Archive for the 'Voices of Autism' Category

Autism: When people stare–a confession and some advice

I recently got my autism forum on Facebook all riled up by this query:

“Don’t love the stares that come with being an autism mom, but used them. You?”

The following true story (true confession) is adapted from the first chapter of A REGULAR GUY: GROWING UP WITH AUTISM along with some of the things I have learned from being on the receiving end of giggles and stares:

***

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 exhausted by endless caretaking.

Through the years, there were others I couldn’t help but laugh at, like the twin brothers 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, so did our best 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 and well-dressed.  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 limping up the stairs toward my apartment, a bouquet of flowers shaking, 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,” I said,  ”it would be hard, but I’d do fine. But I have a feeling my kids are going to be healthy.”

“So do I,” said Mom. “So do I.”

***

Some thoughts on the stares and the giggles:

1) It’s hard not to look. My son’s behavior (and my attempts to control it) can be stare worthy and even comical. People are curious.

2) When people are watching (staring) you have an opportunity to model best ways to deal with a person with a disability.

3) When people frown are display other disapproving behavior, try your best not to engage with them unless absolutely necessary. It could cause the situation to escalate and make things worse for your child.

4) If you snap (and you will), like the time a woman wouldn’t sit next to Matthew on a plane flight, it’s OK. Just reassure your child as soon as is possible.

5) Remember that most people are watching you are compassionate. Sneak a peek from time to time. Their smile of admiration will make your day.

In my experience, the world has become a friendlier place for families dealing with disabilities, including parent Julie Wagner Leonard:

The zoo in a city nearby had a special invitation-only open night for just disabled children. (Invites issued through area pediatricians). My sister and I took her seriously autistic son and his younger sister. It was fabulous. Hundreds of people there and no ignorant stares, just a few nods and knowing smiles. We could relax and enjoy ourselves. He had a fabulous time and so did we.

***

I recommend the following parent perspectives:

 

30 things people don’t get about kids and adults with cerebral palsy (but should) Ellen Seidman, Love That Max

Love, a Diary of a Mom

Tell me a Little Something – Jennifer Byde Myers

What are your thoughts on this topic? Share them here!

***

Order my book here. It makes a great gift for Mothers Day, teachers appreciation, Fathers Day etc.

 

 

 

Autism: “Miracle” cures remembered

Matthew (right) with brother Andy

A look back at “The Dark Ages” when early intervention was a guessing game:

An excerpt from A REGULAR GUY: GROWING UP WITH AUTISM

 

1993

During winter break in Matthew’s first-grade year, and without the support of the experts who were currently working with Matthew, Peter and I decided to try the miracle cure: Auditory Training.

“Did you see that girl on Oprah?” I asked Dr. Hoffman. “I don’t usually watch Oprah, but one day I flipped it on while I was folding the laundry. Anyway, through this amazing treatment, this girl went from autistic and functionally retarded to gifted.”

The theory behind auditory training, simply put, was that some children who suffer from learning and behavioral disorders, including autism, are hypersensitive to certain frequencies of sound. Auditory training was designed to normalize hearing and the ways in which the brain processes auditory information.

“We figured that since Matthew is hypersensitive to sound, auditory training might cure him. Do you know anyone who has tried it?”

Dr. Hoffman had not seen the girl on Oprah, but Christy, the speech therapist, said she knew some parents who had tried the training.

“It’s very expensive,” she added. “Some claim that they have seen some improvement, but none of my clients has been ‘cured’ by it. There has been no clinical proof that it works, so I’m skeptical.”

“Let me put it this way,” I said. “If it were your child, would you try it?”

“No.”

But Peter and I were already carried away by the wave of information we had gathered on auditory training since the young girl’s appearance on the Oprah show. What if Matthew’s autism was caused by hypersensitivity to sound, and what if this one treatment improved his life forever? And how guilty would we feel if someday, some specialist said, “If only he’d had auditory training when he was six. . . ”

“I know that if I heard everything as acutely as Matthew does,” Peter said, “I’d have a hard time focusing on anything else. I’d go mad.”

