed out that our family was eligible for services now, such as trained caretakers. I could finally get a break.

“The Regional Center will pay for several hours a month of help for Matthew. You could use the funds to hire a mentor for him and perhaps a babysitter for all three boys so that you and Peter can get a break.”

With Rebecca’s guidance, I made my way out of the loud restaurant with flying utensils that my life had become to a place where I could stand back and view my possibilities with long-lost optimism. Insomnia and anxiety had paralyzed me, and Rebecca explained, without talking down, that serotonin levels in the brain were changed by chronic stress; that medication with therapy was needed to get me back on track. She referred me to a psychiatrist, who prescribed an antidepressant, and she made sure that he and my regular doctor worked together on my behalf.

One day I got a call from an associate of Rebecca’s. I had an appointment with Rebecca that day, but it turned out that she was very ill and would have to take some time off. I tried my best to find out the nature of the illness, but her colleague wouldn’t tell me. I wanted to tell her that Rebecca and I were good friends, which I believed to be true, and that she would want me to know, but having heard in movies about “transference,” when a patient mistakes therapy for friendship, I backed off.

I called a friend who also saw Rebecca, and we tried to figure out a way to find out more. I decided to call a few Bay Area hospitals to ask if she was a patient.

“Brilliant!” my friend said.

“Alta Bates Hospital,” the operator answered.

“Yes, I’d like to deliver some flowers to Rebecca Elliott. What floor is she on?”

“She’s on three.” Bingo! “Would you like me to put you through?”

All of a sudden I felt like a stalker.

“No, no, I’ll just swing by later with the flowers. Thank you!”

That afternoon, I tiptoed off the elevator on the third floor of Alta Bates Hospital with a small bouquet of flowers in a vase and went to the closest nurses’ station.

“Will you see that Rebecca Elliott gets these?” I said to a young nurse at the desk, my feet poised in getaway stance.

“Oh, go right in!’” she said, gesturing toward room 3112, two feet away. “She’s awake.”

Feeling incredibly nervy and wildly over the line, I placed the flowers in front of room 3112. Didn’t this woman know that Rebecca had to be protected from nuts like me?

“Oh, no. I don’t want to bother her. She’s my psychologist,” I blurted as the nurse picked up the flowers and paused by the room, looking apprehensive.

So much for being discreet. I took off down the hall to the elevator, and once I got in, I laughed, thinking of what was transpiring in room 3112. I could see the smile on Rebecca’s face as she saw who the flowers were from, and I knew we would share a laugh about this scene later. My father always says, “Never squelch a generous impulse.” No matter what.

Thankfully, Rebecca recovered from her illness, and we did laugh about my brazen act of kindness. We talked briefly about her illness. But there was work to do, and Rebecca swiftly moved back to the business of bracing me for unknown challenges ahead.

 

an excerpt from A REGULAR GUY: GROWING UP WITH AUTISM

Matthew was always in the same spot when I came to pick him up from Merriewood preschool, shoving pieces of tan bark from the play area through the chicken-wire gate at the school entrance. No matter what the weather, his handsome face and blond bangs peeked out from his blue corduroy hooded jacket, and his rosy mouth curved in a slight smile. He was always alone.

“Someone has been looking for you,” Gretchen would say, and while Matthew looked happy to see me, it was only because I arrived on time. If I had arrived even five minutes earlier, he would have flipped out and forced me to wait by the gate while he did his bark-shoving. This was just one of the many rituals Matthew insisted on during his day, and he was collecting more all the time.

The group of mothers whom I met at Merriewood were kind to me and to Matthew, and they had included us in a few group playdates. I loved the idea of being included, but the differences between Matthew and the other children his age were amplified when we gathered. I chased Matthew around cheerfully and tried to draw him into the group, but ended up apologizing for his quirks.

“Oops, Matthew, the cookie doesn’t go in the heater vent!”

“That’s right, Matthew, light! He’s fascinated with lights.”

“I’m sorry. . . ”

In the end, I felt like the manic cheerleader who kept missing her flips.

While I was trying to move Matthew along with Dr. Davies’s suggestions, I was haunted by a leaflet I had picked up in her office, one that listed autistic symptoms. It seemed that so many of the items on the list were sprouting in Matthew every day. Those that worried me the most were the ones that had nothing to do with speech and language.

“Insistence on sameness; resists changes in routine.”

I have to go around the block before pulling in the driveway or he’ll flip out.

“Difficulty mixing with others.”

Difficult? He just won’t do it.

“Sustained odd play.”

