How a 17-Minute Phone Call With Temple Grandin Changed Me

temple_grandinTemple Grandin will speak at the Von Braun Center Concert Hall on Tuesday, March 7, 2017, at 7:00 p.m. Tickets are $35.00 and can be purchased here. The evening will begin with a book signing at 5:30 – buy one of her books on site or bring your own copy. Her speech will begin at 7, followed by a Q&A with representatives from five organizations who are working to expand opportunities for people with autism spectrum disorders and other diagnoses into our workplaces and our community. If you haven’t seen it before, watch Temple’s Ted Talk here.

When my phone rang, I was unloading groceries from my car. I didn’t know the number and normally would have let the call go to voice mail until I could finish what I was doing. But for some reason, I shifted the groceries sacks and said, “Hello?”

I knew who it was after she uttered about four words.

Temple Grandin was on the other end of the phone line.

I panicked. I was scared, intimidated and slightly star-struck. I’ve been watching endless hours of Temple’s speeches, read her books on autism and am breathlessly awaiting her visit to Huntsville next week. And here she was, on the other end of the phone, asking me what Huntsville is like and what we hope to accomplish after her talk.

I was intimidated to talk with her, not because she has autism but because she is one of the most accomplished women in the world. Time Magazine listed her among the 100 Most Influential People of 2010 thanks to her achievements as a scientist and advocate for people on the autism spectrum. A biopic about her life, Temple Grandin, won multiple Emmy© Awards. She’s written dozens of books and is recognized the world over for her brilliant design innovations used extensively by cattlemen and ranchers around the globe. I’ve talked to a few celebrities in my work at Merrimack Hall but none have left me as tongue-tied and awe struck as Temple Grandin.

I’m one of those “social yackity-yacks” that she references in her speeches. I immediately began trying to moderate my speech…the tempo, the volume, the tone. I thought of all my friends with autism who have given me feedback, sometimes verbal and sometimes nonverbal; feedback that tells me my delivery can be hard for them to take. They tell me, “Slow down.” “Be still while you’re talking to me.” “Keep your hands to yourself.” I tried to temper myself so that I could communicate effectively in a manner that I assumed she would prefer.

“Different, not less,” is what Temple says. I’ve always assumed she was referencing people with autism and other intellectual disabilities, that it was them who are different but never less. But in the first few minutes of that phone call, I realized it is me who’s different, not Temple.

I use 20 words when five would suffice. I muddle my message with excessive body language, intense eye contact, rapid speech and frequent, unexpected changes in topic. I dilute the effectiveness of my communication by going off on tangential rants, mixing emotion with facts when trying to persuade others or win them over.

temple-quote

Halfway through our 17 minute phone call (yes, I checked the phone log to be sure how long I had actually been able to talk with her), I started to relax. She asked me lots of questions about our community and the purpose of our event. When I told her that we hope to motivate and inspire our community of thought innovators to find new ways to integrate people with autism spectrum disorders into our workplaces, she was enthusiastic and excited. She told me, “Good job!” when I described the panel of local scientists, advocates and employers who will be asking her questions after her speech. She said, “I look forward to meeting you,” when the call was coming to an end. When we hung up, I was elated…I did it! I managed to carry on a conversation with someone I revere and won her over despite my communication disorder.

Because yes, I’m the one with the communication disorder, not Temple. She has learned, after years of diligent practice and observation, to tailor her preferred communication style to match what we call “normal.” She has mastered the art of listening and uses language in a measured, appropriate and careful way that allows her to connect without nuance or hidden agendas or emotional baggage that should have no place in our communication with each other. She says what she means and she means what she says.

I can’t say that about myself all the time, as my communication is too heavily influenced by ego. I’m too busy preparing my response to someone to truly listen to what they are saying in the moment. I have trouble zoning in on the most important point of whatever I’m saying because random thoughts and subtle manipulations are constantly zigzagging through my brain, bursting through my filters and muddying the water of my point. I rely on emotion, not facts, too often. I tell myself that I’m an effective speaker because I am exceedingly verbal but 17 minutes with Temple Grandin left me with the stark realization that it’s not Temple who’s different…it’s me.