Matthew started the training just two weeks after the birth of our third son, John. As soon as it became clear that Matthew’s disability would be lifelong, I was desperate to have a third child. “We don’t want our boys to be viewed as ‘the normal one and the one with the problem,’” I told Peter. “Can you imagine what a burden it would be for Andy down the road?”

Peter agreed with the idea of having a third, but thought we should find out if we were at risk of having another child with autism. The responses from the experts were mixed, and Peter was ambivalent, but I pressed, reasoned, and begged and finally we took a chance. John was the most beautiful of my three babies and appeared normal, but we would have to wait a while to see whether he had escaped autism.

The closest auditory training practitioner we could find was in Marin County, about an hour’s drive north on a good day. Peter agreed that he would be in charge of taking Matthew to and from the ten-day program, during which Matthew would listen to music wearing headphones fitted with a special electronic device. The device filtered frequencies from the music, sending modified sounds into Matthew’s ears and training his auditory nerve to process sound normally. Each day of the training, Matthew would wear the headphones for thirty minutes in the morning followed by a three-hour break, and thirty minutes in the afternoon.

“Matthew and I can go out for lunch and for a hike between sessions,” said Peter. “It will be fun.”

The training facilitator suggested that before the training we put headphones on Matthew at home as much as possible to get him used to it.

“And if he doesn’t get used to it, don’t worry, we can make the headphones so loose that he won’t know he has them on. And we have plenty of toys to keep him busy.”

“But will the treatment work if the headphones are loose?”

“Oh, don’t worry, they won’t be too loose!”

Even with a two-week-old baby, I went along for the ride the first day of training. The “facilitator,” who was also a psychotherapist, had sounded quite professional on the phone, but I wanted to meet her in person. “I work with my husband,” she had said. “He is also a therapist, and great with kids.”

 

The husband greeted us when we arrived and ushered us into his office. He was tall and thin and wore a full beard, Birkenstocks, and a leather vest over a paisley shirt.

“It smells like garbage in here,” said Matthew. The husband opened a window.

The office reminded me of a low-rent version of Dr. Hoffman’s.

Instead of a sleek, leather chair there was a beat-up brown recliner, and next to it a large beanbag chair with toys strewn all around it. I looked at the certificate on the wall.

“You do hypnotherapy, too?” I asked, and he nodded.

“That’s my bread and butter. My wife will give Matthew an audiogram before we start, another during the middle of treatment, and then a final one when treatment has been completed. We’ll make adjustments to the filter along the way to get the best result. You should see some results immediately following the last treatment, but the full effect won’t be apparent until six months after the treatment is completed.”

“Do you guarantee your work?” asked Peter.

“Yes. After the six-month period, we’ll do another audiogram and more treatment if he needs it.”

If you’re still here in six months.

“Can I see the headphones?” I asked. “I’d just like to see how they fit Matthew.”

The husband sat Matthew in the beanbag chair and put the headphones on him. Then he turned on the music and Matthew started laughing—a crazy, scary laugh.

“See?” said Peter. “He likes it.”

I knew what Peter was thinking. We have already put $1500 into this thing, fifty percent of the total, and damn it, it’s gonna work.

“Where is your wife?” Peter asked, and a red-headed beauty wearing a gauzy peasant dress came floating in breathlessly.

“Sorry I’m late,” she said. “My cat is sick.”

Yeah, well I’ve got a two-week-old baby, and I’m early.

“Do you have any questions?” she asked.

The husband had answered our questions, so we said no.

Peter and I took our seats in the waiting room. Baby John slept, and Andy opened his new coloring book. I glanced through the vertical blinds into the room where the wife was giving Matthew his audiogram, the husband by her side looking befuddled.

“Peter?” I whispered. “Look.”

“Oh, man,” he sighed. “If this pair cures Matthew, that would be the miracle.”

 

Peter and I studied Matthew carefully once he had completed the training, watching for his reaction to sounds and for any improvement in his behavior.

“I think he’s little better,” said Peter one evening as the family sat down to dinner. Then as if on cue, Matthew jumped up from the table and ran outside. We followed him and found him smiling intensely as he looked skyward at the white trail of an airplane. Then he jumped up and down, laughing and drooling, his hands flapping.

