Do you ever wonder, why you?

Do you ever wish life had turned out different?

You love your child, accept them completely, but sometimes it’s all too much?

Today  my friend Claire Hayes, of AutismparentSupport shares her story:

***

 

 

I had been on the path of personal self development since my early twenties and I had turned 40 by the time we had the diagnosis of autism for my second daughter.  Surely, having a special needs child would be child’s play to someone who had taught personal transformation, who understood the relationship of mind to body, of limiting beliefs to behaviour?

No.

Not easy.

Talk about a curve ball…

Once upon a time…

Once upon a time there was a young woman who had a lovely husband and adorable 2 year old daughter.  They had moved up to the far North out of the Big City.  It was all going to be perfect: fresh air, sea and mountains, good food and a like minded community.  What could go wrong?

Well nothing actually.  For as we know, in fairy stories as in life, there is always a moral to the story, so the test becomes the transformation.

A girl was born…

Actually, it wasn’t quite like that.  For a start, I had a lovely husband and adorable daughter but the move changed everything.  I became lost and disorientated.  From being a Londoner with a professional track record and loads of friends and a lifetime of connections, I was cast off.  I knew no-one.  I was an incomer.   Everyone was too busy to pick up on the loneliness of this new arrival.  I sank quickly into depression.

I dwell on this, because my autistic daughter was conceived into this depression and despair.

Good fuel for the “It’s all my fault” mindtalk that caught me later….

A girl grew…

She was always strange, right from the moment she came out.  She was born at home, at about 4.30am.  My husband (and there is no blame here) went to bed to rest.  I was still wide awake from the euphoria of giving birth, but even I couldn’t get my first born to playgroup! So I called my friend and went downstairs to the kitchen to help with breakfast. My friend obviously wanted to see the newborn, so she went upstairs to see my daughter whom I had left swaddled on our bed.  “She’s not there!” my friend cried….”She must be, she’s only just been born!  She can’t have gone anywhere!” I replied.  I went upstairs and there she was, swaddled in white against the white sheets, and curiously “invisible”.  I don’t know why my friend didn’t see her.  I had left her in a really safe place far away from any overhanging covers.  I even have the photos to prove it!  Yet on some level she was invisible to my friend.

That’s why I know she came out autistic…

The mother couldn’t understand…

My daughter’s behaviour was strange, but only having one model of childhood (I had never really been around children before I became a mother) I wasn’t unduly worried.  Because my daughter’s “strangeness” was not picked up and diagnosed by the professionals whose job it was, we labelled her a slow developer and waited …and waited….

No help…

These were pre-internet days.  No Google.  No putting in the symptoms and getting something back!  Although it was very clear that something was “wrong”, we didn’t actually get a diagnosis until she was 8.  In a way, it would have been easier if she had been more “severe”, as we would have had an earlier diagnosis.

But no diagnosis, no help.

Help!

No help inside ignorance is a pretty scary place to be.

Beginning to see the picture…

Gradually it all started getting into shape. The turning point came when I was working one summer in Greece and a fellow member of the teaching team had an autistic son.  He was there with her, and there were so many parallels with my darling’s behaviour that the light bulb went on.

Back home, I asked for a test for autism and ta..da…easy as pie..Yes!

On the road…

Then I had something to get my teeth into.  I did my best with research pre-internet and finally found a programme I could relate to.  I ran a Son-Rise programme for 4 years, and the journey for my daughter to learn her new communication skills and flexibility and imagination and empathy was accompanied by my struggles with all sorts of issues of self-esteem, leadership, finances and so forth.

A baptism of self-growth demanded, (and gave back), so much.

But in all this my daughter was the sweetest girl imaginable.

The wall…

Teenage hormones.

Hell.

She really turned into a violent, unpredictable creature from hell.

Two years of destruction, physical and emotional.  It had all been going so well.

Well, they never said it was going to be easy…

The other side…

We got there, with help from everyone from therapists (for me) and doctors and acupuncturists (for my daughter).

We settled down.  We found a beautiful Care Home for her.  Places like gold dust. Funding?  I used every means at my disposal to get that place for her, with funding.  It worked.

For me, so far, that was the ultimate “test”.   For it needed everything to be in place not only on the physical, but also, I believe, on the mental and emotional levels.  Mindset and heartset.

Everything became very clear and focused, but also, as happens with life, the biggest obstacles came up.

It was like treading a tight rope, at any time I could fall, but I knew I had to get to the other side.  I had to choose to see the obstacles as opportunities.  A cliche I know, but cliches are born of truth and this was true for me.  My daughter’s path was my path too.

