Poetry, Autism, and Statistics, Oh My!

Hello!

I’m happy to share that  my poem, Autismville, won the Songs of Eretz Readers Choice Award Contest, and another of my poems, 7 AM, came in second!  If you’d like to see the official announcement, you can click HERE   If you voted in the contest, thank you, thank you!

This is an international contest, so it can’t be just my little ol’ cheering section of friends and family that helped this particular poem to win. Maybe the results reflect a growing interest in learning about autism, but I think it’s as likely that it mirrors the increasing numbers of people receiving the diagnosis.  More and more people know someone who is on the autism spectrum, and perhaps that means that lots of folks can relate to my poem. The latest National Health Center for Health Statistics data puts the autism stats at 1 in 36. Yep, that means that, of every 36 children alive today, there is one who fits somewhere on the autism spectrum. There are many arguments, many opinions about the true prevalence of autism in the US and worldwide, but there is no doubt that the numbers have risen dramatically in the last few decades. Bink was diagnosed in 1994, and my early, frantic research at that time placed autism at 1 in 10,000 people. I think the stats were actually more like 5 or 6 in 10,000 then, but my first information resources were library books and her first pediatrician, and neither of those sources was quite up to date.

Sometimes, people ask me why I think the prevalence rate has increased. My answer has been the same for the last decade or so: I believe it’s a combination of factors. This thing called autism is an umbrella term for  a collection of symptoms, and I believe there are multiple influencers. More children are being diagnosed, and at earlier ages, but that only accounts for a part of the increased numbers. I count vaccination schedules, genetics, environmental toxins, in utero exposure to certain maternal illnesses, medications administered to moms during pregnancy and/or birth, and lots more in varied combinations. Too, because I am a spiritual person and I believe we are all here to learn certain essential individual lessons and to share our unique gifts, I sense there is an element of fate involved. Note: in some corners, them’s fightin’ words!  I am not here to argue with your opinions or defend my beliefs, so if that’s your impulse, take it elsewhere, please and thank you.

Look, it is critical that research is funded and continues. I really, really hope science can at least find a way to ease or eliminate the most difficult manifestations of autism, like self-injurious behaviors, seizure disorders, inability to communicate, and utter lack of safety skills and self-protective impulses. But my beautiful daughter is here now, and that’s where the bulk of my attention and energy flow. As her mother, there is much I can do to make her life easier and better. As a writer, there is a little bit I can do about raising awareness and perhaps helping people understand the magnitude of the challenges Bink and so many others face. As founder and teacher of Yogabilities™, I can help people with autism and other disabilities in my community feel a little stronger, more balanced, and more flexible, and I can help them learn some basic and portable stress reduction techniques.

You’ve probably heard a few different quotes from some really interesting people like Voltaire, Confucius, and Shakespeare, suggesting that we not let perfect get in the way of progress.  Our allotted time is short , and doing nothing will change nothing. When Bink is struggling with something, we go over (and over, and over) her strategies. I’m trying to teach her that there is always something she can do to help herself.  Expanding on that, there is always something each of us can do to help others, including people with autism and their families. What seems like a little can feel like a lot.

It begins with acceptance, and a desire to understand a very different way of being. When people are curious about Bink, I don’t interpret it as rudeness. I’m glad to answer questions, or suggest ways they can engage with her.  It continues with respect for all people, including those that don’t talk, and those that flap their hands, and those that spin, and those that don’t make eye contact. That means the Neurologist in that top rated hospital could’ve handed me his written assessment, rather than reading aloud his list of her supposed deficits and offering a bleak prognosis, while she stood at my side, taking it in. That means the waitress in the restaurant could ask Bink what she wants to order instead of asking me what she’ll be having, as if she isn’t there. If Bink can’t answer, I’ll step in, but please, waitress, treat her like the adult she is.  That means the dad in the CVS could reassure his little girl that she can tell Bink her name when she asks, rather than averting his eyes and turning away, which teaches his daughter to do the same in the future.