Temple says, “Different…not less.” I always applied that sentence to the people with special needs I work with, never to myself. But the call with her showed me that deciding who and what is “different” is malleable and depends on your perspective. To me, people with autism are “different” but to them, I’m the one with deficiencies. When you boil it down to its most elemental message, “Different…not less,” applies to all of us. Each of us is different from the other and none of us is less.

For 10 years now, I’ve said that we are all more alike than we are different and that we all have special needs. Thanks to one conversation with Temple, I realize that there’s so much more to it than that. We are ALL different in subtle and obvious ways. Each of us is born with our own unique set of challenges and dysfunctions that are further ingrained through our social interactions. Each of us has a particular slant through which we see each other, the world and our places in it. It will be a better world when we all learn that Temple isn’t different, nor is anyone with a physical or intellectual disability.

WE ARE ALL DIFFERENT. AND NONE OF US IS LESS.

What problems could we solve if we approached everything with that mindset? What new friends could we make? What new ways of doing things or what new insights could we uncover if we all just accepted the reality that no two of us are the same and none of us is perfect. No one is right and no one else is wrong in their approach or thought process or communication style because we are all unique, born exactly the way we were supposed to be.

 

I am different. And so are you. But I am not less and neither are you. If I learned this much about myself from 17 minutes with Temple, I can’t wait to learn even more powerful insights from her next week.

temple-grandin-cow

 

 

On Taking A Child With Autism To Public Places

You’ve probably heard about the Broadway actor, Kelvin Moon Loh, who took to his Facebook page to state his dismay over the behavior of the audience at last Wednesday’s matinee of The King and I. If you haven’t, you can read all about it here.

Kelvin Moon Loh...my newest hero!

Kelvin Moon Loh…my newest hero!

In a nutshell, a mother took what Loh assumes was her autistic son to a matinee of the Broadway hit and during a particularly intense scene, the child had some sort of outburst. Audience members turned on the mother, some saying things like, “Why would you bring a child like that to the theatre?” The show continued, despite the interruption caused by the child and subsequently by the audience but the actor was clearly upset over how the audience treated the mother and the child.

Children’s misbehavior, and their parents’ reaction to it – or lack of reaction to it – was in the news back in July, when the parents of a toddler went to a Maine diner. The diner owner reportedly screamed at the toddler and threw the family out of the restaurant because the toddler was disturbing other customers. The social media maelstrom that resulted from that story had people taking sides about when and where it’s appropriate to take small children. Thousands of people commented on this story, some stating that children shouldn’t be taken to restaurants at all, others believing that children should be welcomed in public places regardless of their behavior, and pretty much everyone who weighed in on the matter acted like an asshole.

Who knows what really happened in that diner but we should all be able to agree that there are certain types of restaurants where we should not take our children – the white tablecloth, expensive kind for sure – and others (like diners) where children should be welcomed, even when they cry or throw sugar packets or act like heatherns. Whatever happened, the story stirred up some powerful opinions on both sides of the argument that mostly left me glad that my children are now adults (although that does not necessarily preclude them from acting like assholes in restaurants).

This theatre matter is different, though. First of all, a ticket to a Broadway show is exorbitantly expensive. No one wants to have their Big Deal Moment ruined by someone else’s rude behavior…like the time Alan and I went to a Broadway matinee with another couple and the man bought M&M’s at intermission. This highly-educated, rarified friend of ours sat down for Act II and proceeded to extract one M&M at a time from the package, as opposed to pouring a few at a time into his hands, which resulted in a loud and annoying crinkling noise every few seconds. I was cringing but trying to ignore it when the man on the row in front of us turned around and hissed, “Would you stop rattling that damn paper?” Of course, when he said this the ripple of who was affected by our friend’s candy munching spread even further.

