In
2006 I saw the fantastic documentary
Normal People Scare Me. It was co-directed by mother/son team, Keri Bowers and Taylor Cross, a teen who has autism. Back then, I was struggling with some school issues for Riley. An elementary school principle in Virginia stood up in the middle of an IEP meeting and called us clueless for insisting Riley be academically challenged. I had just seen the film and I don't know why I thought it was okay to do so, but I e-mailed Keri for advice! She gave me her phone number and we wound up having a great conversation. Talking to a mother further along on the path was like balm on my wounds. It gave me hope.
A second "Normal" film,
The Sandwich Kid, was about Taylor's younger brother Jace, and addressed the triumphs and challenges for siblings of kids with special needs. It too is a wonderful film.
Recently, I had a chance to talk with Keri via e-mail and ask her some questions.
What are you and Taylor doing now? Though Taylor and I continue to travel with our film, Normal People Scare Me, and his business “Taylor & Autism Unraveled,” we continue to deal with the daily realities of autism in an adult world. There’s a magic line between a cucumber and a pickle (as I say), and once you become a pickle you can never be a cucumber again. This is the line between adolescence and becoming an adult. All the rules change, the players (in supports) change, and the issues a young man or woman face as adults become, in many ways, more urgent, more real. Taylor has had some set-backs. He was living in semi-independent living for a year and a half. Toward the end, staff (who did not really understand autism) began to verbally abuse him. Those actions caused him to move home and retreat into himself. I have brought on a Calvary of supports for him to help him regain his (former) shine, but it is hard when the mysteries of the human psyche and autism combined can keep a person stuck in a challenging place.
How old is he? Taylor will be 20 on Christmas Eve. We plan to celebrate in a small family way – though he had an early birthday gathering for himself with some friends of his and a good time was had by all, helping Taylor to come out just a bit of his shell.
What is he up to? Taylor and I are pitching a reality show for TV. “Normal People Scare Me; the realities of disabilities, possibilities & the Arts” He is happy to be vulnerable for the cameras if it will help others. We’ve got a lot of luminaries in disabilities signed on so wish us luck! Taylor will begin taking some college courses in January at our local community college. He is looking forward to taking classes and college life. One day he hopes to attend film school, to continue his dream of one day becoming a film maker and writer for film.
What about Jace? After we made “The Sandwich Kid” a film about siblings of those with disabilities, Jace was able (when not at school) to travel with Taylor and I to share his film, and provide “Sibs” shops for kids in the audience. We went to some fabulous places, including Hawaii and Okinawa, Japan. Jace has been hailed as an inspiration for many siblings who can relate to his life with Taylor. Jace and Taylor continue to grow in their relationship and have forged a very good and important bond – which took so many years to achieve. Jace continues to play ice hockey and tennis, and is going to Mexico for the holidays. He’s a young world traveler, which only adds to his wisdom and innate sense of the world around him. Jace is not just my adored son, but is my friend. We actually like one another immensely, even though at his age (nearly 14) many kids shy away from their parents. We’re closer than ever.
How did the process of making the film change Taylor? And your mother/son relationship? Or didn't it? Making the film brought Taylor and me much closer together – though it added its own inherent stresses as well. Taylor has learned to be a better communicator through the making of his film. He’s learned to be a better public speaker, and shines when the audience applauds, giving him a very real sense of accomplishment and esteem. People seem to want to touch Taylor after his “shows” as if he is some sort of talisman; perhaps rubbing off on others. He is a symbol of what could be for others with kids much younger. He often feels pressure at the same time to be a grown up and sometimes gets mad at me for it. I suppose as with anything there is a trade off. I accept that things are hard for him because of the film he made, but the upside definitely outweighs the downside. We are able to travel together and make great companions on the road – though in the beginning it was tough – now not so much. He loves to visit new cities and spread his work to help others, and as I said this gives him tremendous self-esteem.
How did The Sandwich Kid change the sib relationship? I don’t think it really changed it at all, except that Taylor looked at Jace's issues, and for the first time, it wasn’t all about him. He’s told me that he admires his brother very much for his courage in sharing his story. Recently, Jace won student of the month at his school. When asked who he admired most in the whole world he said “My brother Taylor, because he has overcome so much and doesn’t hold a grudge for how hard things have been for him." Other kids named sports heroes or their dads. My kid saw his brother, the very same brother he used to dismiss, as his hero. This made me cry happy tears.
There is a sandbox scene in the film (a big strapping Taylor sat zoned out, letting sand drift repeatedly through his hands), where one day the tasks of life were just too hard for Taylor. With kids with autism, each day is not the same. I really appreciated this scene. So many people don't realize that what Riley can do one day does not necessarily transfer to other days. She is trying her best whether she can complete a task or not. Is this still the case for Taylor?