When in doubt, assume competence, do unto others, and be kind. Little things, big impact.

Stepping off the soapbox now, and signing off.

-Melinda Coppola

 

 

 

 

 

 

 

 

 

 

 

Yogabilities™: Peace as a civil right

Doesn’t everyone deserve to be peaceful?

 

When I tell people that one of my occupations is teaching Yoga, there are some common responses.

Oh, I love Yoga! I take it at the gym/the cool studio in the upscale shopping center down the street
or
I can’t do Yoga, I’m not flexible enough.
                          or, perhaps
I read an article about how many NFL players do Yoga.

When I tell people that one of my specialties is teaching adapted Yoga classes for individuals with special needs, there’s also a common response, variably worded but along the lines of:

               Oh, that is so wonderful that you do that for them.

Translation: you must be a saint. You are so self-sacrificing. That must be so hard.

Insert audible sigh here. I know this territory. As mother of a young woman with special needs, I’ve heard things like it all her life.
1. I don’t know how you do it.
2.
You have the patience of a saint.
3.
God gives special children to special people.

Those are well meaning comments, I know. And sure, it can be really hard, and I do happen to have super-sized patience. I also believe that each incarnated soul is special, and God//Goddess/Universal Life Force has a way of putting the right souls together to help us learn and grow in the ways we most need to. In other words, everyone—parent and child, with or without extra needs— is special, so therefore # 3 applies universally.

When someone would roll out the old “How do you do it?” in the past, I was often too tired to answer, or too taken aback, or too caught up wondering how the hell this person knows what it is I actually do with my kid, given that they maybe just met me.

As my daughter and I grew older, I’d more frequently have the right snappy response, which is “ She’s a blessing.” Short, true, succinct. These days I’ve added on a few new handy lines, also true,” If this were your child you’d do anything you could for her, too. You’d rise to it. You probably have moved a few mountains for your own kids, right?”

So, back to the Yoga teaching. I’ve been teaching my adapted classes, which I call Yogabilities™, for about 11 years now. Like most things in life, I’ve learned as I went along. I’m not a saint, it isn’t a sacrifice, and Yoga is not some special privilege that only belongs to the, umm, …so-called typical folks.

In our times, everyone has stress, most people have anxiety, and I’ll drop and give you twenty push-ups right this minute if you can find someone in your daily life who does not contend with poor sleep patterns, inability to focus, lousy posture, stiffness, or difficulty with balance. Everyone can benefit from Yoga.

Further, people with special needs have more stress than many. Society often treats them like children all their lives, limiting access and choices and self-determination and robbing people of a very basic human right—dignity. So, if anyone is more amazing than anyone else, it is my Yogabilities™ students and their peers. They deal with challenges we can only half imagine, and many do it with humor, patience and grace.

I love working with these particular students because, cliché as it sounds, they teach me as much as I teach them. There is no pretense as we sit together and breathe, practice being present, and share strategies for coping with anxious and unpleasant feelings and situations. We all seem to accept each other rather unconditionally. My experience with my own daughter serves as a constant reminder to release any rigid agenda, meet each person as they are, and go with the flow. Moreover, these students and I seem to co-create an energetic space where each person can feel welcomed and safe. In that container, I’ve seen magic happen.

On those Yogabilities™ afternoons or evenings when I am particularly tired and would like to just stay home and catch up with laundry or check out with an HGTV home show, I cue up a mantra from my daily life and let it nudge me into place: I GET TO, as in

I get to be her mother
I get to go teach Yogabilities™.
I get to spend time with some of the most interesting people I know.

So yeah, I get to share my knowledge of Yoga with people with special needs. Some of them are saintly for putting up with the rest of us. I don’t know how they do it. God must have created the circumstances whereby they can teach me the stuff that really matters. It’s so wonderful that they do this for me.

–Melinda Coppola
www.SpectrumYoga.net