Normal People Scare Me: A Blog About Autism

By Keri Bowers

THE “ART” OF AUTISM: Free and Low Cost Power Tools in Economically Challenged Times

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.

Young Adults with Autism in Transition

Helping my 21 year old son to “be” in the world is as difficult in it’s own unique ways as it was when he was little and had no language, behavioral issues, etc.

Finding good supports and services for the young 18-30 year old’s after they leave the school system is hit and miss. Here in California our supports are being cut left, right and center.

While I work making films in autism and other disabilities and work with my son and others in the arts to support and encourage the development of social and life skills, it’s not always so easy to work with my own son.

I find I have to let go and have others do this (for the most part) in order to help him maintain his sense of self and not feel babied by me. He responds (as an adult) much better to outside supports.

He does respond well to my suggestions when I don’t get too close to “s”mothering him.

Any other professional / parents out there who experience the same issues?

Sexuality and Disabilities

“I don’t want to hear this!” Taylor admonished me.

Though he knew the basics about where babies came from, proper and improper touching, stranger danger, and the fact that it was okay to masturbate in private but not in public, at 12, I felt it was time for Taylor to understand more about sex, sexuality and protection.

“But Taylor, you need to have a better understanding about sex.” I said… He wanted zero part of this discussion. “Arrrrrrrrrrgh!” he replied.

Was it so hard because I was a single mother trying to teach my young pubescent son about an embarrassing subject? After all, most kids don’t really want to hear about sex, love, protection and relationships from their mother.

I wondered how much autism contributed to his inability to comprehend and cope with such a discussion – which by the way I attempted to have again when he was 13, 14, 15, 16, etc. But I was determined. Even if it took dozens of approaches to get him to filter and digest the topic of sex and safety, he would eventually hear the message.

So I went to the library and checked out the best books I could find – ones with great pictures and reverent yet “hip” approaches to the subject of sex, and plopped them down on his bed. “Here read these.” I said. “If you won’t talk with me or anybody else about sex and safety (I had composed a list of male friends and family he could talk to but he refused) then you have to read about it.” And that is how Taylor received his first introduction to the realities of sex and safety. All this even before they began sex education in school, because I felt he would need longer to digest it all.

Looking back, I see I had it very easy with Taylor’s learning curve as compared to many others who have a child with greater challenges, and yet it was by no means easy to create this education. There are tangible and intangible obstacles that make the process of teaching sex education harder for individuals with disabilities. Whether it is cognition, language, physical, mental, or emotional deficits or other things that challenge our special needs community, ours is surely a difficult path. And yet disability is no excuse for not providing the best education we can. As parents and professionals, we must take the bull by the proverbial horns and do the best we can to provide this solid education in sexuality and safety. It is unfortunate, but true, that many parents assume their child/adult lacks desire, urges, lust or wants – yet this is simply not true.

But how does one teach safety, for example, to a young girl who is 13 or 15 but has the mind of a 5 year old? How does one teach a young boy about appropriate touching when he is hyper tactile and doesn’t understand the ramifications of touching oneself – or others – in public? How about a person with a physical disability for example; how often do we assume they need no education because they are not sexual beings? These questions, myths and truths (and more) will be explored in my new documentary film on this topic.

I have seen too many special kids grow to be adults with little understanding of their bodies, their urges, and personal safety, and thus have lesser sexual wellness as adults. And I have witnessed how lack of education and awareness has led to abuse. This film will be an effort to wake us up as parents, professionals and as a society; to share an informative and open dialogue on this important topic.

Certainly it is harder to teach this population about sexuality and safety, but teach we must. We need to accept that sex and sexuality are a fact of life – even for our special needs child/adult.

Though society, magazines, and the media would have us believe that sexuality is just for the “able-bodied,” this is a myth and is simply not true. All people possess desire and all individuals are entitled to sexual wellness and happiness. And so we must, I repeat, we must dispel the myths and do a better job at education and openness in this community. Sexual literacy is imperative, not just for some, but for all.

My new film, “DESIRE” will be my fourth film, but my greatest challenge. Clearly sexuality with all its tentacles (including dating, relationships, love, protection, abuse, etc.) encompasses a very difficult subject to dissect, and harder still to boil down to a 60 minute format, but this is the plan – so wish me luck!

Soon, I will post detailed questions in my blog for those of you who would like to chime in on this topic. For now, I leave you with this baseline question:

What are your feelings about the general topic of sexuality and disabilities? Serious replies only please.

PAJAMA MAMA! POWERFUL WOMEN WHO WORK FROM HOME

I prefer 100% cotton baggy pajama bottoms with a t-shirt to well-fitted synthetic fibered pj’s that are too “girly” or matchy-matchy. In fact I prefer that my pj’s don’t match at all. In the spring or Summer I might wear a white cotton chemise or shift, (which makes me feel willowy and sexy,) but rarely when working from home will you find me working in street clothes. I am a pajama mama.

Is this bad form? Perhaps it is. There is something to getting up and putting on a face and breaking out the fabulous clothes I have in my closet – if for no other reason than to enhance self-esteem and feel good about myself by looking good. But I’ve got to say that the time and effort it takes to get dressed up just to sit in my home office to work feels like a waste of my already over-extended precious workday.

As it turns out, I am not alone. Last year I summoned the courage to dare to share my pj proclivities with my BFF Stephanie. Up until that point, I really thought I was the only one nutty enough to stay in my pj’s all day to work. “I’m a freak.” I said. “I work in my pajamas.” She just laughed. “Keri, do you think I get dressed if I don’t have to? I work in pajamas too!”

And that got me thinking. How many women work from home in pj’s and sneak into Starbuck to get a cup-o-java hoping nobody will recognize them while dressed in their jammies? While millions of women work from home there’s really no way to know how many hold off on showering to stay in their pajamas. It’s not the kind of question one can’t ask on “Ask Jeeves” and get an answer, so I took a poll on Facebook. What amazing insights I found.