Happily ever after?

Let’s see.  At the moment it’s all good.  But I have been on this path long enough to know it is never straightforward.  At least for now it is a “breathing out” period…

So why am I telling you this?

Hope.   That’s it.  If you are feeling down, or confused, or overwhelmed, or isolated, there is hope.

We cannot predict the future for our children but we have every choice about how we tackle the present.

 

Claire Hayes 2011

http://autismparentsupport.com

***

Do you have a story to share?

I’ll be asking for submissions soon. Stay tuned!

Laura

**

A REGULAR GUY: GROWING UP WITH AUTISM makes a great gift. Read reviews and order HERE.

 

 

 

 

 

 

 

Excerpt from:

A REGULAR GUY : GROWING UP WITH AUTISM

The morning of May 22, 2006, I set my alarm for 4 a.m. I wanted to be the first one to wish Matthew a happy birthday. He was in a college program year at Camphill Soltane near Philadelphia. Matthew answered the house telephone on the first ring.

He knew I would call.

“Matthew!” I said. “You’re 20! Can you believe it?”

“Yes,” he responded flatly. “But Mom? I have something very important to ask you. I’ve been thinking about Amy. Can we go see her?”

Matthew had met Amy three years before during his first year at Camphill. Like Matthew, Amy has autism. The staff at the school had told us that they liked each other a lot and we were thrilled; since Matthew’s diagnosis years ago, we grieved at the thought of him living a solitary life.

By the time Matthew became interested in girls, he picked the “typically developing” ones—those who showed him even the slightest kindness, smiling at him in the hall at school or helping him as tutors in his special-education class, and he trailed them relentlessly. He would cry and sometimes yell at them if they told him to back off, and no amount of coaching helped. We were thrilled that the school community nurtured and supervised his friendship with Amy.

Amy’s parents were also excited about the budding relationship, and since they lived near the school, they were able to observe and support the autistic lovebirds.

“They are beautiful together,” said Katie, Amy’s mother. “They go for walks and talk, sometimes sitting on the garden bench. Amy doesn’t like to be touched and Matthew respects that.”

Contrary to popular belief, not all autistic people are averse to touch, and we were surprised that Matthew, who had been known to approach women of all ages and ask them if he could put his arm around them, or touch their hair, could restrain himself. I had shared this information with Katie and the school staff.

“So keep your eye on him!” I laughed nervously.

“Oh believe me, we do!” they reassured me.

Amy’s parents sent a picture of the young pair together, and they were a striking couple: Matthew, tall and blond with a wiry frame, broad shoulders, and brown eyes, and elfin Amy, short and slight, with long brown hair and pale blue eyes. The pair stand side by side, looking down and smiling slightly. “Amy doesn’t usually let anyone stand that close to her,” said Katie.

A few incidents in the course of the relationship kept us on edge, as when Amy refused to see Matthew for a week after he pushed her into a swimming pool fully clothed, and the time he followed her into the bathroom and locked the door.

“Did he do anything?” I asked the staff, my heart racing.

“No, he just watched her going to the bathroom.”

Whatever we are paying these people, it’s not enough.

While news of these missteps was unsettling, we felt fortunate that the staff remained calm. They used the episodes to teach Amy and Matthew appropriate rules of relationships. Everyone began to believe the relationship could last, and wouldn’t that be great?

But a few weeks before the end of the school year, Katie and Sam, Amy’s father, took the two out to lunch to celebrate Matthew’s birthday. Just as Matthew was opening a gift that Amy had picked out especially for him, he asked the group if they knew Katherine.

Katherine was a student-teacher-in-training who had been visiting the school for the last few weeks. I had heard that she was very attractive, and that Matthew was taken with her.

“She is probably better-looking than Amy,” he said. “I might like her better.”

As a person who would rather endure great pain than hurt anyone’s feelings, I was mortified when I heard about his comments. But Katie and Sam found them amusing and said that Amy didn’t take them personally. I didn’t want to ask whether they thought that Matthew was dumping Amy.

“If we could all be more straightforward, the world would be a better place!” they said, but I was more in favor of polite avoidance and gracious reserve. Unfortunately, Matthew will never be subtle. His brain is wired for brutal honesty.

Peter and I flew back a few weeks later to pick up Matthew for the summer break, and we asked him if we could meet Amy.

“I’ve moved on,” he said, “and we’re not going to talk about it anymore.” Katie and Sam stopped by to meet us in person, for by now we had already forged a strong connection, having commiserated long-distance about the road behind and ahead. We had laughed about our kids’ similar eccentricities and wondered how we could help them connect in a meaningful way.