Or what about cell phones in the theatre? How obnoxious is that? Celebrities like Madonna have been chastised for texting during Broadway performances. Patti LuPone stopped a performance to rant at one cell phone user and swiped the cell phone of another. Then there are the show talkers (who whisper/talk to each other during performances), the nitwits who repeatedly get up from their seats and the jerks who ignore the pre-show requests to refrain from flash photography. Clearly, it’s not just children who can disrupt a performance.

There are two things about The King and I story that bother me. The first is that the show is billed as “family friendly” which I take to mean that children are welcome. And anytime you invite children to attend something, you have no way to know what to expect. Take a child to a dark theatre, put live action on the stage in front of them and who can predict what might happen, even from the most well-behaved child. Don’t bill your show as “family friendly”- and don’t buy a ticket to a “family friendly” production – if you’re not prepared for anything from screaming fits to poopy diapers.

Kelli O'Hara and Ken Watanabe on Broadway

Kelli O’Hara and Ken Watanabe on Broadway

The second thing that bothers me about this story is more important, I think, and it’s this…how did anyone know this child has autism?

I know a lot of people with autism and most of them do not have any physical characteristics that give an indication of their diagnosis. Did the audience assume the child had autism because of the nature of his outburst? Because I know plenty of children who don’t have a diagnosis of autism who can behave atrociously.

And more to the point, what difference does it make if he had autism or not? He was a child, taken by his mother to an appropriate event, a child who had a strong negative reaction to something that occurred on the stage. Any child could have reacted in the exact same way. Would the audience have been more compassionate towards a “normal” child?

kid with autism

Many parents of kids with autism have told me that one of the most challenging aspects of their child’s diagnosis is the fact that they appear to be typical kids, making their inappropriate behavior more difficult for strangers to understand. Many of these parents have told me they’ve been publicly shamed or chastised for not properly “disciplining” their children too many times to count.

“Can’t you make her behave?” they’ve been asked or “If he was mine, I’d whip him” others have said. “If my child had an obvious physical disability or a condition like Down syndrome, people might be more understanding of his odd behaviors or frightening outbursts,” one parent told me.

Taking a child with autism to a public place can be torture – for the parent and for the child. No parent wants their child to be upset or to unintentionally upset someone else. Autism can hijack not only a child’s life but the life of their family as well.

So what are parents to do? Children – with autism or without – learn by doing so we have to take a risk and take them to that restaurant or that party or that musical.

We have to prepare them for what they can expect and we have to do our best to plan for every possible contingency.

We should remember the question Loh posed in his Facebook post…“When did we become so concerned with our own experience that we lose compassion for others?”

kids with autism

So, you can act like an asshole to someone who’s child is misbehaving because you assume they aren’t doing a good job parenting. Or you can be a human being and show some empathy.

And you can assume a child is autistic or you can realize that an autistic child is a child, first and foremost.

 

 

The Secret about Parents of Kids with Special Needs

 

Alisa and Anna Chilton

Alisa and Anna

I follow a lot of blogs. One of my favorites is Special Needs Mom, by a gifted writer named Suzanne Perryman. She posted an entry on April 14, 2013, that pops back up in newsfeeds occassionally and during the past week, I’ve noticed that several of the moms of students in my program have reposted it. Click here to read the post.

As I re-read this post, I realized that I know a secret about parents of kids with special needs, a secret they won’t tell you because they probably don’t even realize it …

The secret is that parents whose kids have special needs are brave.

What else do you call a person who has faced their worst fear and emerged changed for the better? In the past seven years, I’ve met hundreds of parents and I’ve only encountered one who was bitter, a young mom who’s daughter has cerebral palsy and who told me that her daughter was too disabled … more disabled than any other child and couldn’t possibly be part of my program. The rest of the parents I’ve met are … well, they are just brave. And brave people rarely tout their bravery.

They didn’t start out that way.

They started out on the road to parenthood just like I did … with a vision that did not include hospitals, therapists, resource classrooms. They were a couple with a shared dream of creating that perfect family that we all want. Maybe they imagined their child would be a great athlete or a great artist or a great engineer. While they were expecting, they imagined all those life events their child would experience … playdates, school plays, college, a wedding. For some of them, that imagining came to a halt during pregnancy, for others the end of the dreams didn’t come until later.

