PSN Team
Comparison may be the thief of joy. But burying the inevitable grief that comes with raising a child with a disability sets the stage for an emotional eruption of volcanic proportions.
When Joy and Grief Arrive Together
The rarely spoken truth is this: Parenting a child with a disability often casts a melancholy haze over what should be joyous events. Sometimes, it is way more than that—like being caught off guard with a massive punch in the gut.
I had no idea my son Arlo had Down syndrome before he was born in 2010. The words “We suspect Trisomy 21” came out of the doctor’s mouth and plowed me over like a freight train.
I was devastated and lost. Most parents who go through something like this are. Why shouldn’t we be? Nothing prepares you for this journey.
In fact, it is quite the opposite. Disability is presented as a problem or an afterthought in baby books. It is usually just a quick mention because being disabled is still viewed by most people as something to fix or overcome.
Because of that attitude, many of our children are brought into this world with whispers. Introductions to friends and family are met with apologies.
Not only are new parents dealing with the unbearable pain of a diagnosis they know little to nothing about, but the joy of welcoming their new bundle of joy is often replaced with mourning instead of celebration.
For children diagnosed later in life, caregivers can face a similar internal struggle. But their experience is often interwoven with denial, guilt, gaslighting, and more.
I remember so clearly sitting next to Arlo when he was under his oxygen box in the NICU. I was unable to hold him, so I rubbed his tiny hand while feeling the most excruciating heartache of my life up until that point.
Yet, I knew it would be OK. I just needed to process it.
Sure enough, hourly tears were reduced to a few crying sessions a day. Those became a few times a week, and so on.
Grief Does Not Happen Just Once
The grief we encounter on this unique parenting journey is not, unfortunately, one and done. It can strike when we least expect it.
As I have learned through my years of advocacy and parent support, each of us processes it differently.
One mother shared with me that sadness sneaks up on her at almost every milestone: graduation, prom, weddings, and the birth of her first grandchild.
The ongoing reminders of how different life is for children with disabilities never stop.
Whose Milestone Is It?
Another parent confided that she had a very hard time accepting that her daughter did not want to go to prom at all.
This parent planned her own prom. Her relationship with her husband started at her prom. Prom holds a special place in her heart—but not in her daughter’s.
“As a parent, we have prescribed things in our head that we think kids should reach—certain benchmarks or certain things,” she told me. “This is her life, and it doesn’t make her a failure because she isn’t doing these things.”
A mother of three children with ADHD who is a self-proclaimed overachiever said she constantly reminds herself that her children are their own people.
“Not everyone is a self-starter like I was. That does not make me a bad parent. Our kids are not replicas of us. Even if we understand neurodiversity, it’s impossible to know what’s going on in someone else’s mind. We need to honor each individual’s journey.”
Preparing for a Different Path
Arlo turned 16 this summer—one of those huge milestone birthdays.
I was fully prepared to feel some kind of way and hide to process it privately. Sweet sixteen hits differently when your teen will never drive and has no interest in hanging out with friends.
But his big day came and went without a single iota of sadness.
The ongoing realization and acknowledgment of what is ahead can soften the blow when big life events arrive. Arlo has cousins close in age. Observing their experiences, as well as those of their parents, offered moments of pre-grief—which is much less fun than pre-gaming, but far more productive.
Just like with walking, school, sports, and travel, most things will either come later or not at all.
I allowed myself to grieve these moments while watching my nieces and nephews with both pride and envy.
When my brothers’ children started driving, I recognized that the relief of having the oldest child reach a level of independence—being able to run errands or drive themselves to practice—is just not my family’s reality.
While it hurt at the time, I was surprisingly grateful when Arlo’s birthday came around.
Arlo has so little interest in driving that he still makes me drive the go-kart on our annual outing. That, in turn, means that the fear my catastrophizing mind created about him trying to drive my car without me knowing is not an issue—knock on wood.
It also means that I do not face the worries of whether he will be safe or make it home—until my middle child starts driving in a couple of years, that is.
A Different Pace Can Still Be Okay
Occupational therapist Christine Cridland told me, “When I am working in early intervention, I often observe and help reflect with families about milestones, especially after an evaluation or annual checkup. How information is presented and how information is processed are important.”
Cridland, who is also a mother of two, added, “I wonder if there is a study on family attitudes and mindsets as they love and watch their children grow. I say this because I have heard parents and caregivers say, for example, ‘We are at a different pace, and it’s OK,’ or ‘We are choosing not to compare milestones.’ I need to listen more deeply to how families are coping.”
Periodic grief is a natural and normal part of this experience, and it likely always will be.
But the sooner our society as a whole accepts and embraces that disability is also a natural and normal part of the human condition, the sooner we can at least soften the blow.
Cridland went on to share that she has family friends who have an adult son with disabilities who attended a specially designed university program.
“I’ll never forget their pivotal moment when he was just 3,” she said. “The doctor said, ‘Here is your son’s diagnosis, and you will love him the same—and just as much. That will not change.’”
Those simple words from the doctor eased the family’s grief over their preconceived expectations and opened the way for them to move forward.
Letting Our Children Lead
Expectations can steal as much joy as comparisons.
Parents, caregivers, and people in general must learn to put their personal wishes, hopes, and dreams aside and listen to their children.
It is their life to live. Our job is to help them reach their full potential—not our projections.
About the Author
Erin Croyle is a journalist who has worked for National Geographic and Al Jazeera English. She was working in Malaysia when her first child, Arlo, was born in 2010. His diagnosis of Down syndrome transformed her career – shifting her focus to disability rights and advocacy.
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