Wednesday, May 15, 2013

My son's climb is steeper than most

By D. Christine Brown

Our 4-year-old son is recovering from severe brain inflammation 20 months ago. Although he's now developmentally delayed, has an irregular EEG on the left side of his brain, and also has a resulting autism diagnosis, he's been looking progressively more "neurotypical" as his brain heals. It's been a journey of hope and optimism for his future.

But a few recent events planted some seeds of doubt in my mind. First there was the story of the parents who could no longer care for their 19-year-old autistic son, so left him at a government office. The boy is at the developmental stage of an 18-month-old, which includes unrolling the toilet paper, then trying to shove it all into the toilet.

Then I attended Silken Laumann's BLOOM speaker event. She mentioned worrying that her 17-year-old autistic stepdaughter could at any moment throw a jar across the room at the head of one of her biological children.

I'm also finally reading Bad Animals after seeing author Joel Yanofsky speak at Indigo last October. In it, he describes how you have so much hope when you first get therapy for your child after an autism diagnosis. Then, at some point, you realize that he's starting Grade 5 and maybe this is the way things are going to stay.

I began to picture our lives going forward. What if Lucas doesn't fully recover? Will these examples become our reality once Lucas is too big to pick up and move around?

I decided to give a music playgroup a third try. It was the same group we had started just before my son's brain inflammation, just over a year-and-a-half ago.

We tried it again last year, but he wasn't ready yet. I thought he might be ready this year so off we went to the indoor playground with the other parents (mostly mothers) and young toddlers.

My son towered over them, but they paid attention to the leader. They put their hands in the air on command, their knee up to balance during the appropriate part of the song. My son ran off to return to the slide and ball pit. There was zero participation on his part, aside from looking at everyone's face as he rotated around the middle of the room before racing out.

Towards the end of the class a father was leaving with his daughter and passed us on his way out. "Oh, he wasn't interested today?" he said, gesturing to Lucas up in the climbing structure. Here came the eruption of doubt.

"He's developmentally delayed," I said. "He's recovering from severe brain inflammation." The poor guy was sympathetic and asked if Lucas would recover. "Nobody knows," I said. "It's a wait and see." He commented on how hard it must be for us, and how he wished he could do something.

Tears welled up. "I'm sorry," I said. "I'm not usually like this, but in situations when I see other kids, it hits me." I also told him how Lucas has been recovering and making great progress.

"At least he looks really happy," he said. "He is," I said, then quickly scooped up Lucas, gathered our things and headed to the park before the rest of the class let out, wiping the tears off my face.

Lucas' behaviour has recently regressed a bit. He's mouthing and throwing all objects again for the first time in months. It's relentless; he's throwing everything in sight. As we walked to the park, I was in a cloud of despair, trying to be cheerful as I ran with my son through the grass on a beautiful sunny day, watching him kick sand and throw sticks. I was more discouraged than I'd been in a long time.

On the way home from hearing Silken Laumann speak, I heard philosophers interviewed on CBC about the moral obligation of helping others. One discussed the lack of difference between saving a drowning child in front of you and donating to famine relief in Africa: they're both going to make a difference in someone's life.

I thought about the misfortune of my son's brain inflammation and subsequent setbacks and how determined I am to facilitate his (full) recovery. He indeed, might recover. I thought about the children who don't. What about their parents? Some never get a break.

Our current reality is but a glimpse into the hardships in their world and it is draining. It is defeating. It isn't fair. Of course there are also gifts, insights and great moments, but how would I feel if my son escaped the fate that others don't? What if the day comes when my son no longer has disability status?

I know I can't go back to a normal life after all we've experienced.

It's my moral obligation and duty to advocate, and if my son recovers, I'll have the energy and time that others don't. I'm a researcher by profession and have gained a wealth of new knowledge since our road turned. I'm persistent and resourceful. I'll do what I can make to a difference: to promote and facilitate more understanding and support for other families living with disabilities.

After the failed music group, Lucas decided to run along the path surrounding the park. At the end there were only three choices: on to the road of oncoming traffic, turning back, or going up a very steep hill. Lately Lucas has enjoyed saying "too steep" about the slides at the playgrounds. I saw this as a great opportunity to incorporate another context for the word steep. "Lucas!" I exclaimed, "Look at the steep, steep hill! Can we make it up the steep hill or is it toooooo steep to climb up?"

He laughed, I grabbed his hand, and up we started. I suddenly remembered that as a small child I hated group activities. I didn't like to conform. Maybe Lucas just has my personality, I thought.

Lucas was laughing and giggling as we zigzagged up. It was exhilarating. At the top I stopped and held Lucas, looking down. "Look!" I said. "We made it!"

And then, BAM! It came to me: this was our last 20 months and we've made it to the top. Lucas is doing great. He's recovering and making tremendous progress. We don't have to compare ourselves to the other toddlers. Their hills haven't been as steep.


Wow. Beautiful insight, beautiful moment.

Your persistence, resourcefulness and love for your son will go a long way. Mark my words. Thank you for sharing your story.

Beautiful and you express emotions that we can all identify with. For a thoughtful, healing and helpful discourse on the interplay between moral philosophy and parenting a child with disabilities, read Eva Kittay's essay, "Not My Way, Sesha. Your Way.. Slowly". Eva's work in this area is exemplary. Good luck with your journey. xo

Thank you for the information, Donna. I read & really appreciated the essay you recommended, but forgot to comment back at the time. I also have since saw you speak at your book release and it was a joy to chat with you and read your fabulous book.