I found the newspaper article on Matt when he was seven. He played T-ball, something autistic children were thought unable to do. Complete with photo. I showed it to Matt. As many of you know, Matt has no memory of his childhood. He read it aloud, unsure and unsteady, part of him didn't want to know, part of him had to. As he read it I wondered if he saw what a miracle he was - still is.
I went looking for it because just recently my autism website hit 3.5 million and word got out in my own community, leading to an email requesting an interview from the local newspaper. Instead of feeling excited Matt was anxious. “No paparazzi” was his only reply. In other words, no cameras, please, and no questions either. Matt is fine with me talking and writing about him but has no desire to be asked questions about himself and his life. He knows he would be expected to reply and it’s stressful for him to do that as Matt is mostly nonverbal. So I am his voice. He allows me to talk about his life for him –an amazing honor for me.
When I returned home from my interview today I told him about it and he listened, a stern look on his face. Matt lost his childhood memories in adolescence. When I tell people about him and he is listening he has that same stern look. He’s not sure whether he believes his childhood was like that or not. I can show him pictures- boxes of pictures – but pictures don’t show autism. Autism is not a physical handicap – and that makes it almost invisible in photographs. Autism is seen in the behaviors, in social interaction and ability to communicate. It’s not readily recognized in the photographs of his smiles while on vacations or at school awards.
“Matt, you have been in the newspaper before, when you were only seven years old.” Our eyes met. “Do you remember?” I asked.
“No.” he replied, his eyes shifting downward. Not being able to remember makes him feel uncomfortable.
“Not to worry. I keep everything. Let me see if I can find it”. And off I went to dig through files. The first one I came across was of him with his speech therapist. That article was about his therapist, not Matt, but the picture was of the two of them so I showed it to him anyway. “Do you remember this one?” That look washed over his face again. He was getting more uncomfortable. He didn’t remember. I switched gears. I pulled one of the old newspaper clippings I found of his brother on the high school wrestling team and showed him that one. His face lit up as he recognized his brother’s young face. He giggled a bit. Good. He’s seeing that it is OK to be in the paper. If his brother was in the news then it was OK if he was in the news too.
I rummaged around a while longer. Matt had already retreated to his game room when I touched on a yellowed newspaper folded into half twice and wrapped in clear plastic. I removed the wrapper, unfolded the delicate paper slowly and sure enough, there it was. The Southwest Virginia Enterprise….May 8,1993.
Matt was seven years old in 1993, and the only autistic child in his special education classroom. He was the first autistic child in this area to play tee-ball. It was almost a full page article with a huge picture of a very cute little boy standing behind the fence at home plate, giving the photographer a thumb’s up gesture. My memory remembers that day like it was yesterday, but Matt has no memory of it at all.
I laid the paper flat on the counter, smoothed the creases out a bit with my hands and called for Matt. His walk told me he was unsure. His face told me he was nervous. What would he see? Was he wondering if his autism would show on his face? Would he even recognize that little kid?
He looked at the picture first. Something in his eyes – a glimmer of recognition maybe? Or was it relief to not see his autism? Something in his eyes told me he was more curious now than he was afraid. Maybe in examining that face depicted in the yellowed newspaper he realized the little boy in the photo was actually him. He then read the headline aloud, “Matt Takes His Turn at Bat: Seven- year- old battles his disability through tee-ball”. His face scrunched up. He didn’t like the title. It had the word disability.
“Let’s read it, OK?” I nudged. Matt began to read the story aloud.
“Seven-year-old Matt Johnson crossed home plate for the first time Thursday”.
He read on. It talked about his regression, diagnosis, and the hard part, his doctor’s prognosis, “Matt may never get any better and should be institutionalized”.
He read about his first eye contact with me, our first communication through touch (the palm of my hand on his cheek), the first time he called me mom at age 5, his inability to respond to pain. He stumbled on a few words here and there but he continued on. I could sense he had real interest in his story. His voice was light, almost enthusiastic. Matt was curious and that filled me with hope. Did Matt remember this?
