Independence Looks Different Here, And That’s Okay

This morning, we were late to therapy.

Not because we overslept. Not because the morning fell apart. Not because we forgot something or got thrown off track.

We were late because Camden wanted to walk down the front steps by himself.

The morning had started the way it usually does. Camden woke up unwillingly, begrudgingly drank his bottle, took his meds, got dressed, and got ready for ABA. We have done this same routine nearly every day for almost a year. There is comfort in that predictability. Very little has changed because, for the most part, it works.

Everything was on time. Everything was moving just as it should.

Then we opened the front door.

Camden stopped at the steps and made it clear he wanted to walk down them on his own.

He has been working hard on this for the last few weeks. Just a week or so ago, he made it all the way down by himself for the first time without holding onto anyone or anything. It felt huge. We celebrated loudly enough that I am sure the neighbors could tell you all about it. Since then, he has wanted to try again and again. There have been successes. There have been stumbles. His confidence has grown, dipped, and grown again.

This morning, he wanted another chance.

We could have picked him up. We could have carried him to the car and stayed perfectly on schedule. That would have been faster. Easier. More efficient.

Instead, we let him try.

We let him take the time he needed. We let him make more than one attempt. We let the moment matter more than the clock.

We arrived at therapy ten minutes late, and the rest of the day carried on just fine.

We get choices like this every day, whether we always realize it or not. This morning, I am so glad we chose Camden.

Because progress in our house does not always look the way people expect it to.

For Camden, growing more capable does not follow the picture most people carry in their minds. It is not a neat checklist. It is not a straight line. Right now, it looks like using his AAC device to ask for what he wants or tell us how he feels when gestures and sounds are not enough. It looks like trying the stairs again after a stumble. It looks like building confidence one small, hard-earned success at a time.

Sometimes it also looks like changing course when a skill becomes harder again.

We are currently navigating some potty-training regression after a season of real growth last fall. That has been frustrating for everyone involved. When your child works so hard to gain a skill and then seems to lose ground, it can feel defeating. But instead of pushing harder, we are trying to respond differently. We are adjusting the plan and meeting Camden where he is, because lasting growth for him will come through support, patience, repetition, and flexibility, not pressure.

We let go of typical timelines a long time ago.

Around age two and a half, it became clear that Camden was not going to follow a straight, predictable developmental path. When we received his SYNGAP1-Related Disorders diagnosis, it answered so many questions. In an unexpected way, it also gave us permission to be gentler with ourselves. It helped us stop measuring Camden against timelines that were never built for him in the first place.

Lately, we have had to remind ourselves of that again.

Camden’s milestones do not move in straight lines. A step back does not erase the progress he has made. It does not cancel out the work, the growth, or the victories. It is simply part of the path.

And some of our biggest victories might look small to someone else, but to us, they are everything.

Camden using his AAC device to tell us exactly what he wants has been life-changing. His growing expressive vocabulary has reduced frustration not just for him, but for all of us trying to help him. There are fewer tantrums, more clarity, and more connection. Watching him choose words and make associations we did not even know he was capable of has been one of the most powerful reminders that he has always had so much to say. He just needed the right tools.

AAC has opened an entirely new world for Camden. He can now tell us when he is frustrated instead of turning to aggression or self-harm when he feels unheard. He can express needs, wants, and emotions in ways that were once inaccessible to him. That kind of communication is not just progress. It is dignity.

And on the potty-training front, a day or two without accidents feels like a major victory. Successfully using the bathroom in different places is huge for our family. These moments matter because they reflect growth on Camden’s terms, not anyone else’s.

SYNGAP1-Related Disorders is all-encompassing. It affects every aspect of Camden’s life, awake and asleep, or more honestly, in the lack of sleep. His brain and body have to move through the world differently, and many everyday experiences can be overwhelming or triggering to his overworked brain. Without disease-modifying therapies, his epilepsy and autism are expected to worsen over time.

While Camden has overcome so much in his short four years of life, Craig and I have had to adapt in ways we never imagined too. We rarely all sleep through the night. Aggression can come without warning, and anyone nearby can become a target. One of the hardest things to explain is the pain of not knowing what your child needs or wants because communication has been such a barrier. Camden also does not experience pain or fear the way many other children do, which means constant vigilance for safety, for regulation, and sometimes simply for survival. It is exhausting.

And yet, we have learned that success for Camden cannot be measured by comparison.

It has to be measured by growth at his pace.

It is every new word. Every phrase. Every attempt. Every hard-won skill. Every moment of connection. Every step down the stairs that he insists on taking by himself.

It is recognizing that it does not have to look typical to be meaningful.

By sharing Camden’s story, we hope to advocate for understanding, for support, and for continued research into SYNGAP1-Related Disorders. Families like ours need better therapies, better tools, and a future where more is possible for children like Camden.

It may look different here, and that is okay.

It is still beautiful.
It is still meaningful.
And it is still worth fighting for.