What if the meaning far outweighs any hardship?
People who know me would say I climb mountains that don’t need to be climbed. Writing books, for one. There isn’t much at the top of that mountain. To write a book takes considerable time and a bit of money. There are few serious readers to be found anymore. And yet, a book is an accomplishment. There’s a sense of personal gratification at the end.
I like difficult things, maybe more than most people. Except for this. I like to choose the difficult thing I’m going to do. Is that unique or common? I want to pick the task to struggle over. Otherwise, I’m like (I imagine) most people. I don’t like difficult things one bit.
Many hard things in life don’t give us a choice. For younger people, it might be your home life. For older people, it’s often your health. When you’re in between those two life stages, no longer a kid, not yet old, you have the most autonomy. You can navigate your life toward as much choice as possible. Maybe you don’t realize you’re doing this, but I think it’s a universal goal. We want to have a say in how we live, and control over how our lives unfold.
I didn’t get to choose my son Percy’s disability.
Our adult autonomy is challenged by our children. I didn’t get to choose my son Percy’s disability. It would be classified as a difficult thing, not optional. I embrace it because I embrace my son. Percy isn’t difficult. He’s an angel. His disability? It’s a daily question. Parents of special needs kids will understand what I’m talking about. In the Facebook groups that we’re all part of, we share questions, concerns, and dilemmas of everyday life. It’s messy at times, chaotic and stress-inducing. We don’t have major crises every day but when one arises (such as Percy swallows a marble), we’re scrambling for a fast solution.
We’re tight-lipped about all of this in public. No one says when you enter the special needs community, “Keep your struggles within the club.” It’s something you sense to keep a lid on. You aren’t about to air complaints to the world anyway. Also, you don’t want to give would-be parents any more reason to terminate their special needs pregnancies.
Instead, when you ask us about parenting a child with special needs, we’ll downplay the problems. We say every child brings his or her difficulties. This is true. It’s part of the parenting experience to be in over your head on a daily basis. We’ll also say, having a hard time as a parent isn’t reserved for children with special needs. Of course, kids who are considered “neuro-normal” offer challenges. Take your pick from rebellious behaviors, learning issues, and bad habits, to everything we can think of having done as kids ourselves.
Parents want to know it’s going to be OK. They don’t often accept being told it’s OK, unfortunately.
If we’re particularly good at smoothing over our parenting experience, people walk away impressed. “He really has a handle on this special needs thing. Good to hear it’s so manageable.” Personally, I see nothing wrong with this impression. Is it somewhat mistaken? Sure, and yet it can right the balance. Many false assumptions are made when you look at our kids with special needs. Every parent would agree their children should be judged by their qualities, not deficiencies. Counterbalancing the eye test—your child looks different—with positivity benefits our special kids. I agree with this in nearly every case.
There’s only one time when I think smoothing over the details hurts. It’s with parents in the middle, those who are struggling with a new diagnosis. They’re facing shock and even shame over nothing they did, nothing their child has done. The message they receive from other special needs parents can be counterproductive. “It’s going to be OK” often isn’t enough. They see our pat answer for what it is, a well-meaning but slightly manipulative attempt to manage their emotions. It’s a gesture but not always a welcome one. Parents who hear the news—your unborn child has special needs—face a future of sudden uncertainty. I believe it’s in every parent to want to move forward. Parents want to know it’s going to be OK. They don’t often accept being told it’s OK, unfortunately. We know this.
My wife came home from the pediatrician’s office in tears. Seven weeks earlier was our 20-week ultrasound. At that time, we were given the news that our baby was a boy. We were also informed our son had “markers” indicating Down syndrome. These were signs which included a thick fold of skin at the back of the neck. The doctor told us the markers often cleared themselves up. I didn’t even plan to attend the next ultrasound.
At 27 weeks, the images showed certain signs of Down syndrome, including a heart defect. It was true, I thought. I had endured a couple of restless nights after hearing the news of indicators. Now I was in shock. We had one young son with zero health problems. I thought I knew what fatherhood entailed. A baby with special needs changed everything. How healthy would he be? What kind of life would he have? Could I handle the demands of being a special-needs parent? How would my life change? How much would I give up?
At 27 weeks, the images showed certain signs of Down syndrome, including a heart defect.
Reservations and fears about special needs led to one question: how hard would it be?
That I worried was a further shock. I was a writer, a billy goat of a person used to climbing mountains. When I took a breath, I didn’t doubt I could adapt. The demands of the situation would present themselves, like anything else. I would take it one step at a time. My concern wasn’t how I would manage. It was how I would react. Would my heart be in it? Would I adopt a bitter attitude because I had been handed a new job as a special needs parent? My wife and I didn’t believe in saying no to a pregnancy. We were committed regardless of the outcome. It made the mountain even taller in my mind. I hadn’t chosen this challenge. There were too many others that I wanted to conquer. These included a literary agent in New York and a book to be published by a major publisher. Mine was the usual dream of a writer, the same as a would-be Olympian who wanted to win a gold medal.
There are far-off dreams we don’t actually go for. Living in another country, being fluent in a foreign language, to play a musical instrument are a few. It’s a daydream, probably therapeutic. A daydream releases you from the limits of everyday life, if even for a moment. Wanting a big, impressive thing to happen is part of your identity. It doesn’t have to go any further.
