Saturday, September 24, 2011

SNSS: A Tale of Two Brothers

Today's SNSS guest, Laura Shumaker is the mother of three sons, one of whom, Matthew, is on the autism spectrum. While she is more of a veteran, no longer quite in the trenches with us, as her sons are older, she does remember it all, quite clearly.  

If her name sounds familiar, it is because you may have read her wonderful memoir: "A Regular Guy: Growing Up With Autism" about life with her son, Matthew. The book's sub-title, "A family's story of love and acceptance" lets you know exactly where she is coming from. A beautiful place. 

Besides this book, Laura writes an autism blog for The San Fransisco Chronicle's online site SFGate, at her own eponymous site, Laura Shumaker, as well as for a number of other venues, including, NPR Perspectives, and 5 Minutes for Special Needs. 

Her work is inspirational, the mission statement on her blog: "launching teens and young adults with autism." And this is exactly what I need to hear: tales of launching, of success.

While her sons have, by now, grown into young men, the story Laura chooses to share with us here comes from a few years ago, when her son Matthew and his NT brother Andy were both (yes, BOTH) in college. So come, now, read, and be inspired:

A Tale of Two Brothers - by Laura Shumaker

It was an icy cold morning our Northern California town. I tapped lightly on my son, Andy's, door to wake him for an early morning flight back to the east coast, where was freshman in college. During his three week winter break, my husband and I were struck by how little time he needed to spend with us.

Though he was perfectly pleasant, he was always in a hurry to be anywhere but home.

"Have you had a meaningful conversation with him?" I asked my husband after a week and a half, "I sure haven't." "No," he sighed, "but he's thrown me a few lines." Paranoid that we had gone wrong somewhere along the way, we polled our friends in similar circumstances, and they assured us that his behavior was normal.

"Join the club," they laughed, so we relaxed and made ourselves available for conversation and meals, and were grateful for the scraps that came our way.

It was clear, however, that Andy couldn't wait to get back to school, so much so that I was ready for him to leave.

Just as I took a quick swig of coffee before our trip to the airport Andy stepped out fully dressed, packed and ready to go. The night before, he had printed out his boarding pass and arranged for a ride from JFK to his school in Connecticut.


It was quite a different scene one week earlier, when Andy's 20-year-old brother Matthew, who has autism, prepared for his trip back to Pennsylvania, where he attends a special school.

"Mom," he had said the night before his trip, "I need to make pancakes in the morning."

His flight was at 7:10.

"Of course," I said. It was an outrageous request, but one I'd anticipated. Travel days were hard for Matthew, and sticking to his routine would increase the odds of the day being a successful one. So we were up at 4:15, setting his place at the table and warming the griddle.

After breakfast, he counted the money that he had earned during the break doing garden work, and left it piled neatly in the drawer next to his bed. It was no use telling him to put it in a wallet or the bank.

"I like the dollars stacked," he said, "and we're not going to talk about it anymore."

I looked to see if he had cut his bangs the night before, another one of his pre-travel rituals.

Oh, man, he sure did.

Matthew is high functioning but socially inept, and it's necessary for him to fly with a helper. Today, he would be flying back to school with a young woman who worked at his school. She had flown Matthew home and had been touring California during his stay.

During visits home, Matthew, a self-proclaimed landscape specialist, is obsessed with garden work--mowing, blowing and edging with precision.

When he is not doing it himself, he studies other garden crews in our neighborhood and around town. They all know him and are kind to him, as are the neighbors for whom they work.

This year, after three or four days, he grew tired of gardening and announced that he was ready to hang out with his friends. The only problem is he has no friends.

"You can go to the movies with me and my friends," Andy offered as he always does, but Matthew refused.

"I have my own friends," he said proudly, and proceeded to call people who had been kind to him five years ago during his first and only year in public high school.

He called them over and over and over. Their mothers took most of the calls, and I'm sure they wondered why I didn't put a stop to his obsessive behavior.

"Matthew," I said, "calling once or twice is fine, but if you keep calling, that's bothering, and you'll make people angry." I told him that when I was his age, a guy I liked called me too much and it drove me away.

"But did you still think he was nice?" Matthew asked, his lip quivering.

Before I could answer, the sound of a lawnmower around the corner distracted him, and with the promise of a friendly garden crew he was off with a grin. I could exhale for the moment, but I remained constantly on edge until delivering him into the hands of his travel companion for his flight back to school.

"Having a brother like Matthew will make Andy a better person," said well-meaning friends when Matthew was first diagnosed with autism at age three. While their words were meant to comfort and encourage me, they implied that tough times were ahead for baby Andy, which strengthened my resolve to protect him.

Andy was five when I first noticed playmates in the park teasing him about his brother's hand flapping, and I flew to his side, ready to take on the little jerks.

"He has a brain problem," Andy was explaining to them cheerfully, "He can't help it."

The boys nodded anxiously and backed away.

"Andy," I said with a lump in my throat, "I'm so proud of you. That was very loyal." "Thank you," he said, "I'm proud of you, too."

It wasn't long, though, until the novelty of educating his peers wore off, and by the time he was seven, I watched Andy's exuberant explanations turn defensive, and I swooped in with suggestions of snappy comeback lines for him to use in a pinch.

