Spread the word to end the R-Word

The R-word is the word ‘retard(ed)’. Why does it hurt? The R-word hurts because it is exclusive. It’s offensive. It’s derogatory.

The “Spread the word to end the R-word campaign” asks people to pledge to stop saying the R-word as a starting point toward creating more accepting attitudes and communities for all people. Language affects attitudes and attitudes affect actions. Pledge today to use respectful, people-first language.

Will you pledge your support?

Click Here

My story:

Matthew is a huge Beatles fan and asked me if we could go to the music store to buy a Revolver CD. He was wearing plaid shorts, a different patterned plaid shirt, white socks and work boots.

“You might want to change your shirt,” I said. “Your plaid shorts would look even better with a plain shirt.”

“I look good,” he replied, “and we’re not going to talk about it anymore.”

When we entered the store, Matthew saw an entire rack dedicated to Beatles music, and ran over to it exuberantly, bumping into another customer-hard.

He apologized profusely as the customer shook his head.

“What are you,” the customer yelled “a retard or something?”

“I give up,” Matthew replied passively.

I guided Matthew to the cash register, careful not to make eye contact with the irate customer. Matthew has always been socially awkward, and while I’m well practiced at unfortunate public scenes like these, they still upset me. I was grateful that at least this time, Matthew seemed oblivious to the conflict.

As we drove away with his music, I convinced myself that Matthew didn’t know that the guy at the music store had insulted him. I shared the story my family, and they laughed.

“Thank God he didn’t get it,” they said.

But when I put my head on my pillow later that night, I knew that on some level Matthew did get it. God only knows how many times he has heard the “R” word.

I thought back to the time when I was a teenager, and I laughed at a weird boy at summer camp who was walking funny, rocking and flapping his hands. The boy’s brother, who was also at the camp, saw me laughing and glared at me, deeply hurt.

I’ll never forget it.

I’ll bet that as soon as that guy at the music store blurted out that awful phrase, he realized that the woman with Matthew was his mother. He would have apologized if he had the chance.

I’ve already forgiven him.

***

What is you story?

 

Autism FAQ for seasoned autism dads: Advice for new dads?

dad

I asked, and did I ever get insightful answers:

Don’t blame yourself or anyone else for your child’s autism. Love and support them in their dreams, interests and aspirations…because they have them. Don’t ever be ashamed of them…even if they are 15 years old, 200 pounds of man/boy be proud when they slip their hand in yours as you enter a public place. Grow to love the unique way they think. And realize their is a special genius inside of each one of them that will blossom if their Dad cultivates it.

Craig Curtis

Man up. Be a dad, not just a father. Take your child out into the world, take them to a fenced in play ground every day you get home from work for an hour, bring a book, sit your ass down and pretend you’re reading.  Take your child to a science center, to a farmers market, to church, to football games. They are children and they model you, they do it differently but they do it, so do things with them. Put their toys away when they go to sleep in an organized fashion, line them, stage them in social settings, do it every night. Get time for yourself, and time for your marriage.

Don’t turn over all control to your wife or the child’s mother, she will soon burn out and resent you. If she can’t give up control suggest that she get therapy. Don’t assume that the schools will educate your child, seek outside tutors and programs. If you are the sole financial support for the family or the primary one, go to work, do your job, you are no good to your kid unemployed, if you think it’s too much, man up. It is too much do it anyway, it will get better, there is cake.

If your child is prone to physical tantrums, flailing about and such. Learn how to do a seated restraining hold with your child’s arms arris crossed across their chest and seated in your lap with your legs crossed in with theirs. Hold them until the stop freaking out, until it become an embrace which it will and it may take over an hour some times but it will end in love and not frustration (Dr. Maltz, the first advice and best advice I was ever given) .  Love your child. I have 2 with autism, I was divorced from their mom and received custody of them. They are doing great, both 15 yo very independent, playing sports, interested in friends, and just wonderful people.

Don Sutton

Accept your kids for who they are. Encourage them to be themselves, don’t force them to be someone they are not.

Ron Junk

I have to keep reminding myself of the poem Welcome to Holland. I looked forward to baseball games and Cub Scouts. But we do elevator rides and take tours of the bus barn. Things that he’s interested in. You have to change your expectations and just roll with it.

Jason Wiederstein

Love them the way any child deserves.