“They said we might not see the full effect for six months,” Peter said as I shook my head.

“Yeah, we’ll have to mark that on the calendar.”

 

Any improvements that were gained by auditory training, real or imagined, were erased in an instant on the third Monday of Matthew’s second-grade year, two months after the magical six- month deadline. Someone pulled the school fire alarm, and Matthew refused to take his hands off his ears—for three whole months. A special meeting was called at school; even Dr. Hoffman attended, but no one was able to get Matthew to take his hands off his ears.

Finally, Matthew’s Grandpa surprised him at school one morning, took Matthew’s wrists and said, “Matthew. It’s safe now.”

And that was that.

NOTE:

Auditory Training (Now referred to as Auditory Integration Therapy) is still available today, and while some individuals have reported improvements in auditory processing resulting from AIT, there are no credible studies that demonstrate its effectiveness or support its use.

To learn more about treatment for autism spectrum disorders, CLICK HERE.

You might also be interested in the following articles:

Ten Autism Myths Debunked: Wrong Planet

Why autism moms act the way they do

10 things I wish someone told me about parenting a child with special needs: Liane Kupferberg Carter

 

 

 

 

 

How I trained to be the parent of an adult with autism

I ran into an autism mom friend today. Her name is Jenny, and she had that if-you-ask-me-how-I’m doing-I’ll-start-crying look on her face.

What’s going on, I asked, and her blue eyes spilled over.

“Joe turned 11 last week,” she said, “and for the first time I started freaking out about the future.”

She started sobbing.

“And then my husband and I went to the Round-Up Saloon, you know, that fun bar downtown, with some friends. It was Karoke night, and this guy, I guess he was in his 20′s, started singing. He was rocking and dancing around awkwardly–it was so obvious that he had autism or something like it, and I just lost it.”

I handed her a tissue.

“I mean, I know Joe can’t be a little boy forever, but it just got to me. Will he be like that guy someday?”

Was it this past Saturday night, I asked her? Was the guy pretending to be a rockstar, handing out t-shirts and CD’s  and did he hang up a poster of himself? She nodded, biting her lip anxiously.

“That was Matthew,” I chuckled, and Jenny looked mortified. I’m sure she is probably still kicking herself, even though I told her it was OK, really.

I too, had cringed at the thought of grown up Matthew, once averting my gaze  when I saw a man with a developmental disability struggling with a transaction at the grocery store.

But I have evolved.

I remember when I was 5 weeks pregnant with Matthew, and my brother asked me to baby sit his 4 year old, my niece, Melissa, for a day. After just a few hours, I was completely exhausted, and wondered how in the world I could be a parent.

“You’ll be fine,” my brother assured me, “it’s kind of like getting in shape. You build up strength over time.”

That’s how it is when you are an special needs parent. You get in shape. You toughen up. You cry a lot, and laugh just as much. It is really, really hard, but then one day, your are sitting in a bar, watching your son sing, and you are recording his performance on your iPhone. Sometimes people snicker, but usually they cheer and clap, and you can’t stop crying because you son looks so happy.

And then you hand out his t-shirts and go home, thinking “Little did I know…”

***

 

Do you have questions? Contact me HERE and I will do my very best to help.

FOLLOW ME on FACEBOOK and TWITTER.

Read the first three chapters of my book HERE.

You’ll be hooked.

 

 

 

 

25 things about me: a brief history of motherhood, autism style

1) My husband and I planned on having our first child after two years of marriage.Matthew beat us by 2 months.

Hopeful parentsHopeful parents

2) I took Matthew on a job interview when he was eight weeks old because I couldn’t bear to leave him with a babysitter.

3) The first person that told me that Matthew, then three, was developmentally delayed was a speech therapist. She was also the first person who didn’t mention how adorable he was.

Dreamy Matthew, age one

Dreamy Matthew, age one

4) My husband and I coached Matthew before his next evaluation with a child psychologist. We read him Richard Scary’s Best Word Book Ever.

5) When the child psychologist confirmed that Matthew was developmentally delayed, I thought that meant he could catch up. I really did.

6) Matthew lined up toys and laughed too hard at sprinklers in the garden. None of the books mentioned this behavior in the milestone department. What was going on?