Takes one to know one


Get a life!

But by the time he was twelve and entering his middle school years, Andy got tired of using all of the clever lines as Matthew's impulsive behavior and public meltdowns increased.

"Andy needs a break," I told my husband. "Why don't you go to his game today, and I'll stay home with Matthew." Andy seemed pleased with this arrangement, but when he came home, he looked strangely sad for a boy who had scored three goals.

"I had such a great game," he said. "I wish you could have been there."

Soon after, Andy stopped having friends over and started refusing invitations.

"The last time I went to a friend's house," he said, "they asked me why we never hang out at my house. I don't want to say 'because I'm tired of apologizing for my brother.'"

"Would you like to talk to someone?" I asked, "or maybe join some kind of a sibling support group?"

"Or could I just talk to you sometimes?" he replied quietly, "and sometimes can we do stuff-just you and me-without Matthew?"

"Oh, of course!" I said, choking up. And, wouldn't you know it, the next day Andy had a slight fever, but we decided he was well enough to go to Pier 39 with me for the day.

The next few years with Matthew were especially hard, and Andy prided himself on being one of the few people in the world who could calm Matthew down when he was upset, and on being the one who could make Matthew laugh the hardest.
"I've got him," he would say when Matthew climbed off the yellow school bus in tears. The two would go out to the mulberry tree in the back and sit on opposite branches until Andy got Matthew to smile. When they walked back in the house, Andy flashed me a secret victorious smile, and I put my hand over my heart in reply.

When I was having doubts about whether or not to send Matthew to a residential school, it was an innocent comment from Andy that helped me make my decision.

"If he goes, maybe both you and Dad can go to my games."

A month to the day that Matthew left for his school in Pennsylvania, Andy, who was now in ninth grade, burst into the house after school looking nervous but exhilarated. He asked if I could help him clean up the house-now.

"Luke and Greg are on their way over!"

I couldn't even remember the last time he'd had friends over.

Within minutes, the clutter of the house was stacked on my bed, the house was vacuumed and the toilets cleaned. I was shoving the mop back in the closet when the doorbell rang.

"Hi, guys," I said, grinning like a modern June Cleaver. "He's back in his room."

Before I could bake the cookies that I had thrown together in my manic state, the boys rushed out laughing and announced they were walking downtown. They flew out the front door, and I burst into tears.

The morning Andy was born, I still thought Matthew was just a regular two-year-old, and I worried whether I could ever love this second baby as much as I did the first. The feeling evaporated the moment I was alone with Andy for the first time in my hospital room, kissing his fuzzy baby head and studying his chubby hands.

Now I had not just Matthew, but brothers, and I imagined the two growing up together. Andy would look up to Matthew, and learn from him. When they were in school, the teachers would say, "Oh, you're Matthew Shumaker's brother!" and Andy would beam.

They would drive around together as teenagers, have the same friends, and I would raise them to be loyal to one another. They might go to different colleges; that would be healthy. But wouldn't it be great if they lived near each other as men and if their wives were friends?

I could never have known that Andy and Matthew would blossom at about the same time-3000 miles apart. I couldn't have imagined that Matthew would be an autistic young man, and that I'd be grateful that he was living and learning with teachers who understood him and valued him.

And I could never have guessed that Andy, after suffering through his reclusive period, would experience a joyous rebirth as he entered high school and that he would reclaim the class clown status that had eroded since grammar school.

He would enjoy sports, friends and classes. By senior year, his homebody stage would be a distant memory as he made plans to go to college at Yale.

When I drove Andy to the airport after winter break, he asked me if I had heard Matthew speak Spanish.

"No. He speaks Spanish?"

"He pretends to speak Spanish," Andy said with a smile, "when he hangs out with some of the garden crews."

"Oh, no, that's terrible!" I said, "They must think he's racist or something!"

"Come on, Mom," he laughed, "They think it's hilarious. They can tell he' know."

Andy jumped out of the car, dragging his huge duffel bag behind him.

"I love you, Mom. Thanks for everything. And don't worry so much about Matthew. He'll find his way. And you know I'll always look out for him."

He walked into the airport, and I drove away, conscious that my 18-year-old son had just thrown me a line. But he meant it.

And I grabbed it gratefully.


Reading this post,
 my heart aches, nearly breaks open with the hope that some day Ethan will come into an easier relationship with his brother the way her Andy has.

I also had the pleasure of meeting Laura in person at the Special Needs Parent Bloggers mini-con that took place within BlogHer11 this summer. And I can state unequivocally that she is as lovely and encouraging in person as she is in print.

So having read this here, you are certainly going to want to read more words of wisdom from Laura. You'll find her on her website, Laura Shumaker, and herSan Fransisco Chronicleblog.

First, you simply MUST read this incredibly touching post written by her NT son Andy about his brother.  Then, if you haven't yet, you will want to read her whole book, a taste of which is here on her site.

Also you will want to read her San Fransisco Chronicle blog for the community information as well as personal stories, especially this VERY important post about how to deal with the POLICE. This information is vital, potentially LIFE SAVING when you have a large son like I do.

Finally, you should also go "like" Laura on her book's Facebook Fan Page. and by all means follow her on Twitter, too!  

Thank you, Laura for sharing your wonderful family with us here today.

Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.