We were sitting in a nice Italian restaurant in Kingston, Ont., en route home from our vacation. Our son Lucas was very tired, hungry and cranky. He wasn't settled or quiet. We were in the back room by ourselves when the hostess sat an elderly couple in the same room. It wasn't five minutes before the man approached my husband and asked him to keep the noise down.
Now, usually by this point, there are a lot of things happening with us.
We are thoroughly exhausted from another day of the emotional swings of a toddler with sensory issues. We are beaten down from hearing the onslaught of screaming and whining, feeling helpless about how to satisfy our son “enough” so that he will be calm and quiet. We are desperate for a nice meal, and at the same time eager to make it a quick one. We are protective of our son and his needs. And, we are on the defense from the time we enter the public realm until we're back in the safety of our car.
If anyone had approached me, I might have answered: “He has autism so it's difficult” when I'm really thinking “You can feel free to go sit in the other room” or “Well, I don't like seeing your ugly face in my line of vision either, so can you please leave?”
But this time my husband firmly, and almost accusingly, used a new line: “He has a brain injury...so...it's kind of hard...”
The man cowered coyly, apologized twice and returned to his wife. Our son continued to exclaim his scripts of protest loudly. We ate as fast as we could and left before their food arrived.
I am so completely sick of us feeling compelled to “shush” our son in public when I want to just let him be himself. And yet, we need to give others the respect we expect for our son.
This is an example of a stressful part of each day in our new normal.
Four years ago our son's brain suffered a massive inflammation attack. We spent three months in hospital and he's been recovering ever since. Our lives completely changed and there was no way we could have anticipated the magnitude of the impact.
But four years later, we are somehow finally settled into our new normal. This anniversary is the first one where those events of September, 2011, feel like a lifetime ago. The extent of what happened has dimmed. We are now just who we are and our reality is our own.
It's clear to me that you have to process a lot of unfinished business before you can get to this place. We have had to process all of the unspoken thoughts, fears, wishes, desires, and regrets that we could easily choose to bury, and often do.
I have said before that each day of our parenting feels extreme, with shifts from sheer joy to utter despair. We have higher “highs” and lower “lows” in our daily life than we ever had before. For the cycle of these highs and lows to be so short-lived and so frequent is what has taken time to adjust to. All in one day, I will have a rainbow of affect. But most days are good.
I'm at a point now where cherishing every day with Lucas and being involved in his growth and development fuels my fire to help others. I recently became a certified grief recovery specialist after going through the Grief Recovery Method and finding it extremely useful in processing my loss around what happened to our son. I'd like to help other parents of children with special needs process their grief.
I also became a certified DIR/Floortime provider in order to help other parents of children with developmental delays know their treatment options and that there is an alternative to Applied Behavioural Analysis (ABA).
As I relish in the joy of feeling Lucas's soft little warm feet next to me in bed and stroke his angel cheeks, my heart fills with warmth and pleasure. Being Lucas's mom is the greatest gift in my life.
We've come to see that our son is doing great and continues to show growth and development as his brain heals and as nature intends.
We have to accept that people will make assumptions about our son based on his behaviour that are incorrect and ignorant. Rather than turning into “Mama and Papa Bear” in attack or defense mode, we need to educate the public to change perceptions of behavioural challenges in children like our son.
We are ready to share our new normal with the world and hope that our experience can help others.