Steve Edwards wonders why our culture makes it so difficult for parents to ask for help.
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Though I tried my best not to complain on social media, sometime in the first few months of our son’s colic—which is what we called it then—I took to Facebook and proclaimed that I was sick of trying to figure out what was bothering him. Was he hungry? Was he wet? Was he tired, teething, testing us? No matter what my wife and I tried, he cried and screamed and fussed. He did not sleep for more than a few hours at a time. We were first-time parents, and out of our minds with worry.
A friend of mine—a writer and a father himself, and a good one—replied to my post. “It’s not him,” he said. “It’s you.”
He offered me reassurance that what I was feeling was normal and would pass, and at the time it was what I needed to hear. If the problem was with me, I could work on it. I could fix it. And even if the process was slow or messy or shrouded in fear, at least I wasn’t alone. New dads felt this way.
But what neither my friend nor I knew was that, actually, it was my son—he did have a problem. His body didn’t produce enough sucrase enzymes, which meant he had trouble digesting sugars. As a result, his entire gastrointestinal system was inflamed. Imagine having a terrible stomach-ache and trying to eat, play, or explore your world. Imagine trying to sleep and waking sporadically with reflux. Imagine sleep-deprivation and how psychotic it makes you. And imagine all that with no words, nothing but your crying and screaming. That’s what our son endured for the first three years of his life. Yes, three years. And, yes, we had taken him to the doctor—over and over, in fact. First they told us that it was colic. Then they said it was a “screechy phase.” Then it was a soy-milk protein intolerance. When we demanded to see a specialist, our pediatrician referred us to one but said she was only doing so for our benefit, because she thought it would make us feel better—and because she had planted that seed of doubt, we didn’t take him. We tried instead to gut it out. The decision cost him another year of pain.
Why are we afraid to ask for help? Why is that considered weak? And maybe more importantly—how do we learn to listen to each other and feel real empathy?
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It wouldn’t be until just after our son’s third birthday—after we had moved across the country from Nebraska to Massachusetts for work, and after we had finally seen a specialist who performed a colonoscopy and an endoscopy—that we would discover the sucrase issue. Once the problem had been identified, we got medicine and miraculously began to sleep the night. And though medicine and sleep haven’t solved all of our son’s problems, my wife and I feel incredibly lucky. The gastroenterologist who listened to us and took our story seriously—he saved our lives.
As lucky and grateful as I feel, however, I remain troubled by how we got to such a desperate state in the first place. A sucrase deficiency is a somewhat rare condition, and we obviously couldn’t have prevented it. And it wouldn’t make much sense for doctors to assume that every fussy baby has a problem like our son’s. And I realize—believe me, I do—that sometimes shit happens and it’s just your turn to suffer. I am not here to cast aspersions or blame anyone, even though at times I might like to. No, I just want to say how disconcerting it is to look back on that chapter in our lives and see in myself and others (doctors, friends, family) such knee-jerk optimism and denial.
None of us wanted him to be sick, so we searched for explanations that precluded the possibility. I was the worst offender. If I worked harder, if I were tougher, if I were more of a man then my family would not be suffering. That’s how the story ran. And neither did I want to make my failures with my son public—so I downplayed our struggles to friends, refused to reach out to people who might have helped, didn’t demand a more thorough accounting from our doctors. In the end, part of the reason my son suffered for as long as he did was because I was too proud to admit that his problem was bigger than me.
I live with that. I live with that and I wonder about the culture that aided and abetted my denial. Why are we afraid to ask for help? Why is that considered weak? And maybe more importantly—how do we learn to listen to each other and feel real empathy? How do we honor pain, our own and others, when it is so confusing? How do we confront pain with heart instead of shaming it away?
After three years of chronic sleeplessness and hurt, our son now struggles with developmental and behavioral issues. He has a speech delay and, despite having a big vocabulary, his receptive and expressive language is not where it should be. Translated: at four, he still can’t really talk to us and express his ideas, and as it would with anyone so deprived of communication, it leads to meltdowns. He yells, screams, cries, stomps, flops himself on the floor and says, “Leave me alone! Leave me alone!” And it breaks our hearts that we can’t seem to ever comfort him, that while we offer love and patience and therapy, change is unbearably slow in coming.
