I was 19 years old. Immersed in my own ego, rebellion and self-loathing, I hardly noticed the new neighbors moving in next door. I noticed the big white U-Haul but paid no attention to the people moving in. It was a week or so before I had any interaction with them at all. There was a loud, forceful knocking at the front door. Naturally, I was a bit perturbed by the interruption and answered it. There, about waist high, was a young boy. He was obviously suffering from some sort of developmental disability and to be quite honest, I really didn’t know how to react or even how to greet him.
It didn’t matter as he immediately told me his name. It was Ronnie. I said “Hey” but he had moved on to talking about the Azalea bushes next to the front door. It was at this time that Ronnie’s mother Katharine noticed his absence and came rushing over. She scolded him for taking off like that and apologized for the disturbance. She informed me that he was nine and that he had Down Syndrome. She carted him off, holding his hand the entire way as continued to ramble on about things.
I admit, I was taken aback by him. I knew a little about Down Syndrome but not a lot. I was kind of afraid of him and that left me feeling ashamed of myself. My mother and I spoke about Ronnie later that evening. My mother is a OB-GYN RN and had worked with Down Syndrome patients during her college days. I wanted to learn more about the Syndrome. I felt ignorant and wanted to change that.For some reason, he took to me. He would walk over and talk to me every time I would check the mail or take out the trash or any time he and I were out at the same time really.
Weeks later Ronnie’s Grandmother took a tumble and needed to be rushed to the emergency room. This left Katharine in a pinch. My mother was at work and Katharine asked me if I could watch Ronnie for a few hours. Now, I’m ashamed to admit this but I wanted to say no…but I didn’t. Katharine rushed me through his nightly routine and brought me up to speed on his interests and how to keep him entertained. She told me she had already given him his medications before rushing off to tend to her Mother.
So, this was my first real encounter with anyone with a developmental disability. I was terrified. I had no clue what to say or what to do. I asked him if he was hungry? He said “I already ate” and smiled. I asked him if he wanted to watch television. “Nope!” A game? He shook his head yes to this one and I told him to pick a video game we could play. He went over to the shelf by the television and came back with Scrabble.
I admit, I was surprised at his choice and I asked him if he was sure he wanted to play a difficult game. I know, now, that that was an ignorant question and I quickly learned why. He said “I can spell, dummy!” and plopped down on the hardwood floor. I defeated Ronnie the first game we played and I regained my swagger, even if it was only a sixteen point win. He beat me the next two. I kid you not.
This is when I realized that beyond this child’s chromosome abnormality, there was a bright and capable person. His mother came and picked him up around ten. He was still talking a million miles per hour as she thanked me and left.
I began to spend more and more time with Ronnie over the next several months. He loved reading and was stubborn as an Ox. A lot like I am. I did a lot reading on Down Syndrome over those months as well. I learned a lot about the syndrome, it’s impairments and the chromosome that causes it but I learned more by interacting with Ronnie one-on-one than I could from any medical article or book.
That year went by quickly. As quickly as Ronnie came into my life, he left it. His heart began to fail rapidly and just after his tenth birthday, he was admitted to the pediatrics ward at the Mobile Infirmary. He was there almost two weeks before the doctors performed surgery. Three days later, Ronnie died.
Ronnie was a very special child indeed and I was proud to call him my friend. People caring for a child with Down Syndrome need to understand the complexity of them. There’s more beneath the surface than it sometimes appears. Know the Syndrome but most importantly, know the child. Interact with them, get to know them and how they tick. Every Down Syndrome case is different. Ronnie had a one track mind and a short attention span and it made things frustrating at times. Patience and understanding are absolute musts when caring for a person with Down Syndrome.
I’m 34 years old now and the experience not only frightened me and broke my heart…it grew me as a person. Knowing and caring for Ronnie challenged me, frustrated me and warmed me as a person and for that I am truly grateful.