Chip McInnis

Go with your gut, it’s never wrong and mostly right. Don’t be afraid to cry, it’ll happen often and it helps. Stop asking “why him?” and start asking “what can i do?”. Whats right for that kid with autism isn’t necessarily right for mine. There are lots of people who want to help, and very few who know how, so figure out who they are and accept their help. Whatever the unsolvable problem/behavior is today… It’ll be gone next year and replaced by another one. And….
Make alone time for you and your partner.

Alex Harris

The child you walked into the DX appointment with is the same one you walked out with. A word does not change your love and commitment to that child.

John Horton

Treat them like the others with patience n understanding.Life will fill in the voids.

Jim Odwyer

Be strong in your love, slow to anger, patient in your prayers..your child is also a child of God.

Jim Harvey Jr.

Love them unconditionally. Allow them to grow. And try to keep up.

Charles Hicks

I know how busy us “autism parents” are, but it is critical to take the time to nuture your relationship with your partner.  Communication is key.  Be on the same page about your plan for your child.  If needed, assign tasks.  Autism can make a couple stronger or it can tear them apart.
There are many support groups out there for parents of children with autism.  Find one that speaks to your approach to your childs condition.  They can guide you to resources that may help you along your journey.

Michael Giammatteo

***

Thank you, dads!

Please keep sharing …

New dads, please keep asking.

 

 

 

 

 

Remembering “before” autism

Do you remember the days before your child’s autism diagnosis? This is my story. When I read it, I don’t think “Oh, how sad, little did I know.” Instead, I think “Gosh, I miss my mom.”

An excerpt from A Regular Guy: Growing Up With Autism

Mom  and I sat in the dining room table while Matthew napped, narrowing down responses to the ad I had placed in the paper.

“Wanted: Loving care for my three-month-old son, two days a week.”

We set up appointments for three respondents that afternoon, and two the next. “I hope you don’t mind,” said mom, “but I really want to see these women myself. I’m a good judge of character.”

Mom with newborn Matthew

Mom with newborn Matthew

She was a good judge of character, but I knew she had another motive. She had offered to take care of Matthew while I worked, but it would mean an hour’s drive two mornings and afternoons a week, and I worried that the commitment would be too much for her. I also worried that it would put a strain on our relationship.

“If I can’t watch him while you’re working, I’ll be worrying about him, so I might as well,” she argued, “and I’ll love every minute of it.”

“Let’s just see who’s out there,” I said. “You never know.”

But one by one Mom eliminated all of the candidates, some for obvious reasons—lack of personality and experience—and others for not-so-obvious reasons.

“Did you see her nails? Do you think a woman with perfect nails cares about anyone more than herself?” or “Behind that big smile is a mean woman.”

In the end, I relented and accepted her offer, but just for one day a week. The other day, I arranged for Matthew to stay with a mom in the neighborhood who had a son his age and a three-year-old daughter.

“But guess who she’ll go to first if they all need her at once,” Mom warned. “It won’t be Matthew.”

As always, Mom softened her barbs with good humor and encouragement. “Just think how fun it will be for me. Just think how much fun it will be for you when Matthew has children of his own!” and “It’s good for you to work a little bit. Be sure to keep some of the money you make just for yourself.”

Peter and I agreed that the best thing about working was coming home to Matthew. His whole body wiggled with joy when he saw us, and his smiles and gurgly laughter were contagious. In the evenings we took walks with him, first in the Snuggli, then in the stroller and the backpack. We smiled proudly when passersby gasped, “What a beautiful baby!” Once home, after we bathed Matthew and put him to bed, we poured through our baby book and compared their estimates of developmental milestones with his.

“They say ‘sits up by the end of month four.’ He was doing that by the end of month three!” I told Peter.

“It looks like he should be rolling over soon,” said Peter, turning the pages, “and then peek-a-boo the next month. Let’s try it now. . . . And then in month eight—”

With each month that passed, Matthew’s personality sparkled brighter—sunny like the blond hair that stood straight up, impish like his dimply smile, cuddly and warm like his beautiful brown eyes.

We were in love.

***

I will not tell you the moral of this story…you know it already.

To read more of my story, click here to order my book. Great gift in case there are any holidays or birthdays coming.

 

Autism and Empathy

I had just arrived home after one of saddest errands or my life, euthanizing our three year old Labrador Buddy, when the phone rang. I let it go as I was sobbing, and couldn’t stop.