But at some point, life said to the parents I know:

“Sorry, you don’t get that dream. You better get busy trying to imagine a different one.”

And so that’s what they did.

 

Connor and Brian Furber

Connor and Brian

 

They’ve taken the disappointment, the fear, the anger that they must have felt and have turned the other cheek. They refuse to let anything negative shape the rest of their lives or cast a shadow on the lives their children will have. They were dealt a blow that must have laid them flat on their backs, but they’ve gotten back up again, put a smile back on their faces and they’ve re-imagined the future without rancor and without regret.

There must be times when the heartbreak returns. Maybe a girlfriend tells them about her daughter, who made the cheerleading squad or maybe their buddy tells them about teaching his son to drive – and there it is … that pain, that regret, that feeling of, “Yeah, that’s what I thought I’d be doing.”

I think bravery is doing something, even when you don’t want to or are afraid and never allowing yourself to become resentful about it. Which is exactly what the parents I know do.

I’ve experienced a miniscule taste of what it might be like. Austin began to lose touch with his classmates around 9th grade and for the rest of his high school years, we were caught up in the drama of drug addiction. A few weeks ago, I ran into the mom of one of his kindergarten classmates and was startled when she told me that her daughter had graduated from college back in May.

“Wait a minute,” I thought to myself. “If Austin hadn’t spent six years using drugs, he’d be graduating from college now?” For a brief time, I let myself think about all that we missed … prom, high school graduation, fraternities and campus visits.

And as I thought about those lost dreams I’d had for Austin, I wondered if I would have turned out like that one parent I met who was bitter that her child had cerebral palsy or if I would have been brave enough to embrace an unexpected and uninvited path.

Once I said to a parent, “I don’t know how you do it,” not realizing that this would be offensive to her. Parenting her child was not some onerous task, some hardship she had to endure … parenting her child was a gift in life.

Was she like that to start with, before she knew her child would have a disability?

Or did having a child with a disability turn her into a resilient and brave woman who could accept that she was going to have to travel a road she never asked to travel?

 

Ben, Carly and Gina Bender

Ben, Carly and Gina

 

Some of the bravest parents I’ve met are ones whose adult children have disabilities … those parents who insisted on bringing their children home from the hospital back in the days when doctors told them not to.

One father told me that when his son was born, in 1960, the doctor said,

“Put him in an institution. You’ll visit him once a week at first, then every six weeks and before you know it, you’ll never even remember you had him.”

Those parents brought their children home when there were no resources, no therapists or early interventions, when their children were not even allowed to go to school. I know so many parents who have retired and still have their children living at home and imagine that they worry every single day about what will happen if their children outlive them. But that doesn’t stop them from fully embracing the path life placed them on, despite what they might have imagined one day so long ago.

All I know to say is … that’s what bravery looks like.

The next time you see a parent of child who has special needs, remember this secret they will never tell you … when you see them in the grocery store or at your school or at your church …

You are in the presence of a person who is truly brave.

And the next time you are disappointed in something or life hands you an unexpected twist, and take inspiration from their bravery.

You Too Important

Katie and Carolyn have worked at Merrimack Hall for two years. When a business hires a person with special needs, they gain so much more than just an employee. Here are some things that business owners might not know about hiring people with special needs:

  • most people with special needs would be happy with a part-time job, not full-time
  • in some cases, people with special needs can be paid less than minimum wage; in all cases, they would much prefer to have some income rather than no income
  • job coaches are available to help train and supervise people with special needs, if your business is not able to do this
  • organizations like The Phoenix Corporation can come into your business and identify ways you could create meaningful jobs for people with special needs
Katie and Emma

Katie and Emma

There are many intangible benefits to having people with special needs on your payroll, such as the diversity and unique perspective they can bring to the workplace. Here are two examples of how Katie has had a positive impact on me at work:

Katie wears an insulin pump and each day after lunch, she pricks her finger, calls her mother to report the number on her pump and adjusts her insulin dosage. Without fail, once she receives her insulin, Katie goes into the lobby to sing a song. It doesn’t matter what’s going on in the lobby…it probably wouldn’t matter if the building was on fire. Nothing interrupts what we’ve affectionately come to call Katie’s “Sugar Song.” For about 20 minutes, she sings at the top of her lungs about anything and everything, but most often, the Sugar Song is about herself. Her songs have no set rhythm or rhyme and typical lyrics might be:

I so beautiful.
I so happy.
I love my cat.
or
I a princess.
I wear pink.
I the best worker.

Katie and Rachel

Katie and Rachel

I decided to try a Sugar Song for myself a few weeks ago. I was tense, worried about a grant deadline and acting a bit testy. So, I grabbed a Snickers bar from the concession stand and after I ate it, I sang – at the top of my lungs. I don’t know if anyone heard me or not but, like Katie, I decided I didn’t care. My lyrics, sung to the tune of “You Are My Sunshine” were:

I am amazing.
I’m so amazing.
I’ll get this grant cause I’m the best.
My mission is the
Most compelling
My grant will blow away the rest.

And it worked! I felt less anxious when I finished my Sugar Song. And low and behold, last week I got an email notifying me that I had indeed received the grant – a $10,000 grant to establish a leadership development program for our volunteers. Sugar Songs are going to become a regular part of my day from now on.

The second example happened a few months ago. Katie was eating lunch by herself in our kitchen and I was on a frantic search for something – don’t remember what. I darted past the kitchen table about 5 times, going into people’s offices, out the back door and in again, up to the lobby and back. Each time I passed the table, Katie offered me a different greeting.

Hi, Boss Lady!
or
You look cute, Debra!

I responded with appropriate comments but never slowed down until finally, Katie stood up from her chair and said:

Hey! Slow down! 

Of course, I obeyed. Then Katie said:

Why you hurry so much? You think you too important.

Well, that put me in my place. Why was I hurrying? Katie never hurries or rushes and neither should I. When I’m on some self-important mission, I’m not doing anything but stressing myself out – and probably stressing out those around me at the same time. Katie was right…I’m just not that important and neither is anything I have to do that requires me to hurry so much that I can’t stop and engage in a polite conversation with my teammate. Thanks to Katie, I’m going to slow down…and sing a song every now and then.

Katie and Me

Katie and Me

If you’re interested in hiring someone with special needs, I’d love to hear from you! I would be happy to connect you with resources to facilitate the hiring of someone with special needs. I can also recommend any of the dozens of adults in my program who would be thrilled to have a part-time job and who would bring enormous benefit to your business.

Warning: Thoughts on Labels

Atlanta Cami and money

Cami handing me the $2 she caught & donated to Merrimack Hall

Labels. They are everywhere we look…on our food, on our medicines, on our clothing. Labels are descriptive, informative, sometimes even life-saving but they are also limiting and narrow. They can help us navigate the world and they can help us make informed choices but labels also prevent us from forming our own opinions and being open to new things. When labels are assigned to people, they can predispose us to judgment and can prevent us from seeing someone for who they really are.

The students in my visual and performing arts programs have to live with labels that are assigned to them by our society…relatively innocuous ones like different, disabled or developmentally delayed and offensive ones like retarded, odd or weird. These labels are based on the diagnosis they’ve been given. Roughly 20% of the US population has special needs and for them, a diagnosis is a useful thing to have – a diagnosis gives them access to services that improve their lives, can prepare organizations like mine to meet their needs and can help educators assess them for appropriate placements. But the labels that accompany the diagnoses are never useful.

Our society claims to celebrate diversity, to embrace the differences between us and yet we rely on labels to categorize, stereotype and pigeon-hole each other. I want to know why. Is it just convenient? Does it make it simpler for us to avoid people or things that might make us uncomfortable? Do we label folks so we can decide who to let in and who to exclude from our lives?

