Taylor and I are off in a couple of weeks to Michigan to share our film, Normal People Scare Me, and to share our story of growing up with autism. At 21, Taylor stands on stages and blows people away. He stands tall (literally 6”10” and figuratively) in front of audiences after so many years of practice, practice, practice.
A big part of our talk in Michigan will be how we “grew” his abilities. I call this the “ART” of autism.
Some of you know that when Taylor was about a year and a half old, I was told he might never walk or talk. In those days – what I call the “dark” ages of autism – so little was known about autism, let alone high functioning autism or Asperger’s. And so I had to use my intuition and creativity to help him be successful in this world of unreal reality.
When he was one year old, I began using paint on the tips of his finger tips and the palms of his hands to help diminish sensory issues. I’d have him paint with his hands (he didn’t like this much at all) but I smiled, held him (which he didn’t necessarily like either) and paint with him. I would laugh as he put paint on my face and his. Messy was good. I relaxed around the process, and eventually so did he. I joined him in his world – and would say “icky!” and make a face until he gave a (sort-of) smile.
He didn’t smile much in those days, so I would take photographs of him, and my sister, a photographer, would set him up with props and pose him. After we developed the photos (those were the days of corner film processing stores, before digital cameras,) I would show him photo after photo and use my words… “Taylor is smiling here!” I would say. “Taylor is frowning here!” and I’d crack a frown on my face. At times it seemed I was not getting through to him, but I kept at it. As he got older, I would “pose” him with cereal boxes, milk and other items and have him “sell” the product on camera. We’d make up slogans and songs about the products.
“Taylor is selling Cheerios!” I would say. “Ummmmmmm, Ummmmmm cereal is good!”
He would laugh as he was by then old enough to know about Saturday morning cartoons and the kid-friendly ads they promote on commercials that sell millions.
And I would sing social stories to him. I found Carol Gray’s social stories when he was very young. This was one of the first intervention tools that really made sense to me, but even with that, I up-leveled the game. I would write a social story and then sing the story and dance around, encouraging him to sing the words with me. Sometimes he would (echolalia and all) repeat parts of the song. These were days when he had only about ten-twenty words of his own, but was beginning to repeat what I would say or sing… “Put on your shoes and tell me that you love me!” Taylor would chime in “tell me – love me.”
I used these strategies (and more) every minute of every day. Every moment of time was an opportunity to teach (and be taught by him.) Teaching Taylor was a game of fun and excitement when I had the energy. It was exhausting and frustrating when I did not, or when he had meltdowns. But I kept at it.
During this time in my life, I was often on stages speaking about parenting, etc. Often I brought Taylor on stage with me. This exposed him to crowds of people, and being put in front of them. One time, I was talking about “Parenting in Sobriety” Taylor was about 4, and not-yet-potty trained. He was about 4 ½ feet tall at 4, so his very tall self looked odd in diapers, but that’s another story…
As I was presenting my talk on the ups and downs of parenting, his aide walked him into the auditorium, and there he was, excitedly running down the isle and up on to the stage. “Mommy!” he exclaimed. As he reached me, right then and there, he flooded the stage with diarrhea! I was petrified. Oh my gosh! My kid just pooped the most awful smelly mess in front of 200 people. Embarrassment, shame and humiliation aside, I smiled at the audience, and said “This is parenting in sobriety.” Everybody laughed as I scooped him up and dragged him – poop dripping on the floor – to the nearest restroom to wash him down.
The point of this is two-fold. One, Taylor was getting used to being in front of people. Two, I did not shame him or show my upset at his accident. Instead, I smiled and worked with what I had. In this I was “showing” not telling” him that he was okay even when the situation was not.
I continued using the arts in every possible way I could to help my son to emerge from his shell. I could see clearly these strategies were working. His language was improving, his smiles were more frequent, and his meltdowns were less frequent. He was even beginning to let me hold and hug him without apparent the pain he experienced in this intimacy.
When Taylor was in between the 4th and 5th grades, I put him in a drama class – actually it was a summer “enrichment” program for typical kids that offered drama, speech, and art, none of which he was particularly good at on his own in the classroom. I fought my school district to provide the program for him. I explained that summer school was a wasteland for kids watching videos. They told me they were not responsible for “enrichment.” So the district fought me over paying for the program even though it was through the school district. But I prevailed and Taylor was enrolled in the class.
