The moment you realize your child is different

water splashing person's face

Photo by Paulo Alessandro Bolaños Valdivia on Unsplash

It’s painful, isn’t it? That moment you realize your child is different. You aren’t ready to admit to anyone—least of all yourself—that something’s not right.

You tell yourself, Everyone develops differently. You tell yourself, He’ll catch up and you even tell yourself, He will be just like everyone else by this time next year.

You feel foolish for worrying.

And for some families, miracles happen. Their child catches up. Those relieved parents have dodged a bullet. But that doesn’t always happen. In our case, it didn’t.


Thanksgiving, 2003

The moment I realized something was wrong happened weeks before Jack’s first birthday. We were visiting my husband Mike’s family in Washington. Mike’s parents’ house filled with his 5 other siblings, their spouses and multiple kids. A happy chaos.

My brother-in-law, Bryce, suggested we do individual family pictures. This was in addition to the large group “everyone squeeze together to fit in the frame” ones we did when we found ourselves all in the same time zone.

Now it was our turn. Mike and I arranged Jack in between us on the couch. My nieces, Ashley and Lexie, 7 and 5 at the time, took it upon themselves to make Baby Jack smile for the camera. They jumped up and down behind their Uncle Bryce, who was snapping photos on our hulking digital camera.

I heard a strange sound as Bryce was figuring out our clunky camera. Laughter. An unfamiliar, hysterical high pitched baby laugher. I looked down at Jack and sure enough, an unexpected 3 toothed smile cracked his face wide open. He shrieked with delight as he convulsed with laughter—in his state of hilarity, he could barely hold his little baby self upright.

My heart swelled with gratitude towards my nieces, as well as awe, and honestly, a little jealousy too. They had accomplished something Mike and I had never done: they had made Jack laugh. In his almost 1 year of life, he had never once responded to anyone’s coaxing to smile or laugh—not even to us, his own parents. I laughed at the girls dancing around and called out, You guys are amazing! He’s never done that before.

You know that feeling when you’ve been walking around for days really congested and then for some reason suddenly your nose clears up and you can breathe without involving your chapped mouth? When everything suddenly slides into place and all is how it should be? That’s how I felt right then as my nieces sprang about the living room like exuberant Chihuahuas.

But then my heart lurched. He’s never done that before. It was in that “normal” moment that I noticed its jarring absence for the rest of the time.

I need to take you guys home with me, I told my giddy nieces, so you can make Jack do this all the time. I was kind of kidding. But also kind of not.

My irrational hope in a nutshell: that all it would take for Jack to engage with us was to make those 2 little girls jump up and down. Higher and faster. For the rest of their lives.

Ashley and Lexie’s faces were now purple, but we had the picture so they could relax. I thanked them for their help as they staggered away, sweaty and gasping.

Uncomfortable questions prickled just below my consciousness. But I didn’t want to see, so I turned my attention to the cake in the next room. My mother-in-law Ellen’s birthday fell on Thanksgiving that year. Everyone needed to come together and sing.

I glanced at the picture preview screen on our digital camera as I walked towards the group. The 3 of us smiling. Nothing was wrong. I forced those pictures to convince me that my son’s development was normal. He would be fine.

While I ate Ellen’s birthday cake, I buried my fears under a thick layer of frosting.

And there my fears remained until Jack’s 1 year check-up a few weeks later, when the doctor told us he was globally delayed. We were thrust into a world of testing and therapies, anxiety and grief.


When I see that picture now, I notice the nervous look in my eyes. I wish I could talk to this former me. I would admit to her that she’ll face some rough times.

But most importantly, I would tell her that she will survive.

When I first found out Jack was different, it pained me to even look at this picture or the other baby pictures taken before we knew anything was wrong.

Through Jack’s difficult toddler years, I wanted to scream at myself. How could you not know? How could you not see something was wrong? But time has taught me that even my initial denial was a blessing. I had time to just love my son before I had to grapple with his challenges.

Chances are, you’ve had this episode too, though wrapped in different packaging. And depending on how long ago it was, you may be still be making sense of everything. And feeling heartbroken. That’s normal. It takes time to build perspective. Remember, this happened to me 15 years ago.

But if right now you don’t have 15 years perspective, but maybe only 15 days, please listen to me as someone who’s been there. Someday you will look back with compassion for that person you once were. And you’ll forgive yourself for not knowing. And especially for not wanting to know. You’ll marvel at your transition to a special needs parent. And you’ll always remember this moment. But it won’t hurt as much. This moment before everything changes.

Collage with child with Smith-Kingsmore syndrome smiling with parents
Thanksgiving, 2003
Mike, Jack and me
Child with Smith-Kingsmore syndrome smiling with parents
Thanksgiving, 2003
Mike, Jack and me
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