7) I was angry with Matthew for being stuck on the sprinklers, and the drains, and the lights, and I felt guilty that I was angry.

8 –    When Matthew’s baby brother Andy charmed family and friends with his personality and smarts, my love for Matthew deepened.

Matthew (right) with brother Andy

Matthew (right) with brother Andy

9) Andy is now 24. My most cherished childhood memories with him are the walks we took while Matthew was with speech therapist/psychologists/occupational therapists etc.

10) Matthew’s youngest brother, John, was one week old when we tried our first miracle cure, auditory training. He is now 20 and helps Matthew film “rock-u-mentaries”. More about that another time. He is even more patient with Matthew than I am.

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Baby John

11) Matthew is WAY more capable than I ever dreamed he would be. WAY. He’s hardest working person I know.

12) It used to ruin my day when people stared at Matthew, but it doesn’t anymore.  I get that my son’s behavior can be stare worthy, and that people are curious.

13) It ruins my day when Matthew tells me he is lonely….

14) …but that happens less frequently because Matthew has friends. Isn’t that great?

15)  The year I accepted that Matthew’s autism was lifelong was also the year I had a mini-breakdown. O.K., It was more than a mini-breakdown.

16) The best things I ever did was find a good therapist.

17) My sense of humor has saved me, and it gets better every year.

18) There is nothing more genuine than one of Matthew’s smiles.

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19) There are more kind people in the world than there are jerks.

20) I cried at every IEP except for the last one.

21) I never blamed vaccines.

22) I’ve met some of the best people because of Matthew.

23)  My husband I have stayed together-I hear that is unusual.

Married 28 years (so far!)

Married 28 years (so far!)

24) I am luckier that most.

25) The lump in my throat will never go away.

***

Do you have questions? Contact me HERE and I will do my very best to help.

FOLLOW ME on FACEBOOK and TWITTER.

Read the first three chapters of my book HERE.

You’ll be hooked.

Reinvention, aging autism mother style

I heard Chesley “Sully” Sullenberger, the heroic airline pilot who landed a US airways plane full of passengers in the Hudson River a few years back, being interviewed on a radio program the other day.

“Your not just a hero, are you Sully?” the radio host asked.

“That’s right,” replied Sully, sounding slightly self-conscious. “I’m more than a hero. I am also a speaker, a consultant, a safety expert, an accident investigator, a television commentator, an author and a thought leader.”

My heart went out to Sully in that moment, but because it was clear that some PR/Media person had gotten to him and told him how describe his newly reinvented self. The “Thought Leader”  bit gave it away. I know this because I’ve  been advised that  I, too, was a thought leader, and that I should put that in my email signature along with a few other descriptors.

More about that later.

After the Sully’s first interview segment, the radio host invited listeners to call in. They all wanted to talk about the incident on the Hudson that made him a hero in the first place. He cleverly turned the questions into opportunities to sell himself, and who could blame him? That is what they teach you in Public Speaking/ Social Media/PR/Author Marketing Workshops.

“Sully,” the first one asked, “what was your first thought when you knew you were going to land in the Hudson?”

“Excellent question.” he replied. “In my new book, I describe that feeling. Now when I consult with airlines and at accident scenes and when I report on the news and speak to groups…”

I wanted to call Sully, who I could envision sitting in the radio station wearing those big headphones, and tell him just to be himself.  We all know that you are amazing. We love your books, and we love hearing what you have to say. If doing all of the consulting and writing and speaking and reporting and thinking and leading makes you happy, that’s great. But you do not have to sell us. You are awesome.

Here is my “thought leader” story.

I’m the mom of three who started writing stories about raising a son with autism. I wrote a book which I am proud of and I continue to write about a number of things. A few years ago, someone asked me to be a keynote speaker and I freaked out and took not one but two public speaking classes. I learned that I needed to slow down when I talked, and that I should stop waving my arms around. I learned that I should pause between words and phrases so that I could have more impact. I learned to look at people in my audience for three seconds before finding another person in the audience to look at for three seconds and so on.  I learned that I should have a “sample of my work,” a video made of me in action. I should also have a professional “head shot.”

