Autism: Educate thy neighbor

It was a beautiful April afternoon in Lafayette. Matthew, who is now 26, was approaching his fourteenth birthday and painting with watercolors peacefully while his younger brothers Andy and John kicked the soccer ball around in our backyard. We had had our share of bumpy days lately, but this was not one of them.

The mail came, and in the midst of the catalogs and bills was an official-looking envelope addressed to Mr. and Mrs. Peter Shumaker that got my attention.

On letterhead from the offices of attorney Casper White, it read:

“I am writing you regarding the bicycle accident involving your son, Matthew, on March 8, 2002 (about a month before) blah, blah, blah, I am representing so-and-so who was injured in the accident, please contact me, etc.”

I walked into the kitchen where Matthew was painting and asked, “Did you have an accident on your bike?”

“Who told you?” Mathew replied calmly.

“Someone wrote me a letter about it. Were you hurt?”

“Not really.”

“Who else was in the accident?”

“A boy.”

Oh, my God.

“Was he hurt?”

“Probably.”

“Was he bleeding?”

“Pretty much.”

God help me.

“Matthew,” my voice quaking, “did an ambulance come?”

“I give up. I’m done talking about this.”

He resumed painting, at which point I lost it.

“Matthew! I need to know what happened! Where did this happen? Was there anyone there that you know? Did anyone ask you questions?”

Matthew’s lower lip quivered as he tapped his paintbrush nervously on the table. “Am I in trouble?”he whimpered.

I took a breath and said, “No, of course not. You just paint and we’ll talk about this later.”

I hugged him and he choked back a few sobs and continued painting.I went back to my bedroom and called the attorney, my eye on the blue bike in the backyard.

According to the attorney, his client and nine-year-old son were riding bikes at the middle school around the corner. Matthew crashed into the younger boy, stopped for a moment, then fled. The boy broke his leg. Badly. He would be in a wheelchair for six weeks. The family had no medical insurance.

“I understand your son has autism.

My mind raced to the conclusions made by the boy’s family, the attorney, and our community. This thirteen-year-old autistic boy is riding his bike without supervision, collides with and injures a child, and leaves the scene. His parents are negligent. He is a danger to those around him.

“He wants to ride his bike at the playground like any thirteen-year-old. I can’t watch him every second,” I would counter.

But I knew that Matthew couldn’t manage these kinds of situations like most thirteen-year-old boys, so I’d hired after-school helpers to take him for bike rides and other activities. Still,  Matthew was not supervised every second. I tried to keep track of him, but he snuck out regularly.

But this accident had happened weeks ago–How did the attorney get Matthew’s name and address?

“From a neighbor who didn’t want to be identified.”

To this day, I wonder which neighbor it was, and wish I’d been more approachable back then. But I was so overwhelmed, which is why Matthew was riding his bike unsupervised in the first place!

What I didn’t know was that my neighbors were curious about Matthew and about our family. They wanted to know “what the deal was”. They wanted to help (or at least to understand.)

Give your neighbors credit. They, too, might have messy lives. But if they know what you are facing, they’ll do there best to help you. If you don’t feel up to running around the neighborhood and explaining things face to face, start by printing up a little information sheet with some particulars about your child. You can start with this list of the basics:

1) Autism is a neurological disorder; not a disease. It is a broad spectrum disorder, meaning that people with autism can be a little autistic or very autistic. Thus, it is possible to be bright, verbal, and autistic as well as mentally retarded, non-verbal and autistic.

2) All share deficits to some degree in three areas: social interaction, verbal and nonverbal communication, and repetitive behaviors or interests. In addition, many have unusual responses to sensory experiences, such as certain sounds or the way objects look.

3) “They” are not all alike. Individuals with autism have unique challenges, quirks, and interests. People with autism can be hard to figure out. Don’t be afraid to ask their parents or caretakers questions.

4) There is no proven cure for autism-yet. Autism is a lifelong diagnosis. That’s not to say that people with autism don’t improve, because many improve radically with treatment. But even when people with autism increase their skills, they are still autistic, which means they think and perceive differently from most people.