Did it even matter anymore? After all, he was reading and learning about himself. He was absorbing a bit of his past. Even if he couldn't remember he could learn about It in a real, and tangible way. He was connecting dots to things he knew, to things he was told and he understood. The words discussed his autism, at a time when autism still had a huge role in his day to day life - a time when it was rare, a time when nobody had ever heard of the autism spectrum. Matt was learning about himself in a newspaper and Matt loves to read newspapers.
He also loves baseball and the news about Matt was also about tee-ball. By reading the newspaper he discovered that before his first tee-ball game we took him out in the yard and practiced going from first base to second base, to third and then home. I remember that day. We bribed him with M&Ms candy and we thought we had it down until during that first game when he refused to stop at first base after the play officially ended, and insisted he had to go on to home plate. I remember. I remember how wonderfully funny it was. How the umpire about had a stroke when Matt refused to leave the field until he touched all the bases. Some parents yelled in anger, some parents laughed and pointed, but the entire group of neurotypical adults was baffled by the presumed stubbornness of this little boy. It didn't matter what other parents thought as he tried to touch home plate, we knew why he had to, and we smiled and giggled to ourselves. We understood that we had not taught him all that was needed and there was the proof - right there, trying to get to past the umpire to touch homeplate. I remember going to the coach, who went to the umpire. I remember the change on the ump's face when he realized Matt had a handicap. I remember our sense of humor kept us sane. Does Matt?
Matt continued reading aloud,
“Liz hopes one day Matt will be able to live on his own. He is reading on a second grade level now and she hopes by fourth grade Matt can be taken out of special classes and join a regular classroom”.
He stopped reading and looked at me, directly into my eyes. He’s been striving for independence longer than he could remember, quite literally. This year we are hoping to take that huge step. As I watched his body language and facial expressions I was sure he made the connection. I was pushing for him to be the best he could be even back then. I hoped he understood that I have always had his back. That we fight the fight together. That we are - and have always been - a team. Just transitioning to a regular classroom was a massive undertaking, but he did it and it laid the ground work for the big dream – his independence– something I’ve wanted for him just as much as he has wanted it for himself, ever since he was just a little boy. Now Matt knew it too. He understood. His eyes told me so.
“Matt, you went into a regular classroom in the third grade.You changed schools, from Spillar to Sheffey, do you remember? You’ve always been very smart. I knew you would go into a regular classroom one day.” I said, “And you did it a year later”.
“Yes, a regular class.” He stated confidently.
Matt has hated being different and those few words, yes, a regular class, carried an immense amount of meaning. Reading about the plan, knowing it came to pass, knowing he was transitioned to be with other children, which allowed him to graduate high school years later with regular students, held his attention. Was he connecting the dots? I think so. That was such a long time ago– 20 years have passed – and now he was reading about what he was like prior to that big year, when he was still in special education classes. He had always wanted to be a part of a regular class and in reading the passage he knew just how far he had come. He knew all that hard work had paid off. I could see his epiphany on his face. No words needed. His expression said it all. Here was proof, in the black and white of the newspaper that he had made it.
Then Matt read the last paragraph,
“Matt came up to bat in the bottom of the second. On his first swing the bat hit below the ball. Matt’s second swing connected for the solid grounder up the middle. He stopped six feet from first base and had to be coaxed to step on the bag. He got tired of staying on second, so he hung out at shortstop for a while. But when the next hit found the outfield grass, Matt rounded third and made it home.”
As he read the play by play the rhythm of his voice got faster and I knew he was excited for this little Matt of long ago, he was rooting for him to make it. He paused at the end of the sentence, turned to look at me, a smile graced his face. That smile was pride. He was proud little Matt had rounded the bases and made it home.
Then he looked back at the paper to read the last line, “They (the doctors) don’t give enough hope,”Liz said. “You’ve gotta have hope.”
Again he smiled, turned to look at me, and gave me a big hug. Our eyes met. His were glistening. It hit me hard. I believe Matt understood a little bit more about where he had started and how far he had come. I think he was proud. When he walked back to his game room to play I noticed he stood a little taller, walked with a bit more confidence.
It was obvious Matt was feeling good about himself. What was he feeling? I can’t be sure, but I think it was hope.