I've mentioned elsewhere that my older brother Daniel was born with Cornelia de Lange Syndrome. Growing up with a disabled sibling was all I ever knew, so it was my normal.
But a few weeks ago, I was talking with a friend whose second child has been diagnosed with Joubert Syndrome. She is understandably worried about her future as a mother of a special needs child, and the effect this diagnosis will have on family dynamics with her other child. She asked me how it felt to grow up in the shadow of a CdLS brother.
What's amazing to me is that I don't know that I had ever really thought of how it felt. Like I said, it was all I knew. But looking back, I realize that it did not adversely affect me, at least not on the whole (just don't ask me to tell you about the time Daniel sat behind me in Primary and made me cry by poking pushpins into my back). I think I had a positive experience as a CdLS sibling for two reasons:
1. My personality. Where it gets tricky is when I try to discern whether my personality was innately particularly well adapted to dealing with a high-needs older brother, or if my personality developed the way it did to cope with said situation. It's anyone's guess, really. In any case, I didn't seem to mind being hauled around with my mom and brother to doctor appointments and special schools. In fact, I believe I learned to read in the library at one of those special needs schools.
2. My mom. I don't know how she did it, but she managed to not let Daniel's problems cast a shadow over the rest of our family. Our world did not revolve around his disability, even though I knew that it cost her a lot of time and effort to fight for every victory she achieved on his behalf, like getting him through high school in the public school system. I think it would have been easier for her to say the rest of us kids couldn't do this or that because of Daniel and his situation, but I can't recall a time that she ever took that out.
I do think that Daniel and I had a more turbulent brother/sister relationship than normal. For most of my childhood, Daniel seemed to hate and resent me, and it was sometimes hard to flourish in that atmosphere. It was the weirdest thing, though - in 1995, when our family dog ran into the street and got hit by a car, and Daniel saw me crying about it, he was nice to me for an entire year. To this day, I have no explanation for that fluke year of peace in our relationship, but whatever. After that, we went back to our uneasy semi-truce. It is a fact that even when I drove to high school, Daniel refused to ride in my car and took the bus instead.
Anyway, all of this is to say that Daniel goes to a retreat house for disabled adults every once in a while. It's called Martha's Place, and they just put out a new video describing their services. My mom and Daniel are featured in it a few times. It's worth a watch for that reason, and also because these are good people providing an awesome service to families of special needs children who are now grown. Take a look.
But a few weeks ago, I was talking with a friend whose second child has been diagnosed with Joubert Syndrome. She is understandably worried about her future as a mother of a special needs child, and the effect this diagnosis will have on family dynamics with her other child. She asked me how it felt to grow up in the shadow of a CdLS brother.
What's amazing to me is that I don't know that I had ever really thought of how it felt. Like I said, it was all I knew. But looking back, I realize that it did not adversely affect me, at least not on the whole (just don't ask me to tell you about the time Daniel sat behind me in Primary and made me cry by poking pushpins into my back). I think I had a positive experience as a CdLS sibling for two reasons:
1. My personality. Where it gets tricky is when I try to discern whether my personality was innately particularly well adapted to dealing with a high-needs older brother, or if my personality developed the way it did to cope with said situation. It's anyone's guess, really. In any case, I didn't seem to mind being hauled around with my mom and brother to doctor appointments and special schools. In fact, I believe I learned to read in the library at one of those special needs schools.
2. My mom. I don't know how she did it, but she managed to not let Daniel's problems cast a shadow over the rest of our family. Our world did not revolve around his disability, even though I knew that it cost her a lot of time and effort to fight for every victory she achieved on his behalf, like getting him through high school in the public school system. I think it would have been easier for her to say the rest of us kids couldn't do this or that because of Daniel and his situation, but I can't recall a time that she ever took that out.
I do think that Daniel and I had a more turbulent brother/sister relationship than normal. For most of my childhood, Daniel seemed to hate and resent me, and it was sometimes hard to flourish in that atmosphere. It was the weirdest thing, though - in 1995, when our family dog ran into the street and got hit by a car, and Daniel saw me crying about it, he was nice to me for an entire year. To this day, I have no explanation for that fluke year of peace in our relationship, but whatever. After that, we went back to our uneasy semi-truce. It is a fact that even when I drove to high school, Daniel refused to ride in my car and took the bus instead.
Anyway, all of this is to say that Daniel goes to a retreat house for disabled adults every once in a while. It's called Martha's Place, and they just put out a new video describing their services. My mom and Daniel are featured in it a few times. It's worth a watch for that reason, and also because these are good people providing an awesome service to families of special needs children who are now grown. Take a look.