As it turned out, Taylor was made to play the lead role in the show – Paul Bunion. I was shocked and happy that he had been chosen. “You want my Taylor to play the lead?” I asked. Yes, we do. Wow, now those were great people who have no idea today how much that opportunity meant for Taylor and for me.
Because he spoke in a very low volume (our kids are often hyper or hypo) loud or quiet, they gave him two microphones for his scenes. I remember wondering why they gave him two, but they did. When he spoke his lines, OMG! He was brilliant. I beamed from the front row. BUT, when his scenes were over and the other kids took their leads, he started to swing props in circles and then blow kisses to me from the microphone.
SMACK, WOOSH, Blow! The sound was like nails on a chalk board.
I looked at Taylor and mouthed “stop! put the microphone down,” adamantly motioning to him with my hands, “down, down, down!” But this just made him blow harder and louder.
SMACK, he kissed his hand and held it out toward me – WOOSH with a kissing blow.
I was embarrassed and ashamed. But that was on me. The audience – all the parents in the room who did not know my son had autism – seemed not to mind at all.
In the end, Taylor had a blast. And he was so successful in this non-stressful, encouraging environment where his autism did not matter and he was not getting a grade, that the following year (5th grade), for the first time in his life, Taylor was able to stand in front of the room and share an oral report with greater ability and confidence; something he could never do prior to that summer program. In fact, he became quite good at presenting oral reports and sharing in class became easier for him as well.
I then discovered that filming Taylor to catch him in “desired” behaviors was especially helpful. I would catch him doing good things – making good choices as I would say to him – and then replay the video to show him how he appeared to others. I would ask him what he saw, and then use my words to walk him through what I saw. Inevitably I would “catch” undesired” behaviors as well. I’m here to tell you, it is one thing to “tell” your child about their behavior. It’s entirely a different thing to “show” them.
Soon after, I began to film kids in social and life skills groups I facilitated. We would do on camera interviews and then replay the content the following week – all the kids in these groups had, at last, minimum language. Invariably the role models in the group loved to watch themselves. Those who were uncooperative or had meltdowns on film and actually “saw” themselves in this light, would exclaim “I want to do that again!”
When people “see” their behaviors, there is a markedly different response than when we merely “tell” them about their behaviors.
Over the years, I began to take my strategies out into the community. In addition to strategies utilizing the arts in social and life skills groups, I used them with hundreds of kids who attended my Summer and Spring camps, which I facilitated for 5 years. The results – though anecdotal – were stunning.
Today I receive calls yearly from parents whose kids were in my camps, and who are now grown. The parents tell me the same thing over and over. “Keri, you were so great with my kid when they were little, and now I need your help with puberty; transitions to adulthood,” etc.
Currently I am working one on one with one such “kid.” Actually he is an adult (19) who is angry with having autism. For 7 months now, I have worked with him, not on social skills per se, but rather he interns for me on the new film I am making called “Desire”. The film is about sexuality, dating, relationships, safety and disabilities. This young man helps me with research, errands, art projects (he’s in college to become an artist). I use the arts to help him to emerge as a young adult as more of himself, happy and fulfilled with who he is, autism and all. In the beginning when he started with me I used a rating scale to see how he felt about certain things. On a scale of 1-10, he was a 10 for angry at having autism. Some six months later when I had him redo the rating scale, he was a 7! He is getting exposure to his possibility, and in that he feels better about his autism.
As for Taylor, for the past 5 years, he travels globally with me to present our films & share his story of life w/ autism and how the arts helped him improve key skills. Indeed, it was actually Taylor who decided to make our first film. With his enthusiasm for filmmaking, he is the one who helped make it all happen. In fact, and eventually make our highly regarded films, Normal People Scare Me, The Sandwich Kid and ARTS.
Taylor also co-facilitates social skills groups for kids w/ autism every Wednesday night, and is taking sociology in community college to, as he puts it, “Help me understand the kids better.
In economically challenged times, people with disabilities are losing services & programs due to cuts left and right. Bring the arts to life by showing your child “how to.”
Utilizing the arts can be FREE or relatively LOW COST! I encourage you to be creative and find ways to help your child to emerge and grow through the arts – even if all you can’t draw is a stick figure or you sing off key!
Use music, dance, drumming, singing, instruments, paint, drawing, drama, role playing, cameras and video cameras. Lay down in the grass with your child and help them to find figures and creatures in the clouds.
Mostly, join your child’s world and enjoy the freedom that they experience in a world called AUTISM.