What Happens When Routine Changes?

Most people do not like change. Some adapt to it as they get older. Others never really do. For many individuals with developmental disabilities, even a small change in routine or expectation can feel overwhelming.

We prepare Noah for just about everything. We tell him we are going to the beach. After 15 years, he knows the routine. He puts on sunscreen without a fight. He knows he needs to stay within our eyesight on the shore. No problem.

But ask him to drink water to stay hydrated? That is apparently where we crossed the line.

We also have a rule that he needs to eat and drink before heading back to the water to stand and watch the waves. It is a simple safety rule. On our first beach day this week, that one request led to a complete meltdown.

Picture this. Seventeen family members, adults and children, are spread across the beach. Everyone is talking, laughing, or playing. Noah is sitting with us happily eating his peanut butter and jelly sandwich. Everything is calm.

Shane casually says, "Buddy, you need to drink some water before you head back to the shore."

Noah looks at him, kicks sand all over Shane and me, firmly says, "No," and then spits.

Shane and I looked at each other as if to say, What just happened?

Shane calmly reminded him again to drink his water.

That was not the answer Noah wanted.

Within seconds, the situation escalated. Sand was flying everywhere. Noah became so upset that Shane had to safely hold him in the sand to keep him from hurting himself or anyone else. It probably looked more like a wrestling match than parenting.

For nearly ten minutes, Shane calmly repeated the same message.

"Noah, as soon as you are calm, I will let you go. You need to be calm."

Eventually, Noah settled down. He drank his water. Life moved on.

Later, Shane said, "I saw those women over to our left giving me the stink eye."

I laughed and said, "First, our entire family was sitting there calmly watching because they know this is part of our life. If something was truly wrong, do you not think one of them would have stepped in? Second, those women have absolutely no idea what we go through every day. They may have been curious, surprised, concerned, or all three."

That conversation reminded me of something important.

This is a public service announcement for anyone who sees a parent, grandparent, sibling, or caregiver struggling with a child or adult who has developmental disabilities.

Please do not assume you know the whole story.

A few years ago, someone believed they knew the "right" way to handle Noah. That person stepped in without understanding the situation, created even more stress, and made an already difficult moment much worse.

If you are genuinely concerned, talk to the family. Ask questions. Offer help. Offer to listen.

Most parents and caregivers are doing the very best they can with the information, experience, and resources they have.

Some of my best parenting ideas have come from talking with other parents, asking questions, reading, researching, and learning from people who have walked a similar path.

A little understanding goes a long way.

Sometimes what looks like a child refusing to drink a sip of water is really a child struggling with change, routine, communication, and regulation all at once.

And sometimes, the kindest thing you can offer is not advice.

It is grace.

If this story made you laugh, gave you a new perspective, or reminded you that you are not alone, please share it with someone who may need to hear it. Follow Noah's journey on Facebook where we share the everyday victories, challenges, and plenty of unexpected adventures. You can also join the journey on our website to receive updates whenever a new blog or video is posted. Thank you for being part of our story and for helping us spread a little more understanding, one post at a time.