“I live for the manageable days and pray that as time goes on, I find answers for the days that are not,” writes blogger Katie Emde.
From the author’s blog, A Journey for Avery, via Facebook.
By Katie Emde
I knew the second he woke up, he was not at his best. I could tell he was upset about something but figuring out what it could possibly be was going to take time.
I watched as he slammed his cup down on the table, so deliberately that it seemed capable of punching a hole right through the smooth, golden brown surface. He seemed manic, laughing hysterically at a joke that I wasn’t privy to, and then just as quickly, the tears would flow uncontrollably. He was spiraling and I had no idea what to do. No viable solutions for when he flipped a switch and became this unrecognizable person; this unrecognizable person who is also my child.
Our six year-old son Jackson often begins his day spinning like a wooden top. The whole family stares as he goes round and round, creating chaos and destruction with every spin, and we hold our breath, worried about the next meltdown that will occur when he finally topples over.
My name is Katie, and I’m a mom to three children, two who have autism, including my youngest son Jackson. My husband and I built a life together that is vastly different than what I had pictured or dreamed about before autism entered our lives. We’ve had to make numerous sacrifices which means there’s no white picket fence or dream vacations. Nope, those have been traded for a life of debt and paying for therapeutic services for both of our boys.
I love Jackson, but his struggles are overwhelming, and I feel completely burned out most days. Sometimes it doesn’t matter how many tools we have to support him or how many techniques I employ, he continues to spin out of control because this life is hard for him. This life is hard for our family. When he has one of these days, which seem to be more common than not lately, I try to prepare for what the day might bring. A day where there will inevitably be doors slammed. A day where I need to wear my hair in a bun because that makes it less likely of Jackson getting ahold of it and pulling it as hard as he can, a day when the top doesn’t stop spinning until at last I hear his breath deepen, signaling that he has finally fallen asleep.
I often begin these days of turmoil with a few deep breathing exercises along with an internal pep talk, and pray it does the job. The job for a day that I know will exhaust me to the core because a bad day for him means a bad day for our entire household.
I try to prepare but an unregulated, aggressive Jackson translates into manic behaviors which are truly unpredictable. Behaviors that occur when his eyes glaze over, and he enters a new dimension. A dimension where throwing books and kicking me in the face becomes a regular occurance and elevates into a level of chaos we see way too often, a level of chaos that includes grabbing a chunk of my hair or scratching my arms until they bleed.
His behaviors affect the whole family, every minute of every day, and there is never a second of peace and I wonder —
What is life going to look like in five or ten years?
If I am honest, there are no answers, only more questions like —
Does he understand that he shouldn't act like this?
Does he care that he hurts me?
And the question that haunts me —
Will this be our life forever?
It is difficult for people who don't live our life to believe that our youngest son has hurt anyone, and I don’t blame them. If I were an outsider who heard my stories, I would have a hard time believing that they were true, but it is not our job to make others believe us. No, it is simply our job to survive another day.
Some days are manageable and some days are not.
I live for the manageable ones and pray that as time goes on, I find answers for the days that are not.
Otherwise, I’ll simply have to become comfortable with manageable, somehow.
Katie Emde lives in Canada with her husband and three children, two of whom have been diagnosed with autism. Katie is an active speaker in legislation and in classrooms about the importance of inclusion.She shares her family's journey with autism online at Facebook @ A Journey For Avery.
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