“It feels like our lives are totally out of control. And there is nothing I can do about it,” my husband replied.
I looked at my son’s doctor, wondering what she might say.
She looked down at her paper and wrote something.
I glanced at my husband, and gave him a weak smile.
“He’s not used to this,” I thought. “I’m usually the one asking the doctors for help, for information, for education, for guidance…”
Finally, the only professionally trained expert in the room responded.
“Parenting a child with special needs does create a kind of constant turmoil and vigilance. It’s figuring out how to deal with it that matters.”
My husband looked defeated.
He was hoping she would tell him there was a way to “fix it.”
He was hoping she would say it doesn’t have to be chaotic.
He was hoping for what I think we all have wanted, at one time or another, when we sit across from someone who has expertise in our children’s needs.
A different outcome, a different diagnosis, a different treatment plan – he was hoping for something other than the unfamiliar, painful and messy reality we face every day.
What he got was a reminder – this is our life, and like it or not, it can be totally out of control.
We had a really good day yesterday. My boys were stable and happy. They ate well. We even saw a movie together without any meltdowns over noise or crowds.
It was wonderful, and much needed after airports and presents and Christmas over-stimulation and a lack of routine.
It was by far, the best day we have had in a month.
Until 7:45 PM.
We had decided to watch a little bit of the movie, Homeward Bound. It seemed like a nice, relaxing, before-bed choice for my two animal loving boys.
Then we got to the part where the little girl is lost in the forest, and the dog helps her find her family.
My youngest son panicked.
“That would never happen. She would’ve died out there. Turn it off! Turn it off!” he yelled, jumping up from the couch and wildly flailing his arms.
An hour later, he was calm.
But not before what felt like World War Three broke loose in his mind, and in our home.
It came out of nowhere.
One moment, we were happily snuggled on the couch.
The next, my son was banging his head on the wall and crying uncontrollably.
I went to bed, exhausted and defeated.
I replayed everything I had done or said, as my child lost control.
I worried about our decision to hold off on a medication increase.
I felt guilty for not being more attentive to my oldest son, lost in the cross fire and silently retreating to his room.
As I was about to drift off to sleep, I thought to myself, “It’s like we live on the San Andreas Fault. We never really know when an earthquake might happen.”
The Constant Vigilance of Parenting a Child with Special Needs
An earthquake is an appropriate analogy I think.
The hypervigilance of living with a dysregulated child means you are always alert and never really sure when the “big one” will hit.
Sometimes, the tremors are mild, and we breathe a sigh of relief.
Sometimes, they take us out with a destruction that cannot be stopped and must be lived through.
But just as true, is the way we learn to cope.
We take each day as it comes.
We don’t worry about the future, as much as we focus on making the best decisions we can every day, in the moment.
We hug a little tighter.
We smile a little brighter.
We pray a little harder.
We love all the more fiercely.
And we start fresh, rebuilding each day with everything we’ve got.
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