If You've Ever Wondered What It's Like To Have a Child With Special Needs →[More:]I know I tend to go on a bit, but my daughter Alice is absolutely hilarious and it's really interesting to see how things unfold around her.
She tends to be gregarious and at a large function will
work a room. She will go from table to table introducing herself to people or introducing me and saying a few words before moving on. She leaves most people feeling just a little bit better about themselves when she moves on. If it weren't completely out of the question, I'd say that politics holds a future for her.
Yesterday, Alice and I went to Home Despot to purchase a finish nailer, so I could finally put the last of the baseboard in the house. While we were there, she said 'hi' to a lot of people and to several added "My name is Alice." (which is new as a complete sentence). She got the attention of an older man and he walked up to her and said 'hi'. She shook his hand with a tiny, "nice mee you" (nice to meet you). He turned to me and asked, "Down syndrome?" I said yes. "How old?" Alice, how old are you? "Four." "Jeffrey's 46." "How's he doing?" "Fairly well - he's living in a house." (house: this is a code word for a shared living space for people with disabilities run by the state). "How's his heart?" (this is a standard question I ask most other parents of children with Ds - there's nearly a 40% chance that they're child had an issue - mine does - it strikes common ground, and is a very indirect way of saying, I'm educated and I know a lot of the issues) "Good - that's why he's lived so long."
We talked for a few minutes about how we both received the diagnoses. I asked him how he copes (I'm still working on that - more on this later). He told me that it's still hard, which is not what I wanted to hear, but from his story it sounds like his son had a harder time than most.
My daughter had the benefit of Early Intervention. This is a state-run program that provides therapies for infants/toddlers with special needs up until the age of three. It is care that is provided in the home and is as much about educating the parents as it is about helping the child. Jeffrey did not benefit from EI.
Down syndrome is a specific diagnosis for of an extra gene on the 21st chromosome. With it comes a number of issues that happen in greater or lesser measure, depending on the child. Mental retardation is always an issue, but to what degree is the question. In addition, you're likely to see low muscle tone, heart defects, leukemia, obesity, vision problems, and so on.
Alice seems to be on the high end of cognition, but was hit hard on the muscle tone side of things. It took her four years to learn to walk, partly due to the muscle tone and mostly due to a stroke at birth.
My friend James from college told me that he believes that the fundamental gene for human kindness is on the 21st chromosome, which is why people with Down syndrome are, well, nicer than most.
Myself, I'm very proud of my daughter and she's done very well. Some of the things she does make my heart soar. The thing is, when I'm around other kids her age, I see the growing gap between them and it hurts deeply. I don't cope well with this, although the pain lessens over time. Of course Alice is a natural healer too.
The man had to go, but he wished us well and planted a big kiss on Alice's cheek.
Here's the thing to tie the subject in through all of this - this behavior from people is astoundingly common. It seems to happen most often when I'm out alone with her. People seem to come out of the woodwork to talk to us. Maybe it's her - maybe it's us and how we behave - maybe it's me. I don't know. People just show up. There was the guy who walked past me in a mall food court who said, "God bless you and all the hard work you do." and walked on. There was the father of an adult son with Down syndrome who said, "hear my words now and believe them later, this will be the greatest experience of your life." It's freaky.
I'm not used to it yet.