“Recently, a fellow Mom shared her Autism poem with me. I immediately messaged her that one line in particular really, really struck me – that Autism parents essentially are a shady tree. We are our child’s safe spot and they are safe in our shade.
The true confession though: this idea literally haunts me. In many many ways. What if my shade isn’t enough? What if it’s too much? I have designed this world for my child. In this world, he is safe. And, in many ways, he thrives.
We avoid unnecessary triggers.
We talk out and solve problems.
We come up with creative solutions.
He is safe in this tiny world.
After my separation from my husband, I lived at rock bottom for a bit. Me and 3 kids lived in one bedroom at my mom’s. It was crowded. My son swore that once he had his own bedroom and space the behaviors would lessen. He would be less triggered.
So, I rented a really expensive apartment I couldn’t really afford. His behaviors did lessen, tremendously. His progress is nothing short of amazing. I did this to keep him safe in my shade.
Virtual school and Covid-19 wasn’t working. It was a new district and virtual just doesn’t work for him in general. I pulled him from school for home school. To keep him safe in my shade.
On nice days he would ride his bike to the park. He was involved in one physical fight. He was never allowed to ride his bike alone again. Again, to keep him safe in my shade.
He runs a business. I lend him money and drive him around. To keep him occupied and busy – which he likes. At times, this is an inconvenience for my life and to his siblings. But, it keeps him safe in my shade.
As he has aged, my shade has had to grow. It seems the older he gets – the more I am responsible for. I am now a life planner. In every sense of the word. But, there’s flaws in the design which terrify me.
First, the biggest and most obvious – what happens to him when I am gone. What if my shade suddenly disappears? Life is cruel and uncertain. Would he know how to survive?
On a smaller scale, what happens when he’s too old and needs to leave my shade to evolve and grow into an adult? Have I taught him enough skills? Have I prepared him enough?
Then, there’s this ever-present nagging feeling. Since I am his shade, and in essence I am hand carving his life with him… if he fails, if he doesn’t make it, it’ll be all my fault. He will have failed because I will have failed him.
Recently, a huge hole appeared in my shade. It had been growing for awhile. But, I was so focused on maintaining every other piece of the shade. My son came to me and said he is very upset he does not have a single friend and his childhood was stolen by not having normal childhood friend experiences.
Truth bombs are the worst. They can bring us to our knees. Yes, my shade had protected him. But, it also crushed him in ways. He’s such a unique soul. I didn’t want him to meet bad kids or get involved with the wrong friends. He’s kind and caring and far too giving. It is safer for him to have no friends than the wrong friends.
He can’t meet friends at school. Because he doesn’t go to school. Because traditional school failed him. And, I created an answer for the educational piece, but not the social piece. He volunteers, but not where other kids volunteer. He volunteers places I found and he enjoys. He doesn’t like sports or video games. He has very specific interests, as is common in Autism. That makes it extremely hard to find friends.
I patched the holes and extended my shade some more. I posted a Wanted: Friends ad on a local Mommy’s group. Some people answered and he’s been texting back and forth with the one kid. I have no idea what will happen. But, he has hope.
Autism is tricky. There’s so many layers. It’s a constant roller coaster ride in an amusement park I didn’t really want to go to and can’t get out of. Sometimes, we’re let off the roller coaster, and for a period of time we ride the leisure train or the floating tubes. We can’t ever get out of the amusement park, though. We’re locked in. And, the amusement park keeps growing. And, the bigger the park grows – the sunnier it becomes. And, with this, the more my shade must grow. And, that, is exhausting. And, terrifying.
But in the end, I can only hope I’ve done all that I can, and it is enough.”
This story was submitted to Love What Matters by Jacqueline Waxman. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more from Jacqueline here:
‘You’re the parent who tries everything and gets nowhere, but still doesn’t give up.’: Woman pens ode to parents of children battling mental illness
‘The school district took the very blunt stance, ‘It’s my way or the highway.’ Special education is under attack with little pushback.’: Special needs mom urges ‘we must draw a line in the sand’
‘I was late to work today, again. Holding back tears, visibly shaking after a coworker belittled and broke down whatever piece of soul I had left that.’: Special needs mom’s plea for kindness
‘There are parents who gave DNA and life, and then there are Moms and Dads. Literal angels on Earth.’: Woman urges ‘don’t forget just how incredibly lucky you are’
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