According to the CDC, the prevalence of autism in society is 1:68, with it occurring more frequently in boys (1:42). Yet, when I began my parenting journey, I never expected either of my children would have autism. in fact, I never really know anything about autism until Squeaker came along. Two years after his birth, I recognized that something was different. He was different. In Anne K. Ross’s book, Beyond Rain Main, she describes what we see often in our own home:
“He’s a steam cooker. The heat builds inside him until his lid starts to rattle and shake, then it explodes off and embeds itself into the ceiling. Then the pot cools, the lid falls back down, and we wait for the heat to build again.” -Anne K. Ross
Like Ross, I have learned as much about myself over these past 7 years of discovery about autism as I have about him. Who benefits more from routine? Me or him? Who has more an issue with noise? Me or him? Who needs more coping skills for frustration? Me or him? In fact, I’d say it’s just as possible that I’m somewhere on the spectrum. He’s got the diagnosis, but I’m the one learning to cope with the not knowing that comes with it. Bless my husband, who takes all of this in stride much better than I do.
What I’ve Learned Since Reading This Book
Though I often feel quite alone, I know that I’m not. I’m not the only one who’s experienced the damage caused by extreme meltdowns. I’ve had holes in walls from the head-butting and kicking that happens sometimes. And I’ve had toys whisk by my head. I’ve even had to protect my youngest child from dangerous thrashing, where Squeaker has no concept of who’s around him in the middle of these meltdowns. And, most of all, I’ve been much of my time feeling like a shitty mom because of it all.
In her book, Ross explains how the isolation happens succinctly, saying, “it was an insidious descent into isolation, one we were not even aware of. Not until many years had passed would we see how deeply we’d fallen into self-imposed seclusion.” Yet, they climbed out of it, just as I attempt to slowly crawl out of it myself. By going to church, attending events in the community, and opening up about raising both of our children, I’ve begun climbing out. It’s a slow crawl out of a very deep, dark cave of loneliness.
Being “Selfish” For the RIGHT Reasons
I could waste time blaming my son or his autism for this isolation, but the unconscious decision was ours to make. I gave up time out with friends, going to the gym, and so much more. Some of this is due to my own fears of leaving my child. But some of this is due to the lack of adequate support in the community when it comes to finding trained staff to watch my son. While I could give up, I choose to fight. I fight not just for my son’s rights, but our right as a married couple to spend time together alone.
In fact, the most important thing parents (any parents) can do while raising children, is dedicate themselves to their marriage. We need each other. And we’ll need each other even once our children have left us. But then there’s that nagging part of my brain that wonders if we’ll always be raising my son.
Rain Man is a Myth. Autism is a huge spectrum.
Guess what? All children with autism are different. No, really. You may see some autistic adults out there who resemble Rain Man with a vast knowledge of useful information. It’s an unfair comparison, really. All children are different, and children with autism are children. Thus, all children with autism are different. And autism is such a broad spectrum. As I read this book, at times I felt jealous of the conversations Ross had with her son, even at my son’s age. Well, Theodore Roosevelt said, “Comparison is the thief of joy.” Nothing could be further from the truth.
As parents, we have a tendency to compare ourselves and our children to those we see around us. As a society, we have a desire for sameness. Of “keeping up with the Joneses” of the world. We must stop, lest we instill permanent damage to ourselves or our children’s psyches. Both of my children are wonderful in very different ways. Squeaker loves intensely, leaping at people with hugs and kisses they never see coming. Big Guy is more reserved, but more verbal and with greater ability to share his insights about the world. I cherish both of these things that separate my children from the pack.
Some children with autism cannot speak. Others can speak, but only a little. While some have intensely huge vocabularies, they still lack social skills. And each child comes with their own sets of repetitive behaviors and need for routine. Who is Rain Man? He’s a character in a movie played by Dustin Hoffman. My son has autism, but he’s not Rain Man, and many autistic individuals make this same distinction. Don’t call them Rain Man. They are people. Real people. They’re not this fictional character you saw in some movie.
Stereotypes Can Be Dangerous
Another thing I’ve found while raising my child is that people want answers. They saw some movie with an autistic individual and want to know if my son does this or that. They fail to understand that once you see one child with autism, you’ve seen one child with autism. Do you sometimes see stereotypical autistic individuals? Sure. But as a society we have a habit of stereotyping individuals, and that can be dangerous because we’re all just people in the end. We can either exceed expectations or fail to meet them entirely. It’s best just to get to know each person and figure out how to help them once you know them entirely.
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A Humbling Experience
Raising child can become a humbling experience. Yesterday, I cried in front of an entire congregation while up in the choir loft. I cried while I stepped out of the choir loft to assist my son, who had a meltdown on the pulpit in front of an audience. Then, after getting him taken care of, I cried more in private, washed my face, and came back into the choir loft again. In truth, it was all my fault that the meltdown happened in the first place. He didn’t want to go to church that morning, but I was stubborn. He
Then, after getting him taken care of, I cried more in private, washed my face, and came back into the choir loft again. In truth, it was all my fault that the meltdown happened in the first place. He didn’t want to go to church that morning, but I was stubborn. He had to go. I refused to allow him to give up on church even though he expressed boredom and loneliness to me before we left. He had gotten two of his three allotted Xs for the day before we even left the house. It was a recipe for disaster, but I took it on anyway.
My Selfish Purposes
Of course, wanting to raise my son as a Christian, I refused to allow him to give up on church even though he expressed boredom and loneliness to me before we left. He had gotten two of his three allotted Xs for the day before we even left the house. It was a recipe for disaster, but I took it one anyway.
What can I learn from the experience? While some parents force their children to do things they don’t want to do, I should not force his hand when he’s having a rough morning. So maybe I fear judgment from people who “have more control” over their children, but my son is what matters in the end. And if I’ve learned anything from all that I’ve read, it’s that eventually, he’ll find his own way so long as we treat him with dignity and respect. Sometimes that means letting go of the small stuff.
When I let my son be himself, he’s joyously happy. He tells me I’m the best mom in the world. I have moments where I shout at him and immediately feel guilty, yet he comes to me later and tells me he loves me as he leans his head against my arm and traces his fingers along the veins in my arm. I constantly feel humbled by him, and there’s nothing wrong with that. In the end, he teaches me as much as I teach him.
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Read Beyond Rain Man Yourself
I find great joy in reading books like Ross’s because they are deeply relatable. While it seems we’re alone in our journey with autism, nothing could be farther from the truth. Think about that statistic again. 1:68. That also means that 1:68 parents are raising a child with autism. In a population of 680 people, 100 of them have autism. That’s huge. We’re not alone, and we’re not raising Rain Man. Look beyond Rain Man and see your child as an individual. Cherish the moments of small victories. Love what’s good about your child. Cry when you need to. Reach out for help when you see someone willing to extend it. Most important, love. Love. Love. Your child needs you and you will be enough for him/her. Read more to find out:
Beyond Rain Man Giveaway
Enter below to win your copy of Beyond Rain Man: What One Psychologist Learned Raising a Son on the Autism Spectrum (affiliate link)!
Disclosure: I received a free copy of this book in exchange for my honest review and Anne Ross donated an extra copy for one lucky reader. I hope you’re it!
How has raising a child changed your life?
Originally posted 2016-08-08 14:08:32.