Finding Wally: A Remarkable Family That Refused To Give Up On Their Son

I recently had the pleasure of speaking to Maria Fusco’s 8th grade honors class at Mechanicville Middle School as they prepared to do a writing project on tributes. The students were assigned to find five people they admire and who have influenced their lives and choose one of the five to write a tribute about. So I spoke to them of heroes. I told them that heroes don’t necessarily leap tall buildings in a single bound, or always catch the bad guys in a series of car crashes. I pointed out that heroes are the people next door or down the street. Heroes are everywhere.

My talk focused on some of the heroes I’ve met while interviewing people for feature stories for the Express. I’ve found quite a few, and I know that for every one I’ve found, there are a hundred more quietly going on about their business of doing things for people, building up their communities, inspiring people, laying the groundwork for future generations, doing the good things that real heroes do.

But what I didn’t tell them, what I couldn’t tell them, was the story of one hero who has inspired me more than words can express. The following is an excerpt from an essay written by this hero.

… I am still the happiest at Schoodic (Point in Maine).  Its raw rugged beauty puts me in touch with the power of nature that I enjoy observing. The Schoodic experience revives my spirit each time I visit there but I think the biggest reward that Schoodic offers to me is one of total regard for God’s handy work. Years ago I found this to be very comforting to realize that I could be aware of God’s reality by looking at the simplicity I saw in the ocean waves that danced with grace while offering me their hand each time I felt their gentle cool mist upon my face.

This eloquent paragraph was written recently by Wally Wojtowicz, Jr. Wally suffers from ALS, also known as Lou Gehrig’s disease, a degenerative condition which has rendered him unable to walk or use his hands.  But that’s only part of Wally’s story.

Wally was born December 18, 1966, the second of three children of Wally Sr. and Gay Wojtowicz of Halfmoon. His parents noticed early on that he didn’t have the same gross and fine motor skills that his older sister Jane had as a toddler, but his pediatrician assured them that he was a different person, he would “catch up”. But when he was two years old, a neurologist told Wally Sr. and Gay that their son was autistic. He would never achieve anything over the mental age of a 2 or 3 year old, the doctor said, with a projected IQ of 20 for the remainder of his life.

Although they were advised to put young Wally into an institution because there was nothing that could be done for him, Wally Sr. and Gay chose not to.  They now had a second daughter, Jennifer, and made the choice to raise their son at home with his sisters. As he grew, Wally was put into special day programs where often his teachers suspected that there was more potential in him than projected, but administrators of the programs never acknowledged it was there.  Most of those programs were geared for non-academics, and as his dad says, Wally’s time was “taken up with learning how to rip up paper for recycling or other busy work like taking the lids on and off of containers for hours on end”.

Because Wally was a non-verbal autistic, there was no way for him to communicate other than with gestures and actions.  When his parents would read to his sisters, Wally would be nearby. When they read to him, he would run off, but not too far. He would spin the wheels of a toy car for hours on end, or twit a piece of string or a twig.  He would sift sand or dirt through his fingers, watching intently as it dropped.  He would sit on the floor and fan the pages of a book or magazine, often one that his sisters or parents had just finished reading. The dictionary was one of his favorites.

As is common with autistic children, there were lots of tantrums, screaming, and refusal to cooperate.  The only way to find out what it was he wanted was to run down a checklist of possibilities, and if the right answer wasn’t found, he would continue his behaviors until he wore himself out. When things he couldn’t understand frightened him, he had no way of expressing those fears to his family, and they had no way of knowing what terrifying thoughts were troubling him.

As he grew into his teens, Wally became what he himself later referred to as a “durable teenager”, replacing his earlier behaviors with stubbornness and the ignoring of everyone around him. As his dad says, it “was difficult to persuade a 6’4”, 196 pound young man to do something he didn’t want to do.” In 1991, when his son was 25 years old, a friend of Wally Sr.’s sent him a newspaper article on facilitated communication.  He filed it away, thinking that Wally had no interest in communicating with anyone.  His parents thought that learning to communicate by using facilitated communication might be beyond his capabilities, even though they knew in their hearts that there was a lot more to their son than what the “experts” had told them.

In 1992, Wally Sr. learned that autistic children at St. Coleman’s Home in Watervliet were working with facilitated communication. He was invited by the staff of St. Coleman’s to come to the home and see it work. Facilitated communication is a system in which a person trained in the field works with the nonverbal autistic who has limited motor skills. The facilitator supports the hand or arm of the communicator until the communicator can zero in on the letter he wants on a keyboard, letterboard or other augmentative communication device. As the facilitator is supporting the communicator’s hand or arm, the facilitator is also applying resistance or backward pressure to the communicator’s hand or arm as the communicator attempts to strike the target letter.  It is a long and arduous process, typing the words one letter at a time.