Absolutely!!!!! Taylor, in his current challenges will say to me “Mom, I want to do something about the way I feel, to get out of bed each day with a good outlook, but I don’t know how.” Sometimes it's as simple as my saying, "Taylor you need to clean your room.” Simple right? Well, Taylor will look at his room and not even know where to begin. He got a summons for jury duty a couple of weeks ago. If I hadn’t processed the paper work to dismiss him, he would have had a bench warrant out on him. He simply did not know how to respond or what to do. He understands the need, but often, not the process steps. This is what caused the problems with his former staff in his semi-independent living situation. They’d ask him to do something, he’d say “okay” and then not be able to process the request, and they’d get mad at him. On the other hand, he can go to the grocery store and come in within .50 of his budget. He’s learned also to make good food choices in what he buys for himself. He loves that in his (granny suite) at home he’s got his own refrigerator. This makes him feel grown up and he decidedly separates his food from our family refrigerator because it’s important to him to have autonomy. Still, he forgets to take his medication for his thyroid condition, or doesn’t respond to his mail.
How do you deal with judgements of others: family, strangers, friends, etc. re: the decisions you make concerning your son? This is a very sad question to begin with, because the judgment DOES come. We are estranged from my mother (the kid’s grandmother) for this very reason. She thinks she could do a better job than me. Thinks I’m too “soft” on Taylor and Jace. Others think I spoil my kids. I’m not sure that I do or don’t, but I know I hold high expectations. I raise the bar on most days, but the truth is, some days it’s just easier to do “it” myself. I’m sure parents can relate. This goes against everything I teach in my workbook, “Mapping Transitions to Your Child’s Future.” And I sometimes feel guilty because I need to live up to what I espouse. Most days I do but it can be exhausting just to “lug” Taylor’s process steps around constantly, so I do sometimes do for him what he should be doing - like the jury summons response. I say every good athlete needs a coach. I feel sometimes like Lois Lane. When Superman says “Don’t worry, I’ve got you!” she replies, “Yes, but who’s got you!!!!!” I need a good coach too, but can't seem to find one - as people mostly rely on me for answers. Perhaps I should just pay someone!
Where can you get a Normal People Scare Me Tee-shirt? Are they for sale? I don’t sell them, but they can be purchased online at various t-shirt companies. Taylor got one for x-mas from a friend last year and he now wears it on stage a lot.
What has been the most unexpected thing since these two films came out? That I’ve now made a third film!!!!!!! It will be available for sale after January 15th on my website. I can’t believe that my son led me to a career as a filmmaker :) My new film is called ARTS. It is about how the arts can influence, encourage and grow “possibilities”, skills, communication, etc., and even lead to career paths. It features people such as Temple Grandin, Stephen Shore, Stephen Wiltshire, Jerry and Mary Newport, Donna Williams, and Geri Jewell. Others, not-so-internationally known, but equally as talented, share their “art” as well. I also created a soundtrack to Normal People Scare Me with all the great songs in the film. We will be featured in January on Lifetime's "Health Corner" They came and filmed us last week. It's fun to get media attention for the thing I love to do most in the world - help others.
The "weird little bunch" girl. in the Normal film? LOVE THAT GIRL! So much like my Riley. If it doesn't violate her privacy I would love to know more about her and what she's up to. The "weird little bunch" girl is Amy Gravino. She is AWESOME. She also appears in ARTS, and she is writing a book, “The Naughty Autie.” Her book is about relationships and coming of age as a viable woman with autism. She'll cover relationships, sex, dating, and becoming a woman. Amy has continued to be a friend, and I’ve mentored her to find a literary agent for her book. She IS very special. She's also gotten quite a few speaking engagements as a result of her exposure in the film.
As a Mom to a child on the spectrum, how do you take care of yourself? If you had asked me this a couple of months ago, I would have told you good friends, outings, warm baths, and a spiritual presence in my life. Lately, however, it seems that anything and everything that could go wrong in one’s life has gone wrong in mine. It is now, when the chips are down, that I must practice what I preach. I’ve been meditating to help myself stay above water. Sometimes I just garden, for it keeps me sane. Tonight I’m forcing myself to go out with the girls, not because I want to, but because I NEED to. Again, every good athlete needs a coach. Now if I could only learn to ask for help – not one of my stronger points.
