Questions Often Asked About My Condition

Where do I start, hmm...

Some people comment, “You can’t have ACC—you look like you’re doing so well.”

My answer is: DCCs are often invisible disabilities. You usually can’t look at someone and immediately know how their brain works or what challenges they deal with every day.

It affects me personally, even when it isn’t obvious to other people. Sometimes I may seem completely fine, but I could still be struggling to understand what someone means, keep up with a conversation, or figure out the “hidden” message behind their words.

One thing I find especially difficult is understanding people’s intentions—what many people call “reading between the lines.” Sarcasm, hints, body language, and indirect comments don’t always make sense to me right away. I often need people to say exactly what they mean instead of expecting me to figure it out.

That doesn’t mean I’m not intelligent, capable, or doing well. It just means my brain processes certain things differently. Invisible doesn’t mean imaginary, and looking okay doesn’t mean everything is easy.

Another question I hear from parents is, “Will my child ever be able to do this, that, or the other?” The honest answer is: maybe—but it can be different for everyone.

DCCs are on a spectrum. Some people grow up needing very little support, while others need help with everyday tasks, communication, learning, or staying safe. And some people seem to manage really well on the outside but still need extra support behind the scenes.

Progress also doesn’t always happen on the same schedule as everyone else’s. A person might learn something later, need more practice, or find their own way of doing it. That doesn’t mean they can’t learn. It just means their path may look different.

I think it’s important not to put too much pressure on parents—or on the person with the

disability—to predict the future. Instead of asking, “Will they ever be able to do this?” it may help to ask, “What support would help them get there?”

Support can make a huge difference. Clear instructions, patience, routines, extra time, and people who listen can help someone feel more confident and independent.

And even when someone needs lifelong care, that does not make their life less meaningful. Every person deserves respect, encouragement, and the chance to be understood as a whole person—not just by what they can or cannot do.

What I can tell parenets of DCC newborns What I can tell parents of children with DCC is that early intervention can make a big difference. The sooner your child gets support, the sooner you can learn what works best for them.

Be proactive, but also be flexible. Try different activities, routines, therapies, and ways of communicating. For example if your child is preverbal or non verbal, teach them sign language... Sometimes the thing you expect to help won’t work—and that’s okay. You may need to try something completely different.

Most importantly, be spontaneous and enjoy your child. Celebrate the little victories, even the ones other people might not notice. Every new skill, new word, new connection, or brave attempt matters.

Your child may develop differently, but differently does not mean less. With patience, support, encouragement, and plenty of love, they can keep growing and finding their own way. and children is that early intervention is key to helping your child thrive. Be proactive and spontaneous with your child.