But Wally Sr. was hopeful. He left St. Coleman’s armed with information and a pile of practice materials.  He stopped on the way home to buy a Franklin spell checker, the closest device he could get to the equipment being used at St. Coleman’s. At home, father and son sat together at the table.  Not knowing if Wally would fully understand, Wally Sr. read the article on facilitated communication to him and told him what he had learned at St. Coleman’s.  Wally Sr. said he wanted to try it out.  As soon as he placed the spell checker on the table, Wally stuck out his index finger, indicating he wanted to try it, too. “The first thing he typed” Wally Sr. says, “was his name, wallacewojtowiczjr”.

Although the use of facilitated communication is not fully accepted in some medical circles, many people who have used it have graduated from public schools and colleges worldwide, with some of those graduates earning multiple degrees. The relationship between facilitator and communicator is key, and a good working relationship needs to be established for the process to succeed. For Wally, facilitated communication opened up the floodgates to what has evolved over the past 16 years into a treasure trove of insight into the world of the autistic person, of a child trapped in a world without communication, of an adult striving to right the wrongs.

When they first became able to communicate with Wally, his parents were not aware that he could read. They learned he had taught himself to read at age 3. When he fanned the pages of books he was speed reading them.  He could read 300 to 400 pages per hour if someone turned the pages for him. And fanning that dictionary he liked so much had enabled him to build a remarkable vocabulary. He has taught himself at least seven languages. Before the onset of ALS limited his ability to type even with a facilitator, he could type on two computers in two languages on two different subjects at the same time, on one with the left hand, on the other with the right. Now, with the weakness caused by ALS, Wally relies more and more on his “eye gaze” computer, a device which reads the key he is looking at. This will allow him to continue communicating when facilitated communication is no longer feasible.

Wally’s writings on the world of autism have been widely read at conferences. It takes him a cumulative 8 to 10 hours to type one page of single-spaced type, but through his growing body of work he has been able to assist college students with their course work and with term papers on autism and the autistic person.  Wally’s gift to the world has been one of understanding.

To even begin to tell Wally’s complete story will take the full volume that is in the works. To me, his story is one of hope, love and determination, of potential unlocked and perseverance rewarded. His remarkable family, the two totally devoted sisters who defended him fiercely when they were children even though he chewed the feet off their Barbie dolls, and his parents who believed in him, has enabled Wally to fulfill the tremendous potential that was for too many years hidden by his inability to speak or write.

Wally Wojtowicz, Jr, and his niece Jenny-Adama

With a specially outfitted motor home, the family has for years been able to travel with Wally to visit the Maine seashore he loves so much as well as to other vacation spots they all enjoy. His writings about his travels reveal his poetic side. Wally’s medical issues, however … the continuing ravages of ALS along with epilepsy, a recent surgery to correct a twisted intestine, and a tracheotomy to assist his breathing … have lately limited his ability to travel.

With limited opportunity for Wally to leave his well-equipped room at home, which is fitted out to deal with potential medical emergencies, Jen’s recent marriage to Marcus Kwame Anderson posed some logistical problems. But for a loving family, those logistical problems were easily overcome. The wedding was held in Wally’s room, with twenty people comfortably accommodated for the ceremony which was performed by the Rev. Julian Davies of Siena College. As a groomsman, Wally was handsomely attired in a “tux”, a t-shirt with a picture of a tux and flowers printed on the front.  Artificial flowers were chosen so as not to aggravate Wally’s allergies to real flowers.

Recently, Jen authored a children’s picture book, The Boy Who Grew Flowers, illustrated by Steve Adams.  It was published by Barefoot Books in 2005. In her dedication, Jen writes “For my brother, Wally, because you were there to show me that what makes us different is what makes us wonderful.”

Wally is a man with an infectious smile who enjoys books on tape, classical music, the rush of waves on the shore, and the company of family and friends … not all that different perhaps, but truly wonderful. A hero? Absolutely.

Sandy McBride

Editor’s note: A four-minute clip featuring some of Wally’s writings as well as his parents’ insight is featured in Heart Savants on YouTube. The link to see this remarkable video is YouTube – Heart Savants .

This paper appeared earlier in THE EXPRESS (June 3, 2008). It is used here by permission of the author.