Buddy

The phone rang again. It had to be Matthew, who is 27 and has autism. I took a deep, cleansing sigh and answered.

“I tried calling you a minute ago, but you didn’t answer,” he said sternly.”Have you been to Ohio?”

“I’ve never been to Ohio, Matthew,” I said, ” but can we talk about Ohio later? I have some sad news. You know Buddy’s been sick with cancer. I took him tot the vet’s office today. Buddy was in a lot of pain so the vet gave him a shot that made his heart stop.”

“That’s what happens with dogs sometimes,” Matthew said. “They get sick and die. Besides, I didn’t like Buddy. He always barked at me and my weed whacker.”

More about Buddy and Matthew HERE.

“But you know I loved him,” I said, tears flowing so freely that Matthew could hear them in my voice. “So maybe now is not the best time to tell me that you didn’t like him.”

“You don’t have to snap at me,” Matthew said, “I just called to ask about Ohio. It’s not my fault that Buddy died.”

I ended the phone call as calmly as I could.

“Tell you what, lets talk again tomorrow,” I said, “I love you but I need to be quiet for a little while.”

“Can we talk about Ohio tomorrow?” he persisted.

I hung up and sighed. I knew that Matthew couldn’t fake empathy,  but his timing, and his insistence, wore me out.

***

The phone rang the next morning at 7:00 am, just as I was about to take our surviving (and grieving) dog Callie for a walk.

It was Matthew.

“Hi Mom. How are you doing after yesterday?” he asked quietly, “Are you still sad? It’s very hard for me when you are sad.”

I told him I was still sad, but that hearing his voice made me feel so much better. I thanked him.

“Your welcome,” he said. “We’re not even going to talk about Ohio until tomorrow.”

***

I recommend the following posts that explore the topic of autism and empathy:

Autism and Empathy, Liane Kupferberg Carter

Autism, Empathy and the Sally-Anne Test

 

 

***

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

You’ll be hooked.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Driving with Autism…maybe

A reader recently asked how I dealt with the “driving issue”, specifically when a teen with autism wants to drive but likely shouldn’t.

I cringed at the memory of hiding car keys while Matthew was going through this stage. After  a series of harrowing experiences, Matthew concluded that he should not get a drivers license, but he enjoys driving with his dad in our church parking lot.

driving

Some of Matthew’s higher functioning peers, however, are driving.

I posted the question on my Facebook autism forum. Here are just a few helpful–and eye-opening–replies:

My son wanted to take Driver’s Ed in high school, but I told him he wasn’t ready. I told him the reasons WHY he wasn’t ready: he gets upset when unexpected things happen, he daydreams, he wants to do things his own way, etc. Whenever one of those behaviors came up I would say, “This is why you may not be able to drive.” and it was an incentive for him to keep a watch on his behavior. He definitely was too immature to drive in high school, but the more we talked about these behaviors, the more he worked on them, and was determined to drive. I took him to a Driver’s Rehab program which a state grant paid for, and he was evaluated by an Occupational Therapist who is also a certified Driving Instructor, because I want a professional opinion. She said there was no reason why he couldn’t learn how to drive, and so he did! He was in that program for a couple of years, and has now been a licensed driver for a year and half, and has his own car. I must say, he is a calmer person when he is driving, because he takes it seriously, and knows the responsiblity is on him. He turns 25 this year, so it took a little longer, but it was worth the wait.

I didn’t think my son should at first, but after MUCH practice with him, he ended up with his license. He’s been driving now for almost three years. As parents this is very difficult, but the more independence an individual has, the better their future.

I am 35 w/ Autism. I have a license and can actually drive many types of farm implements as well. My light sensitivity and slowly increasing flails have kept me benched for a few years, as it is becoming a hazard for myself and others. I may not return to driving again, but enjoyed the experience while it lasted.

What has your experience been with the “driving issue”?

Some interesting articles about driving with an ASD:

The Challenge of Driving with Aspergers

Should Teens with Autism Drive?

