You and Me, Kid: A Memoir — Paperback

Description

Eugene Havens explores the blessings, joys, and benefits of parenting a child with special needs. For Eugene, parenting his son Percy is an honor. Not because it’s easy. Not because it makes him look like a super-parent. Not for any outward reason. Only for this. Parenting his son is what he was made to do.

From the back cover

Love. Loyalty. Togetherness.

Destiny is found in a person.

“My son was born with Down syndrome. I had no idea what to expect. The doctors told us there was a hole in Percy’s heart. He couldn’t gain weight. Overwhelmed and unqualified, I became his 24/7 caregiver. The first two years were a struggle. With love and care, Percy began to thrive. And yet, the challenges kept coming. We would go through health scares, developmental delays, and education issues. Why are we so happy? Because we have our son, Percy. We get to keep him. We get to watch him grow.” —Eugene Havens

About the author

Eugene Havens worked as a media writer in New York, Los Angeles, and San Francisco for over twenty years. He holds a master’s degree in fiction writing and is the author of Marble on a Table: A Novel. He lives in southern Oregon with his wife and four children.

A 24/7 father-caregiver tells his story

An excerpt from the memoir

The bottom dropped out of my life in a pre-school hallway. I had arrived mid-morning to pick up my son and daughter. Down the hall, I saw Kate. Her hands were clasped. Her eyes were wet. I knew right away that something had happened with Percy. He wasn’t hurt. I would’ve gotten a text message. He had misbehaved. Kate moved through the crowd of parents picking up their kids. She looked at me gravely. “We need to talk.”

I followed Kate into an empty classroom. Through tears, Kate told me she couldn’t continue to chaperone Percy at pre-school. Helping Percy wasn’t working out, she said. She wasn’t the right person, wasn’t qualified. I tried to reassure her. No one was an expert at this. What I said seemed to make Kate feel worse.

“What happened?” I asked, finally.

Percy was prone to wander from classroom activities. Kate and I had talked about it on and off. When Percy got happy feet, Kate would follow Percy out of the classroom and let him explore the hall. The school administrator and I were hopeful Percy would get the hang of structured learning after a while. Kate was there to help Percy with the transition. She wasn’t a teacher but a family friend with children at the school. She had done an extraordinary thing by volunteering to be Percy’s aide, to shadow him so the preschool teacher wouldn’t be distracted.

“Today, he laid on the ground and cried,” Kate said. “He wouldn’t listen to me.” I tried to follow. It sounded like Percy did this outside at recess. I could imagine Percy lying flat on his back throwing a fit while other kids played nearby. A sharp mom of well-behaved kids, Kate had likely felt helpless and embarrassed.

Kate and I struggled with this situation because the private Christian school wasn’t set up for special-needs students. It was my idea for Percy to attend. His two siblings went there and Percy had grown and matured. He came alive in a big group of kids. Being educated in a neuro-normal environment could accelerate Percy’s development. It was a big opportunity for his future.

The school had accepted students with special needs before. After a long negotiation, they were open to letting Percy come.

It would be a hard beginning. A gentle, undersized boy of almost five, Percy was resistant to structure. When Kate heard we were searching for an in-class aide for Percy, she had offered to do it for free. Kate was a gracious Christian. She wanted to fill a volunteer opportunity at the school. None of us knew exactly how things would go because Percy had Down syndrome.

Aside from his wandering, I hadn’t realized the burden Kate was under by agreeing to be Percy’s aide. She was clearly distraught. We talked back and forth, saying the same things.

“It’s OK, really,” I said. “Do you maybe want to go home and let’s talk later?”

Kate could barely look at me. I understood. She felt crushed. She was letting down Percy and me. I didn’t think she was. I didn’t know what to think.

She said she could continue the arrangement for another couple of months until I found a replacement. A replacement. The school administrators and I had spent most of our time talking about an aide. I couldn’t do it. The pre-school teacher didn’t want a parent to fill the chaperone role. It would overshadow the learning environment. I understood the reasons. A replacement.

I watched Kate wipe away a tear. “Well, thank you for trying,” I said. Kate was still upset. Nothing I said had helped. It seemed best to give her space. I thanked her again and left the room.

A teacher had been corralling Percy and his younger sister Tabitha in the hall. I thanked the teacher and gathered up Percy. Everyone in the hallway, from the pre-school staff to parents picking up their kids, had heard Kate’s and my conversation. Percy didn’t fit in. It didn’t work out.

With Percy in one arm, I took Tabitha’s hand. We walked down the hall and outside.

There wasn’t a replacement. Kate knew. The administrators did as well. It was no one’s fault. We lived in a small town where, aside from a widely-panned public school option, there were no educational services for kids with special needs. I had created a situation for Percy, whole-cloth. It had lasted a month.

Where did it leave us? The kids Percy wouldn’t be able to play with I didn’t want to think about. The learning environment my other two children were able to be a part of Percy would be denied. It wasn’t fair, and yet it was no one’s fault. Percy would be homeschooled. I would do it. It would be OK.

Then I thought of myself. The free time/life-time/adult time I had envisioned was gone. Passing the baton hadn’t worked. When Percy was born with Down syndrome, I dropped my regular life to keep Percy healthy. Now I needed a break. Over those first few years, I had been Percy’s 24/7 caregiver. In and out of hospitals, sleepless nights watching a digital readout for his breathing level, tubes and machines, around the clock medicine; I threw everything I had into Percy getting to this point. He was active, healthy, and ready to learn. I would need to do that, too.

I buckled Tabitha and Percy into their car seats. Percy gave his father a wide grin. His three-year-old sister in the middle seat could speak in entire paragraphs. At nearly five years old, Percy couldn’t say more than a few words. His fast, easy smile said it all. What problem at school? Let’s get going. What’s for lunch?

All was well. If we were together all day, his happy little face told me, how wasn’t it the best option? Percy may never be able to articulate it. His and my lives were inextricably linked. I would need to say goodbye to adult plans and autonomy and be a full-time father-caregiver until, well, it was no longer needed, which was likely never. Was it the life I had envisioned for myself? Was it what I wanted?

Percy accepted a familiar kiss on his forehead. His father smiled. “You and me, kid.”

© 2022 Eugene Havens

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