Leta responded, “I do work from home in my PJ s and love it. I prefer my wild side pj’s – they’re leopard. As for my make up, depends on the mood I am in. My husband prefers me without it. I work for myself running a non-profit that helps families with autism and other disabilities. And yes, I have driven through the drive in window at the bank and Sonic many times in my leopard pj’s!”

Monica’s reply made me laugh. “Usually I have this baggy pant/pajama combo going on just in case I want to run out to get some printer ink or to get the mail. But I like to sleep sans clothing (like a free bird) so it’s good to have something by the bed to slip into for those middle of the night pee runs just in case I encounter my teenage daughter in the hall and she shouts out “Ah!……my eyes!!! …….They’re burning!…….put some clothes on mom!!!!!!!”

“Oh yes! I work in my pj’s and love it!” say Lisa. “I wear very comfy pajamas with no makeup. I don’t wear makeup at home, but definitely do when I have a meeting outside.” Lisa has three kids, so her choice to work from home to parent them was a major contributor to her decision to work from home.

Altogether about 40 women answered my query, and of them, only one, Judy, said she preferred to get up and get all dressed up for her day. “I dress as if I’m going into the outside world to work. I find it more motivating. But I don’t do suits.”

It may be indeed that dressing up motivates the spirit or the mind, even setting a tone for a productive workday, but with so much to do in the fast-paced world, for me, getting dressed to go to work is just one more thing I can take off of my to-do list. I just wish I could find the matching leopard print slipper I lost. I loved those slippers 

i see today’s world as a “fast food society” wherein people, especially working women and mothers have more on their plates than ever before. In the 21st century our lives have become more complicated than ever. Many women opt to work from home in the hopes they will have more time for family and home, yet find juggling the responsibilities of home, family and work are extremely challenging.

Though men have become more involved with child-rearing and household chores than in our own father’s day, the fact is women still maintain the primary responsibility for home and family matters – even in today’s so-called modern world. Because of this, working outside of the home affects work attendance negatively – more so than with our male counterparts. This is another factor in women deciding to work from home.

With technology at our fingertips, including computers, the internet, iPods, BlackBerry’s, fax machines and other technological wonders more than ever home-based businesses are springing up. Working from home affords women and mothers the ability to “claim” their workability while still holding the title “chief cook and bottle washer.”
Did you know?*
- About 60 percent of all women are in the labor force, compared with nearly 75 percent of all men.
- Women comprised 46.5 percent of the total U.S. labor force and are projected to account for 47 percent of the labor force in 2016.
- Women are projected to account for 49 percent of the increase in total labor force growth between 2006 and 2016.
- Moms with kids under six represent the smallest demographic group of the total number of employed people in the U.S. however they command the largest percentage of paid home-based workers.
- Almost 1 out of 10 stay at home moms, with kids below the age of 6 get paid to work at home or have their own home business.
- Of the total 9,331,000 of working moms with kids under the age of 6, 377,676 get paid (by someone else) to work at home.
- 526,164 have their own home-based business.
- Among married-couples where both the wife and the husband work, about one-fifth of the wives earn more than their husbands.

*Compiled by the Women’s Bureau of the United States Department of Labor, June 1993 and U.S. Bureau of Labor Statistics. Unfortunately statistical information is always years behind the current data.

As for Me…

My exodus from the corporate world began 11 years ago when I had the courage to finally stop working for “the man.” Running my own business had always appealed to me, but I had a lot of fear around leaving my salaried career to start something new. When I say a lot of fear, I really mean it. It is scary to leave the old and begin something in uncharted territory. Even if what is old is not what we love, at least it is safe. But you know life is not a dress rehearsal.

When I first started working from home, I thought it would mean I would have more time to spend with my kids, but that turned out not to be true. Working from home often leaves me with fewer hours in the day to spend with my kids because running my own business means I have to work harder, smarter, more hours, and be “on call” more often than I did in my conventional 9:00 – 6:00 career. On the other hand, I am able to be more flexible so I can pick my son up from school, attend school performances, go to doctor’s appointments and do other important things with my kids than a conventional career in an office would afford me.

When I left the work force to start a non-profit organization, PAUSE4kids, I learned the hard way that working from home really meant paying my dues. Because the non-profit sector is not a well paid field to be in, I became a part-time custom painter and a part-time wedding minister. I did these things for 5 years until I was able to finally build a foundation for my home business that would support me. Today my work is still in disabilities advocacy but it has shifted from non-profit to for-profit in filmmaking, providing services, and facilitating workshops and seminars.

How About You?
If you are interested in starting your own home-based business, or growing the one you are already invested in, I believe your success is connected to some very important steps to create or grow your plan with five essential components:

Desire: to move you forward to take action on creating the plan

Discipline: to create your plan of action, including business plan, marketing strategies, and learning everything you need to know about your business

Structure: to help you design the plan

Mission / Vision: to guide the plan

Openness: to help you see past what you think you already know about your plan or current business

ABC’s
A: Align, Adapt and Action
Align: In order to build a successful at-home business you must have the right frame of mind. You must align yourself with belief in yourself, your goals, your abilities and your product. The power of positive thinking can propel your career forward in any direction you dream or desire when in alignment with a higher vision. Every negative thought is a path to disaster. Turn off the TV news. Write affirmations about your success. Visualize your success and see yourself at the top.
Adapt: Adapt your skills with current trends and needs. In our fast food society, people want it and they want it now. What can you provide that is timely, current, topical? How can you improve old strategies to create new opportunities? What up-sells can you create? Stay-at-home moms with no former experience can adapt their at-home skills to at-home businesses. What are you good at?

