Many talk about stress in waves.
The wind blows in, a wave comes to a crest…. and then it breaks before running toward the shoreline.
In between waves, there is usually a beautiful view of the horizon. The water is quiet, your heart feels content, and with every breath of salty air, there is a sense of peace.
However, when you are a parent of a child with autism like me, the stress doesn’t match up with the hypnotic experience of being at the ocean. Instead of those restful moments where you can see for miles, straight out to the horizon, the waves often come together with no breaks in between. They are constantly crashing at your feet; just as one or two crest and break, several more waves are gaining momentum right behind them.
Just constant stress. And you often feel all alone. Instead of being at a beach where strangers whose towels are right next to your cooler are looking out for one another’s kids, you feel like you are on an isolated island where the winds are fierce and the waves won’t stop rolling in.
Our son Owen, of course, is a bright light in our lives; his smile is the sunshine on that same beach. But when you’re raising a child with autism, you live with a constant undercurrent of anxiety. You spend your days managing challenging behaviors and trying to create an atmosphere around your child that will most accommodate him. Coordinating appointments with specialists, therapists, and doctors is a full-time job in and of itself, but because you never have the chance to experience the sense of calm that most parents experience in between those metaphorical waves, you’re left totally depleted most of the time.
When we made the heartbreaking decision to enroll Owen at Anderson Center for Autism, which was so clearly the best way for us to optimize his quality of life (their mission statement), I started to imagine what it would be like to get a little more space between waves of stress. I imagined feeling a bit more restored. And everyone at Anderson made that possible by giving their all to our son and treating him as if he was part of their own families. The waves kept crashing on the shore, of course, as they always do for everyone, but there seemed to be a bit more space between them – giving me a chance to breathe and to look further out into the sea of my life with greater visibility.
On what was one of the happiest days of my life, Owen was getting ready for his very first prom at Anderson. Ah, I thought, there’s that space between waves. And such a beautiful space – seeing my child with autism embrace an opportunity to do something that never seemed possible. Attending a prom, all dressed up, just like his neuro-typical peers do. These are the types of moments that Anderson Center for Autism gives him all the time; the moments where I am able to breathe deeply and live joyfully.
The next day, however, Owen had his first seizure. Thankfully, he was in good hands with his team and they knew exactly what to do. Nonetheless, it was excruciatingly stressful.
Shortly thereafter, he was diagnosed with a seizure disorder. As a mom, that brought me right back to the earlier days – where stress was ever-present, where worry could be paralyzing. His seizures are severe. His heart rate races and his oxygen intake drops. He has had to be transported by medivac to larger hospitals in order to get proper care. He’s been intubated. And I live in a state of hypervigilance – when the phone rings and I realize it’s the nurse, fear and stress take over.
This past week, Owen had 3 seizures. His first was Saturday when he was with us for the weekend. His second seizure occurred at his residence on Thursday. I made our usual 7:30pm standing call, and although Owen isn’t highly verbal, he likes to make animal sounds and he whispers, “I love you.” Those are the moments when those “waves” seem to be at bay, and my heart is peaceful.
Unfortunately, his staff answered when I called, and said that Owen had a seizure and was on the way to the ER with staff, adding that he looked like he was coming out of it. The nurse called next. Owen had a second seizure at the hospital and they were admitting him.
Thankfully, the additional medication worked and Owen was okay. My husband spent the night with him at the hospital. One of the staff from Anderson, on his way to work the next morning, stopped by to check in. In fact, when Owen was medivacked to a larger hospital on another occasion, it was that same staff person who worried we wouldn’t get there in time to meet the helicopter; he generously left his house in the middle of the night to meet Owen (and my husband) at the hospital. A break between waves.
Owen recovered, and as he did, I got a break in the waves again. As I spent a moment taking in what had been happened to my mind, body, and spirit with every crushing wave of fear and anxiety, I had an epiphany.
The real key to managing stress is recognizing that we need to rely on others for support. We can’t do it alone. We won’t survive if we are standing on that isolated island trying to figure out where the horizon is.
We need our lifeboats. We need the sense of security which comes from knowing that the person whose stuff is lying next to ours on the beach has our “back.” We need people.
Having a team around Owen alleviates some of the paralyzing fear and debilitating stress I’ve often endured over the years. Having a big, loving circle of support in my friends and family has as well. And, of course, knowing that my husband and I are together in this journey reminds me that I’m not alone.
Everyone has ideas about how to manage stress. Most people say that when they go to the ocean, they can relax and unwind. But the truth is, it’s the people around us who make us feel safe while we’re there. It’s the people who care about our children and our families who will be there with the lifeboat when the waves are coming in too quickly and we feel like we’re too exhausted to swim anymore. For Owen, it’s his team at Anderson who are right there with us to manage the waves as they come in. For all parents of children with special needs, the people who are swimming alongside us will ensure that we can experience the awe and wonder that comes from standing at the shore to take a breath and looking out at that horizon between waves of stress. They give us those breaks. They give me a chance to practice yoga, to connect with other moms of children with autism, and to take a long walk in the fresh air. They give me the opportunity to have a day at the park with my dog. They give me a chance to tap into technology, using meditation apps to quiet my mind. They give me a chance to smile big when I indulge in a piece of licorice with Owen despite our commitment to healthy living.
The secret to managing stress is really so simple. For those of us who have children with autism, we’ve known it all along. We need the breaks that come from empowering others who help us along.
By embracing relationships around us, we come to life. For me, I’ve found that not only puts me in a better space internally, but it allows me to see the beauty of the world more clearly, and to feel the joy of Owen’s bright spirit more fully.
Yesterday was the time trials for the spring Special Olympics games. We weren’t sure Owen would be able to attend – but not only was he present, he rose to the occasion! He enthusiastically threw the javelin and successfully ran 50 meters. Although his scores weren’t his best, he went and gave it his all. And as he smiled that amazing Owen smile which lights up a room (or even an entire field!), I felt a tremendous sense of pride. He doesn’t let autism or seizures hold him back from being the best person he can be. As he hugged his best friend and a staff member from his old house, I was reminded that not only will he never let his challenges hold him back, but he’ll always open his heart to others who seek to push him forward.
He gets it. Managing any stress in life requires looking to others for support when we need it. The right people will keep us buoyed up, no matter how many waves we face.