Archive for July 2016

Monthly Archive

Autism and Coping Tools for Parents Part 3: Humor

 Humor In Darkness

 I grew up surrounded by laughter.  My family has always been a sarcastic and snarky group who would routinely laugh when one of us would trip or fall off our bikes, usually holding up the correct amount of fingers in order to judge the event.  Nine fingers was a success, three fingers would require us to try to fall harder the next time.  But nothing really seemed serious when you were laughing—my father in particular—would always make tongue-in-cheek remarks about things we saw on TV, witnessed at the park, or overheard at family holiday parties.  No doubt this helped form our future ability to find humor in almost anything, making difficult situations somehow easier to digest and helped us absorb the full situation before reacting.  I am always looking for the humor.  But I learned later in life, not everything is funny.

My son was diagnosed with autism in 2011, shortly after his second birthday.  My husband and I noticed that the happy and joyful child we had was introverting into his own world.  He would stare blankly out the window for hours, taking in the view while having his fingers spread wide open directly in front of his face.  He would move his hand closer to him, turn it, and then quickly stretch it back out, taking his time moving it closer again, a behavior we later coined “finger puppets.”  His ability to communicate with us seemed to come to an abrupt end and any time we tried to touch him, he would shudder as if our hands felt like broken glass against his sensitive skin.  We were at a loss and for the first time, I failed to find the humor in what was taking over my son’s life. 

When we received the diagnosis, we both felt immediate dread and a sense of loss. While not life threatening, autism is nonetheless crushing.  All we understood of autism was from movies and a few stories on the nightly news, but our personal knowledge was very narrow and naïve.  We attempted to find ways to deal with the new reality that was now our family’s forever.  Autism found a way to become the fourth member of our family, an unwanted guest in our lives.  My husband dove into reading books and articles on autism, trying to find answers and solutions.  I decided to stick my head in the sand and wait it out.  You can only imagine how well that went.

MilesIn the years since the diagnosis, our family has established an amazing team of doctors, nurses, therapists, teachers, parents and friends that have become an extension of our family, providing support, guidance and direction during difficult times and has greatly improved the quality of our lives.  We have been able to slowly reemerge, as a new family with our son, who is a little left-of-center, but always a joy to be around.  I was able to start seeing him for the person he was, and not the shell of who we thought he would be.  As he started to find words again and would venture out in public without covering his ears or having a meltdown, I started to witness some of the humor in autism.  Yes, it’s not funny as it’s written in the DSM-5 or discussed in the press, but it does have moments of hilarity and when it shows, it’s amazing.  I never appreciated the word “literal” until one day when I was singing “Five Little Monkeys” with my son.  As I began to sing, “Momma calls the doctor and the doctor says….” I pointed to my son to finish the verse and he looked at me and said, straight-faced, “HELMET!”  Can’t argue with that.  It was a moment that made me laugh and understand how he views the world, the literal boundaries and structure that is autism. 

I’ve found that through humor, I can also disengage socially awkward situations when they arise, and there are plenty—believe me!  One of my son’s favorite things to do is to explore the world using his mouth.  It took me a while to accept this as one of the sensory processing ways his mind adapts, and I’ve also developed a strong gag reflex as well.  While riding the subway home back in New York, my husband and I positioned our son’s stroller against one of the rails while we stood on either side of it.  We were having a conversation when we suddenly heard a woman scream, “Oh no!!  He is NOT licking that pole!” Sure enough, our son had stretched his little head out far enough to reach the pole and started to lick it up and down to gain the sensory input his mind craved. 

Initially horrified and worried about what he was ingesting, the gentleman across the aisle said, in a thick New York accent, “Well now, if we have nuclear fallout, your son and the cockroaches will be the only survivors.”  We all started to laugh, because honestly, what else can you do?  It was probably true and it was already done; the laughter defused the need to explain to a train full of strangers why our son did this.  We started to accept that he had a different way of exploring and gaining knowledge than we did.  Instead of trying to stop it, we allowed him to explore on his terms.  And we started to laugh again.  Our son has taught us that being different can be fun, it offers another way to view the world and we have released that constant worry about the things he can’t do, can’t say and can’t be.

Navigating this new world of autism with my son, I realized that my childhood full of laughter and not taking ourselves too seriously has probably served me better than if we had a dramatic or reactive family dynamic.  Flexibility in autism is difficult to find, but if you mentally keep yourself focused on what’s most important, it’s easy to laugh at the silly situations that we often find ourselves in.  Now when we see our son licking the neighbor’s dog, singing the latest pop song at full volume while at the library, or jumping and flapping his hands wildly while waiting in line at the airport, we just look at one another, shrug our shoulders and judge with the appropriate amount of fingers.  Sometimes, even on the three-finger day, autism can be funny. 

 

Autism Re-examined : Ethical challenges in care, support, research and inclusion

Bioethics

This year, Seattle Children’s Annual Pediatric Bioethics Conference is focused on autism. It will be held July 22 and 23 at Bell Harbor International Conference Center in Seattle.

 

 

 

Some of the questions to be explored include:

  • How have changes in the way we understand autism over time influenced ethical issues in diagnosis and treatment?
  • How and why do health disparities occur in diagnosis, treatment and support, and what are the impacts? How can we reduce and ultimately eliminate disparities?
  • How can we incorporate knowledge of cross-cultural differences to provide better care for children with autism and their families?
  • What are the ethical challenges in the transition from adolescence to adulthood? How can they be addressed?
  • What are some of the ethical issues in autism research? How can research findings result in more effective care and support for children with autism?

 

For more information and to register for the conference.

 

We hope to see you there!

Mindful Monday- Loving Kindness for All

Metta and Tonglen

Loving Kindness for All

The practice of metta, loving kindness, as taught in Buddhist tradition, begins with self and radiates out to all. This may be easy when life is good and things are going our way. But what about when life is hard and things are not going our way? The challenge is to act with compassion no matter the circumstances.

Metta Exercise

Sit comfortably and quietly and take a few deep breaths in and out. Hold in your mind all the people you are sending unconditional love. Feel it extending from you to these people and then throughout the universe. Say to yourself, “May all feel peace. May all be happy.” Or come up with our own good wishes.

Tonglen

Tonglen is Tibetan for “giving and taking” or “sending and receiving” and is practiced as a meditation focused on developing/nurturing compassion and the unselfish regard for others.

Tonglen Exercise

Sit comfortably and quietly and allow your mind to be still yet open. Take some deep breaths in and out. Call to mind someone (can be an individual or group of people) who you know are struggling. With each inhalation, take in their struggle and in doing so, provide them relief. On the exhalation, wish for them peace, sleep, relaxation, insight, patience, courage, love – whatever you think they might need. Do this a couple, three times.

Quote of the Week

“A human being is a part of the whole, called by us ‘Universe’, a part limited in time and space. He experiences himself, his thoughts and feelings as something separated from the rest, a kind of optical delusion of his consciousness. This delusion is a kind of prison for us, restricting us to our personal desires and to affection for a few persons nearest to us. Our task must be to free ourselves from this prison by widening our circle of compassion to embrace all living creatures and the whole of nature in its beauty. Nobody is able to achieve this completely, but the striving for such achievement is in itself a part of the liberation and a foundation for inner security.”  ~Albert Einstein