The wheels, the drains, lining up toys, licking everything.

I watched the children who were receiving speech therapy getting better, and I resented Matthew because his gains were so much less impressive.

“Wow, Nickie is doing so well,” I commented to his mother in the speech waiting room.

“He’s made great strides,” she replied proudly. “His developmental pediatrician said that he’s never seen such a huge improvement in such a short time.”

“You’re going to a developmental pediatrician? No one told me to see a developmental pediatrician. Who do you go to? What’s their number? What else are you doing? Hold on, let me write this down,” I said, digging frantically in my purse.

“You’re doing vision therapy, too, aren’t you?” she asked. “And you’ve got to get all the wheat and dairy out of his diet.”

I wrote it all down on the back of a grocery receipt.

“How did you hear about all of this stuff?” I asked, feeling like I’d missed out on membership at an exclusive club.

“From other parents, mostly,” she said. “But if I were you, I’d get on the developmental pediatrician’s list right away. Matthew’s autistic, right?”

She threw it out just like that. I felt the blood rush to my face and my heart raced dangerously.

“I don’t, we don’t know yet,” I managed. I wanted to hide, to disappear.

“I just assumed,” said the mother. “Gosh, I’m sorry. I’m sure he’ll be fine.”

Again, I spied at Matthew from the rearview window as we drove home, and I wondered. When was the last time I looked at him and smiled proudly? When was the last time I didn’t suspect that there was anything wrong?

I needed to remember. I needed to get that feeling back, or I would go crazy.

ORDER A COPY OF A REGULAR GUY HERE.

(Read first three chapters HERE)

  Read First Three Chapters

Kindle

or your favorite local bookstore.

Nervous Laughter

When I was eight years old, Uncle Russell came to visit. He was my mother’s cousin, but everyone called him Uncle Russell. He was twenty years old and had a severe case of cerebral palsy.

Russell was pigeon-toed as I had never seen before, causing his knees to face each other. He walked in a spastic, bouncing stumble. His hands were gnarled and bent at the wrist, fingers curled, in a way that my brother and I found impossible to imitate. His long neck was thick with muscles pulsating from the strain of holding his large, constantly moving head.

Despite his challenges, Russell always had a huge, improbable smile on his face. My brother Scott and I tried in vain not to laugh at him. Even my compassionate mother sometimes had to excuse herself to giggle in the kitchen with us.

“Laura, we’d better not laugh,” she said before going back to face poor Russell again. “God may give you one like Russell someday.”

Mom wasn’t superstitious, and I knew her warning was only meant to sober us enough to get our giggles under control.

Russell wore pointy red Keds and a baggy old cardigan sweater. His dark hair was greasy, and he smelled bad. I remember thinking that it would sure help if his parents dressed him nicely and cleaned him up a little. Looking back, I realize that his parents did the best they could-the shoes were probably the only ones that fit his feet; cardigans are easier to get on a spastic child than pullovers; and bathing a young man with cerebral palsy is a grueling job for aging parents beaten down by endless caretaking.

Through the years, there were others I couldn’t help but laugh at, like the twin brothers at a Christian summer camp when I was fourteen. One was normal and the other weird. The odd boy flapped his hands when he was happy; he’d rock back and forth and sing songs. My friend Ginny and I didn’t want to laugh at him, but we found it easier simply to avoid crossing his path so we wouldn’t blow it. One time his brother caught my self-conscious giggle and glared at me, deeply hurt. I’ll never forget it.

When I was in my twenties and living in San Francisco, I was introduced to a nice-looking guy at a Christmas party. As he stood up to shake my hand, I noticed there was something funny about his legs. He seemed like a great catch-educated, funny, well-dressed except for the bow tie. We sat down again and talked for a while. Eventually, he got my phone number. My excitement turned to dread when he got up to get us a drink. He walked like Uncle Russell. I stifled a nervous, embarrassed laugh and pretended to be laughing at a funny joke I had just heard when he got back with our drinks. Somehow I held it together for the rest of the evening.

He did call me for a date and I accepted. Before he arrived, I told myself that here was a terrific guy with a great attitude who had accomplished much despite his disability, and I should rise above my silliness, be a good person, have a great time. But when I opened the door to greet him and saw him bouncing up the stairs toward my apartment, bouquet of flowers shaking violently, I knew this would be our last date.

I called my mother the next day to share my date story. She didn’t laugh.

“I hope you were kind to him,” she said quietly. “It must be so hard for him. I’ll bet his mother worries.”

