Today is a bittersweet anniversary for us. Two years ago our healthy son Lucas ended up in the intensive-care unit. He was two. He had a very high fever and prolonged seizures, out of the blue. A few days later, he suffered severe brain inflammation. After spending four months in hospital recovering, he’s continued to progress.
Lucas is relearning to talk and is physically active. But since his illness his development has been delayed and last year he was diagnosed with autism.
The past two years have been a difficult journey for our family. As parents, we’ve focused almost solely on Lucas' recovery. In a sense this assumes a correction of the past—undoing what happened and getting “back on track."
But recently some external events have made me realize that this approach, while useful, is somewhat of an illusion. It won’t serve us going forward.
First, the New York Times Motherlode blog featured about another mother's experience with brain injury in her son. It sent shivers up my spine and contributed to my shift in thinking.
Like us, this mom had a 2-year-old son with high fever and seizures who suffered brain inflammation (within a month of our son’s illness!). But her family’s outcome is very different from ours.
Her son has severe and complex physical disabilities going forward. My heart ached as I pondered how different her focus has been over the past two years, accepting these changes and moving on in her new reality which is less about recovery and more about adaptation.
Then in the news there was of horrendous ignorance: a neighbour of a 13-year-old autistic boy sent a letter of hatred to his grandmother, telling her to euthanize the boy because his vocalizations are a nuisance to the neighbourhood.
BLOOM covers this topic often: how people see their own vulnerabilities in the differences of others and it can be too scary to accept.
There’s a song on one of Lucas’ CDs that we’ve all heard: “Whoopee ti yi yo, git along little doggies, It’s your misfortune and none of my own…” The line from this old cowboy tune really struck a chord in me. My husband says “what a mean song” (he really loves dogs) but that’s reality. It’s why the neighbour of the boy with autism, who signed the letter as a mother herself, didn’t stop herself from delivering that letter: It’s your misfortune and none of my own.
By suggesting the boy was less than human, she had cut herself off from her own humanity.
In thinking about that hate letter, I realized that in describing our son’s experience as one of “recovery,” we were in a way separating ourselves from what we were too frightened to accept. When we talk about recovery, we imply that Lucas’ challenges are temporary, distinguishing him from children like the boy in the New York Times story, who has lifelong disabilities.
But the truth is that we don’t know how Lucas will be affected over time.
Sometimes, especially when tired, Lucas can act out. Outsiders may judge his behaviour as hyperactive, dangerous, defiant, disobedient, naughty, unruly, uncontrollable and stemming from a lack of discipline on our part.
In fact, it’s serving a sensory need. But it’s easier for people to make assumptions than to try to understand why a child like ours behaves the way he does.
We feel the eyes of judgment when our son "misbehaves" in public, and even when we're alone at home—even though I don't consider any of his behaviour misbehaving at all. In my mind he’s an innocent and playful child!
Brenda Rothman's in the Huffington Post fueled this idea, offering me hope and inspiration:
She writes: You were given an instruction manual for a Ford and your child is a Ferrari. So, congratulations! Your child is NOT fundamentally different from other children. You just need the right instruction manual. Parenting your child will be more intense. You'll need more patience and time. Your child will have intense emotions and needs. But he'll also have intense curiosity, drive, determination, desire, persistence and individuality. What you'll need to find is the right fuel, the right environment and the right supports. With those, your child has great potential. With the right supports, he will have a happy and fulfilling life.
Based on this reasoning, if we just worked hard enough at finding the supports Lucas needed, everything would be okay with our son.
We chose to dive in full hilt. We’ve done occupational therapy, sensory integration, speech and language therapy, movement therapies, naturopathic protocols, therapeutic recreation and more.
We also stumbled across this less popular, but what we feel is most relevant, intervention for children with autism called the .
We’ve worked our butts off at getting Lucas the right supports. We haven’t slept, had a social life, or had time to get anything done for ourselves.
My career has been put on hold and we've spent every waking moment making sure that Lucas is safe and stimulated and interacted with.
We’ve chosen to feel small because we depend on our parents financially to get through this phase of our life.
Although every day of our life with him has been more difficult than anything we’ve ever experienced, it’s also been more rewarding, with glorious and tremendously joyful interactions with our precious son. And he's still adorable, energetic, demanding, sweet, gentle, loving, affectionate, bright and curious. It’s been worth every minute.
But now it’s time for us to move forward and forget about what happened to our son as being a misfortune at all. It’s something that happened. Things happen.
I liked what KJ Dell’Antonia wrote in this : “…Some part of us just can’t go to that place where we know that some things in life have to be lived through instead of conquered.”
Having to accept what happened to our son is accepting that we are all vulnerable and impermanent. It eats at our deepest human need—to survive. Anything can happen to us at any moment. We are all fragile and vulnerable to misfortune at every moment. But we can also enjoy connecting with each other at every moment, and this gives our lives great meaning and joy.
Beyond survival, feeling connected with others is every human being’s greatest and deepest need. We yearn to be understood; to feel important and worthy of attention and love among those we interact with. Feeling connected gives us self-confidence and a sense of purpose.
The main therapy we’re choosing for Lucas, the Floortime approach, is all about connecting with our son by following his emotions and interests to facilitate his development. The underlying assumption is that every child has the desire to interact.
In our case, our desire to connect with our son has begun to outweigh our need for “recovery,” or our need to appease people who judge his sometimes disruptive behaviour.
Our focus on recovery was a coping mechanism, one that we are slowly letting go.
Our hope is that we can continue to provide an environment for Lucas where he’s unconditionally loved and accepted for who he is, and that he’ll always have rich opportunities for connecting with others.
Our psychological journey has been a slow and long road, just like our son’s recovering brain. Both are leading to brighter pastures, vulnerable and impermanent as we are.