Throughout my almost 15 years of being a parent, I have accepted some days are just doozies and the game of life wins.
I am never more at a loss than when our non-verbal, Autistic 13-year-old has a rough day for seemingly no reason. By and large when Carson is with us, his parents, everything is fine as far as behavior. It’s because we know him so well and it’s second nature for us to not put him in situations sparking anxiety. We probably baby and protect him too much, but our way works and allows us to live a good life with him.
For Carson, the problem is we can’t make life this simple for him all the time. There are times, such as in school, when he needs to have a flexible brain, independently problem solve, understand the challenges and exercise good judgment. Sometimes things don’t go smoothly for him, and significant issues occur. It’s tough on everyone when he is in turmoil.
For one, Carson cannot articulate what could set him off beforehand and struggles to explain afterwards what went wrong. He has the ability through his device to tell us or his education team, but he refuses. He gets ashamed when he acts out or misbehaves. It’s a stressful thing for him as well as the adults and peers around him. Throughout our live with Carson, we have learned some of the triggers. He said this week school went south because he didn’t get to finish an art project before the class ended, but he must be more adaptable. He might not even fully understand why he lost his composure, refused to accept an opportunity to take a break and became deviant.
It’s frustrating not knowing what causes things with Carson to go downhill. We will just continue to try and work with him to communicate with us when he’s frustrated and do better for him. One of my long-range goals in life is for Carson to be a happy adult. I have no idea what this will look like. It’s going to be challenging. I do know when he is laughing and having fun with his mom, brother, family member or teacher my heart is as full as it gets. The goal is to see these moments more but it’s a complicated journey full of pitfalls.
The words of Emily Perl Kingsley and her essay “Welcome To Holland” often reverberate in my head during times of struggle. It’s about special needs kids and a feeling of loss, but many aspects of this message can apply to all the various obstacles parents face in their individual parenting journeys.
Each household has stuff weighing on the minds of the adults and kids. These concerns vary widely depending on the life experiences. On Monday, Carson happened to have a rough day at school and his big brother, Beckett, 14, also had some heavy things going on in his life, resulting in Pam and I struggling to find the silver lining.
The author’s words hit home for me especially because of our sons’ individual challenges and struggles. I think for many parents the reality of what this adventure is on a daily basis is quite different than envisioned before having children. It’s not bad. I can only speak for myself in this space. It’s just different than I imagined with far more complexities and emotional rollercoasters. Kinglsey hit the right marks with her essay.
“I am often asked to describe the experience of raising a child with a disability — to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David.
The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go.
Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around …. and you begin to notice
that Holland has windmills ….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy … and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But … if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”