There was an awkward silence between us, and I felt like a superficial, spoiled brat. What could I say to redeem myself?

“If I had a baby with a problem, it would be hard, but I’d do fine. But I have a feeling my kids are going to be healthy,” I said.

“So do I,” said Mom. “So do I.”

A Trip to the Hardware Store

“Mom! I have something very important to tell you,” my eighteen-year-old son told me urgently. “We need to go to the hardware store.”

I took a deep breath. Another adventure with my autistic son was about to begin.

When we got to the store, Matthew rushed in and disappeared behind the shovels and the toilet seats. I followed, warily. He reappeared with the orange extension cord he’d had in mind.

“Mom, give me the money and let me buy this-like I’m a regular man.” His forehead was screwed up with intensity.

I handed him a twenty and told him to meet me outside.

I stood behind Matthew in line, clutching a bottle of Elmer’s glue I had grabbed. He wanted me to look like a regular woman, anonymous to him, shopping at Ace Hardware. I watched as Matthew put the extension cord on the counter and handed the saleslady the twenty-dollar bill.

She was Flo, an old-timer with a bouffant hairdo and painted-on eyebrows. I saw the two of them having a little conversation, and I could tell by the confused look on Flo’s face that she might need my help. But I held back anxiously to respect Matthew’s wishes.

After what seemed like an eternity, Matthew paid for the extension cord and stepped outside to wait for me as I marched up to Flo, placing the glue on the counter.

“See that guy?” she whispered. I glanced out the door and saw Matthew standing there with a self-satisfied look on his face. “He’s got mental problems!”

“What did he say?” I asked with a heavy heart.

“He walks up here with his extension cord, and he says, “˜Are rhododendrons poisonous to goats?’ And I says, “˜I don’t know.’ Then he just starts laughing and walks out with his extension cord!”

“He’s my son,” I confessed. “I should have explained when I came in. He’s autistic.”

“Autistic? You mean like the Rain Man?” she asked, looking mortified.

“Well, sort of,” I replied. Best not to go into a big explanation right now. “He wanted me to let him buy something at the store like he was a regular guy.”

“I feel terrible!” Flo said. “But he must know he’s different.” Realizing that Matthew’s hopes, dreams, and lack of self-awareness would be too hard to explain, I shrugged and took my glue.

Flo had no idea how many times I had said to Matthew, “If you want to be treated like a regular guy, you’ve got to act like a regular guy!” or “Regular guys don’t talk about poisonous plants all the time!” Unfortunately, social awkwardness is wired into Matthew’s brain, and no amount of instruction or reasoning was going to change that.

I glanced at Matthew as we drove home, and I could tell by the strange smile on his face that he had moved on from his “regular man” frame of mind to the absurd.

“What would happen if Dad ate an oleander?” he asked, grinning crazily, and the lump that had been in my throat on and off since his birth returned.

Beginnings

 

I didn’t need to check my dog-eared copy of What to Expect When You’re Expecting to know that I was in labor. I had spent the day window-shopping in San Mateo, an upscale community twenty miles south of San Francisco where I lived with my husband Peter. I was proud of my Princess Diana-inspired maternity wardrobe, and on this day I was wearing the red-floral Laura Ashley dress with the ruffled shawl collar that tied in front, sailor-style.

It was 5 p.m., and I was in the bookstore two blocks from home when the first contraction gripped me. Right away, I could tell that my evenings in Lamaze class at our local hospital had been nothing but a social hour.

“Any day now!” sang the manager, patting my belly as I hurried from the store.

I made it home in a minute or two, smiling all the way, and called Peter. We were both so excited to become parents.

“They say with the first it takes awhile,” Peter said, but he could tell from the sound of my voice that I would be an exception. By the time he walked in the door at 6:30, the contractions were three minutes apart. We made it to the hospital at 7:15, and Matthew was born just after midnight, at 12:35. It was May 22, 1986, the happiest day of my life.

I can’t remember a time when I didn’t know that I wanted to be a mother. I grew up in a loving family with parents who treasured each other. In the beginning, I was the middle child, brother Scott two and a half years older, brother David a year younger. Every evening at five o’clock, the three of us sat on the brick steps of our brown-shingle home in Piedmont, across the bay from San Francisco, waiting for the 42 bus that brought our dad home from his work as a stockbroker in Oakland.

