Michael wrote this –
After Finnian was born, and we found out he was diagnosed with Down syndrome—not quite knowing what that meant—I felt as if I had come full circle in some way, as if life had prepared me for having a child with some disability, special needs, challenges or whatever they’re called these days—that’s just society working out the best sounding, most respectful, least offensive “label,” which is really just a way of identifying someone in relation to those in our world who feel it is necessary to do so—in the end, Finnian is who he is.
A little background is in order here: In my earlier adulthood, I spent ten years working with people of varying disabilities, but mostly those who were deaf, and deaf-blind. For six years I lived with my girlfriend at the time, and she was deaf and losing her sight. She had three older siblings who were also deaf and losing their sight. I had a career as a sign language interpreter and advocate for disability rights, and I taught daily living skills in several residential-type settings. My career as an advocate led me, in part, to go to law school. It seemed like a natural transition. I saw firsthand how our society treated people with varying disabilities. Even my girlfriend’s family treated her and her brothers and sister like second-class citizens, and sometimes I had to stand up for her against the rest of her family. It usually didn’t go over very well. Because her family could not communicate with her on a deeper level (many families with deaf children do not become too proficient in sign language), they couldn’t see her for the person she was, that she had feelings as real and meaningful as theirs; that she had a sense of humor; that she had wishes and dreams; and that she could love and feel pain. They may have known this on an abstract level, but they didn’t know her. From what I saw with other deaf children or adults in hearing families, this was by no means the exception. Not having a child who was deaf, I can’t really say I would’ve done better. This part of my life impacted me greatly.
So, when Finnian was born and we eventually learned he has Down syndrome, I felt prepared for whatever may come, that I had come full circle. I remember suddenly feeling that my life up until then had made sense, and everything was now connected. Although I think I would have taken the whole thing in stride anyway, there was a certain peace in that.
And so that was my reference point for the beginning of our journey with Finnian: I was totally cool with it. Seriously, I was. And still am.
Obviously, raising a kid with Down syndrome is not the same as having a girlfriend who is deaf and slowly losing her sight; nor is it the same as advocating for those with disabilities, or teaching daily living skills, so I won’t pretend that until I had a kid with Down syndrome, I understood how it felt to have such a kid, or what it’s like to have a child with serious medical issues. I probably took it for granted that I did.
So far, having Finnian has required us to communicate with him differently. I don’t mean that in a bad way. While he is starting to mimic and vocalize and ask for what he wants more, we still often have to abandon, for better or worse, all of these words we conveniently have to represent abstract concepts and try instead to communicate on a conceptual level. It’s hard to explain, but in some ways it’s more real, and that’s not a bad thing. Yes, we will have to fight for him; we’ve already faced some challenges with the school district, but it hasn’t been any worse than trying not to get screwed at a car dealership. It’s challenging. And some people will just treat him like a second-class citizen, and yeah, it’ll hurt.
I don’t know what lays in store for Finnian. I don’t yet know what his “abilities” are or will eventually be; I don’t know if he’ll be able to live independently or if he’ll be our travel companion; I don’t know what the depth of his understanding of all things intellectual will be—he might not get calculus or biochemistry, but then again neither do I; he may not be the president of his student body, but then again, neither was I; he might not go to his high school prom, but then again, neither did I; and he may never be an astronaut, but then again, neither will I.
But I do know that Finnian digs music. Like many of us, it just gets his foot tapping and he starts to dance. I know that I can’t play the guitar without him grabbing a bongo, or getting on the piano, or having him come over and try to get the guitar from me. He is as entranced by the television as are our other kids. He plays with toys, crayons and books. He gets upset when he doesn’t get his way. Sometimes he gets into the dog’s crate with her, and sometimes he comes out of the girls’ room with one of their pairs of jeans on his head. He’s the only one who likes the dog, and the only one the dog likes.
Most of all, my boy has a heart and has the capacity to give and receive love—not something everyone can do. And I’m not just saying that. It is so obvious that he loves playing with his brothers and sisters, and he loves his parents. What could be more important than that?