Action: Taking action can be hard. Where do you start? Try a 10 minute a day plan (you determine how many days a week) and spend that time without fail to search the net, do research, talk to others who are successful in a similar line of work to find out how they became successful. Study success. Write your business plan and mission statement. Let your research help you to determine what action steps you can take to build or grow your business. (Note: I wrote a book on this plan). Be in action. Don’t talk about what you’d like to do – do it!

B: Brushing-Up and Beliefs

Brush Up on Skills: Are your computer skills as good as they could be? How about your office management or bookkeeping skills? If your-home based business will not outsource some of the key ingredients to running your own business, you will need to brush up on or learn new skills in order to be successful. Take online courses, a class at community college or adult school to learn new skills that will support your home-based business. We have some great resources here in our County.

Beliefs: What do you believe about the economy? About your abilities? What were you taught as a child, and how do those beliefs affect you today? Take a good look at your belief system to see where old ideas and “stories” may hold you up from running a successful business. Write affirmations on post-it notes and leave them where you will see them. Do this to counter old beliefs that do not work, and to create new values in your belief system.
C: Creation, Communication, Consistency
Creation: Close your eyes and picture the next step. Whether you define success as a simple home based-business or you want to build a large company, it won’t happen until you imagine it. Use the internet to guide your creation.

Communication: Look at your communication skills. Not everybody is a salesperson, but everybody who is in business has something to sell. What are your strengths and weaknesses in the way you communicate with others? Join networking groups or Toastmasters to get more in touch with your communication skills.

Consistency: How consistent are you? In my line of work, I am only as good as the value I add to what I am selling. I need to be consistent in my presentations, making or returning phone calls and emails. My clients need to be able to rely upon my word. It takes many turns to gain a client, but only one screw-up to lose them!

THE HOME-BASED WORKFORCE IS GROWING STEADILY

The home-based workforce has been growing steadily for decades yet current economics are causing the home businesses to grow even more rapidly. With current technologies and abilities to reach out and touch someone in an instant, we have access to people (read: customers) around the world 24 hours a day. And let’s face it, with economically challenged times more than ever we need to find was to make money to support our families and keep our homes. Everything you need to create or grow your home-based business is at your finger tips.
Did you know that people who own their own home-based business have less education than those who work in mainstream America? 58.9.0% have less than high school diploma, with 54.0 having high school but no college. 46.7% have some college or associate degree, with 24.1% having a Bachelor’s degree or higher. Yet strangely, higher education seems almost to be a handicap for people starting their own home-based business. “The less education the better” appears to be the rule when considering the educational levels of people who have their own home-based business.
Ultimately, choosing a form of work that you have a passion for will be better than doing something you don’t really like. It has been said before, love what you do, do what you love, and you will never work a day in your life.

For more information, I suggest you visit Work at Home Moms Meetup Groups at http://workathome.meetup.com/591/

THE MERIDIAN DIVIDE

I sat there, melting in my seat, smudged mascara, and grungy – if not “ripe.”

As we passed over the Meridian divide, I couldn’t help but notice a shift in my consciousness. I was instantly aware at that exact moment in time and space I was betwixt and between: where the East meets the West; night becomes day; and troubles meet solutions. It seemed a rather befitting metaphor considering my unkempt self.

The flight attendants (a most excellent, all-female crew) were all fresh, coiffed, with perfect hair and makeup. They smiled, with authentic friendliness. Suited up in their pencil skirts, starched pin striped blouses, with sweet pink or purple scarves tied in neat little artistic flurries about their necks, they all looked stunning. The fact that they worked in high heels and pantyhose – yes, pantyhose – made me smile. I don’t wear heels so much anymore. Every attendant looked fresh as a daisy.

The 10+ hour flight from Tokyo to LAX is a long and grueling flight, yet these women were at the top of their game. Minute-by-minute, hour-by-hour, they took their work quite seriously while looking great.

As for me, I looked like a piece of wilted lettuce.

In taking note of this juxtaposition, it occurred to me that in each minute – each millisecond of the day or night, we each make a choice. We strive for perfection or settle for less; we strive to joy or settle into our fears.

With each choice we make, we see that we are able to rise to the occasion of the needs of our desires, vocation, or circumstances in life when we want to be successful, triumph, or achieve excellence. Those attendants were successful, exceptionally powerful women who worked their butts off to rise to such excellence. I was impressed.

Closing in on Los Angeles, I got up to use the tiny micro toilet airlines call a bathroom (I submit such containers were created by a man who stands to pee). Confronted by the blaring, all-too unflattering, if not nauseating lights, I appeared to myself in the mirror in worse shape than I had imagined… “Maybe I should wash my arm pits, or at least put on some fresh makeup.” I mused.

“Naaaaaagh!” I settled for brushing my teeth. I had accomplished my work overseas with the Military and now that my work was done, I was exhausted and ready to get home to rest. Yet, even as I stood there melting away, I was invigorated. I was ready to breathe in what I had unexpectedly learned while I was away.

So what do flight attendants with sweet pink or purple scarves, wilted lettuce, and the Meridian divide have to do with this article? It’s the difference between night and day; yesterday and today; a demarcation of East and West; and a strong metaphor for who we are and who we want to be.

My trip to Okinawa and Tokyo was a good one. I screened two of my films and spoke to military families about the spiritual nature of raising kids with special needs. When I finished my last workshop I was satisfied and felt empowered.

While there, I met wives and enlisted women in the Army and Marines. These were incredibly powerful women (with a sprinkling of men) who have kids with special needs. In getting to know them and their stories, each one struck me as brave beyond imagination. Despite their struggles to raise kids under the most extreme of circumstances – in many cases with a deployed spouse off in Iraq, Afghanistan, and other strategic place in between – they show up in everyday life as heroes. Not just as mothers with challenging circumstances mind you, but in the courage they demonstrate daily in sacrificing so much for their families and for our country.