Yet how much more bearable our problems seem now that we are no longer trying so desperately to deny them. I still don’t like to share the hard stories on Facebook, and on Twitter I am relentlessly positive, offering tales of the funny things my son says and does as any proud parent might. But the story I tell myself—that’s the one that matters, and that’s the one that has most changed. I am the father of a special child. Caring for him means being in daily contact with my anxiety, anger, grief and sorrow. That I’m not in denial about this means that it is a choice I make, and one that requires courage. Which is the new story: not failure but courage. To the best of our ability, my wife and I are getting our son the care and services he needs to have the best life possible. Right now we don’t know what that life will look like. Some days we imagine him graduating at the top of his class from MIT, and others we wonder if he’ll end up crazy on the streets or in a jail cell somewhere. I am strangely comforted, however, by the thought that—four year olds being what they are—all parents feel this way from time to time.
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Credit: Original uncropped photo—Michael Wiechmann/Flickr
How blessed your son is that both of his parents have become his advocates. My son was finally diagnosed after 9 months of doctor after doctor after doctor. Everyone said I was a first time mom, with a colicky baby and I wasn’t willing to accept it. His dad (now my ex) thought I was crazy. Turns out my son had cancer, battled it for the next 9 years of his life. I am so grateful we finally found a dr that listened to us. I too struggle knowing how different his life would be had I been able to… Read more »
Thank you, Sarah, for the kind words. And thank you for your sharing some of YOUR story. I can only imagine what you have been through–it’s so humbling to hear. Here’s to focusing on the goodness and counting blessings.
Yup, I’ve been through this too. My son was almost four and took up to 5 hours to go to sleep. A good night was a night he only took 2 hours to go to sleep. He was up in the middle of the night, screaming hysterically and attacking us every single night. For hours. He also had temper tantrums up to 2 hours long during the day. We had two separate doctors tell us nothing was physically wrong, that we just needed counseling to improve our parenting skills. They refused my request for a sleep evaluation. So I went… Read more »
That’s just such a terrifying story, Karen. And yes a thousand times over: sticker charts don’t solve a breathing problem! And kids on the autism spectrum get stomach aches! It’s as though (generally speaking, of course) there is either denial or a label, and they’re two sides of the same coin. I very much like your idea of a “let’s find a solution together.” We have found that the best doctors take that approach. || Thanks so much for reading and sharing, Karen.
I agree! We need doctors who are willing to admit the don’t know everything (who on earth possible can know everything) but are willing to work with us to try and find the answers. So glad you baby is ok.
Being a parent of child with special needs is very challenging, especially when your own family and people around you don`t understand the problem or they simply ignore it. My son`s speech was very delayed everybody was telling me that he had problems with talking because he was bilingual, it was not true. he was just delayed and he could not express himself for very long time that`s why I understand how you feel when the child is trying to tell you something and you don`t know what he/she is saying. my son is now 4 but he talks on… Read more »
Absolutely, Nina! Thank you. You know exactly what I’m talking about and then some. Five days a week of speech therapy on top of everything else–it’s so all-consuming. I appreciate the encouragement and am sending some right back to you. Because you’re right: it’s worth it!
Having stumbled upon this by chance, I want to commend you for writing. I have a 23-year-old daughter with severe cerebral palsy, a seizure disorder, vision loss, and developmental delays. Life is difficult, and most parents of typical children really don’t understand. Keep up the great work — parenting and writing — and know that other parents of special needs kids do understand!
Thanks so much for saying that, Elizabeth. It has been humbling to hear voices and stories like yours, and to remember that we aren’t alone.
Yes, exactly. Our autistic daughter is 3 and still nonverbal , so I know how tough that can be. She also had “colic” but she sleeps better now, after a very hard first year. I also can relate to the extreme ups and downs. One day I’ll think she should catch up to her peers in a few years, the next day I’m wondering if she’ll ever learn to communicate in any form. It’s so difficult and worry some, but at the same time I wouldn’t want her to be different, because she has her own light to give the… Read more »
Thank you, Crysta. I’m so humbled by this response–and grateful for it. For every challenge our son has brought to us, I still wouldn’t change a thing about him. It isn’t in the article but he is magnetic and everyone who meets him falls in love. Thank you for reminding me of that and more. That voice that says “you’re not doing enough”–it is tireless/shameless indeed. But you are so, so right: we can love. Thanks again.
Steve, well done for sharing this mate. I always enjoy your tweets about ‘The little dude’, he seems like a great wee chap and you seem so proud of him. I totally get it about denial as well. My youngest had big problems with his bowel from birth and they caused him alot of pain. Its almost behind him now but I dealt with it in just the same way as you initially did; denial, anger, self recrimination. I got angry when my parents asked about it but even angrier when I shared it with them and felt that they… Read more »
Thanks, Tom. I really appreciate hearing your story. There’s definitely something to be said for putting your head down and working through your problems. Until that is–as with our situations, yours and mine, with our kids’ health–the problems can’t be solved by work alone. For my wife and me it took networking with good doctors and lots of perseverance and luck–on top of putting our heads down and working (which we’re still doing!).