Shifting Gears on Drivers Education

 

 

A Kitchen Classroom for Children with Autism

It’s a brand new school year, and if you are  the parent of a child on the autism spectrum(and anything like me), and constantly on the lookout for ways to spark communication, connection and learning, your answer might be in the kitchen. Gabrielle Kaplan-Mayer,  the author of The Kitchen Classroom: 32 Visual GF/CF Recipes to Boost Developmental Skills, shares her story in this awesome guest post:

Cooking with autism

Gabrielle Kaplan-Mayer cooking with George

 

My son George, 10, who is on the spectrum, started cooking with me when he was four years old.Our cognitive-behavioral therapist suggested it as an activity that could help us with back and forth communication and could focus George’s attention, which at that time only stayed engaged in any activity besides putting together puzzles for a minute or so. George took naturally to cooking~the multi-sensory experience of dumping ingredients, smelling extracts and spices and tasting something yummy at the end were very motivating for him.

Over the years, George has developed in his abilities to focus and attend to tasks and cooking has been a way for us to work on the many developmental skills in which he needs support. With encouragement from friends and family who noticed Georges progress, I started giving classes to other children on the spectrum and developed a children’s cookbook The Kitchen Classroom . It has step-by step- recipes featuring full color photos and a guide for parents and teachers so that every parent (grandparent, teacher, therapist) can use cooking to engage our kids.  Some of the skills that George and my students are working on (while we cook):

 

  • Literacy: Recipes are like stories—they feature a beginning, middle and end. Reading a recipe is a wonderful way to work on sequence. If your children are not reading yet, recipes that feature pictures like in The Kitchen Classroom can help them to follow each step. Highlight words in the recipe and find the word on the ingredient label: flour, eggs, honey, oil, vanilla, etc. I make flashcards featuring new words in a recipe and go over them with George before we start cooking. (Here’s a video clip of George and me working on cooking and reading).
  • Fine Motor Skills: If your child needs support holding a pencil, writing, cutting with scissors, etc., the kitchen is a great place to strengthen fine motor skills. Stirring with a spoon, cutting with a plastic knife, kneading dough all work on the muscles control needed for tasks that require hand strength and control. After holding a pencil all day, my son would much rather work with a knife to slice up a banana for an after school snack. Spreading peanut butter with a knife does the trick, too!
  • Sensory Integration: As I mentioned above, cooking is full of sensory information. For children who are sensory seeking, cooking offers an appropriate way to touch wonderfully rich textures. For children who are sensory avoiders, cooking offers a safe, organized way to gradually adjust to different smells, textures and tastes.
  • Math: If your child needs help with counting, 1:1 correspondence or more advances skills like addition, subtraction or fractions, cooking offers a fun way to work on those skills. As you drop grapes into the fruit salad you’re making, count each one. Double a recipe to work on addition. Help your child set the numbers on a timer. So many ways to make math more fun!
  • Social skills: Children who need support engaging with others and working on communication skills can be supported by cooking together. In all cultures, preparing food is a time when people share stories and traditions. So for you, cooking can be a time to communicate with your child, from making a grocery list to sharing your reactions to how the recipes comes out. Cooking offers a fun, structured activity to try for playdates or in a group setting.

I know, school has started, and schedules are tight, but taking just a few minutes in your day to connect with your child in a simple cooking activity is as pleasurable and stress busting as it is delicious .

Please feel free to share your questions, ideas or challenges with me at gabrielle@kitchenclassroom4kids.com

Gabrielle Kaplan-Mayer is the author of The Kitchen Classroom: 32 Visual GF/CF Recipes to Boost Developmental Skills. Through skype, she leads parent/teacher trainings across the country to help adults get children of all abilities into the kitchen.

gab

How this autism mom stays married

“How have you stayed married?” asked the young autism mom, “I hear the divorce rate is high for parents of children with autism.”

I have  heard that statistic in so many different versions over the years, so did my own informal poll here.

There is a secret to staying married, whether you have a child with autism or not.

This is PART 5 of my summer series featuring versions of my best loved blog posts about raising a son with autism.

***

Engaged

Engaged

 

Looking AARPy is our matching shirts 29 years later

Looking AARPy is our matching shirts 29 years later

There are obvious ways that parents of children with autism should nurture their marriage, but the not so obvious reason that has worked for the Shumaker’s is this:

We are nice to each other.

Here are just a few examples from the archives of our 29 years:

1) When it was  a bad day, and the kids were sick and I was stuck at home all day and completely STIR CRAZY, I learned to resist the urge to say “YOUR TURN!” and race out the door the second my husband got home.(It took me a while to master that one…) We hugged and kissed and I smiled at him (even when I had to force it). I waited about a minute and said “I’m going nuts. I think I’ll go to the book store for a little bit. Is that OK?” When I got home, the kids were bathed and in their jammies. (This was not automatic. It took some time and some counseling for Peter to learn this.)