This got me thinking. How about me? For what am I proud? How brave am I? How willing am I to go above and beyond? How awake I’ve been recently? The answer is not as much as I would like to be. Certainly less than what I expect from myself. Simply put, I had not been as powerful in my choices as I wish to be.

I have to admit recently I have allowed myself to forget ritual daily affirmations of gratitude and acts of courage. From the war I was putting out of my mind; the economic worries I let slip into my consciousness; to the comfort of sleepy, safe Thousand Oaks, I have been more focused on my own family issues than on giving and being courageous in the broader fabric of life and country. I have not been completely asleep as I live my life, but have been sleepy for sure.

I have worried about my eldest son who has had a tough time lately as he journeys into adulthood. I guess I thought with all the tools I had provided him, that he’d pass some magical line – his own Meridian divide – into adulthood where his autism would be less and less an issue. I have felt guilty that I have not been there enough for my youngest son as much as I would like as he ventures into high school next year. Worries about my house, its need for repairs, weeds growing taller on the side of the house, filing my (late) taxes, and recovering from my divorce (bla, bla, bla) had me in a state of “when” as I was missing “now.”

My work with military moms opened my eyes. Crossing the Meridian detailed my focus. Since coming home, I have chosen to “remember what I tend to forget.” That is to have more courage and daily practice in consciously choosing faith. I am remembering to remind myself on a daily basis (a two-part process remembering to remember) what I forget everyday: that this is the only moment I have.

AND SO, I STAND FOR:

Illumination over darkness
Excellence over average
Power over servitude
Possibilities over lack
Peace over war
Love over hate
Acceptance over judgment
Safety over fear
Passion over pain
Human rights over silence
Green planet over brown bags
Ghandi over oppression
Children always first
and occasionally…clothing instead pajamas!

Recently I read Marianne Williamson’s book “The Age of Miracles.” I hear Marianne is a new resident of our town. As a powerful spiritual teacher and author, we are lucky to have her energy amongst our midst.

The Age of Miracles is about the need for global transformation, change, and personal awareness of our personal power as we (women) get older. The purpose of her book is to psychologically and spiritually reframe this transition so that it leads to a wonderful sense of joy and awakening.

And this my girl-power-Goddess friends is the Meridian divide. It is the difference between who we are and who we want to be; our ability to be awake in our lives or slumber in the midst of its unfoldment. It is a call for transformation to reveal our truer selves; a call to personal power.

We are all frail to a point in our lives. It is so easy to allow the trials of the day become creepy crawlers in the night. And so I challenge you too to ask yourself daily “Who do I choose to be today?”

As for me, I made an appointment with my tax guy, am clearing out the weeds in my side yard, putting a fresh coat of paint in my son’s room, and tomorrow, I’m going out to buy myself a new pair of high heels. It’s also time to get fresh and sexy!

Thankful for Autism

Truth be told, though autism turned my life upside down, it also right-sided me.

Before autism came knocking at my door, I was a 28 year old woman with little connection to my fellow beings. I was out for myself. Young and spirited, I lived the fast life in Hollywood, and had a good job that gave me ample room to think only about myself and material things.

Though I had suffered great loses in my early years – my husband died, a stint in rehab, and moving forward from a fairly crappy childhood, those losses only fueled my need to think only about myself and not so much about others around me.

And then came Taylor. He was born on Christmas Eve., 1988. Born one month early, he was a ginormous baby. Six days (yea count ‘em) of induced labor, they pumped enough Pitosin into me to induce several labors. But for six days he would not come into the world. He simply was not ready. Can’t say I blame him – he was cozy in my womb, but Preeclampsia wreaked havoc on my body thus inducement was the only remedy.  In retrospect, why they waited six days before performing a c section  is beyond me. But at the time I just thought they were giving me the opportunity to have a natural childbirth – which I really wanted so I went along. But natural childbirth would not be my fate. Instead, they took him by c section on the 6th day.

Some people say it is immunizations that caused autism in their child. I kNOW it was the toxin of Pitosin for me and Taylor.

By the time Taylor was 4 months old I knew there were problems. Actually my doctor knew well before then, but I was in denial and looked for every reason to disbelieve.

“It’s because he’s a boy – they develop slower”

“I’m a first-time mom, what do I know about a baby’s development?”

“He’ll grow out of it.”

These are the things I told myself – and doctors were all too happy to support those notions – yet something was definitely different about this child.

Taylor and I would visit dozens of specialists over the years; the best in the L.A. area. But it would not be until after the DSMIV was rewritten that he would finally, at 6 years old, be diagnosed at UCLA with autism.

“There’s good news and bad news…” Dr. Sammons said. “The good news is that we now know what’s wrong with Taylor.” The bad news is that it’s called autism and he will have it for the rest of his life.”

My heart stopped and then my body relaxed. So that’s what we were dealing with. Hmmmmmmmmmm. I call those the dark ages of autism when Rain Man was our only popular reference. Not a whole lot of knowledge back then about the higher functioning version of the disorder.

And so it was that we met autism and autism met us.

I had experienced a spiritual awakening when Taylor was a year and a half when a neurologist told me he might never walk or talk. Somehow those words enabled me to meet my own maker and find acceptance that my life with Taylor would be different than the one I signed on for. I released and learned to love my son unconditionally (more about that in a future blog), but the news of autism was actually, in the end, music to my ears.

At least now I knew what we were dealing with. The devil you know is better than the one you don’t so-to-speak.

Autism has been in my life for nearly 21 years. Because I don’t get to make up the rules and autism created the rules for me, I had to learn to be a different version of myself. I was still the wacky artist I had always been; still a freebird in my own way, but I was able to become the woman I always wanted to be. A grown up, responsible woman with more interest in my fellow man, and certainly more interest in other children than I had ever known.

Autism taught me how to love others in a way I had never been taught as a child. Autism taught me patience I never possessed. Autism taught me to live more passionately and with more focus and purpose. Autism even gave me a new career, one I love as opposed to the one I used to have that I didn’t love so much.