I went to a photo studio near my house for the head shot, wearing my pink “church”  jacket and fluffed up my hair. They took pictures of me from all different angles. In the  best photo I am  sitting sideways and twisting my head and shoulders forward. They photo shopped out a bunch of wrinkles and charged me $100.00.

For the video of me in action, I ended up standing in my living room with a flip camera, positioned carefully  in the bookcase (that’s where the light was the most flattering) for about 2 hours before I came up with something decent.

“If you want to hear more,” I said at the end of the  3 minute video, “or if you want me to come speak to your group, contact me on my website, blah, blah, blah.”

I learned to jazz up my website with words like “Autism Expert” “Speaker” and “CONSULTANT” along with a clever tag line which I am too embarrassed to share here. They call it branding, Search Engine Optimization style.

I have had a number of speaking gigs-some more polished than others. The ones that get the best reviews, though, are the ones when I go off script and blurt out something that I had no intention of saying in public. I’m especially good with the Q&A because I am able to zero in to issues that need to be discussed, and do my best not to say, “Good question. In chapter 3 of my book, available on Amazon…” I like to tell parents and teachers what worked for this aging autism mom, and that sure, raising Matthew (he’s 26 now and has a job!) has been challenging at times, but I admire and enjoy him so much.

About a year ago, I had an idea for another book, and sent out query letters to literary agents. I mentioned all of the places I had been published, and which famous people and organizations that might write a blurb (“this is a must read!”) for  the cover. I boasted that I had nearly 10,000 followers on my  Facebook page , and on Twitter (so therefore, I have a big market.)

“Continue building your BRAND,” replied one of the agents, at which point I decided that I was done building my brand.

So when I heard Sully, and I know that I am not in his league, it occurred to be that to be myself should be enough. It is enough to be a wife,  a daughter, a sister and a friend and the mother of three terrific sons. It’s enough to write and talk about my experiences and try to help people.

Even if I’m not sure what brand I am.

Laura Shumaker

Writer,  Blogger, Speaker, Autism Advocate, Transition Expert, Parenting Expert, Crises Management Expert, Expert Expert, Mother, Author, and Thought Leader

 

 

 

 

 

 

Autism FAQ: ” I could do a better job if I could communicate with parents. How can I get them to talk to me?”

Here we are, over a month into the school year. How are things going so far? Do you have a good connection with your child’s teacher?

I ask this because I was talking to a group of teachers this past weekend, as I do from time to time, about my experience raising a child with autism. My favorite part of these talks is the Q and A. “You can ask me anything,” I say, “and I will answer to the best of my ability.”

I get a lot of juicy questions, but there is one that I am asked most frequently:

I could do a better job if I could communicate more with parents. How can I get them to talk to me?

I flash back to the year that I was that parent, and how Matthew’s teacher found a way to connect with me:

Matthew was a 7th grader at the middle school around the corner, and he was going through a particularly impulsive and aggressive stage, likely fueled by the onslaught of adolescence. While I tried my best to contain him, I had other troubles at the time that distracted me. My mother was sick (really sick) and so was my husband (cancer-he’s been in remission for over 10 years, thankfully). My two younger sons were spending a lot of time with their friends, and I missed them a lot. I picked up Matthew each day from school, averting the gaze of his new teacher, Holly.

If things weren’t going well at school, I just didn’t want to know about it.

One day Holly waved at me as she drove by my house on the way home from school. I waved back, and then panicked when I saw her car stop–and then back up.

“I just wanted to tell you something really quickly,” she said, “I know you are busy, but I want you to know that I really enjoy having Matthew as a student.”

She went on to tell me how much she admired me, and that I had done such a great job with my boys.

“I just wanted you to know that,” she said as she drove away, “let me know if I can help you with all that’s going on.”

I felt relieved and grateful and supported, and I was inspired to partner with Holly in order to make Matthew’s year a more productive one.

It turned out to be one of Matthew’s best years ever, despite the angst of the home front.

So parents, I urge you to be less mysterious and more interactive with your child’s team (teachers, therapists, etc.)

And teachers, I know it can be difficult to communicate with parents. Praise is a magical ice-breaker.