2)Peter 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 Peter 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 another  learned behavior–did not come naturally.)

4) I let my Peter vent without giving advice. He LEARNED to do 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.

6) 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.”

Are you nice?

***

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

***

You might also be interested in:

How I Learned to Stop Criticizing and Be Nice to My Husband

It’s Not About the Nail 

Beautiful Advice from a Divorced Man after 16 years of Marriage

How is your marriage holding up?

 

 

 

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

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Read me also at the HUFFINGTON POST and SFGATE.

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Have you read my book yet? I think you will really like it. Available in paper and on Kindle. Order it here.

 

 

 

12 life lessons that I’ve learned from raising a child with autism

Of the many lessons I have learned from raising a child with autism from babyhood to adulthood, the following twelve were the hardest earned, and the most valuable:

Optimistic new mom-what do you mean “life lessons”?

This is PART 4 of my summer series featuring my best loved posts about raising a son with autism.

12 life lessons that I’ve learned from raising a child with autism

LIFE LESSON #1 - There is no such thing as a “weirdo”. People that seem weird have challenges that are hard to understand.

LIFE LESSON #2 – People who seem different are probably very lonely.

LIFE LESSON # 3 – There is nothing more valuable in this world than a well trained and compassionate teacher…

LIFE LESSON # 4 – …but loyal friends and a great therapist are close behind.

LIFE LESSON # 5 -There are many more nice people in the world than there are not so nice people.

LIFE LESSON # 6 - It’s important to be flexible.

LIFE LESSON # 7 -There is a fine line between patience and anger.

LIFE LESSON # 8 - The house doesn’t always have to be clean. And neat.

LIFE LESSON # 9 - Yelling is bad. It always makes things worse.

LIFE LESSON # 10 - Humor helps. A lot.

LIFE LESSON # 11 - Everyone you meet has a story of their own.

LIFE LESSON # 12 - Kindness and praise can defuse a difficult situation magically.

Laura Shumaker, author A REGULAR GUY: GROWING UP WITH AUTISM

Old mom

Old mom

Other posts that you might find helpful:

Explaining Autism

Lonely?

Does it get easier?

 

 

Why autism moms act the way they do

I have changed since becoming an autism mom. I used to worry about how I changed and wondered it I’d ever be my “old self” again. I am not worried anymore. I’m grateful to Matthew for helping become the person I am today.

What about you?  The following is the third in my summer series:

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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…

In the spirit of

Chantal Sicile-Kira’s terrific article Why do children and adults with autism act the way they do? inPsychology Today, I thought it might be helpful to to write an explanation of another mysterious cast of characters in the autism community: Autism mothers.

Autism mom (me) holding it together--for now
Autism 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?

  • We aren’t sleeping
  • Our already busy and emotionally intense days are punctuated with phone calls that catch us off guard and hurt our feelings.
  • 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?

  •  Evenings are hard. Our kids need us. We are drained.
  •  We did not read the book and worry that we’ll say stupid things just to sound smart.
  • 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?

  • We are immersed in the world of quirky kids. We’re out of practice.
  • We’re tired
  • We feel so lucky to be invited places that we are manic.

4) We bristle when well meaning people say “You’re a saint” or “Bless your heart” or”at least the other two are normal” or …grrrr, someone real said this to me “At least you don’t have cancer.”

WHY?

Because we love and admire our children so much. We would rather be considered good moms than saints.

***

Can you share some more autism mom characteristics?

xo

Laura

 

 

 

 

Understanding rejection with autism

There is nothing worse than the pain of rejection, but understanding rejection when you have autism is difficult.

Here is how I helped Matthew cope with MAJOR hurt feelings:

***

It was February 16th, 2006, just two days after a Valentine’s Day storm paralyzed the Northeast. I had just finished my continental breakfast-a rubbery muffin and weak coffee -at a mediocre hotel near the Philadelphia Airport. My flight from California had arrived late the night before, following hours of delays, and I was tired and jittery.