Autism taught me that being humble is not humiliation – a lesson I needed to learn.

So today, this Thanksgiving day on the eve of my son’s 21st birthday, I am here to say I am thankful for autism.

I know at the end of days when I see my life flash before  me as I leave this earth for other destinations unknown, that I have made a difference. I have made a difference in my work; a difference in my child; but perhaps more importantly to my worldly lessons, I have made a difference in my own heart and mind, a difference that only autism could have provided.

Yes, I am thankful for autism.

Gobble, gobble, and God bless.

DSM V – URGENT we pay attention to proposed changes in diagnostic criteria

VIP: Autism diagnostic criteria on the diagnostic manual’s Web site in January will invite comment from the public.

I am reprinting below, a recent article by Claudia Wallis regarding the experts who are currently in talks to revise psychiatry’s diagnostic manual (DSM V) and whom preliminarily have proposed to eliminate Asperger’s and PDD-NOS from the new edition, due out in 2012.

Parents, professionals, self-advocates, friends and others need to get involved to have our opinions heard. If we do nothing, will be at the mercy of the bureaucrat’s decision to be made for us!

As for me, based on preliminary readings, observations, and interpretations, I am leaning toward a no vote on this elimination. I feel that many will be left out in the cold, and that the elimination of Asperger’s, for instance, will lead to further lack of services for this viable and important subset.

Please get involved and let me know what you think!

A Powerful Identity, a Vanishing Diagnosis

It is one of the most intriguing labels in psychiatry. Children with Asperger’s syndrome, a mild form of autism, are socially awkward and often physically clumsy, but many are verbal prodigies, speaking in complex sentences at early ages, reading newspapers fluently by age 5 or 6 and acquiring expertise in some preferred topic — stegosaurs, clipper ships, Interstate highways — that will astonish adults and bore their playmates to tears.
In recent years, this once obscure diagnosis, given to more than four times as many boys as girls, has become increasingly common.

Much of the growing prevalence of autism, which now affects about 1 percent of American children, according to federal data, can be attributed to Asperger’s and other mild forms of the disorder. And Asperger’s has exploded into popular culture through books and films depicting it as the realm of brilliant nerds and savantlike geniuses.

But no sooner has Asperger consciousness awakened than the disorder seems headed for psychiatric obsolescence. Though it became an official part of the medical lexicon only in 1994, the experts who are revising psychiatry’s diagnostic manual have proposed to eliminate it from the new edition, due out in 2012.

If these experts have their way, Asperger’s syndrome and another mild form of autism, pervasive developmental disorder not otherwise specified (P.D.D.-N.O.S. for short), will be folded into a single broad diagnosis, autism spectrum disorder — a category that encompasses autism’s entire range, or spectrum, from high-functioning to profoundly disabling.
“Nobody has been able to show consistent differences between what clinicians diagnose as Asperger’s syndrome and what they diagnose as mild autistic disorder,” said Catherine Lord, director of the Autism and Communication Disorders Centers at the University of Michigan, one of 13 members of a group evaluating autism and other neurodevelopmental disorders for the manual.

“Asperger’s means a lot of different things to different people,” Dr. Lord said. “It’s confusing and not terribly useful.”

Taking Asperger’s out of the manual, known as D.S.M.-V for the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, does not mean the term will disappear. “We don’t want to say that no one can ever use this word,” Dr. Lord said, adding: “It’s not an evidence-based term. It may be something people would like to use to describe how they see themselves fitting into the spectrum.”

But the change, if approved by the manual’s editors and consultants, is likely to be controversial. The Asperger’s diagnosis is used by health insurers, researchers, state agencies and schools — not to mention people with the disorder, many of whom proudly call themselves Aspies.

Some experts worry that the loss of the label will inhibit mildly affected people from being assessed for autism. “The general public has either a neutral or fairly positive view of the term

Asperger’s syndrome,” said Tony Attwood, a psychologist based in Australia who wrote “The Complete Guide to Asperger’s Syndrome” (Jessica Kingsley Publishers, 2006). But if people are told they should be evaluated for autism, he went on, “they will say: ‘No, no, no. I can talk. I have a friend. What a ridiculous suggestion!’ So we will miss the opportunity to assess people.”

The proposed changes to the autism category are part of a bigger overhaul that will largely replace the old “you have it or you don’t” model of mental illness with a more modern view — that psychiatric disorders should be seen as a continuum, with many degrees of severity. The goal is to develop “severity measures within each diagnosis,” said Dr. Darrel A. Regier, research director at the American Psychiatric Association and vice chairman of the diagnostic manual’s task force.
Another broad change is to better recognize that psychiatric patients often have many health problems affecting mind and body and that clinicians need to evaluate and treat the whole patient.

Historically, Dr. Regier said, the diagnostic manual was used to sort hospital patients based on what was judged to be their most serious problem. A patient with a primary diagnosis of major depression would not be evaluated for anxiety, for example, even though the two disorders often go hand in hand.

Similarly, a child with the autism label could not also have a diagnosis of attention deficit hyperactivity disorder, because attention problems are considered secondary to the autism. Thus, they might go untreated, or the treatment would not be covered by insurance.

The new edition, by contrast, will list not only the core issues that characterize a given diagnosis but also an array of other health problems that commonly accompany the disorder. For autism, this would most likely include anxiety, attention disorders, gastrointestinal problems, seizures and sensory differences like extreme sensitivity to noise.

Parents and advocates have been clamoring for an approach that addresses the multiple health problems that plague many children with autism. “Our kids will do much better if medical conditions like gut issues or allergies are treated,” said Lee Grossman, president of the Autism Society of America, a leading advocacy group.