Dad greeted us with a laugh and a hug. Sometimes he’d surprise us with treasures from Chinatown, a few blocks from his office at Dean Witter, where he strolled at lunch: wooden snakes, mystery boxes, fortune cookies. My brothers and I waited in the living room while Mom and Dad had a drink in the kitchen, discussing the events of their day, and we were soothed by the sounds of them laughing and talking. After they had caught up, we were invited in for dinner at the kitchen table. My favorite time of the day followed the evening meal, when I snuggled on the sofa with my mother and we talked or read. Even when I was very small, my mother and I shared private jokes that cemented our bond, and I loved the feeling of our bodies shaking with laughter as we cuddled.

When I was five, my brother David drowned. He was just four years old. I remember standing helplessly on the dock of Clear Lake with my mother and brother Scott while my dad struggled to revive him.

The year that followed his death was quiet and strange. My mother was remote; my father’s smile disappeared. Scott and I didn’t understand the permanence of David’s absence, and we escaped to a world of our own, fantasizing about how David would reappear. One evening, six months after his death, my brother and I found our father crying in our living room, looking at a photograph of beautiful blond David with his clear blue eyes sparkling mischievously.

“Don’t worry, Dad,” I said, patting his arm. “He’ll be back.”

“No, Laura. He won’t.”

And we all wept together. It was the saddest day of my short life, but the day when the healing began for my parents.

Four years later, my father carried my baby sister up the brick steps of our home and put her in an infant seat on the kitchen table, where we all gazed at her sleeping. Carrie was three days old when we adopted her-and once again, we were a family of five. She did not replace David, but she completed our family.

For a nine-year-old girl, there is no more precious gift than a baby, and I relished her completely. After school and on weekends, I spent every moment with her, carrying her around, dressing her, singing to her. When family and friends came to visit the new baby, they had to pry her out of my arms, and they were quick to hand her back while I stood anxiously nearby. “You will be a great mother someday!” Mom told me.

I think I scared away a couple of good prospects when I was in my twenties, with the “Wants to Be a Mother!” stamp on my forehead. Mom told me gently to tone it down a bit, but she admitted that any guy who was afraid of me wasn’t the right one anyway.

I spotted Peter at the health club in San Francisco where we were both members. He was dating a friend of mine from college. Peter doesn’t remember being introduced to me by his then-girlfriend, but I remember our conversation when he walked away.

“He is so cute! Where did you meet him?” I asked my friend.

Cute was not the proper way to describe Peter. He was handsome, resembling a young Cary Grant with brown hair sweeping across his forehead, a patch of gray in the front. What made him cute was that he didn’t know how handsome he was. When I met him he was dressed in jeans and a red crewneck sweater.

“Isn’t he so East Coast?” my friend gushed. She was hooked. I wondered if he was as well.

When I heard that they had broken up, I found a way to strike up a conversation with him. I noticed an advertisement that he had posted at the gym. His roommate was getting married and he was looking for a new one. I called him and claimed to have a cousin who was moving to the area who might be interested. Our phone conversation turned flirtatious and concluded with a lunch date set for the following day.

Six months into our whirlwind romance, Peter admitted to me that the “Wants to Be a Mother!” sign had scared him at first but ended up being the thing he loved most about me. Peter was one of four kids and had grown up in a devoted family like mine. Nearly all of his family still lived in Connecticut, where he was raised. The old girlfriend was right-he was so East Coast.

Peter and I were married only eight months after we met, but nobody was surprised-the love and admiration we shared for one another was obvious.

When we were first married, we lived together in an apartment in the Pacific Heights neighborhood of San Francisco. During the week, we worked, met friends for drinks, and had dinner together, happily making plans for our future. The weekends were spent studying Gourmet magazine and having dinner parties with friends.

Shall we use the clay pot tonight or the wok?

Where did you put the eight-inch springform pan?

It’s next to the pasta machine in the pantry.

We had season tickets to the ballet; we entered bike and running races. Living in San Francisco was seductive and gave us a false sense of superiority. Looking back, I’m grateful for our self-indulgence. It was a gift to be naive and optimistic. Life would draw us back soon enough.

A baby after two years of marriage was our plan. Matthew beat us by three months.

He was beautiful. We were parents at last.

I was a mother.

Our family was having dinner one Sunday evening when Matthew, who has autism, became distressed because his potatoes were touching his meat. My husband Peter, who was tired after pruning trees all day, told Matthew in a loud voice “Don’t be ridiculous, just eat your dinner.”

Matthew yelled no, that he was the boss of his food, and picked up his plate and threw it across the room. Peter was ready to lunge out of his chair in anger, as were Matthews two younger brothers, but instead they stayed put while I walked my sobbing son to the backyard for a talk.

