In our world today, and in our busy lives, it is becoming harder and harder to connect with others. Now, I don’t mean the social media kind of connect where you share your innocuous daily routine, such as what you had for breakfast. I’m taking about real connection with another human being on an emotional level. A connection that is made by a common bond; by another person that understands your pain, as well as your joys.
Parents that have a child with Down Syndrome have these bonds. It doesn’t matter who, or when or where. When you see a parent on the street, holding the hand of a child with those oh so familiar characteristics that are the same as your child, you connect. You look at them, they look at you, you share a smile; a smile that doesn’t need verbal validation, because you know, and they know. It’s an unspoken, silent bond of empathy and understanding.
Sometimes months will go by without having it happen. And then, out of nowhere, someone will reach out.
That happened just the other day. Oddly enough, it was Father’s Day. We were having breakfast in a local Twin Cities restaurant. The waitress, an attractive woman probably in her early forties, came to take our order. Like many people, she tried to engage Mishayla, who just clung to Tony, pushing her face against his arm.
“Does she talk?” she asked.
“Yes,” I replied. “When she wants to. She has a pretty severe stubborn streak.”
“So does my son,” she said. “My son is 14. He has Down Syndrome and Autism. They say the autism is why he can’t speak. It is hard for me to know what he wants sometimes.”
Her eyes were starting to fill. I looked at her, and even though I didn’t know this women’s name, I knew her pain. I knew the ache of having a child with an intellectual disability.
She proceeded to tell me he comes home from school sometimes with bruises on his body, and that no one at the school will help her figure out why or where he got them.
“He can’t tell me who is doing this to him,” she said. “And nobody at the school will help either.”
Right away that familiar anger rumbles through me. Thankfully, Mishayla never came home with bruises, but she has been neglected in a classroom before, so I know what that feels like. I know what it's like to have your child mistreated.
“You need to report it,” I told her. “There is no excuse for that kind of thing.”
She said where she was living, there weren’t enough paraprofessionals in their school district, because of budget cuts. What struck me odd was that this particular city in Minnesota is relatively wealthy, and I hear has very high property taxes. “School districts are great for using funding as an excuse for poor care. That’s no excuse.” I replied. “They have an obligation to our kids.”
She had reported it, she said. She had a sadness on her face. “I don’t know what to do with him sometimes. People have suggested I place him.”
Her voice cracked just a bit. Placement. The dirty word that embodies a nightmare for most parents that have a disabled child. It comes with this abiding fear that keeps you up at night, wondering if there will come a time when you will no longer be able to care for your child; your child who will never truly become a fully functioning adult; who will need to depend on someone, in some capacity, for the rest of their life. Will you be able to step up to the plate forever? If not, who will you trust enough to take care of this human being who is the essence of your heart. It would be like putting your life in another person’s hands. Yet it may come to pass for any of us in this situation. I know the worry. I have it as well.
For this woman, it was clearly a possibility. While Mishayla seems to be higher functioning (like most Down Syndrome children, she is in the mild to moderate range of intellectual disability) from the symptoms of this boy, his Down Syndrome made him lower functioning than most. Then to add Autism Spectrum Disorder makes it even harder.
She went to wait on others. I so wanted to help this woman. Like she was a family member, or a close friend. I wanted to impart something important, some sort of comfort or wisdom, some magic words.
But I couldn’t really. There just aren’t any. I could just say I know your pain. I know it intimately.
She brought our breakfast, and later returned to see if we needed anything further. She tried again to talk to Mishayla, who just hid her head.
“My son does that too,” she said. “And he grunts a lot. Loud.”
We laughed. She was surprised Mishayla didn’t wear glasses, since so many children with Down Syndrome have vision issues. “My son’s glasses are the size of Coke bottle bottoms,” We laugh some more. I told her while Mishayla doesn’t appear to need glasses, she has other issues. She has a heart condition, and a pacemaker. She has scoliosis, which has to be monitored.
We were getting ready to leave. We wished each other well. As I walked out of the restaurant,I had wished I had gotten her name.
But in the end, it doesn’t matter. We shared a connection, a bond, a very finite moment of understand, that goes beyond anything most people will ever experience. We commiserate in a world where there is prejudice against our children, and often, criticism of us because we chose to bring them into the world. No one can know the challenges, and the joys, like we do. We parents with these children can be from different races, religions, educational backgrounds, etc. Yet we are bound by these children who are our blessings, our joys, and as much as we love them, at times, our greatest burdens.
It’s enough that someone out there understands. It's enough to know that no matter what, you’re not alone.
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