Though Matthew and Amy parted for the summer dispassionately, we hoped that their friendship could be rekindled in the fall. But the following October, when I asked Matthew about Amy, he reminded me that he had moved on.

“Besides,” he said, “she got a haircut, and I don’t like it.”

 

In the year since Matthew had last seen Amy, who was now attending a Camphill School in New York, he had complained that there were not enough nice girls around, and that he was lonely. He asked me if I thought, perhaps, that Amy might be lonely, too.

I called Katie and told her about Matthew’s request, and suggested that perhaps we could arrange a visit over Memorial Day weekend. She agreed right away. Maybe we could have lunch at their home in Connecticut, and then go bowling and for a hike! I felt like such a good mother going the extra mile to help my lonely son.

Matthew and I drove from Philadelphia to Connecticut and spent the night with family before meeting with Amy and her parents.

“What will we do at Amy’s?” Matthew asked.

“We thought it would be nice to visit for a while at their house,” I said, “and then go out to lunch. Maybe we can go bowling.”

“No bowling,” he said. “When we get to Amy’s, all of the grown-ups will talk outside, and Amy and I will go in the house and sort things out.”

Sort things out?!

“What do you mean, sort things out?” I asked.

“I want to be alone with Amy in her room with the door shut,” he responded.

“But what if Amy doesn’t want to be alone with you, and what if her parents don’t want you to be alone with her?” I asked, all at once feeling like I was headed for a trap.

“I’ll tell them that I’m no one to be messed with,” he said, “and we aren’t going to talk about it anymore.”

It became clear to me that while I was making plans that you might see on a made-for-television movie, Matthew was making plans of his own.

After a brief discussion that escalated into a shouting match, I let the subject drop and called Katie with an SOS before we went for our visit the next morning. The two of us laughed uneasily about Matthew’s plan, but decided it would be best to go ahead with the visit.

“We’ll just have to be firm,” said Katie.

But the next morning, when we arrived at Amy’s house nestled next to a pond at the end of a lovely green country lane, there was no walking and talking and standing side by side with slight smiles. Amy, looking adorable in white capri jeans, tank top, and high-heeled sandals, was a bowling pin, and Matthew was the ball, with overwhelming momentum. After the initial greeting where we all told each other how great we looked, Katie suggested that we sit down and catch up.

“Listen,” Matthew responded, “I’m the boss today, and I say that Amy needs to be all alone with me in her room.”

“But I don’t want to be alone with him,” Amy whispered to her mom. “He’s too bossy.”

“Matthew,” Katie said calmly, “we are so glad you could visit. But Amy would be more comfortable if we all hang out together.”

“No way!” yelled Matthew. “I’ve been thinking about Amy for a long time! I even dream about her when I’m sleeping, and I want to be alone with her!”

God help me.

“What you are saying then, Matthew, is that you don’t care about what Amy wants,” Katie said, locking eyes with Matthew. “It’s only important what you want.”

“That’s right!” said Matthew triumphantly, like a game-show host moving a contestant to the championship round.

Sam, Katie, and I, all experts in managing autistic meltdowns, gave this visit our best shot and tried all of our tricks, but it was no use. When Matthew made plans, he was determined—obsessed—to see them through, and of course we weren’t going to let him have his way.

“Let’s go out to lunch now!” I said, desperate to move things along. It was only 10:30.

We all piled into the family’s minivan, Matthew leaning close to Amy, and Amy leaning away from him, muttering, “He’s bothering me. I don’t like it.”

During lunch, where Matthew ordered pizza and 21 french fries, Sam, Katie, and I tried to reduce the tension with cordial conversation.

“Matthew, tell everyone where you are going this summer,” I said cheerfully.

“I’m not in the mood,” he replied. “Let’s go back to Amy’s.”

“Matthew,” Sam said, trying to change the subject, “guess where Amy is going this summer?”

“I give up,” said Matthew, “and I’m tired of all this talking.”

Once back at the house, Matthew announced that he would like to stay a little longer, and then come back the next day, but Sam, Katie, and I, who all looked like we had aged ten years in the last few hours, blurted out reasons why it was time to end our visit—now. Somehow I managed to get Matthew back into the rental car, and we drove away. Matthew burst into tears, and when we got to the main road, I pulled over and hugged him.

“They wanted me to stay,” he said, “but I’m too busy.”

“That’s right, Matthew,” I said, patting his back. “You’re a busy guy.”

