How To Find Balance, Meaning, and Joy Through Autism
My son, “Pookie” is 16 years old, nonverbal, and very severe on the spectrum of autism. He is the absolute light of our lives, and contrary to what outsiders may think, we have not been shortchanged on jot…we are the lucky ones; the ones to be envied.
Here are a few of the ways that we were able to find more happiness than we could have ever dreamed of.
After wrapping my brain around my son’s diagnosis, it took a minute to get the autism machine up and running: speech therapy (ST), occupational therapy (OT), physical therapy (PT), applied behavior analysis ABA, school programs, special camps, meds, supplements, specialty doctors, diets, etc. My new lifestyle was intense. I left the house only to take Pookie to therapy, or to gather the basic supplies: food, diapers, and meds.
I began to realize that I never took any time out for myself. I was 37 years old, exhausted, and looked like I belonged in a nursing home. One random night, I found the strength to go out to dinner with some friends. They talked about things like dinner parties, bitchy tennis partners, politics, and their summer vacation plans…nothing that I could relate to anymore. None of the girls had gray roots, un-manicured hands or bags under their eyes.
They looked 20 years younger than me, wore beautiful outfits and smelled nice. I was in my uniform: stretchy pants, a sweatshirt (with a bit of vomit on it due to my son’s voluntary regurgitation), and my hair in a ponytail. This dinner was a wake-up call for me to re-join the land of the living. But how could I do this without compromising the level of attention that my son needed? Wouldn’t it be selfish of me?
I had been very quick to accept my son’s diagnosis. I realized early on that fully accepting Pookie’s autism, no matter what the outcome, would be my key to happiness but I had not made the decision to live a balanced life. I began to analyze my situation: my son was one person in our family of four. Each one of us needed attention, not just the one with autism. I thought about the oxygen masks on airplanes and how the flight attendant always advises putting the mask on yourself before assisting others. I realized that I hadn’t put on that oxygen mask in years.
I began to make some changes…
I found weekend daytime babysitters so that I could get the basics taken care of when Pookie was out of school. I no longer cared about dinner out on a Saturday night. Bathing, cleaning, and running errands—things that everyone takes for granted—were now more important to me than some swanky five-star dinner with appropriate wine pairings.
When I couldn’t find a sitter, I asked family members to help out by taking Pookie on “milkshake rides.” He loved the vestibular motion of the car ride and who doesn’t want a Frappachino! The ride was guaranteed to be tantrum-free, so this was an easy babysitting gig.
I tried to socialize a bit again by having my friends over for dinners. It was a win/win as Pookie was exposed to new people in a comfortable setting, and could later go off to bed, allowing me to enjoy some much-needed adult time.
I also decided to let some things go…like the idea of having a magazine-worthy, pristine house. I started by hanging more swings and hammocks in my house than what’s on a Fifty Shades of Grey movie set. I bought slipcovers for all of the furniture, as Pookie made phenomenal messes each day.
I put locks on the refrigerator and cabinets to stop his binge eating. I removed all of the furniture and lamps from his room to keep him safe…the only things left behind were his bed, a million stuffed animals, twinkly Christmas lights, and soft flags from that decorated the walls. I double-deadbolted the doors for peace of mind. I did everything possible to accommodate Pookie’s needs which made my life a lot easier. It may have not…
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I decided no longer care what other people thought. Strangers (whom I would never see again) with their judgemental looks could just keep on walking. They didn’t deserve an explanation about my son’s behaviors.
I focused on what was right in our world instead of what was going wrong. This led me to genuine happiness.
Perhaps the most important change was letting myself off the hook from the feelings of guilt. I had constantly felt bad that I wasn’t engaging in sun-up to sun-down therapies with Pookie, as it just wasn’t my personality to do so. I had to remind myself that I had not gone to school to become a special ed teacher or a therapist.
I was just a mom doing the best that I could and the rest I left in God’s hands…and that had to be good enough. I decided to utilize my strengths and delegate my weaknesses to give Pookie the best care possible. I advocated endlessly for him and organized a team to help me.
Finding meaning and joy…
Sitting in a doctor’s waiting room, a very stressed out woman made conversation with me about our special needs children. Her daughter was medically fragile and in a wheelchair. What she said broke my heart. “I didn’t sign up for this life. I love my child, but I’ve been doing this for 16 years. This was never supposed to be my life.” I understood that she was worn out, but I also wanted to slap her.
That woman was not living. She was only surviving and feeling sorry for herself. Not for me. Instead of focusing on my level of stress and sleep deprivation, I turned my attention to the many ways that autism had actually made our lives better. I needed this focus as I’ve never been able to do anything well unless I felt that it had meaning. It wasn’t hard to do. Pookie was my pride and joy.
I celebrated Pookie for exactly who he was. I wasn’t only going only to be happy if he learned to talk or behaved in a “typical” way. He was more important than keeping his behaviors 100 percent “normal.” I advocated for him endlessly and gave him every advantage, but I learned to stop beating my head against the wall trying to make him like every other kid on the planet.
Why was it so important for him to be “normal” anyway? I never cared so much about being normal; it’s ultimately boring. I found Pookie’s take on life highly entertaining. He made our lives immensely interesting.
We choose to celebrate Pookie for exactly who he is. Allowing him to be himself gives him loads of happiness. He understands that we worship him, which makes him confident and hilariously cocky. We are all far better human beings because of him…he has changed my priorities and perception of the world in a way for which I am forever grateful.
This article was featured in Issue 89 – Solutions for Today and Tomorrow with ASD