___

Parents and teachers–how have you bridged the communication gap?

___

Laura’s book A REGULAR GUY: GROWING UP WITH AUTISM makes an excellent holiday gift.

ORDER NOW before the rush.

Missing Matthew

On Huffington Post Parents. CLICK HERE to read!

“This is not a book about a young man with a disability, but rather a story of love, adaptation, and acceptance.”

  Read First Three Chapters

A Regular Guy

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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 has autism.”

“Autism? 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.

Autism, parenting, and feeling judged

I saw a woman at the gym today that I *really* wanted to avoid.

I used to see her a lot when Matthew was small. It seemed she was always there when he was bolting away from me at the grocery store, the swimming pool, the park. She watched me as I tackled Matthew before he wandered into the street, and while I tried defuse big bad meltdown. She was always sitting right behind us in church while Matthew flapped and tapped and giggled. Her pale blue eyes followed us everywhere and her frown was constant.

I wove my way around the exercise bikes and ducked behind the magazine rack to avoid the woman, and then ran smack into her in front of the drinking fountain. She was wearing that frown that I remembered well, and her eyes bored into me in such a way that I couldn’t pretend to avert her gaze.

“You look familiar,” she said, cocking her head. No kidding I look familiar. “Did our kids go to school together or something?”

“Maybe,” I countered innocently, “I think we may have seen each other at the pool.”

“Of course!” she said smiling, her frown softening ever so slightly.  ”You had that adorable boy. I remember he had…issues.”

I told her that Matthew had autism, that some years had been better than others, but that Matthew was 26 now and doing so well.

“I’ll never forget the day he climbed to the top of the batting cage during a little league game,” she said, shuddering, ” he was teetering around and you climbed up like it was nothing and carried him down.”

We burst out laughing and went on to talk about how her children were doing, the ones I never got to know because I was so sure their mother was evil. What a waste! Here was this really nice and compassionate woman who I assumed was judging me when in reality she was just curious. And concerned. Even now when she was laughing with me she was frowning. She was a frowner, not a judger!

As we parted ways, I thought about all of the other people over the years that I had judged–and avoided– because I assumed they were judging me.

So the next time you think some one is judging you, take a step back. They might just be admiring you.

***

READ Laura’s awesome book A REGULAR GUY: GROWING UP WITH AUTISM

Follow her autism blog at SFGATE.

 

 

 

 

 

 

Staying married, autism parent-style

I talked to a group of young autism parents recently and let it slip that my 28th wedding anniversary was coming up. I heard a collective gasp, and then applause. I felt like I was on the set of Oprah (or what the set of Oprah was like before she moved on.)

A teary eyed young woman raised her hand.

“How have you stayed married?” she asked, “I hear the divorce rate is high for parents of children with autism, and I’m terrified.”

I’d heard that statistic in different versions over the years myself. I did my own informal poll on my autism facebook forum and came up with more hopeful statistics(here). So did Easter Seals in a 2008 study.

Click here for results

I thought about all the obvious ways that parents of children with special needs should nurture their marriage, but then thought of a not so obvious reason that has worked for my husband and me.

We are nice to each other.

Here are just a few examples from the archives of our 28 years:

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)My husband got up with the boys every Saturday for a lot of years and made pancakes with them and watched Disney movies so that I could sleep.

3) When my husband asks me what I want for my birthday, and I give him a few ideas but then he gets me something that I didn’t ask for and I’m not too thrilled with it, I thank him profusely instead of complaining.(This was learned behavior–did not come naturally.)

4) I let my husband vent without giving advice. He does the same.

5) When we crack under the pressure of life and scream and yell at each other, we try no to let the kids hear, and we hold back on the personal attacks. That would not be nice.

5) We joke around. We try to look nice for each other. We compliment each other. We tell each other if we’re angry about something because we recognize that we are not mind readers. We apologize when we should. When one of us slips and gets snarky with the other, all we have to say to turn things around is “be nice.”

What are your secrets for a long and happy marriage?

***

More information about autism/marriage statistics here :80% statistic is a myth

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Need a great summer book that will inspire you?

CLICK HERE to learn more. Available in print and e-book.

 

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