Actually pursuing a dream is something else. It takes a chunk of your life you can’t afford to give away. A dream requires an incredible amount of time, patience, and sacrifice. I had already devoted years to my pursuit. For the cause of serious writing, I had given up things that most writers give up for their art like a steady career and kicking back on nights and weekends. Over the span of two decades, I had completely rearranged my life for the writing dream. Success was close, I thought. Now all was changed. Through my son’s special needs diagnosis, I was being told my time needed to be spent in another area.
I sat with my son’s diagnosis for two weeks. I avoided doing online research. I knew I would run across the politics of special needs. It was fashionable to recommend termination. In order to support the termination option, news about special needs was generally negative. Instead of doing research, I went through a bargaining stage where I imagined how difficult Down syndrome was going to be. I figured it would be easier than I imagined but more difficult than I expected. Like my writing dream, Down syndrome would change my life. And yet, I didn’t have a personal dream tied to Down syndrome. It was a thing to understand and work with because my son had it. I would do whatever it took for my son to be healthy and happy. How happy I would be in the process was my biggest fear.
When I finally went online, I found this statement. “Caring for a child with special needs is no more difficult than another child.” It came from a nonprofit group website. This claim was reassuring, if incredible. Did they mean special needs wasn’t really an imposition? Or, were they saying neuro-normal kids were enough of a handful, special-needs wasn’t worse in comparison? Either way, it seemed at the time a stretch to make this claim.
I’ve journeyed with a son with special needs for five years.
I’ve journeyed with a son with special needs for five years. I can say the message “it’s no more difficult” was untrue and continues to be. It may not be untrue for everyone. And yet, for the families I’ve known who have children with special needs, it’s untrue in many cases.
There are different kinds of writers. Authors of thrillers, romances, and fantasy/science fiction are mostly all about fun. A serious writer is about enjoyment but through the exploration of unpleasant truths. Perhaps all serious writers are slightly misanthropic, but I don’t think that’s it. Serious writers want to make things better. They can only see one way to do it. It doesn’t come by shading the truth to manage emotions. It comes through following the truth of a situation to a greater understanding. The serious writer believes a situation holds some understanding we can learn from and ultimately accept as good. It’s why I probably rejected the happy-sounding news that my experience would be as easy as our first child. Even when I didn’t know for sure, I sensed it wasn’t leading me to understand. It was a placebo.
I wonder if parents wrestling with a special needs diagnosis want the truth.
I wonder if parents wrestling with a special needs diagnosis want the truth. They want to hear it will be difficult. They even want to see the exact ways. Then, the truth of the situation can show them, “it’s going to be OK.” Not because it’s going to be easy, but because the shock wears off, the work becomes manageable, and the reward is worth it.
Why I wrote this book: to show it’s going to be OK through the honesty of one special needs case. We can’t ask new parents to believe something we would like to be true but isn’t. Conversely, we need parents to see that no hardship is too great. We could give the worst-case scenario (whatever that might be) and the choice for life would still be worth it.
A special needs pregnancy is a unique life event. It hits everyone where they live with the burdens they already carry. It’s a complex thing. The special needs community exists, in part, to help expectant parents. Books like this one are written primarily for that purpose. Those of us on the other side of the diagnosis, the birth, and the first few years of follow-up care, we want to help new parents through the confusion of a prenatal diagnosis. How can we ease their burdens? How can we allay their fears? We can shade the truth.
Or, we can describe what special needs parenting is like. This route involves bearing the secrets, describing the lows as well as the highs. Will it make things worse? Parents in the shock stage of a prenatal diagnosis might not want the truth. Shading the day-to-day life-to-come may give parents time to accept the new reality. Perhaps this is true.
For parents like myself, in the shock of a new diagnosis, the truth of what parenting would be like was in short supply. There’s a saying, someone who loves you enough to tell the truth. Where the unvarnished truth is told, it’s always about the child with special needs. “He or she needs X surgery. Will likely be in the NICU for XX number of days after birth.” The experience of a parent facing a special needs diagnosis is less available. “It’ll be OK.”
I learned that “how difficult would it be?” was the wrong question. “How meaningful will it be?”
Parents can always take time away from any kind of advice. I did this myself. For parents who want to know the truth and to have it encourage them, this book goes into detail.
I learned that “how difficult would it be?” was the wrong question. “How meaningful will it be?” The answer to that question is easy. “It will be as meaningful as anything you’ve ever done.” The difficulty of special needs isn’t important, it turned out. The goal of my child smiling, eating, walking, playing, and talking outshone any problem it took to get there. It’s why I don’t believe it breaks the code to share the hardships. They direct us to the reason for enduring the challenges, which is to nurture an irreplaceable child who belongs to us.
Maybe I only engaged with special needs, at first, because my son needed me to. Then, maybe I began to see the calling in what I was asked to do for my son. It was a rigorous process that made my son happy. What if caring for my son with Down syndrome fulfilled the reason I chose to write books to strangers? What if the meaning I sought was found in my son’s joy? Could I lose my chosen dream but find the blessing of it another way?
Without hardships, do the blessings we share make sense?
Maybe I would end up doing this for myself as much as for my son. And maybe hardships are a part of it. Maybe they don’t need to be hidden or managed. They’re features of the transformation from a reluctant and worried father to a practiced father/caregiver.
Without hardships, do the blessings we share make sense? How can a would-be parent understand the awesome destination of special needs without the path?
This post first appeared at You and Me, Kid.