The new diagnostic approach addresses another source of confusion: the current labels may change over time. “A child can look like they have P.D.D.-N.O.S., then Asperger’s, then back to autism,” Dr. Lord said. The inconsistent use of these labels has been a problem for researchers recruiting subjects for studies of autism spectrum disorder.

And it can be a problem for people seeking help. In some states, California and Texas, for example, people with traditional autistic disorder qualify for state services, while those with Asperger’s and pervasive developmental disorder do not.

A big challenge for the diagnostic manual team working on autism is how to measure severity in a condition that often causes a very uneven profile of abilities and disabilities. Mr. Grossman gives the example of a woman who serves on an advisory panel to his organization. She is nonverbal and depends on an electronic device to communicate, is prone to self-injury and relies on a personal aide. And yet “she’s absolutely brilliant, she runs a newsletter, and she’s up on all the science,” he said, adding, “Where would somebody like that come out on the rating scale?”

Recent books by people with Asperger’s give insights into the workings of some oddly beautiful minds. In “Embracing the Wide Sky” (Free Press, 2009), Daniel Tammet, a shy British math and linguistic savant, tells how he was able to learn enough Icelandic in a week to manage a television interview and how he could recite the value of pi to 22,514 decimal places by envisioning the digits “as a rolling numerical panorama” of colors, shapes and textures.
In “Look Me in the Eye” (Crown, 2007), John Elder Robison describes a painfully lonely childhood and an ability to look at a circuit design and imagine how it will transform sound — a talent he used to invent audio effects and exploding guitars for the rock band Kiss.

Not all people with Asperger’s have such extraordinary abilities, and some who do are so crippled by anxiety and social limitations that they cannot hold down a job or live on their own.

Dr. Susan E. Swedo, a senior investigator at the National Institute of Mental Health who heads the diagnostic manual group working on autism, acknowledges the difficulty of describing such a variable disorder. Dr. Swedo said the plan was to define autism by two core elements — impaired social communication and repetitive behaviors or fixated interests — and to score each of those elements for severity.

The trick is to “walk the tightrope of truth,” Dr. Swedo said, between providing clear, easily used diagnostic guidance to clinicians and capturing the individual variation that is relevant to treatment. “People say that in autism, everybody is a snowflake,” she said. “It’s the perfect analogy.”
The proposed elimination of autism subtypes comes at the very moment when research suggests that the disorder may have scores of varieties. Investigators have already identified more than a dozen gene patterns associated with autism, but Dr. Lord, of Michigan, said the genetic markers “don’t seem to map at all into what people currently call Asperger’s or P.D.D.”

Nor have many of these genes been linked to distinct sets of symptoms. Until research can identify reliable biological markers for autism subtypes, Dr. Lord and other experts say, it is better to have no subtypes than the wrong ones.

In interviews, people with Asperger’s and mild autism were divided on the prospect of losing the label. Temple Grandin, a Colorado State University animal scientist who is perhaps the best-known autistic American, said Asperger’s was too well established to be thrown overboard. “The Asperger community is a big vocal community,” Dr. Grandin said, “a reason in itself” to leave the diagnosis in place. “P.D.D.-N.O.S., I’d throw in the garbage can,” she added. “But I’d keep Asperger’s.”
But some younger people involved in the growing autism self-advocacy movement see things differently.

“My identity is attached to being on the autism spectrum, not some superior Asperger’s identity,” said Ari Ne’eman, 21, an activist who founded the Autistic Self-Advocacy Network, a 15-chapter organization he has built while in college, adding, “I think the consolidation to one category of autism spectrum diagnosis will lead to better services.”

All interested parties will have an opportunity to weigh in on the proposed changes. The American Psychiatric Association is expected to post the working group’s final proposal on autism diagnostic criteria on the diagnostic manual’s Web site in January and invite comment from the public. Dr. Swedo and company are bracing for an earful.

Correction: An earlier version of this article incorrectly said Temple Grandin was a professor at the University of Colorado.

Dancing with Destiny

“We’re just not sure what’s wrong with him.” Another so-called expert tells me Taylor has “non-specific developmental delays”; or PDDNOS. Yet another doctor says I am not properly bonding with my son and thus I am at the cause of his tactile defensiveness and emotional distress; a polite way of saying I am a refrigerator mother. He puts this in writing and I believe him.

Defensively, I retreat. I cannot bear another heartache. I fear my son will leave me and die like Chuck did. Losing my husband when I was 25 was a big blow, thus making the decision to become a single mother to “learn to love again” seems like a good idea.

As I live each day with my husband’s memory, I withdraw from Taylor ever so slightly. I am trying to do the right thing, but I live in fear. I have not yet adjusted to this life of uncertainty. This is not what I signed on for.

I love my child, but I do not feel the overwhelming joy of motherhood that other mothers coo about. Instead, in this my baby’s first year of life, with all the complications and uncertainty of exactly what is wrong, I feel fear, shame, terror, and anxiety as daily staples. I hug denial – quietly – silently. I am not aware that I am blind to my reality and have little if any faith. I just pretend to be strong, but I am deceiving myself. I tell myself “He’ll grow out of it. He’ll be okay.”
And then, in a single moment, I change forever. I am suspended above the examining room. I watch myself from above – as if in slow motion. I cannot believe the words I hear…” We just can’t say if he’ll ever walk or talk.” A new take, from yet a new doctor, about my son. I crash and burn all at once.

I hear the sharp sound of the white paper crinkling on the table, as Taylor wiggles about… “We just can’t say… “ These words reverb in my mind.

I am instantly sobered. I wake up to the reality that my child might never be so-called “normal”. I get it, loud and clear. I can no longer love Taylor from a distance. Denial is no longer an option. I must find a way to come to terms with his disability which until now I could only deny. And then, the miracle comes. It seems to happen in an instant.

