By Tara Cohen
The next person who tells me that God chooses special parents for special-needs children is getting smacked upside the head. That’s it. I’m done being polite. Without question, that is one of the least helpful, most aggravating platitudes with which I, as a special-needs parent, am assaulted on a regular basis. There is an endless list of them, including, “Isn’t he so lucky God gave him such a wonderful mother?” and, one of my favorites, “Oh, God has a special, special plan for those children, I just know it.”
Let me offer one caveat here: I am a Jew. I am also an atheist. And no, I don’t consider the two mutually exclusive. It all really depends on definition and semantics, but the upshot is that I don’t believe in God or Christ, nor am I into being Saved or Blessed or Reborn. It also means I am not big on having other peoples’ religiosity poured on me like so much boysenberry syrup on my perfectly unsullied blueberry pancakes. Cultural religion and atheism can blend for me. But having a special-needs child and having God in my life, those cannot exist in tandem. And since the kid is here to stay, God is out.
If God had a choice and decided to give Will autism, to inflict this lifelong albatross upon my child and my family, then God is not a benevolent father-y type of being, which essentially discounts Judaism and a significant portion of Christianity, although I think Catholicism is still safe if you substitute “cross” for “albatross.” Again, semantics.
Now, take a breath. I hear the gasps and Hail Marys. I hear the Schma being recited and rosary beads slipping through fingers. I hear people praying for my son and our family and our poor forgotten souls. And honestly, I’m touched and grateful when people pray for us because it means they care and wish us well. Just because I live without religion does not mean I begrudge others their choice. My problem is not with prayer or faith nor with God or religion. What I take issue with is being inundated by self-serving, irrational, “rah rah God” fortune-cookie lines. I take issue with people who praise God because their team wins but never wonder where He was when they lose.
With autism, we all lose. And I wonder how, for the faithful, this is not God’s area. I hear the protests that God gave Man free will, and Man’s free will has polluted this planet to the point that we are creating these problems for ourselves. And so, they tell me, God simply puts these children in the hands of the most capable parents possible. They say God doesn’t choose who gets autism or cancer or polio. God has no say in that; He simply helps us along our collective way.
Or better yet, people say this is just more fallout from Pandora or Eve. Or this is a test. I really like that one. It’s a test of faith. Either way, it’s not God’s fault. Blaming God is blasphemous. And yet this brings me back to one of my favorite loads of bumper-sticker-theology, “God has a special plan for these children.” Really? Because if giving specific children autism is not God’s doing, then where exactly does God’s plan come into play? How can something God doesn’t do be part of His plan? And if it’s a test, then how exactly does my son pass it given that he will most likely never understand such abstract concepts as God and religion? Certainly God would not challenge my son as a test for his family. That would mean God chose Will in order to test others, and once again, we’re back to God not having anything to do … with God’s plan.
As for giving these children to special parents, here I draw the line on these things being a matter of opinion, hence the full-blown-smack-down promise to the next person who spews her verbal religious dreck upon me. I can personally attest to the absolute fact that no where near all special-needs parents are “special” or “great” or “doing a phenomenal job.” You know what they are? They’re regular people in untenable circumstances. Many of them are just surviving day to day. Some are doing their personal best, but, just like any other group of parents, some are not. Some take the challenge of a special-needs child as an opportunity to become a truly remarkable parent. Others permanently live in the sucking-chest-wound-moment-of-diagnosis paralysis for years, just getting by each day. Most fall somewhere in between.
Were these children given to the best possible parents, they would all be born to incredibly wealthy, emotionally stable speech pathologists or that incredibly rare and invaluable breed we call the “Special Education Pre-School Teacher.” But this is the real world, and kids with special needs are born to families of every race and religion, to parents of every education and income level. To normal, everyday, not-specially-selected-by-God parents just like me. Of course, this takes God out of the equation, and I know that scares the beejesus out of some people (and maybe the actual Jesus out of others). But life is messy and complex. It goes beyond the capabilities of tee-shirt-slogan-level wisdom.
Now, I know special-needs parents who have faith. For some, the two can very peacefully co-exist without the dissonance they create for me. Truthfully, many parents feel their faith is what enables them to rise to their daily challenges. But never once has one told me s/he felt chosen by God for the olympic task of properly raising a child with autism. No, those little daily-affirmation-calendar nuggets only come from the faithful whose kids draw with markers rather than refusing to eat until the right three are arranged just so on the windowsill. Because those who have both God and autism at home know there’s nothing remotely true about the favorite reassurances of the Bible-toting soccer moms.
My three-year-old doesn’t play soccer. He doesn’t say “soccer.” He doesn’t even say “mommy.” He doesn’t make friends or tell jokes, give kisses or ask questions. He is more than any self-contradictory clichéd religious banality could sum up. He is complex in his seeming simplicity, consistently challenging in his sameness. He is a child with autism. He is my child. And I shall put my faith in him.



Tara, I said it on Facebook, but I’ll say it here again:
“Dear sweet cheese and rice, your way with words has only become tighter, cleaner and oh so cutting! I remember being on the rough side of your tongue once… not a place I ever wish to return to. This is brilliant… brilliant. Wow. I shouldn’t be stunned, but I am.”
As I have a brother with severe autism, this article rang me like a tuning fork… keep up the great writing!
As part of this equation, words often fail us when it comes to our situation. People have said, “I can imagine what you’re going through,” and without being crass, the obvious response is, “No you can’t.” Walk a mile in our shoes and then you can maybe slightly begin to understand the daily, endless struggle my wife so eloquently described. We don’t wish this on anyone, and we are not seeking sympathetic approval. In the course of trying to make sense of the random pain, there are many avenues we seek for comfort. My wife’s words, spun beautifully with heart-rendering clarity of purpose are both a cathartic release and a balm of serenity in a world that mixes hurt, anger, and pain with our quest for family joy.
So well written, Tara. And I thought Marty was the writer in the family.
I look forward to reading more of your insights.
oh! and I love the design of the site – really really good
Darn good logic, Tara.
You have touched on a subject that has always bothered me but I have never been able to express it as well as you have in your blog. It is refreshing to read something that reflects my reality in such a wonderful way. I look forward to reading more!
I Like the entry. It prompts a strong emotional response.
IMHO this is when blogging is at its best…..one person’s perspective shot out into the universe.
I have a different take on the world…..but hey, this aint Matt’s blog.
T, I really love the way this piece evolved. There’s this strange disconnect many of us feel when it comes to god and the struggles of individual and collective life that I think you captured amazingly well. I hope that parents like you, and those who disagree with you, will appreciate your candor and the grace with which you approach the challenge of raising children, particularly one with special needs.
Tara,
I love this article. It reminds me so much of our first conversation in the gym about religion. Please keep writing…your perspective is so real and honest. Looking forward to meeting your children.
The relation of this article and our conversation today is intriguing … I’d said Our conversation made me write up a little personal essay about Faith, Religion, and Autism. I’ll show it to you sometime. I love talking to you, and listening to you. Never stop speaking from your heart with the beautiful passion that it holds. The world would lose much if you did.
It’s funny how different our beliefs are and yet we can so easily share the pain and joy that comes with being who we are. You better plug your ears though because you might hear me tell my God – “Thanks” for you
Purely sanguine and salty! I loved it.