I was on my way to pick up my twenty-year-old son, Matthew, who has autism, at his special school in rural Pennsylvania, about an hour west of the city. He had been begging me to take him to Washington D.C. since he’d enrolled at the school three years before, and I thought it would be fun to go over the President’s Weekend break. When the storm hit I almost backed out, but maternal love and guilt pushed me forward.

When I pulled into the snowy driveway of the house where Matthew lived, I saw him waiting on the porch, smiling widely, and that old familiar lump made its way back to my throat. He was wearing jeans, black snow boots and a thin t-shirt, even though it was only 28 degrees. A self-proclaimed gardening expert, he was holding the leaf blower that I’d given him for Christmas, and was using it as a snow blower. It was clear that he had just cut his bangs again, another botch job. Matthew’s house was on the grounds of his school, and he lived there with two other students and his house parents, Dawn and Lazlo.

“He’d be really good looking if he weren’t autistic,” my fourteen-year-old son once said about Matthew, and as unkind as it sounds, it’s true. Matthew is very handsome, with a tall and solid frame, broad shoulders, and sandy blonde hair. His eyebrows arch dramatically to frame his brown eyes, and his jaw is square and masculine. But his exaggerated expressions and awkward body carriage make him stand out in a crowd. His forehead twists with intensity, he smiles too suddenly and his hungry-for-friendship gaze is desperate. And the bangs are a problem.

“He’s been so excited about this,” said Dawn as she loaded Matthew’s bag in the car. She looked excited, too, and I understood. Matthew had been unusually aggressive about making contact with “hot” girls when his school group went on outings, using suave pickup lines such as “Can I touch your hair?” and “When was the last time you had a seizure?” When counselors from the school tried to offer suggestions of more appropriate exchanges, Matthew yelled, “Stay out of my business!”. The pretty girls scattered, rolling their eyes, and leaving Matthew angry, heartbroken and inconsolable. I applauded anyone who tried to crack Matthew’s socially awkward behavior, but was losing hope that Matthew would ever be able to enjoy the relationship that he craved, one that every mother wants for her child.

“There will be a lot of pretty girls in Washington D.C. this weekend,” Dawn warned me under her breath, then waved us on our way. “Good luck!”

I heeded her warning, but as Matthew’s mother, I had seen it all, and was optimistic that I could manage his girl-crazy behavior and coach him successfully.

The drive from Pennsylvania to Washington was stressful as I swerved to avoid shards of ice, remnants of the storm flying off of cars, trucks and tree limbs. Matthew seemed oblivious to my angst, and played Beatles music loudly as we drove, replaying the first thirty seconds of Octopus’s Garden over and over each time we entered a new state.

Welcome to Maryland

Welcome to Maryland

 

By the time we got to Washington DC I was ragged and hungry, and while seeing the Washington Monument, the White House, the Jefferson Memorial for the first time thrilled me, I worried that it was all too much for Matthew, who was smiling but flapping his hands and rocking double time. Near our hotel, we found a pizza place – Mathew’s first meal while traveling must be pizza – and Matthew settled down after eating his cheese pizza “with nineteen French fries on the side” before heading back to our hotel for the night.

During breakfast at our hotel the next morning, I bit my lip as Matthew leered awkwardly at our attractive young waitress while ordering three Belgian Waffles and an order of sausage.

“First time in D.C.?” she asked, “you have got to go to the Botanical Gardens! Look,” she said, pointing at our map, “it’s just about six blocks away, right next to the Capitol.”

“I’m smart about gardens, I tell you,” Matthew said earnestly, trying to impress, “and you should stay away from oleanders. They’re poisonous.” The waitress rushed away, stifling laughter, leaving me with the heavy feeling in my chest that mothers get when people laugh at their children.

I panicked when I first saw the enormous glass conservatory that housed the botanical gardens and the swarm of people streaming in. Clearly, this was a popular week for middle school tour groups in Washington. A small pack young teenage girls wearing identical t-shirts were bunched in front of us giggling uncontrollably.

“Those girls are hot!” Matthew said, loudly enough for some chaperones to look at us warily

“They are too young to be hot,” I shot back nervously as Matthew pushed towards the entrance. “Stay away from them or you’ll get in trouble.”

“Let me go in first,” Matthew said, still eyeing the young teens. “I don’t want people to think I came here with my mother.”

“That’s fine,” I said, “but Matthew. This is Washington D.C.” I pointed at the pair of armed security guards at the entrance. “It’s important that we stay together and use out best manners. Do you understand?”