You are very creative. How does creativity/spirituality play into mothering a child with autism? This is the center of my work. In fact, I’ve been asked to return to Okinawa (military) to do a show called “The Spiritual Nature of Raising a Child with Special Needs” and I use the arts as a means to getting there. And while I stand on stages around the world (and people really get things out of my work for sure,) I am still just a human being. I don’t think any of us have the market covered on being less than human. Taylor taught me once when he said “Mom, if you’re not vulnerable, your audience can’t hear you.” His comment made me change the way I do my work. Even answering your questions here has me being vulnerable. I used to try and make myself feel more important by making everything “look good”. Now, I just try to be real. Can you believe my kid, yep, the one with autism, taught me that???? Changed me forever.
Do you experience guilt around the autism and if so, how do you deal with it? I don’t feel guilt around autism at all – anymore. I once did. I call this “the death of a dream” and talk about it in my book. I think we all go through it. Instead, I feel guilt around my shortcomings as a parent in general. Last night, Jace was flinging an unopened gallon of green tea in the kitchen, saying “Look mom, great exercise.” The next thing I knew, the gallon flung in the air, crashing to the ground and a gallon of tea was covering every portion of my floor, under the fridge, in the closet, etc. As I mentioned, I’ve been deeply challenged recently, and so I just burst into hysterical sobs. My poor boy was so frightened. I wasn’t mad at him at all. In fact, normally I would have laughed it off and said “Hey, get down here and clean this up with me.” Instead I put the fear of God into him because I was so out of control with my tears. He knew I wasn’t mad, but so desperately wanted me to me okay and for him to be able to make it so. Can I tell you how guilty I felt (and still feel today) for putting my crap on him that way? This morning in the car – we do this thing called “subject of the day.” I said to Jace, “Okay, subject of the day: me and my losing it last night.” I asked how it made him feel. Then I told him it’s not his job to make me okay, and that right now I’m not even sure how to do it, so how could he be expected to? I told him how very sorry I was, and said, “Jace, you should never have to be a part of a grown-up’s problems and for that I am sorry. I am doing everything I can to work through my situation, and just having you there is a big help and I love you for that, but you are NOT responsible for me.” I feel guilty as any mother would even as I write this. When I pick him up at school today, I’m going to tell him “Thanks baby! The kitchen floor is cleaner than it ever would have been if we had not had the accident last night. The mess had me cleaning it better than ever! And I’m grateful for that." On another note, perhaps the tide is changing. Today I found $550 in cash on the floor. Nobody to return it to, so I left my card with the barista at Starbucks (near where I found it) so I can return it if possible. I don’t want to gain by someone else’s loss – talk about feeling guilty, but there was no return address on the bills. With x-mas being so financially strapped (for all of us) this year, the money, if I get to keep it, will buy a new coat for my 6’10” Taylor and cashmere sweaters for Jace. Is that a sign?
As Taylor grows up, in what ways are you "letting go" and in what ways are you not able to yet? This is a very important question. Most parents continue to “do” so much for their adult kids. I’ve made Taylor responsible for many things he was not responsible for as a youth. This has been a situation that has caused a lot of problems for us – long story. Without going into the details, suffice it to say that Taylor has slipped and fell down over these responsibilities, BUT, each time he falls, he learns a new lesson. It has made him stronger and more capable. I don’t think there are many ways I still hold on. I'm like a mother bird who (metaphorically) kicked him out of the nest. Not so long ago, Taylor had a girlfriend. My concern was not so much his choice, or if I even liked her. My concern was that he be protected and that she be protected with, dare I say it? Sex? So without regard to how I felt about the coupling, I made sure we had a family to family conversation with the (woman’s) parents. I feel it is our job to create the ability for our children to make good decisions in life. That is at the top of the pyramid of “most important” for our kids. Everything, but everything else, falls under that umbrella. I believe that the more we do “for” our young adults, the less they can do for themselves, and thus, they don’t learn to make good decisions. While I understand Taylor has more capabilities than others and fewer still than others, it is still my “job” to let him make mistakes – to let him fall. If he doesn’t he will never learn from life's realities. So it IS my job to let him go (health and safety always a concern). In this, I hope, one day he will live independently in the world and make a huge contribution to his life and the world.
Thank you Keri! Congrats on your THIRD film coming out Janurary 15, and best of luck on the reality show. We'll be keeping our fingers crossed! Understanding = compassion.
Here we are at the beginning of the concert, getting this party started on the dance floor. All the kids, had the BEST time. This was one of the great things about the concert. Not many places you can go, in the middle of winter, in upstate NY to hear live music and dance, with the children. It was awesome!
My sister Kelli, not only set up and manned the raffle tables, but got these adorable bags of coffee to sell with Riley's picture and the 
