Thursday, January 5, 2017

Learning to swim in a random sea

By D. Brown

In this sea of life, we each have our own boat. Some ride in a big ship that gives them lots of room and keeps them safe. Others like a powerboat for speed and adventure. Maybe you just sail along, either enjoying the ride at the helm, or fearing every wave.

Then at some point in life, your boat capsizes.

For us, it happened five years ago. That’s when our healthy two-year-old angel suddenly seized. Over the next few days he suffered severe brain inflammation at The Hospital for Sick Children. Our world collapsed. Three months later he was discharged from Holland Bloorview with an acquired brain injury. An autism diagnosis followed. Looking back on that experience, I'm still so confused.

Why did our boat sink? It was a really great boat. In fact, everyone was talking about how great our boat was. But it capsized. And there was no making our boat great again. At the time, that's really all we wanted.

For five years I’ve been swimming. I've barely come up for air, but at least I haven’t sunk.

Before our son’s brain injury, my career in data analysis, statistics and research helped me make sense of chaos. It gave me a sense of control in the world. I didn’t think I’d ever have to swim because I had a great boat!

After our son’s illness, my analytical mind searched for answers as to why it had happened, but could make no sense of it.

Now I’ve learned that it’s okay to not make sense of everything, and to not need to figure out why. Life is a sea of randomness. We were knocked over by a rogue wave. Although it was a huge wave, we couldn’t have predicted it or prepared for it. We certainly couldn’t have prevented it. In fact, if I spend too much time analyzing why the wave appeared, I begin to sink emotionally.

This past September was the first year that we didn’t remember the anniversary of the day our son began to seize and we raced to emergency. I did think about it the week prior, and afterwards, but that particular day we spent in chaos five years earlier went by without a single acknowledgment.

I think that says a lot. We have moved on and accepted what happened, rather than being in denial or having “wishful thinking” about a full recovery.

We’re still paddling in the water, though, and it’s hard to see the other boats and not feel a tinge of resentment or even envy at times. We know that most of the other boaters don’t know what it’s like to have to swim, or simply can’t. We’ve become pretty good swimmers. And now we have so much respect for the other swimmers stroking along beside us.

Recently it was the anniversary of the day our son was discharged from Holland Bloorview. I decided to take this online quiz googling “What kind of boat are you?” Here are my results:

“You are a sailboat. You are open to any kind of adventure from catching some rays topside to racing through tides and waves to chase the wind. Sailors are always looking up (to see where the wind is coming from), which reflects your optimistic personality. You have a knack for knowing the wind direction wherever you are in the world and are best suited to tropical, breezy waters. However, if the wind stays away too long, you may get bored.”

So although we’re still swimming in a vast sea, I’ll picture myself as a sailboat. I know this would have been the same answer I'd get on the boat quiz before my son’s brain injury. I’m still me. And I’m still chasing that wind. But in the last five years, because I’ve been forced to “sink or swim,” I’ve become more resilient than I ever thought I could.

And what about our little guy? He’s coming along just marvellously. Only time will tell if he’ll be an independent swimmer. In the meantime, though, we’re honoured to be his life jacket.

You can follow this family's progress at Affect Autism. Here's an earlier piece from the author: This time my husband used a new line: 'He has a brain injury.'


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Good Read. keep up the good work. DIR floortime is a great tool. I took it. in Toronto I learn a lot.


Addendum: The "great boat" paragraph was just a chuckle I added... Some people have informed me they missed the social reference. This should clarify it for you:

I am very new in this. My son had diagosed with autism on the 10th of November at an age of over 4. He had speech issues but he was looking at the face and responding to the name. We were very happy with our son. After the diagnosis we have been in such a rush to understand and cope with the reality. DIR floortime is something I am interested. I took an online course. The instructor mentioned about you website. I signed up for the newsletter. The instructive videos are great. You inspired me and gave me hope. Thanks for all this effort.