“If I don’t use my manners, will they think I’m a bad guy?” Matthew asked, raising his brows and looking titillated.

“They might. You’re a big guy, you know how to behave.”

I tried to suppress the sinking feeling that I’d already lost control of the day, that in fact this entire trip had been a bad idea, that the reward for my sacrifice would be heartache for me and frustration for Matthew. It had been easy to fantasize about this trip from California, where the magnificence of Washington was uncluttered by snow, crowds, and hot middle school girls. But here we were, at the entrance of the Botanical gardens. I had to try to make our day a successful one.

The drive from Pennsylvania to Washington was stressful as I swerved to avoid shards of ice, remnants of the storm flying off of cars, trucks and tree limbs. Matthew seemed oblivious to my angst, and played Beatles music loudly as we drove, replaying the first thirty seconds of Octopus’s Garden over and over each time we entered a new state.

By the time we got to Washington D.C. I was ragged and hungry, and while seeing the Washington Monument, the White House, the Jefferson Memorial for the first time thrilled me, I worried that it was all too much for Matthew, who was smiling but flapping his hands and rocking double time. Near our hotel, we found a pizza place – Mathew’s first meal while traveling must be pizza – and Matthew settled down after eating his cheese pizza “with nineteen French fries on the side” before heading back to our hotel for the night.

During breakfast at our hotel the next morning, I bit my lip as Matthew leered awkwardly at our attractive young waitress while ordering three Belgian Waffles and an order of sausage.

“First time in D.C.?” she asked, “you have got to go to the Botanical Gardens! Look,” she said, pointing at our map, “it’s just about six blocks away, right next to the Capitol.”

“I’m smart about gardens, I tell you,” Matthew said earnestly, trying to impress, “and you should stay away from oleanders. They’re poisonous.” The waitress rushed away, stifling laughter, leaving me with the heavy feeling in my chest that mothers get when people laugh at their children.

I panicked when I first saw the enormous glass conservatory that housed the botanical gardens and the swarm of people streaming in. Clearly, this was a popular week for middle school tour groups in Washington. A small pack young teenage girls wearing identical t-shirts were bunched in front of us giggling uncontrollably.

“Those girls are hot!” Matthew said, loudly enough for some chaperones to look at us warily

“They are too young to be hot,” I shot back nervously as Matthew pushed towards the entrance. “Stay away from them or you’ll get in trouble.”

“Let me go in first,” Matthew said, still eyeing the young teens. “I don’t want people to think I came here with my mother.”

“That’s fine,” I said, “but Matthew. This is Washington D.C.” I pointed at the pair of armed security guards at the entrance. “It’s important that we stay together and use out best manners. Do you understand?”

“If I don’t use my manners, will they think I’m a bad guy?” Matthew asked, raising his brows and looking titillated.

“They might. You’re a big guy, you know how to behave.”

I tried to suppress the sinking feeling that I’d already lost control of the day, that in fact this entire trip had been a bad idea, that the reward for my sacrifice would be heartache for me and frustration for Matthew. It had been easy to fantasize about this trip from California, where the magnificence of Washington was uncluttered by snow, crowds, and hot middle school girls. But here we were, at the entrance of the Botanical gardens. I had to try to make our day a successful one.

Matthew followed the group of young middle-schoolers past the security guards, darting through a series of automatic sliding doors that separated the collections of plants. While I was able to track him, he was working so hard to distance himself from me that he looked suspecious, and I looked like an undercover agent tracking him. This was not a good place to be running after a suspicious looking son, and I caught Matthew by the arm just as a security guard started marching toward us.

“What did I just say a minute ago?” I whispered hoarsely.

“Is everything all right here?” demanded the no-nonsense security guard.

“My mother keeps following me,” wailed Matthew, “I need some space. I want to be independent!”

“Of course you do,” said the guard, glancing at the hacked bangs that explained all, ” but you need to stay together while you’re in this building.” So gripped by his desire to connect with pretty girls, Matthew took off again once the guard turned his back, and I followed like a championship speed walker until he raced through the exit and turned to me, stomping his foot.

“Stop stalking me!” he yelled, echoing the words he’d heard directed toward him so many times before. I felt like the young mother whose child was having a melt-down at the grocery store-if only I could just pick Matthew up and disappear into my minivan. Instead, I had to remain calm. The last thing we needed was a public shouting match.