The next morning, I called Katie and thanked her, and said wow, wasn’t that exhausting. She said yes it was, and did I know that Matthew had asked Amy if they could lie down in the grass and do sex.

“Oh, Katie,” I gasped.

“She said she didn’t want to lie down in the grass because she didn’t want to get her clothes dirty and I’m not sure if she even understood what Matthew was wanting. She’s still pretty naive.”

“Oh, Katie,” I repeated, “I am so sorry. Thank you for telling me. Thank you for being so honest.”

“And we thought it was difficult when they were young,” Katie sighed.

***

When Matthew was in eighth grade, a psychologist who specialized in teaching adolescents with special needs about sex visited his class. A handful of parents, including me, looked on from the back of the room  as she stood in front of the class with the most impressive poker face and peeled the clothes off of a man doll and a woman doll. The dolls shared her ridiculous poker face as she fit their parts together.

“Oh, my God,”  Matthew mumbled in disgust , as parents stifled laughter. I was transported back to the day that I sat in the auditorium of Havens elementary school, slides of  male and female reproductive organs flashing on the pull down screen in front of Mrs. Stewart’s 6th grade class. Pamela Abernathy   fainted and fell back in her chair and my friends and I giggled reassured each other that our parents had only done that when they wanted to have babies. I wondered how Matthew was processing this information.

How could I be sure that he understood the basics of sexuality (including the urges??)

“If we’re not pre-teaching kids with autism going to middle school,” say’s Peter Gehrhardt, an expert in adults with autism and the Director of the Organization for Autism Research , “they’ll get a very skewed vision of human sexuality”.  Peter spoke at the recent Morgan Center Autism Conference. A podcast from his talk will soon be available and I will post it here.

Some tips from a past interview with Lisa Jo Rudy:

 

Think ahead – be proactive (“pre-teach”)

• Be concrete (talk about the penis or vagina, not the birds and bees)
• Be consistent and repetitive about sexual safety
• Find someone of the same gender to teach the basics of safety and hygiene
• Be sure to address the social dimension of sexuality
• Strongly reinforce for all appropriate behavior
• Redirect inappropriate behaviors. (such as masturbation.)

***

Meanwhile, back in Connecticut…

 

I decided to call Matthew’s primary caregiver, David Schwartz at Camphill, who had helped guide Matthew with his relationship with Amy from the beginning. He had a way of explaining things simply and frankly. Matthew had great respect for David and turned to him when he was upset, confused, or simply needed to work something out.

“I’ll talk with him as soon as he gets back,” said David. “I’ll call you and tell you how it goes.”

 

“What did you say? What did he say? Did you get through to him? Should I talk to him?”

David told me that he asked Matthew to tell him about his weekend. “How did it go? How is Amy doing?” he had asked.

“Amy looked nice, but the grown-ups wouldn’t let us go in Amy’s room and shut the door.”

“Did Amy want to go in her room with you and shut the door?”

“Not really. So we went outside and the parents kept watching us.”

“Did Amy want to be alone with you outside?”

“I’m not sure.”

“Did you touch Amy?”

“I wanted to. I wanted her to lie down on the grass so we could do sex.”

“Have you ever had sex with anyone else?”

“Probably not.”

David told Matthew what he had heard many times before—but none of it had made sense until today.

“Sex is part of a loving relationship. Both people have to agree to have sex, or it is out of the question. If you have sex, the woman can get pregnant and have a baby. Do you understand?”

“Yes.”

“Are you ready to be a dad?”

“No way. I decided I’m not going to do sex with a girl after all.”

David reassured Matthew that it was normal for a man his age to want sex, but that there were other ways to satisfy those urges.

“Did you tell him how to masturbate?” I asked, blushing through the telephone.

“Believe me, Laura,” David said. “He’s already an old pro at that.”

He told him that in a few years, when Matthew was older and more mature, he might be able to have a relationship.

“The business of sex and relationships is complicated for all of us,” said David. “Matthew needs everyone to support him through this. Just keep it simple, be honest.”

I thanked David profusely, and he said you’re welcome, “but I’d better get going,” he joked. “I’ve got to keep my eye on Romeo!”

***

Click HERE to order A REGULAR GUY: GROWING UP WITH AUTISM

When I pulled into the parking lot of my 23 year old son’s home near Santa Cruz, California, he was standing there with his head cocked impatiently. “You said you would be here at 12 noon, and it’s 12:11 already,” he huffed. Even though it was a cold and drizzly February day, Matthew was wearing his favorite outfit- white socks and sandals, shorts and a Roy Orbison t-shirt.