Although it took tremendous self control, I talked to Matthew quietly even when he flared up irrationally, (I’m like a weed whacker! If I get too wound up I need to throw my food!) until he was calm-even remorseful. Peter, Andy and John came outside when they could see the coast was clear, and Matthew apologized to his dad, who also apologized.

Another meltdown is defused.

Once Matthew was in bed, and after I finished my cold potatoes and downed my wine, Peter and I debriefed. Meltdown defused-but could it have been avoided?

YES!

There is an acronym used by recovering addicts, H.A.L.T. , that applies to parents of special needs children. If kids (or parents) are Hungry, Angry, Lonely or Tired, be aware, and be flexible.

“I should have more flexible”, said my husband, “but it is SO HARD!”

“I know, I know,” I responded in a soothing voice.

Sometimes being a good wife and mother means being a good actress.

Need more “meltdown” strategies? Check out NO MORE MELTDOWNS by Jed Baker

 

 

 

The thing about being the parent of a child with autism is that you are often so overwhelmed by the relentlessness of your job that you can’t think straight. A lot of well meaning and unsolicited advice comes your way during these moments of confusion, so much so that it’s easy to filter out the good stuff. Once in a while, though, you hear something that resonates with you and fortifies you. For example:

 

I was on my way to pick up Matthew at preschool when a mother, holding the hand of her crying daughter approached me.

“See these bite marks? Your son bit her. It was completely unprovoked. We’re on our way to the pediatrician, thank you very much.”

I was mortified.”I am so sorry,” I said, “Sorry doesn’t cut it,” replied the angry mother as she rushed away.

Luckily, my dad called later that day to say hello. I told him about the incident. “I feel sick about it,” I said, “not only that Matthew hurt this girl, but that the mother will spread the word that Matthew is a trouble kid. What should I do?”

“Write her a note, reassure her that you’re working on Matthew’s behavior, “he said. “Drop it off with some flowers or a bottle of wine and things will settle down.

1) But don’t take this too personally. Maybe there was more to the story–maybe the woman’s cat scratched her that day–maybe her husband is having job troubles. You never know what’s going on behind the scenes.”

His words of wisdom did three very important things:

1) They made me smile

2) They filled me with hope and resolve–and clarity

3) They helped me manage a lot of uncomfortable situations through the years in a community minded way.

Thank you, Dad.

I asked parents to share the words that helped them:

What piece of advice resonated with you and made a difference in your life?

 

2)My husband said to me once (after a devastating, huge failure of an outing where my son stimmed to blues clues for 2 full hours)”Babe, sometimes, ya just gotta skadoo.” This became our family motto. In other words, if it’s not important in the long term, just go for the ride.

 

 

Liz Turner Zurn

 

3)Learn to accept offers of help.

 

 

Madeline Mckewan Asker

 

4)You are your child’s best advocate.

 

 

Jacki Gilbert Hensley

 

5)Happiness is a choice. Pain is inevitable but suffering is optional.

 

 

Jamie Menning Regier

 

6)Put your emotions on the back burner, your kid needs you NOW.

 

 

Alicia Coleman

 

7)Always build on your child’s strengths and don’t compare your child to any other child.

 

 

Katherine Osbourne

 

8)The world will not collapse if you are five minutes late. Relax.

 

 

Kimberly Falk

 

9)You know your child better than anyone, never forget that.

 

 

Valerie Mehany

 

10)Never assume anything.

 

 

Nicky Lynchehun

 

11) Someone once told me”It’s just the word ‘autism’ that you’re afraid of.” I went from “how do I deal with this?” to “let’s deal with this!”

 

 

Amy Jo Patton

 

12)CELEBRATE THE SMALL STUFF. It’s amazing how, “Mom – you might need a jacket – it’s cold outside” is such a monumental leap forward of awareness and concern for others wrapped into one simple sentence.

 

 

Kirstie Martinelli

 

13)You can’t take care of him if you don’t take care of yourself.

 

 

Shannon Marie Haworth

 

14)My sons pediatrician said “Arm yourself with information. You’re going to meet a lot of doctors, teachers and therapists along the way and they won’t know your boy as well as you do.”

 

 

Katie Smith Bachman

 

15)Always assume competency.I am different not less. And I am more like you than not.

 

 

Jenn Brooking

 

16)Treat your child like they are normal and talk to them like a normal person not like a baby.

 

 

Annie Colson

To be continued!

***

Read A REGULAR GUY: GROWING UP WITH AUTISM

also available on KINDLE

 

 

follow this link

Follow this link for original article:

Follow this link for original article