“I have a great idea,” I said, “Let’s drive to Virginia! That’s a state that you’ve never been to before.”

“Or we could go there first,” Matthew said, pointing to the Capitol Building. There was a line curving around the imposing marble steps, also protected by armed security guards. My instincts told me that it would be best to stay away from any more monuments except from the distance of our rental car. But darn it, I wanted to see the Capitol myself.

“Can you promise to stay with me and walk slowly?” I sighed, “Will you remember that this is the most important place in the world to follow the rules?”

**

Fortunately, the line that led to the entrance of the Capitol was moving quickly. It wasn’t until we got to the security checkpoint that I learned we were in the line for the gallery that overlooked the Senate floor. There was a special Saturday session debating censorship of the Iraq war.

This didn’t concern me at first. Surely since 9/11 the gallery would be in a secure, soundproofed room with floor to ceiling bulletproof windows separating us from the Senate floor. But after filing through a third and final metal detector, Matthew and I were led into the second of three rows that overlooked the Senate floor, where John Warner was speaking. No walls, no glass–just open air and the Senate floor right before us. A camera crew was taping the proceedings for CSPAN.

God help me.

To add to my tension, seated in the row behind us were five very good-looking college age girls.

The hot flashes I’d experienced before were nothing compared to the whoosh of heat that rushed through me now. Matthew promptly got down to business, leaning back and flirting loudly and awkwardly with the co-ed behind him. She shook her head and motioned for him to turn around, which he did with a sly smirk.

“Talking is not allowed here,” I whispered firmly. “I’m serious.”

“O.K!” he yelled. I glanced at the security guards. Matthew had gotten their attention. What would they do if he erupted again? Just as Carl Levin rose to speak, Matthew twisted around again, tapped the knee of another girl behind him and waved at her.

“Cut it out!” she whispered, then looked at her friends in disbelief. While I was frantically thinking of a way to coax Matthew out peacefully, the girls got up and left in disgust. Matthew rose to leave with them, but one of the security guards motioned for him to stay seated. Matthew looked surprised, hesitated, then sat down and faced forward. His face turned red, and tears poured down his face. Diane Feinstein made her way to the podium. I looked pleadingly at the security guard, and he came to my aid.

 

“Let’s go, son,” he said kindly, his arm outstretched, and my sobbing son and I filed out of the gallery. Once outside in the hallway, Matthew confided to the security guard that he wanted a hot girlfriend because he was healthy.

I put my arm around Matthew’s shoulder as we left the Capitol, and wondered what I could say about this experience that would make sense to him. The obvious explanation would be that since 9/11, it was more important than ever keep a low profile. But how in the world could I communicate that to a person devoid of common sense?

“Those girls really hurt my feelings,” Matthew said as we exited into the cold. “They weren’t nice.”

“I know Matthew, but you know what? One time when I was your age, something like this happened to me, too.”

“Really? Where were you?”

“Well, I was in church, and some really cool guys were sitting behind me. I decided to talk to them.”

“Then what happened?”

“I started to talk to them and they told me to shut up!”

“Then what did you do?”

” I started crying. Then my mother, your grandma, walked me out of the church.”

“Was she angry with you?”

“No, she knew that I felt bad because the boys yelled at me. She explained to me that at church, you are not supposed to talk. And the boys knew that and didn’t want to get in trouble.”

“Oh.” Matthew was quiet for about a minute, and wiped his runny nose on the sleeve of his pale blue sweater.

“But Mom?” he asked, his voice quavering, “Did the boys actually think you were nice?”

“I don’t know,” I said. “I never saw them again. But later there were other boys who thought I was nice.”

“That’s good. I’m done talking about the girls now. Can we have lunch in Virginia?”

**

We headed toward Virginia, and as Matthew cued up Octopus’s Garden on the car’s CD player, it occurred to me that this silly ritual had a purpose-it distracted Matthew’s heavy, longing heart. As littered with roadblocks as it was, Matthew’s search for a meaningful relationship was as important as anyone’s. It was vital that everyone who cared for him keep trying to help him find one.

I looked wistfully as we drove away from the Washington Monument and Jefferson Memorial we wouldn’t visit.

I’ll see them next time.

**

Laura Shumaker is the author of A Regular Guy: Growing Up With Autism