Reflections on Getting Lost

I was half way through our book of the week on Monday morning when Nathaniel started to cry. He lifted his glasses and wiped tears away repeatedly. I asked, “What’s wrong?” but I had a hunch. Little Pip, the main character in the story book, had just chased a feather caught on a gust of wind. Two pages later he caught it. Then he looked around and realized he couldn’t see home or his parents. Running after the feather had caused him to get lost. In the story, Pip’s tears froze on his face. Nathaniel’s tears were real.

I consoled him. I also pressed on with reading the book. I knew it would end well. Pip’s parents would find him again. Nathaniel continued to cry through Pip asking for help from a whale, kelp gull, and dogsled team. I hadn’t expected this when I selected the book to do our guided reading exercises with this week. When no one could tell Little Pip how to get back to his home, he comforted himself by singing the song Mama and Pappa penguin sang each day.

“Our home is where the land is free
from hill or mountain, twig or tree,
in our pebbly nest by the stormy sea,
where Mama and Papa and Pip makes three.”

Nathaniel cried harder. “Come on buddy, it’s just a story” I almost said, “Mama and Papa penguin are coming.” Instead I just kept reading. Following the sound of Little Pip’s song, Mamma and Pappa penguin were soon by his side.

But Nathaniel continued to cry after the family was reunited. My reassurances focused on the book and happy resolution. He cried. He signed “mommy” and “daddy.” He repeatedly made the loudest breathing noise he could make while continuing to sign our names. What is so upsetting?

“Why are your crying, Nathaniel?” I asked.
“About the story?” I held up my right hand.
“About you getting separated from your Mommy and Daddy?” I took a wild stab and held up my left hand.
“Or something else?” I shook my head no.

Offering Nathaniel three choices in this manner is one way we can quickly begin to understand what he is trying to communicate. It works well in moments of strong emotion when finding the right words on his communication device might be a challenge.

He picked the hand that represented getting lost from Rich and me. He pointed to himself and strained his breathing again.

Oh my. He understands that if he were lost, he could not sing like Little Pip to help us find him.

I tried to imagine the fear gripping his heart.. I drew him close in a full embrace. “Oh sweet boy,” I said. “It is ok to cry. It would be very scary for you if you were lost and couldn’t sing or yell or call for us.” We sat for a long while in this reality of his disability. Eventually my physical presence must have overcome his what-if thoughts. He stopped crying. We prayed. We lingered in the assurance that all was ok; we were together.

For now.

But Nathaniel is spot on right. If he is separated from us, the impact of his disability magnifies. In store or at church with his communication device present, he likely has the skills and tools to ask someone for help. But his communication device isn’t loud enough to be heard from one side of our yard to the other. I can’t hear it if he is downstairs in our playroom, and I am upstairs in the kitchen. He knows and lives with this fact. He knows when I habitually call like any mom does to check on him while preparing dinner, it is really just a signal that one of us must move physically toward the other to get the answer. There will be no “I’m fine. Playing with Legos” return yell from the basement.

I participate in multiple private groups on social media for parents of children with special needs. Years ago a mother shared a long story of losing their nonverbal Autistic son in the woods on a family hike. He was there one second and gone the next. She offered a vivid description of the unfolding events for the three hours her son was missing. The decision to call emergency services. How search parties formed. The presence of a lake and her fear that he had wandered that direction. Her narrative was compelling. Many commented expressing relief that her son was found, and gratitude that she shared the story so vulnerably so we would all think through the implications for our own nonverbal children.

We talked about the situation as a family. An older son and his friend designed and fabricated a 3D printed whistle that fit over Nathaniel’s trach tube. It worked well. Nathaniel played with the whistle for weeks. It was like a toy. He was very young at the time. He didn’t understand the reason the whistle might be needed. Our own interest in it waned over time. It was put somewhere for someday.

When Nathaniel was ready to leave our quiet snuggle, we searched for the whistle. It was tucked away in a drawer with diaper ointment and old prescriptions we no longer used. He put it on and blew a loud shrill blast. And then another. And then he hugged me.

We put the whistle in his pocket. Occasionally over the next few hours I would say, “Where are you, my Little Pip? Did you chase a feather and get lost?” Nathaniel would smile, pull the whistle from his pocket and blow it. We played the game again today. And I have spent endless time this week looking again and again for the whistle. If he thinks about it, he is desperate to have it with him. He is seven and sets it down in the most unnoticed places.

We will find a storage solution that works to include the whistle a part of Nathaniel’s alternative communication tools. Tools that must be kept with him at all times. We will play our invented “Where are you, My Little Pip? game” again and again. He is ready now. He understands the whistle is more than a toy and the game more than fun. It all feels weighty. I can not play at this without the sobering thought that we could experience a similar horrendous afternoon that my acquaintance wrote about on social media. The only way I see to support Nathaniel through a fear of being lost is to practice the skills he will need if it should happen. This is far more complicated than teaching my other children what to do if they became separated from us. Life dependent on alternative communication is more complicated. It requires purpose and intentionality, practice and imagination, perseverance and intrepidness. It is more than evaluations and having a high tech system and core words. And yet is as simple as parents and the innocent considering the consequences of chasing a feather swept up by the breeze.