5) No one is sure what causes autism. Theories range from  mercury in infant vaccines(a theory that has been hyped up by celebrities, not scientists who maintain there is NO link)to genetics to the age of the parents to almost everything else. At present, most researchers think autism is caused by a combination of genetic and environmental factors – and it’s quite possible that different people’s symptoms have different causes.

Another great way to educate you neighbor is with THIS video and the following links

What’s it like to have autism?

Autism and the wandering problem

Autism and Law Enforcement

Tribute to nice friends

 

You might keep a few bottles of wine and boxes of chocolate on hand –just in case!

 

Autism FAQ: How do I talk to my son/daughter about sex? a story with tips

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  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 Gerhardt, 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”.

Some of Peter’s 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.

“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.”

***

This story is an excerpt from A REGULAR GUY: GROWING UP WITH AUTISM

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.

Autism, parenting & beyond: 12 FAQ’s answered

 

Dreamy Matthew, age one


Did you know that parents of children with autism like it when you ask them questions about their experience? At least I do. Sometimes we get tongue tied when answering because autism is complicated, and because we are emotional. Here is a list of the 11 most frequent questions that I am asked, along with answers:

1) What is autism, and how severe is Matthew’s case?

Autism is a neurological disorder; not a disease. It is a broad spectrum disorder, meaning it’s possible to be bright, verbal, and autistic, bright non-verbal and autistic as well as intellectually disabled, verbal and autistic…you get the picture. While all individuals with autism are COMPLETELY different from one another, most share deficits to some degree in three areas:

  • social interaction
  • verbal and nonverbal communication
  • repetitive behaviors or interests.

In addition, many have unusual responses to sensory experiences, such as certain sounds or the way objects look. “They” are not all alike. Individuals with autism have unique challenges, quirks, and interests. So it is hard for me to describe where Matthew falls on the autism spectrum. He is honest, friendly, hard working and very funny. He’s frustrated by his inability to figure things out sometimes, and that makes him angry. But he’s learning to keep how to ask for help, and I admire him for that.

2)      How old was Matthew when he was diagnosed?

Matthew was 2 years old when we noticed that he wasn’t talking as much as most toddlers his age. We also worried about his intense interest in lights, gates and drains. Developmental specialists told us he was not autistic, but developmentally delayed. We thought that meant he could catch up. Matthew was not formally diagnosed until he was 5, and by then, we had figured it out. That was many years ago. Developmental specialists are able to detect autism much earlier these days.

3) How did you handle the diagnosis?

I was sad and scared, but determined to “turn things around”. We tried every kind of therapy, even those that seemed whacky. I wish I’d known someone like the future me to  to turn to for reassurance and support. Parents now have tremendous resources-one of my favorites is THE THINKING PERSON’S GUIDE TO AUTISM.

4)      What do you think causes autism?

I’m on the side of science, and at present, most researchers think autism is caused by a combination of genetic and environmental factors – and it’s quite possible that different people’s symptoms have different causes.

5)     Is there a cure for autism?

Autism is a lifelong diagnosis, but it is treatable.

6)      How has having a brother with autism affected Matthew’s brothers                                  Andy and John?

It was especially hard for Andy, who was just two years younger than Matthew, for many years. The  two played a lot when they were babies, and then Matthew withdrew. Andy was also teased about Matthew’s peculiar behavior. John, who is 7 years younger than Matthew,   was never at the same school as Matthew, but home life was chaotic to be sure. Andy is now 24, and John is 19. They are great with Matthew, and are more tolerant than most of the differences in others.

7)      I hear that 80% of couples with a child with autism get divorced. How do you stay married?

I’m not sure anyone really knows the real statistics, but HERE is how I stay married.

8)      How do you handle the stress?

It is a challenge. Best thing I ever did you manage the stress was to talk to a therapist.Finding helpers is also crucial. It’s very important for everyone in your family that you take care of yourself.

9)      How in the world did you learn to be so patient?

