About Laura Shumaker

Hello! I’m Laura Shumaker, the author of  A Regular Guy: Growing Up With Autism.

I am in the midst of redesigning my website, but in the meantime, read Laura Shumaker 101:

I’m a write, editor, content strategist (read more on LinkedIn.)

I’m the mother of THREE terrific sons. The oldest, Matthew, is a young adult with autism. I’m an optimistic mother/autism advocate/writer, and parents like me because I tell them it gets easier and I mean it. I write an autism blog for the San Francisco Chronicle that is very popular.

I advise parents  about all ages and stages of parenting a child with autism and assorted developmental disabilities, (based not only on my experience, but by my coverage of these topics on my blog, especially the teen and young adult years. I give a  entertaining talks that lift spirits. I recently had a fit of the giggles while onstage with Marianne Williamson and she was so nice about it.

New to my site?

Writing:

I’ve contributed to several anthologies, including Voices of Autism, A Cup of Comfort for Parents of Children with Special Needs, Writin’ on EmptyGravity Pulls You InWritin’ on EmptyEasy to Love, Hard to Raise the Thinking Person’s Guide to Autism and the forthcoming Chicken Soup for the Soul: Raising Kids on the Spectrum: 101 Inspirational Stories for Parents of Children with Autism and Asperger’s.

 

 My  essays have appeared in many places, including The New York Times, the San Francisco Chronicle, the Contra Costa TimesLiterary Mama, the East Bay MonthlyThe Autism Advocate, on NPR and CNN.COM.

I live in Lafayette, California with my husband Peter and my sons,(who are now adults) when they are in town. I have a black lab and a white lab that I photograph more than I photograph my children. They shed a lot.

Visit me on FacebookTwitterLinked In. Need Advice? Request a call.

I’ll be back with a beautiful and useful website soon!

Laura

 

Disabled Enough for SSI?

Can you imagine having to prove that you are “disabled enough” to a person you’ve never met?

This is what many of our kids need to do when they turn 18, and are eligible for social security benefits.

 

Matthew as a young man.

Matthew as a young man.

The following is the story of the day I took Matthew for his appointment:

 

KQEDfor KQED Perspectives, follow this link.

To learn more about other milestones for adults with developmental disabilities, read the following:

 

Conservatorship : Laura Shumaker

Proving You’re a Good Parent: Liane Carter, New York Times Motherlode Blog

Turning 22: What I’ve Learned So Far: Susan Senator

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Read Laura’s book, available in paper and Kindle.

 

 

 

 

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

 

 

 

 

 

 

“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.

Staying married, autism parent-style

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

A teary eyed young woman raised her hand.

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

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

Click here for results

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

We are nice to each other.

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

1) When it’s a bad day, and the kids are sick and I’m stuck at home all day and am STIR CRAZY, I resist the urge to say “YOUR TURN!” and race out the door the second my husband gets home. We hug and kiss and I smile at him(even if I have to force it). I wait about a minute and then say “I’m going nuts. I think I’ll go to the book store for a little bit. Is that OK?” When I get home, the kids are bathed and in their jammies. Isn’t that nice?

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

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

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

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

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

What are your secrets for a long and happy marriage?

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

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Need a great summer book that will inspire you?

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

 

Preparing schools for the “new” definition of autism

You have heard the news, and if you are a parent of a child with high functioning autism or Asperger’s Syndrome, you are worried!

By May 2013, an autism diagnosis will likely be much harder to obtain than in the past.  The American Psychiatric Association is making final revisions to its Diagnostic and Statistical  Manual of Mental Disorders, including drastic changes to the criteria by which individuals are diagnosed with autism.

While these changes will have less impact on those diagnosed with “classic autism,” people who are currently diagnosed with Asperger’s Syndrome, a high-functioning form of autism, likely won’t  be diagnosed under the new, stricter guidelines.  In fact, the proposed new guidelines would eliminate the Asperger’s classification completely.

What does this mean for those currently diagnosed with Asperger’s?

According to a recent study by Yale University, less than half of patients currently diagnosed with Asperger’s Syndrome will receive an autism diagnosis under the proposed new guidelines.  Without that diagnosis, they will no longer have access to the therapies or educational resources neccesary to help them learn to interact and grow into socially adjusted adults.