Cheers, Tom!
Wow! I totally get this. My oldest son is 21. He is on the autism spectrum. When he was little, he was not an “easy” baby to parent, but my DH and I just thought it was us or that it was normal. He first saw a doctor for delay in social development at age 4. “He’ll outgrow it. This is just a stage” This would be the first of many doctors who gave similar opinions. It was not until he was 11 and in the 6th grade and failing at everything that the head of neurology at the Childrens… Read more »
D Will: Thanks so much for this response. You do totally get this, and I can just hear the care in your voice. What a soulful journey. All these questions that we live with and that are never going to be resolved or easily fixed–which is maybe partly why other people have a hard time with us. My wife likes to say it’s that others are jealous of our “posh special-needs lifestyle.” Thanks again for sharing your story, and for reading. I appreciate it. Best!
I appreciate your post. I have 4 children, and my middle two boys are both on the autism spectrum. They are high functioning, but are still a handful and require so much more than my neuro-typical kids. But it is so hard to ask for help – especially as it’s not like the situation gets any better just because we know what the diagnosis is. When the boys were diagnosed in 2008 at 3 and 4 years old, we weren’t even given treatment or therapy options…we were just kind of told “Yup, they are on the spectrum” and left to… Read more »
Yes to all of this, Mina. It’s so incredibly hard for people to understand–I have trouble just getting my kid out to the car every morning! Let’s don’t scream at breakfast. Etc. The emotional energy of just being patient through the meltdowns, and then the isolation of it all, and as you say: “What other choice is there?” Thank you so much for commenting here. I really hope to give voice to and celebrate the courage of what it means to live in that question of yours.
I also wanted to share my experience that my DD was 3 months old and had profound breastfeeding issues, lacked mobility with one side of her body and I was told by 5 doctors and 7 nurses that I was over reacting and was just a crazy 1st time parent…It wasn’t until I saw a nurse whose daughter had the same thing that she realized at 8 months what I had noticed since she was 10 days old. She had a weak right side due to a stroke and this resulted in a slight paralysis of her right hand and… Read more »
Thanks, Chantal. It is sad, isn’t it? Since I’ve started writing and talking about some of my experience, I’ve heard so many similar stories of parents who have been put through the ringer and made to suffer in silence. I’m so glad you came into contact with that nurse!
It is so hard, that first time, to stand up to the doctors. I am so glad that you finally found a doc to take the time to listen. Parents almost always know. As you learned, it is OK to fire a doctor. Two essays in my upcoming book talk about this issue exactly. One story, about a father telling the lactation nurse that something was wrong, and the lactation nurse pooh-poohing it. Another story, about an older father in his second marriage and second childrearing experience learning how to (a) listen to Mom more closely and (b) ream a… Read more »
So true, and so well told.
It’s not enough to just say that I respect the courage and self-reflection required to write a piece like this, but it’s a start. Strong writing, too. I’m sure a lot of dads who have kids experiencing the same frustrating suffering without being able to articulate it will find solace in this piece, and a way of feeling something other than and better than guilt or regret. Your kid is fortunate to have you, Steve.
One of the greatest lessons I learned was that I know my child best and doctors see what they see for all of maybe 5 minutes. I fought tooth and nail – switched doctors 5 times – before I found one that took me seriously. My son was diagnosed with ASD, SPD and Childhood Apraxia of Speech. I had doctors blame me for the way he was – as well as telling me he wasn’t behaving normally because he was breastfed. Doctors will always first tell the parents they are crazy, especially when they don’t understand what is going on.… Read more »
That is powerfully said, Kelly. I feel that. We had so many similar experiences with doctors who, as you say, looked at our kid for five minutes and formed an opinion. I’m glad your child had a champion in you. We often wonder what would have become of us if we’d just eaten everything we were being told. A scary path.
Kelly, I had a similar situation with two of my sons, who ended up with an ASD diagnosis as well. Our doctor thought I was worrying for nothing when my sons were 3 and 2, but told us who to see for evaluation to “ease my mind”. Then when the 3 year old was evaluated I was told it was “behavioral problems” – essentially that it was my parenting that created his behaviors. Except he had a typical developing brother who was 18 months older than he who was FINE. Finally we found a pediatric neurologist who diagnosed both boys… Read more »
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