I believe that everyone has more patience and they find it when they are tested!

10)      Do you worry about what will happen to Matthew when you die?

Yes, but I have made plans,(more about that later) and you can too. Start by reading the Autism Speaks Transition Tookit.

11)      One piece of advice for parents of a newly diagnosed child?

Reach out to parents who have been in your shoes. They can help you. My hand is raised!

12)        What is one thing you wish you knew during the challenging times that you know now?

I need to mention three things:

a)  Try to remember how hard it is for your child to adapt to the “regular” world.

b) It get’s better. I enjoy Matthew so much.

c) When you come across people who stare, or snicker, or worse, realize that they just don’t understand what you are dealing with. I’ve learned that it is better to show them how you relate to your child rather than tell them off. One of my most unforgettable moments was at the Oakland Airport Baggage claim after a long and meltdown rich flight with Matthew, who was a teenager at the time. A man that I thought had been staring at us disapprovingly all day tapped me on the shoulder and said ” I’ve been watching you in action today, and you have taught me a lot. Thank you.”

 

Matthew as a young man.

***

COMING SOON: FAQ about autism and employment.

Read the first three chapters of A REGULAR GUY: GROWING UP WITH AUTISM here.

You’ll be hooked. (It makes a great holiday gift-really!)

 

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.

 

 

 

 

 

 

Autism and siblings helping siblings: John’s story

An excerpt from A REGULAR GUY: GROWING UP WITH AUTISM

“John’s had kind of a tough day,” said the phone message from his second grade teacher, “Some kids were teasing him about Matthew. Thought you might like to know.”

Damn it, I knew this would happen.

The Saturday before, John had a soccer game. Peter was out of town, and the helper I had scheduled to watch Matthew was sick, so I had no choice but to take Matthew with us to the game.

“John, Chad can’t watch Matthew today. Do you mind if he comes to watch your game?”

“No, I don’t mind. Are you snack lady? Will you bring doughnuts?”

When I looked at John, I still saw a wide-eyed baby with the sunny personality that matched the golden peach fuzz on his head. At seven, he was still a cheerful blond with a generous spirit, and he was growing into the biggest and sturdiest of my three boys.

Like many third children, John spent a lot of time observing the world from his car seat in the minivan, riding with his brothers to and from school, soccer, and doctors’ appointments. Before he learned to walk, he laughed from his bouncy seat as he watched his brothers run through the sprinklers, ride bikes, and build tall towers with blocks, only to knock them down. Matthew and Andy’s favorite activity was putting John in the bed of a large Tonka truck and launching him down the carpeted hall. John smiled and laughed through it all while I prepared nervously, but happily, to avert crash landings.

When John was five, he asked why Matthew went to a different school on a yellow school bus, and why he jumped and flapped his hands and laughed at strange things. By the age of six, he felt badly for Matthew because he didn’t have any friends. Lately John had been bothered by Matthew’s impulsive actions—throwing toys over the fence, running from one room to another just to strike him or Andy, disrupting happy family time by turning over a game board or dropping the dice down the heater vent.

During John’s soccer game, Matthew sat quietly at first on the grass near the goal post, but then the sound of an airplane brought him to his feet, and he jumped and flapped his hands, as a bead of spittle ran down the corner of his mouth. I saw a few of the soccer players on the sidelines exchanging glances and snickering. I searched for John, who was playing goalie.

Good, he’s oblivious.

Then one of the boys started to imitate Matthew, generating gales of laughter from his buddies, until his mother saw what was going on and sternly grabbed her son by the arm. Thank you, I told her, my heart beating, my eyes darting back and forth between John and Matthew. Both seemed unaware of the taunting.

Then it was halftime.

The seven-year-old players bunched together for orange slices and a pep talk from the coach. I noticed a few of the boys saying something to John, who said something in response at which the boys burst into laughter. John smiled, the whistle blew, and the game continued. Matthew spent the rest of the game swinging high on a swing nearby. I could relax.

When the game was over, I couldn’t throw doughnuts and juice boxes to the boys fast enough.

