Today I listened to the Marketplace podcast and I had the opportunity to listen to a father, Ron Suskind, talk about how his son Owen (with autism) learned about the many facets of life through watching Disney movies. The movie, I hear, is amazing and a winner of multiple awards. It is definitely one that’s been added to my “to watch” list.
In the interview, Ron asks a very important question as he realizes that his life is going to be very different than the life he had envisioned once he finds out his son is autistic. His question is this, “Who decides what it means to have a meaningful life?”
Ron was questioning why, when people looked at their son (and oftentimes stared), they would see Owen as “less than” and feel sorry for the family. What made their lives somehow less meaningful than others?
Stares. Looks. Eye rolls. Judgement. Oh, it used to bother me so much. And to be honest, the stares still upset me. My mind tells me that people are staring at Braden because they are confused by his actions and behaviors. My heart tells me that I need to protect Braden. My mama bear comes out in me and I am ready to defend.
Braden, along with his sister Madison, was born in Saudi Arabia. Strange? Yes, Mike and I are international school teachers, and this is where we happened to be working when we decided to have our children. Madison came first in 1997, and Braden soon followed in November of 1999.
Madison was born a healthy young girl, and just a few days later, our dear friends had their first son, N. N, unfortunately, swallowed meconium at birth and came very close to not surviving. N is a miracle. We are so thankful each and every day that he is alive and amazing. And one day, I may post on this very event, but for now, let’s just say, we are all so very thankful for N;s life. Interestingly, at the time, Mike and I talked to each other and said, “Maybe one is enough. The chances of something going wrong are so high. Maybe we should just have one child.”
You all know that didn’t happen. We had two, and I’m ever so grateful we did. Braden is our miracle.
When Braden was just 8 months old we picked up and moved to Jakarta, Indonesia. Why? Perhaps that’s best for another post, but at the time, we thought it was a great idea!
When Braden turned three, we (Madison, Braden, and I) fled Indonesia. Mike and I were teaching there and all was wonderful. And then a bomb went off. Literally. Some of you may have heard about the bombings in Bali, Indonesia. Most of you, probably thought, “Wow! That is horrific.” But for us, it was so much more than that.
Our friend, Jamie Wellington, a loving father of two young girls and husband to Lissy, was in Bali for the weekend. He was participating in a huge rugby tournament with many of his friends. They had just gotten out of their taxis at the Sari club and had entered the bar, when a bomb ripped through it killing over 300 people. I cannot begin to describe how awful this all was. I remember hearing about the bombing from Mike’s family. They emailed to see if we were okay. We laughed, saying we were nowhere even close when I remembered that Jamie was there. I called over to Lissy and Jamie’s house. Our friend Michael answered the phone, but I thought that it was Jamie. “Thank God!” I said. “We were so worried.
“Lori, this is Michael S. Jamie has not been found, but we fear the worst.”
Jamie’s remains were found several weeks later. Life as we knew it had changed.
We no longer felt safe in Jakarta. There had been several threats against our school and many warnings to not go out into public. So the kids and I came home. Mike had to stay and work. Yes, the decision was horrifying, but we had to do what was best for our family at the time.
I moved home to Sunriver, Oregon. With the support of my parents and my good friends Ken and Saundra, I somehow managed this difficult time.
The problem was this: Along with being a single mom and stressed out beyond belief, my son was not developing properly. Now, we had realized this earlier on. Really, we had. But it was at this time, that Braden’s behaviors were awful.
When we got to Oregon, here are some of the things he did:
- Broke every single lamp in the house.
- Threw breakable items from the top floor to the bottom floor. Each time he did this, he said, “Oh Geez!” (just as my father had done the first time Braden had thrown something.)
- Ran away from the house- and much of the time he was stark naked!
- Ruined every carpet with feces (another post- oh, and it’s a fun one!)
- Screamed and cried ALL THE TIME!
So I’m in Oregon as a single mom. I’m feeling alone- very alone, and I have a child who is behaving terribly. I thought I would lose my mind. Mike and my friend Suzanne called me each and every night from Jakarta. I cried and cried and cried.
I didn’t know what was going on. But one thing I did know. I was being judged each and every moment I was out in public with my children.
Braden would scream and and stim and flap. People stared.
Braden would scream and run from me. People “tskked” and rolled their eyes.
Braden would scream and yell and repeat words and pull my hair. People would tell me I should spank him.
I have more to that story, but for now I reflect on the interview I heard earlier today. Who decides what is a meaningful life? Many years ago, I would have said it was the strangers who judged me; who judged my child.
Today, I don’t know. All I do know is this. When Braden flaps and stims, I smile. When Braden speaks loudly in public, I smile. When Braden is Braden, I smile.
I smile because Braden is my son. HE makes me happy. Do I get upset when others stare and eye roll? Yes, of course. But it’s almost like I have a secret. My secret is that Braden makes me happy. I wonder if the people staring would feel the same way if they had a child with autism. I have to hope that they would.