Matthew has autism and lives at Camphill  California, a community for individuals with intellectual disabilities.  I was picking him for his routine first-weekend -of –the-month visit home an hour north near San Francisco. The weekend routine included a dance at our church for disabled young adults and a series of gardening jobs for neighbors and friends prearranged by Matthew himself.

When Matthew climbed into the car for our drive home, he launched into his usual tedious discussion about the origins of the song “Pretty Woman”.

“Who did Roy Orbison write it about? Why did Van Halen also sing the song? Was Eddie Van Halen singing it about Valerie Bertinelli? Did Roy Orbison ever get to meet David Lee Roth? Was David Lee Roth sad when Roy Orbison died?

It is a draining conversation to maintain, but I manage to respond with feigned interest.  So many of my friends have children who are non-verbal; they would give anything  to have the kind of interaction I have with Matthew.

After our Roy Orbison discussion played itself out, Matthew exclaimed that he couldn’t wait for the Super Bowl.

“I didn’t know you were a football fan”.

“All men are football fans,” said Matthew with a sly grin, “and they all go to Super Bowl parties.”

I felt completely unprepared for this change in the schedule, one that I knew might be hard to rig. My husband and y two younger sons were away on a ski-trip, and it’s never easy to find and invite oneself to a party with little notice.

“I can invite some people over for the game,” I suggested.

“I want to go to a party at a different house and I don’t want my mother to be there,” Matthew replied flatly. “I’ll call my friends tomorrow.”

The friends that Matthew was referring to are the non-disabled ones he knew in middle school who had  been kind to him and had worked as aides in his special education class. Most are 23 like Matthew and have graduated from college and are in the work world. They have moved on.

When we got home, I called an army of family and friends who had generously saved the day in situations like these in the past.

“I need a Super Bowl party for Matthew,” I told them, but only one I could reach right away was my  friend, Kate, just as she and her family were leaving for the weekend.

“If we’re back in time Sunday,” she said “he’s welcome to come here for sure.”

***

After breakfast on Saturday morning, I lingered by Matthew’s bedroom door and listened as he phoned his “friends”.

“Hi, it’s me, Matthew. Is Joe there?”

Long pause.

“When did he move?”

Pause.

“I really wanted to watch the Super Bowl with him.”

Long pause.

“OK Bye.”

Matthew made phone calls like this on and off throughout the day with no bites.

By 4pm, I was counting the hours before bedtime when Matthew asked if we could go to the store.

“I want to get some chips for the Super Bowl Party tomorrow. We should make some cookies, too.”

Without a clear plan by Sunday morning, Matthew was desperate, and so was I. “I seriously need to go to a Super Bowl Party!” Matthew wailed, “and everyone is just so busy!”

I made the mistake of telling him that Kate and her family might have a party if they got home in time. Matthew jumped on the phone and called their number over and over, slamming the phone down every time he heard their “We’re not home” message.

“Would you like to go out for pizza?” I asked him. “They might be home by the time we’re finished.”

“No thanks,” he replied, “there will be plenty to eat at the party.”

He went into his room to listen to music until 3pm, and then asked me for a nice plate to put the cookies on.

“I’ve decided we should just go to Kate’s house” he said.

“That’s fine,” I replied, “but when we get there, they may not be there. Or they might be tired from their trip and tell us to go home.”

“It will be fine,” Matthew said. “I remember that they are usually really nice.”

Matthew was serene as we drove to Kate’s house, the plate of cookies and bag of chips on his lap. I, on the other hand, was a mess.  Some have nightmares about going to a class unprepared—I have nightmares about imposing on people.

“Please, God,” I prayed en route,” Let them be home and let them invite us in.”

When we pulled up to Kate’s house, Matthew bounded up the stairs and knocked on the door with a big grin. Kate opened the door in her bathrobe and smiled back.

“Matthew!” she said, “I was hoping it was you! We just got home!”

Matthew walked in and put the cookies on the coffee table just as Carrie Underwood started singing the Star Spangled Banner. Kate’s husband and teenage sons took their place on the sofa next to him.

“I’ll need a bowl for the chips,” Matthew said, “Mom, you’d better get going.”

Kate winked at me, I mouthed the words “Thank you and God bless you,” and went home.

I dropped Matthew off the next morning at Camphill, feeling like I had just crossed the finish line of a triathlon. Before I could get away, Matthew chased after my car and waved for me to stop.

“Mom, wait, I forgot to ask you something very important that I’ve been wondering about. Did Roy Orbison ever meet Valerie Bertinelli?”

“I don’t know,” I sighed, “but I’ll find out and we can talk about it next month.”

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.

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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.

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