I see with defined clarity that out of fear of losing my child, I’ve begun to give up on him. It is clear I must make a life altering choice to accept my child, or to continue to emotionally abandon him. And then, as if with the flick of a switch, in a newfound awareness, all fear and silent, quiet rage vanish.

After fumbling in the dark, some years later in May, 1995 – In what I call the “dark ages of autism” Taylor is diagnosed with autism.
2009

At 6’10, and nearly 21 years old, Taylor stands on stages around the world to share his strength and experience in living with autism. He shares his efforts to create our film, Normal People Scare Me, his attempts in self advocacy and job development, but more importantly, he shares pride in who he is, and who he has become: a young man with many facets – autism simply being “one of them” as he aptly puts it. He is quite a striking figure with his blonde gangly curls and quick smile, but moreover he is a philosopher of sorts.

After two decades of every sort of conventional therapy coupled with those I made up (out of my assets) using the arts to help him emerge from within his soft shell, Taylor speaks as if no barrier or challenge ever existed for him. And yet those challenges – the nuances of autism (the ones I live through everyday,) are ever-present in our world. In fact, I believe it’s fair to say that I see and experience more of the mysteries of autism in him than he does. Today at 20, I experience more of Taylor’s “ISM” than I did when he was 17 or 18.

People say “Oh my gosh Keri, I can’t see the autism.” And that’s the challenge of the “ISM.” It is ever-present, ever-maddening, and as ever-demanding in our house as it ever was, and time does not simply erase our fate. Despite the light, we experience the dark side of autism’s challenges that defy gravity. Taylor’s executive functioning and administrative skills are woefully lacking and that is simply how it is.

Last term, at 19, Taylor attended community college. He was brilliant in his film classes, participating and showing up everyday for class. He was excited to participate and be a part of college life. And yet he failed all five classes. There is no IEP to guide a young person in college. The homework was an impossible task for him to keep up with and so he flailed and flailed. He also tried his hand at semi-independent living as well. During a year away from home, he learned to hone his skills in cooking, shopping, and performing household tasks. And then through a series of events, there was a break-down in communication. Staff became verbally abusive toward him because they did not understand the nuances of autism and his inability to “comply.” Eventually Taylor moved back home where he now receives 16 hours a week of in-home supports to help him with job development, social skills, executive functioning, and independent living skills.

From these personal experiences, and learning about others in the same boat, I realize that as a society we are woefully ill-equipped to meet the train at the station. Our kids are aging out into adulthood with few resources to meet them at the station.

As I travel with my work and meet families all over the world, I see Taylor and I are not alone. Our story is hardly unique. And so I am on a fact finding mission to learn more about what is working and what is not working for families with kids transitioning to adulthood. My goal is to advocate all the way to Washington to redefine “how” we meet the challenges and needs of this vast population to become more inclusive, provide comprehensive services and supports, and meet the needs of this ever-growing population.

If you’d like to share your story with me, please tell me what is working and what is not working in your child/adult’s life, in your community, and in your efforts to help your child make the transition to adulthood.

AND SO WE DANCED…

This past weekend I attended a fundraiser with my son. I was shocked he wanted to go. Taylor usually prefers to stay holed up in his room, but lately, he wants to get out and be a part of the world which makes me very happy. He wants to make new friends but finds it extremely challenging. He is simply not sure how to go about it.

All dressed up in a tuxedo, and looking very sharp, I was proud to have him on my arm. When we arrived at the event, I asked him (okay, I begged him) to have a dance with me. He flatly and firmly said “no!”

I was disappointed, but I accepted his refusal. The evening was wonderful. I pranced around, danced, ate, and generally made the rounds meeting new people and sharing with old friends. Then, toward the end of the evening, came the band’s rendition of Louie Armstrong’s “What a Wonderful World.” This was our song at the camps I facilitated for five years in my community – a very poignant memory for me; and apparently Taylor too.

As the band continued “and I think to myself…” Taylor grabbed my hand and pulled me to the dance floor.” He smiled (down) at me – he is so darned tall – smiling at me. And he sang… “What a wonderful world.”

And so my son danced with me on his own terms. I held him so close not wanting the moment to ever fade for I am a proud mother like you…

“Yes I think to myself, what a wonderful world… Oh yea………….”

Reverently Irreverent Birds with a Twist

REVERENTLY IRREVERENT BIRDS

Lyrics to Mary Poppins’ “Feed the Birds” with a reverently irreverent metaphor to autism and our world’s life with autism.

My comments/analogies are included after each line(s).

INTRO: Sometimes a person we love through no fault of his own can’t see past the end of his nose…

FEED THE BIRDS

Early each day, to the steps of St. Paul’s, the little old bird woman comes.

This is me; this is you. Though we are young, middle aged and old “bird women and men.” Each day we say “I cannot die yet. My child needs me” So we walk up the steps as we must.

In her own special way, to the people she calls: “Come buy my bags full of crumbs…

Can someone; my child’s teacher, aide, administrator, coordinator, service provider, insurance company, day staff, family, community, country, government, world – help me to help my child? Please buy my bags of crumbs. Though my crumbs are not the norm, they are of your world and mine even if it is not what we chose. I resonate that my child is, perhaps a burden on society; it’s pockets, it’s priorities, it’s chaos. But what will become of society if my child multiplied by millions becomes YOUR future society with no supports? I fear you will walk away and say it is solely my fault. Perhaps… Perhaps not…

Come feed the little birds, show them you care, And you’ll be glad if you do.

Pay it forward. Every twenty minutes, a child is diagnosed with autism. My child has been in your child’s class, his extra curricular activities (if you let him), his church, his temple, his workplace. My child has needs beyond what I expected to take on in this lifetime; certainly more than you can accept. I am your neighbor, your daughter or son, your cousin, your co-worker, your friend, acquaintance. I am the woman you read about in the papers and see on prime time TV. Perhaps I am you. I am everywhere – yet, maybe you don’t yet know me because you were graced with a typical child. Please take a moment to get to know my child. You will find he is magical, and has the essence of the pure love that you and I dream of.

