“I learn by going where I have to go.”
– Theodore Roethke
When a parent discovers that their child has developmental delays, they are not inclined to be thinking to themselves that this will be a learning experience.
What yoga practices can help these parents?
I am sometimes asked to do presentations and workshops for parents, caregivers, educators and yoga teachers who are involved with special needs populations.
I don’t think one thing works for all people. In fact, different things have helped me weather life’s difficulties at different times.
First some perspective on attitude.
As a teen, for two summers I was a candy striper at St. Luke’s Hospital in NYC. Yes, a candy striper, though male volunteers wore short red doctor jackets. I worked in the Pediatric Playroom which was part of the hospital’s pioneering Child Life program, directed by my pediatrician, Dr. Elizabeth Watkins. When I was not assisting during playroom hours, I was free to help out on the ward. Aside from encountering recuperating kids using IV poles as scooters, I also met some seriously ill children in their rooms. Children with terminal diseases receiving chemo and radiation for cancer, for example. I practiced a little close-up magic at the time. Nothing special, but the illusions were an icebreaker and allowed me to help distract some of these children for a little while.
When I was in college I met Wavy Gravy, already past his heyday, he was running his perennial presidential campaign “Nobody for President” (“Nobody’s Perfect, Nobody Keeps All Promises, Nobody Should Have That Much Power”) and because “most people vote for Nobody, so Nobody always wins.” He was doing his clowning and juggling during the annual Ann Arbor Summer Art Fair.
Wavy gave me a photocopy of an article about his clowning at the Children’s Cancer Research Institute in San Francisco. I believe it was called “Popcorn and Salty Tears” which described how he brought popcorn and movies to watch with the kids together. When anyone would start to cry, they dipped the popcorn in their tears to salt them and then popped them into their mouths and ate them.
This image has always stuck with me. We can flip tragedy around to comedy in an instant. And with no disrespect to the pain and suffering. When you have to deal with pain, the best thing you can do for yourself and those around you is to Bring on the Joy, as my friend and colleague Jen Yost says.
When parents tell their family and friends about their child’s diagnosis of developmental delays, they hear things like, “God wouldn’t have given you this challenge if you couldn’t handle it,” and “this is an opportunity for growth.” From what I hear these are common responses. These remarks are offensive and painful to the parents.
There are many parents who find it difficult to accept the diagnosis of autism spectrum disorder. For some, their child’s challenging behaviors are so difficult to cope with 24/7/365 that they are overwhelmed and they become resigned and depressed.
For instance, I met a parent of a teen who cannot endure the presence of anything in a room that is not attached as a fixture. He stuffs the toilet paper and toiletries down the toilet. The parents constantly have to call the plumber to unclog the toilet, sometimes by actually removing the toilet fixture to get at the blockage. This young man breaks furniture to put it down the compactor chute in his building. His parents have to keep a constant watch on him. It is heartbreaking.
That is an extreme case, but what of the child with autism who is sweet, amiable, compliant, but will never be able to read a book for comprehension. Not get a high school diploma. Never date, marry or reproduce. Never go through a breakup. Never buy parents a birthday gift or take them out to dinner. In short, no matter how mild the condition, this child will never have the “normal” life of happiness and heartbreaks that we expect for our children.
How is this no less tragic to a parent?
Are you going to say to the parents, “Well, you are lucky. At least he doesn’t tantrum in public places or injure himself or others”?
And what of the children in Ghana, where there is only one pediatrician in the entire country of 25 million who can diagnose autism? My wife was offering applied behavior analysis training at a center in Accra and the pediatrician told her that an autism diagnosis is worse than malaria or cancer. The latter leads to death, but autism is for life. My wife encountered teens and adults who never received special education services before. They were cared for by sympathetic but untrained angels in disguise.
Here in the United States we are diagnosing developmental delays and providing special education services to children at younger and younger ages, because the evidence shows that the most progress can be made with the very young when the brains are most pliable.
Some compare their experience to grief, but in a sense it is easier to deal with the finality of a death. A parent knows that their life is forever changed. They dread the idea of a future stretching before them where they will always have to parent, always care for, protect and supervise their adult child, and find ways to ensure their adult child will be cared for after the parents die.
So, we count our blessings as we lick our wounds.
You are thinking, what does yoga have to offer parents?
First of all, parents and caregivers have to find time to take care of themselves. I do not judge parents for how they choose to do this, but in time, one learns that some ways are better than others. For example, getting drunk or high has short term benefits, but may have long term harmful consequences. Psychotherapy or counseling is a must.
I am here to say that a regular practice of meditative activity and physical activity, done with intention for finding peace and harmony, is a healthy choice for mind, body and soul.
If you can schedule sessions with a massage therapist, great. Even better I find is restorative yoga classes or private sessions and yoga therapy.
In Part 2, I list various techniques that I employ myself, and that I teach, to help deal with suffering.