I asked Mark Claypool,  a fellow optimist who I turned to for reassurance, to talk about these changes might affect our kids. Mark president and CEO of Spectrum Center Schools and Programs, an organization that provides academic programs, life skills training, vocational and transition services, support services and collaborative classrooms to students with autism, emotional disturbance, physical challenges and developmental delays:

Laura: My son has autism, but has never been considered “high-functioning”. Friends with children with Asperger’s Syndrome and HFA tell me how lucky I am–that it is easier fro me to get services for my son.What is your take on this issue?

Mark Claypool: It’s a frustrating problem for parents. Kids are getting caught in-between and every day that goes by for a child not getting the services that they need is a lost day.

Laura: I know parents of children with unspecified learning differences and behavior problems that have pushed for a diagnosis of autism just to get services. What has been your experience?

Mark Claypool: No parent wants their child to be misdiagnosed with a disability, no matter how badly they want the services. Perhaps the revised Diagnostic and Statistical  Manual of Mental Disorders will help us refocus on the needs of a child as an individual and not a label.

Laura: California and many other states now mandate insurance coverage for children on the autism spectrum for ABA. Doesn’t that lighten the load and responsibility of school districts?

Mark Claypool: Ideally, but right now, the schools are pointing at the insurance companies and the insurance companies are pointing at the schools. “Aren’t you going to do that?”

Laura: The most rewarding aspect of your job?

Mark Claypool:

  1. Making public schools work for children with disabilities
  2. Working with school districts to help them design services for children that need them
  3. Including  children with disabilities and keeping them at their home schools, rather than sending them to non-public schools.
Amen!
 Spectrum Center Schools and Programs, is an organization that provides academic programs, life skills training, vocational and transition services, support services and collaborative classrooms to students with autism, emotional disturbance, physical challenges and developmental delays. Spectrum Center partners with nearly 100 public school districts to help them educate students who have autism, Asperger’s Syndrome and other conditions. 

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A REGULAR GUY: GROWING UP WITH AUTISM is a perfect teachers gift!

Order a copy HERE.

 

Autism Q&A: Does it get easier as our children age?

I spoke at a conference recently where a number of parents with young children with developmental disabilities attended.

“What is one thing you would tell parents of a newly diagnosed child?” was the final question during the Q&A period, and it’s one that I am asked frequently.

“It gets better,” I said, “It really does.”

A young (exhausted looking) woman in her thirties came up to me after and asked me what “It gets better” means.

Today I celebrate Matthew’s 26th birthday, and am reflecting on what “It gets better” means:

1)   I enjoy being with Matthew. Whether it is the years of therapy and intervention or just plain maturity, he easier to communicate with, and has a good sense of what is socially appropriate and what is not. He still needs a fair amount of reinforcement, but in time I suspect he’ll need less and less.

2)   I have matured. I no longer worry about being judged, or about being stared at, and I’ve learned not to be offended when I am judged or stared at.  I get that my son’s behavior can be stare worthy, and that people are curious.

3)   I love that my two younger sons think it kind of cool to have a brother with autism. “It keeps me grounded,” my 19 year old son, John, told me recently. “I’m more patient than most guys my age.”

4)   I love it that Matthew counts on me less, and on my husband more. If you have a child with autism, you know what I mean!

5)   I’ve learned that not every problem is solvable, and that I have to accept that. But I’ve also learned that there are  obstacles that can be overcome –creatively.

6)   I’ve learned that Matthew is WAY more capable than I ever dreamed he would be.

7)   I admire Matthew so much. There are times when he is lonely, upset, or frustrated, and instead of lashing out, he sits with his feelings and then rebounds with a joke, or an idea, or a plan.

8)   I am so touched  that when he calls home, and my husband answers, Matthew says, “I’d like to talk to my mother.”

So HAPPY Birthday, Matthew! Your mother loves you.

 

My mom with newborn Matthew

Why autism moms act the way they do

I ran into a friend at the dog park this morning and she asked me if I was “OK”.

“When I saw you last week, you looked like you were on the verge of tears.”

What was going on that day? Oh yeah…

 

Autism mom (me) holding it together--for nowAutism mom (me)holding it together but about to snap

Why to we act the way we do?

Here are just some behaviors you may see in moms like me and what they could mean:

1) We cry spontaneously for what appear to be weird reasons. Our specialty is crying in public and at IEP meetings, and let me tell you, it is not pretty.

Cashier at 7/11: “May I help you?”

Autism Mom: sniff, sniff, sob…”I’m not sure.Thank you for asking. I’m just feeling emotional right now.”