The young ones are hungry, their nests are so bare, All it takes is tuppence from you. Feed the birds, tuppence a bag Tuppence, tuppence, tuppence a bag.

Tuppence: A two cent piece; the coins you leave at the cash register in the small tray on the counter; a donation to autism awareness. My child’s nest is often bare unless others fill it. Every day I do the best I can. My son is 20 and today I “lost it.” Today we were “hungry” We were both weary. Life with autism is so hard. My man-boy cannot do for himself what is necessary to find his way alone in the world at this time and place. If you give a tuppence – not to him – but to the cause for others – our world might just be changed forever because of you. What would it be like if YOU were the one who made that happen? If YOU payed it forward, and told two friends. Hmmmmmmmmmmmmmmmmmmmmmmm

“Feed the birds,” that’s what she cries, While overhead her birds fill the skies.

Our children are not of this world per se and yet they are more of this world than you and I might ever be… While they breathe the oxygen in the air as you do, they do not see the birds that fill the skies in the way you do. Our differences are what make us extraordinary. Their differences are what make them “special.” Please stop to look and see the extraordinary face and mind of my child as he fills the sky. He is weird, bizzaar, strange… How wonderful for him.

All around the cathedral, the saints and apostles Look down as she sells her wares. Although you can’t see it, you know they are smiling each time someone shows that he cares.

You were made for something great and I have no doubt that you follow your own path righteously and with intention. Will you stop, however, to look down as I (we) sell our wares? We are selling autism – for we fear – in this fast paced, fast food world because we cannot do it alone. We need YOU. We know that you do truly care – even if you do not yet know it yourself.

Though her words are simple and few, Listen, Listen, she’s calling to you. Feed the birds, tuppence a bag, Tuppence, tuppence, tuppence a bag.

Well, okay, maybe our words are not so simple – but the truth is always simple. Truth is what it is. We are separate to the extent we divide. We are together to the extent we unite. Imagine if we all came together and ego was no more. Might we end war? Might we take care of one another? Might our children be a contribution to our futures and not a burden?

Until that day comes, I encourage you to take a stand to unite and become as one. On average one in ten individuals have a disability. Every twenty minutes a child is diagnosed with autism. Might it tomorrow be your child, your grandchild, will you then hear our call to feed the birds?

And there but the grace of GOD, walk I.

In peace and blessings I say, FEED THE BIRDS

Reverently, Irreverent Autism

If I don’t laugh, I’ll cry. My son, Taylor is now 20 years old. We’ve lived with autism everyday for approximately 7,548 days or 181,152 hours as of this writing. There have been times when I thought I could not handle another moment of the insanity that the baffling disorder of autism creates in my life. BTW, I use the word “insanity” as slang and not as literal, lest I enrage someone with my political non-correctness.

Other days – most days – I experience my blessings, the beauty of my son’s innocence and greatness, and more ofeten than not, I thank God for the road I’ve been “given” to travel with this rare being.

You know, the early years were hard as heck. Not a lot out there in the dark ages of autism, way back before the DSMIV was rewritten to include so-called “high functioning autism”. In fact the best of the worst advice I got was that I was a refrigerator mother (lack of emotional support for my son) and that I had caused his emotional distress because of my lack of parenting skills. Now that was a hard pill to swallow, but don’t think for a moment it did not inspire me to “show them”. May I call them uninformed? Or just simply say their IQs did not match up with excellent EQs? Still, they motivated me to be more, do more, and learn to live in gratitude and exploration of our lives with special needs.

Some of you know my work in film. NORMAL PEOPLE SCARE ME; THE SANDWICH KID; and ARTS. For over 11 years now, I stand (sometimes with Taylor and my son Jace) on stages around the world and share my (our) experiences, strength and passion for the field I love – disabilities and what I call: “what the heck now?”

In my work, I provide strategies and free and low cost “power tools” to participants in seminars and workshops, to literally alter and transform lives. But I’ve got to say, every athlete needs a coach, and this athlete is no exception! I am currently reaching out to those who can help me. We cannot do it alone – though my past tells me this is safer which is actually a flaw I am working on. That is: asking for help.

Ultimately, I am no better than anybody, and certainly no worse. I am just a mom doing everything I can to make this life something I will be proud of as one day I say my goodbyes – yet perhaps leave a legacy of something greater than my ego, and my own “story.” I hope so.

But it aint easy!

With 20 years behind me to try and figure out this thing called autism/disabilities (in general), and with all I know and have created (some really good stuff there) I’ve got to tell you, my “high functioning” son at 20, appears to me to be more on the spectrum now than when he was, say 16 or even 18. The adult world is tough and all the rules change. There is no IEP to protect everyday education, and frankly, colleges (overall) in this country don’t give a shit about your kids differences. They are simply on their own.

There are not a lot of resources out there once our kids hit the age of majority. And their time-delayed emotional content is often like dealing with a 14 year old even though as an adult they can tell you to take a hike if you don’t have a conservatorship. It’s a daily juggle to honor their adulthood, yet to help them be an adult when they cannot segue society on their own (yet). A high wire act, actually.

I think of Lois Lane and Superman when Superman says “Don’t worry, I’ve got you.” and Lois cries out in fear “Yes, but whose got YOU?”

I love my son. I love my work. I love all of the people who have come into my life – as we are all in this together, but somedays, I just need a coach to be there for ME!

I am off to a number of speaking engagements this Fall. I am glad for the privilege of sharing with others. All I need to remember are the words my son said to me a couple of years ago:

“Mom, if you’re not vulnerable, your audience can’t hear you.”

So I’ll take his advice and just be me; the reverent and irreverent Keri, who knows enough to be dangerous and hopefully revolutionarily efficient in changing a small place in this world for those with differences.