“Mapping Transitions to Your Child’s Future”
Who would have thought nearly 21 years ago when Taylor came into this world he would become my personal muse, a valet of inspiration, a philosopher, who came to inspire my life’s work in the field of arts, disabilities, and advocacy, but he did. Moreover, I wonder, who would have thought Taylor would one day grow up to inspire people around the world to see in him, a possibility for themselves. As an adult self-advocate and public speaker – who happens to have autism – Taylor has been able to do this and more. So people ask when they meet us…
“How did you get from there to here?”
Well, truth is what I didn’t borrow, I made up.
Inspiration was found in the works of Carol Gray, Richard Lavoie, Temple Grandin, Donna Williams, and even from personal awareness seminars like Life Spring and Landmark Forum. I took the good and reasonable strategies from IEP’s, MTP’s, IPPs (and any other “P’s” I could find); from ADA, IDEA, and seminars. I went to advocacy trainings, and spoke to anyone who would share how they opened doors of possibility. My previous experience as a paralegal didn’t hurt either. It helped me segue law, schools, and the “system” to become a better advocate for Taylor.
And I wrote it all down. Pages and pages of ideas, strategies, and all the wacky things I made up to help Taylor to emerge as more of his possibility. I now call those strategies “power tools”. And with a lot of hard work, over the years Taylor began to improve. I mean really improve. Socially, emotionally, physically, sensorily and in most other ways, Taylor gained miles and I gained confidence.
As an artist, I used the arts to help “find” and heal Taylor. From paint brushed on his finger tips as a baby (he screamed for the sensory shock) we ultimately translated that to sensory friendly finger painting. We used music to help calm him when behaviors roared their ugly heads. We would lay under clouds to find characters and dragons as we learned deep breathing techniques (raise the belly is the trick) to help calm his nerves. We used a color wheel to help him identify feelings he could not express with words.
I used all forms of art including painting, writing, drumming on coffee cans, and dancing while we did dishes. When he was 3 and all he could say was “eat, eat!!!!” I said give me two words “eat please; want food; hungry now!” and I would walk away (knowing I would not starve him)…Eventually he gave me words, and eventually I could hug him without his writhing in pain at my touch. At around 5, I began using a camera, posing him with products to help him learn to smile that uncrooked autism smile. And I sang social stories – things I made up based on what he needed to learn. I believed through song he would retain more of the information he needed to “get” than spoken words could offer. (have you ever seen a child with no language sing in a holiday performance or at Sunday School?) Music affects our soul and core brain synopsis very differently than the spoken word.
In the early years we struggled – Taylor could barely write. He banged his head, he had meltdowns. He was physically awkward, with an unusual gate, left-over from Hypotonia – the “rag doll” syndrome he also experienced. His sensory perceptions were distorted / disordered. Ordinary sights and sounds, smells, tastes, touches, and spatial arrangement were issues for him. A simple trip to the grocery store; lunch on the playground; looking you in the eye, would put him into overdrive. In addition to autism, he also had disgraphia which hindering his fine motor skills, ability to write and in turn, progress.
So I began to further indulge Taylor in drama, speech, music, dance, and martial arts.
I took Taylor up on stage when I worked (in public speaking on everything from single parenting to positive parenting, to core corporate values) and there he was with me in front of people who wanted to touch him! Yikes…But he learned to calm himself and flow with my work with others. And with his progress I continued to see that using our environment and creating “missions” would change our world. (missions are process steps with goals and objectives)
Eventually I pushed Taylor out in to the real world – to help lead him to independence. Things like public safety, stranger danger, and crossing the street…These were our concerns in the early days as Taylor got older.
I had a nanny who raised my son by day while I worked in West Hollywood as a paralegal. She babied him, but when I got home, we went to work. Sometimes (most times) he fought me. But we worked together on our ABC’s and life’s challenges. Eventually, around the 6th grade, I began to hire staff when I could, borrow teens from the Key and Diplomat Clubs at high schools, and found interns from local colleges to facilitate Taylor in the community with my silly missions.
And the missions began to work. When Taylor was about 10, I began to work with other kids in my community. And Taylor began to move around with supports in our community. Self-determination is essential for Taylor – and for your child…
In 1999, I started PAUSE4kids, a non profit supporting kids with disabilities. I designed and facilitated summer camps (5 years worth to my utter exhaustion), and ran community-based social skills groups when such groups could not be found. Over the years I worked with hundreds of kids working out my Mapping Plans. What of my hairbrained ideas was working? Well, a lot of it, actually. Parents began asking “How’d you do that with my kid?” I’d get kids to do the most amazing things. Filming the kids became a part of how I showed them who they were, and helped them see themselves in a whole new way. Film and drama especially I saw, could draw a child out of the dark into the light.
I called my work with Taylor and others “Mapping Transitions.” Process steps I created, including “The 10 minute a Day Plan”; “Rapid Fire Improvisation”; “A Bit”; ”Missions”; and “Real World Social Skills,” are some of the strategies I’ve now used for over two decades with my son and kids and adults with autism and other disabilities.
So here’s a question for you. Where do you see your child in 5, 10, 15 years? It might be easy, challenging, or even impossible to imagine, but I’m here to tell you dreaming and planning for a future of possibility today, and making decisions today – even if your kid is only 3, will affect the outcome tomorrow. Mapping is a good place to start.
Not so long ago, Taylor was asked by a woman in his audience “Taylor, how hard is too hard to push my 6 year old son?” With his 6’10” frame firmly positioned, he raised his arm high in the air and abruptly pushed it down into his fist. “You take that lever, crank it down, and then break it,” he said. “You’ve just got to make a plan.”