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.

 

 

 

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

 

 

 

 

 

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.

 

 

 

 

Hi friends: I am reposting this one by popular demand, and have updated it some.

Enjoy!

***

“Mom?” Matthew asked, “Where is the closest airport?”

“Oakland,” I answered with a sigh.

“Where is the next airport?”

“San Francisco. Then San Jose, Morgan Hill…”

“Stop!” Matthew wailed,”I need to ask you first.”

Matthew was 10 years old, and his obsession with airports was wearing me out. I was only allowed to stop answering him when the phone or the doorbell interrupted us.

He was stuck.

Looking back, I believe that Matthew wasn’t intentionally trying to drive me (and everybody else) crazy. I think he was trying to connect, and his fascination with airplanes and airports was the only way he knew how.

I asked parents and teachers on my facebook autism forum offer their tips:

How can we help our kids get “unstuck”?

 

1) VISUAL IMAGES

When one of my students gets stuck on a particular topic, especially one that is scaring her, we print out a picture from Google images and then tear it up. That gets the thought out of her head.

 

Jessica Roe

2)REDIRECTION

I usually say, “Is this a big deal or a little deal?” and she usually says, “a little deal” – then I say, “If it’s a little deal then we’re not going to worry about it” – then, of course, redirection and bribing if needed.

 

Tracy Donohue

I usually just engage him a bit in what he wants to talk about. I don’t want to cut him off and have him feel what he has to say, whatever the subject, isn’t worthy of being heard. Then, once I know he’s told me everything I just change the subject to different things.

Kris Scalaro

3) TALK IT THROUGH

 

Redirection never works with my son. I use this formula:

1.acknowledge the issue

2.parallel yourself somehow, let your child know of an instance when something similar took hold of your thoughts

3. confirm that the issue will be resolved.

This actually works with ANY situation and anybody, but when I started really doing this with my son, it helped him instantly. It was like a light bulb went off in both of us. Keep following 1, 2, 3 until your child gets unstuck.

 

Linda Pasqualone Francese

4) SET LIMITS

 

Stuck on a conversation topic (many times a day here): “one more sentence and then I’ll listen to more when done with homework, but now it’s time to do this other thing. Write a note in a notebook if it helps to remember.” I listen intently to that one sentence. It gets the pressing subject out of his head, gives comfort that his conversations are important, and sometimes he forgets to get back to it!

I ask questions when he returns to the subject to get him more into conversational speech rather than just dictating facts. I listen intently and keep my promise to do so. (not always easy!)

 

Karri Gunnerson Jose

5)SET A TIMER

I’ve had very little success in stopping an obsessive train of thought once it starts! Now, I typically set a timer and say, “I will listen/talk about this for x minutes, then I’m done.” Once the timer rings I just keep repeating “I’m not talking about this anymore with you now”. Which 7 out of 10 times results in a meltdown–then I move on to meltdown strategies.

Lee Anne Klopp Owens

6) JOIN IN

Try joining him and sharing ideas. Adapt your pacing/timing and affect to connect. I find most kids tend to get “stuck” due to a breakdown in comprehension and/or motor planning. Emotions also drive their ability to work through these moments. Maybe modeling the task he is doing and carefully expanding would also be helpful.

Sarah Weiler

 

I’d love to hear from you. How do you help your child get “unstuck”?

______

Read the first three chapters of my book HERE.

You’ll be hooked

Available at your local library or HERE.

 

 

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!

 

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

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.

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.

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.

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.

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.

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.

 

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.”

 

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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!)

 

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

 

 

 

 

 

 

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.

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

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

ORDER NOW before the rush.

On Huffington Post Parents. CLICK HERE to read!