“John! Matthew! Time to go!”

I was heaving the picked-over doughnuts into the trashcan when the Team Mom thanked me for bringing snacks.

“Will you offer something a little more healthy next time?”

It’s not my style to tell people where to shove their granola bars, so I just said “Sure” and left.

John seemed fine as we were driving back. I waited until we got home to ask him privately what he and the boys were laughing about at halftime.

“They said Matthew was crazy, and I said, ‘Well, you know what they say about teenagers.’ But Mom, can I invite a friend over?”

Mr. Turner had left the message at lunchtime. It was now 1:30. I pulled into the parking lot of John’s school at 1:42 and dashed to room 4, peeking into the classroom. When John saw me, he flew from his seat and into my arms.

Mr. Turner motioned to me that he would call me later, as John ran to me, his lower lip trembling and his chest heaving. I thought I would have the right words when this time came but I was at a loss. His sobbing finally ended with a heavy sigh, and I asked him what had happened.

“They were jumping up and down and shaking their hands all around at recess and they were laughing. What does ‘retard’ mean?” John asked, his eyes searching for the sanctuary of our gray minivan.

“It’s a mean way of saying someone is—different, that their brain works differently,” I answered.

Those little sons of bitches.

“They said Matthew was a retard,” John cried incredulously.

“Awww, let’s go home. Andy will be home soon and we can all go out for ice cream.”

“What about Matthew?”

“Chad is picking him up from school today. They’re going to play basketball.”

“Maybe we can bring some ice cream home for him,” he said, wiping his eyes on my sleeve. “Why are you crying, Mom?”

“Because you are so nice.”

Sometimes the best view is from the rearview mirror of a minivan. On the way to the ice cream parlor, Andy and John shared Matthew stories and strategies, with our black lab Katie sitting sympathetically between them, her eyebrows alternating up and down as they talked and laughed. Not all of their conversation focused on what to do when people said things about Matthew. There was a lot of healthy venting, and I let the comments fly. But soon enough, they were back to sharing Matthew stories affectionately.

“Remember the time he asked the dwarf if he was a boy or a man?”

“Yeah! That guy got really mad!”

“How about the time Mom’s friend came over, and Matthew asked her when she was going to leave?”

“Wait, wait! What about the time he asked Mr. Harris how old he was, and when he said he was eighty-six, Matthew said, ‘So you’ll be dying soon.’”

John and Andy shook the car with their laughter, and Katie seemed to be smiling along with their joy. Why couldn’t I laugh with them?

“The poor kid,” said Andy, wiping the tears of laughter on his sweatshirt. At twelve, he sounded like a sage old man who had already traveled down a difficult path.

“Yeah. Poor Matthew,” John said, as we pulled up to the ice cream parlor. He raced in to survey the tubs of ice cream behind the glass.

“Look,” he said, “they have Matthew’s favorite, bubblegum ice cream! Can we get some for him, Mom?”

The view from my rearview mirror changed on the way home. The afternoon sun fell gently on Andy’s light-brown hair as he looked quietly out the window, and John cradled our dog Katie’s head in his lap, stroking it tenderly. A bond had been strengthened in the wake of heartbreak and hurt feelings. Brothers came together in laughter and in sorrow, and they were left feeling the weight of their family’s bittersweet burden. But would they hold each other up in the years before them? Would they have the strength to hold Matthew up and guide him when we were gone?

The bubblegum ice cream had melted slightly by the time we rolled into the driveway at home. As Chad and Matthew pulled up beside us, I got the feeling that something was up.

“We got you bubblegum ice cream, Matthew!” said John, holding out the dripping mess proudly.

“I’ll eat it later, OK?” Matthew shot back. “I’m in a bad mood!” He stomped into the house and slammed the door.

John, Andy, and I paused for a moment and then burst out laughing.

“Well John, you tried,” Andy laughed.

The boys followed Matthew into the house, and I stood outside for a moment and took a breath.

Don’t worry, John. Matthew will remember.