I’ve had to learn a lot of acronyms over the past six years like PDDNOS – pervasive developmental delay not otherwise specified. This is a mouthful that basically means that a person is not developing at the rate of his or her typical peers and their symptoms don’t match up to any existing diagnosis. Some of my students don’t even have this diagnosis – some just don’t learn or develop the way most of us do and there’s no way to explain why. Not having a diagnosis presents its own challenges to my students and their families. Even one as vague as PDDNOS is better than no diagnosis at all.

Cami performing at our 2013 holiday showcase.

Cami performing at our 2013 holiday showcase.

Take Cami, for example. Cami is 14-years-old and has been with JSAP for five years. She attends an alternative school where she is in a classroom equivalent to a 5th or 6th grade class in a typical school. There is no medical explanation for the delays in Cami’s development so, like a lot of people, she falls into a category that’s basically like, “We don’t know what’s wrong, we just know that something is.” In the absence of a diagnosis, the labels kick in on overdrive.

I could use a lot of labels to describe Cami that tell you a lot about who she is – teenager; female; brunette; visual artist; stage performer. I can’t even let myself think of the negative labels that some people might use to describe or categorize Cami. I thought I knew Cami pretty well but last weekend I discovered something about her that I didn’t know – something that has given me a new, better label for Cami. Cami is a philanthropist.

Cami and her teammates in Project UP were in Atlanta at the NRG Dance Project Competition. During the awards ceremony at the end of the evening, NRG founders Nick Gonzalez and Rustin Matthew announced that they were about to do something unprecedented and exciting. The 200+ dancers who were sitting on the stage leaned forward in anticipation, holding their breath to hear what this great thing would be. Nick and Rustin told the kids to look to the ceiling and count down from five. After everyone counted down “5, 4, 3, 2, 1,” 2,000 $1 bills floated down from the ceiling! As it rained money on them, the dancers reached for as many bills as they could grab. No one was too aggressive about it but it was clear that all 200 kids on that stage sure did want to catch some of that free money.

When the competition was over and the last award had been handed out, Cami found her way to me, holding out two $1 bills and smiling sweetly.

“Wow,” I said. “Congratulations, Cami! I’m so excited for you that you caught two dollars!”

“I caught it for you,” Cami answered.

“For me?”

“Yes ma’am. I wanted to catch some money for you to put in the donation box at Merrimack Hall.”

Knowing Cami the way I do, I know it took a lot of guts for her to join in the fray and attempt to catch those dollars. I’m sure she was overwhelmed by the noise, the crowd, the other kids who were grabbing for the same prize she was. Other kids were probably trying to catch the money because it was fun, or because they are competitive, or because they wanted to buy a frappe at Starbucks. Not Cami…she wanted to catch some money so she could give it to me to use at Merrimack Hall.

According to Webster’s, a philanthropist is “a person who seeks to promote the welfare of others, especially by the generous donation of money to good causes.” That label fits Cami – and many of her teammates who have asked for donations to our program in lieu of birthday gifts – much better than of the other labels she has been given. Until we get to the point where we actually do celebrate our differences, wouldn’t it be nice if the labels we gave to each other described who we are on the inside instead of what color our skin is or where we worship or what our sexual preference is or what we can or can’t do?

The people with special needs that I know live with labels that predispose others to judge their abilities before they ever have a chance to show someone who they are. In an effort to provide services, mainstream and include, our society tells us right off the bat that a person with a disability is different from the norm – physically disabled or developmentally disabled are the first labels my students are given and those labels follow them for the rest of their lives, everywhere they go and in everything they do. It didn’t take me long to realize that none of these labels is accurate and if you spend a little time around people with special needs you’ll realize it too. Once you start thinking about the negative nature of labels for one group of people, you’ll find yourself noticing the negative nature of labels for any group of people.

Labels on people should come with their own warning label, something like, “WARNING – this label is not adequate to describe the person it is being assigned to and is possibly being used to facilitate exclusion, bias and discrimination.” If a label carries with it a negative connotation, we should mark that label “expired.”