Why do we behave this way?

a)We aren’t sleeping

b)Our already busy and emotionally intense days are punctuated with phone calls that catch us off guard and hurt our feelings.

c)Our child does something amazing or really funny, we tell a friend and it is clear they don’t get why it’s such a big deal. We hold it together until the nice cashier at 7/11 say’s “May I help you?”

2) We join a book club. We think it’s a good idea to do something intellectually and socially stimulating,and then we never show up.

Why?

a) Evenings are hard. Our kids need us. We are drained.

b) We did not read the book and worry that we’ll say stupid things just to sound smart.

c) We are nervous about hosting book club at our house.

3) We are socially awkward. We didn’t used to be, but now we blurt out bold statements like “Hysterectomy? I had mine vaginally. What about you?” (or worse “has your wife had one yet? “)

Why do we behave this way?

a) We are immersed in the world of quirky kids. We’re out of practice.

b) We’re tired

c) We feel so lucky to be invited places that we are manic.

4) We become hostile when family, friends (and especially husbands) ask us “What did you do today?”

Why do we behave this way?

a) We don’t like the tone of the question (and there is no right tone)

b) We know in our hearts that we did the best we could today-how do you express that?

c)Let’s face it — no one likes that question!

5) As we age, lose interest in gossip because:

 

a) We know how it feels to be whispered about

b) We learn that everyone has a story

c) We know how it feels to be whispered about.

 

God bless us, and God bless our kids!

***

Have you read Laura’s book? It’s great. Read the first three chapters HERE and order it HERE.

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The Golden Hat Foundation: Kate Winslet Talks Back to Autism

I pulled into the parking lot of my 25 year old son’s home near Santa Cruz, California, where he was waiting impatiently.

Matthew has autism and lives at Camphill  California, a community for individuals with intellectual disabilities.  I was picking him for his routine first-weekend -of –the-month visit home an hour north near San Francisco.

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

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

It is a draining conversation to maintain, but one I know I am so lucky have.  So many of my friends have children who are non-verbal; they would give anything  to have the kind of interaction I have with Matthew.

The Golden Hat Foundation

I was reminded of this when I learned about a new documentary,  narrated by Kate Winslet “A Mother’s Courage: Talking Back to Autism,” about a young nonverbal Icelandic boy named Keli. Kate was moved by the efforts of Keli’s mom, Margret Ericsdottir, to find a way for her son to learn to communicate. “I simply couldn’t conceive of how devastating it would be,”Kate said, “not to be able to hear my children’s voices.”

Kate and Margret bonded through the production of the documentary, and brainstormed ways to help children like Keli and The Golden Hat Foundation was born.

I learned about the Golden Hat Foundation when I was invited to take part in a luncheon with other (amazing) autism advocates and bloggers at the offices of Ladies Home Journal. (I joined by phone, along with esteemed West Coast advocates Shannon des Roches Rosa,Jennifer Byde Myers and Chantal Kira Sicile.) Kate Winslet is on the cover of this months Ladies Home Journal, which was just redesigned and looks fantastic inside and out.

The Golden Hat Foundation is a non-profit organization dedicated to eliminating barriers for people with autism around the world, and creating an environment that holds these individuals as intellectually capable.

The mission of the Golden Hat Foundation is the establishment of innovative campuses that offer people with autism the opportunity to learn to communicate effectively, receive an education, job training and enjoy recreational activities, all within a supportive social network.

Kate Winslet has given the Golden Hat Foundation an inspiring head start with , “The Golden Hat: Talking Back to Autism,” a book that weaves together  the story of Margret and Keli, their  friendship with Kate and photographs of well known celebrities self portraits wearing Kate’s hat.

“Put the hat on your head and think about how much we takes communication for granted,” she told them. “How would you communicate who you are in a quote? What would the words be? Express something that’s important to you.”

One of  my favorite quote came from Justin Timberlake–”In life, try on as many hats as you can. You might actually find one that fits.”

The list of 100 photographs also includes Meryl StreepLeonardo DiCaprio, ElijahWoodTom Hanks, and Conan O’Brien. All proceeds from this book will benefit the Golden Hat Foundation.

If you’d like to support the Golden Hat Foundation, click here. I think it is a *really* good idea that parents support initiatives like this as early as possible. The future is not as far away as you think!

You can pre-order the book here.

WHAT WOULD YOUR QUOTE BE?

I want to know.

Mine would be ” I am grateful to be a mother.”

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

You’ll be hooked

 

 

 

Dating, With Autism–New York Times

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