Some days ago, I was at a playground with my two eldest boys. A little girl the age of my eldest (4 1/2) came over and chatted up my kids. My middle son, who was in his wheelchair, smiled and reached out to hold her hand. She happily held it, and started asking me questions. Why is he in a wheelchair? Why can’t he talk? I started to answer her, when her father came over and started to drag her away. Worried that he might just be uncomfortable, or think I didn’t like the questions, I said cheerfully, “It’s no problem at all! He likes meeting new people, and we were just getting to know each other.” My kid is more severely disabled than most people are used to seeing, but he’s very smiley and often wins over even uncomfortable people. Not this time. He looked at my middle son again, muttered something unintelligible, and pulled his little girl away by the hand. He actually took her away from the playground entirely. My oldest son watched the whole thing.
We were told four days after our second son’s birth that he would not have a typical life. That day and night were too horrible for me to be willing to remember very often. But I do know that one of my most overriding concerns was for my oldest son. Up until that point, I never felt like I had dealt him a bad hand in life. He had parents who adored him, read to him, played with him, cared for him. We could provide him with a secure and stable life, one that I assumed would be easier than my own in many ways. But his life had suddenly become harder, too.
We can’t go out in public without people staring. We can’t go on certain vacations. They will be teased. They will be embarrassed to bring friends over. When we die, my typical sons will have the financial and familial responsibility of taking care of their brother in addition to their other life concerns.
We have to balance the extra health care and therapies my disabled son needs with what my typical kids need. We need to find ways to spend time with each alone, and things that everyone can all do together.
I’ve since been somewhat reassured by having conversation with many siblings of people with special needs. To a person, they all say it was more difficult. Some feel a huge resentment and that they were unduly burdened. But most said that it made them more compassionate and patient. Some said it was comforting to them because they knew their parents loved them unconditionally.
My oldest is a sharp little tack, emotionally sensitive, self-conscious, tightly wound, and intense. I adore him to pieces, and he’s an absolutely amazing kid to parent, but I do worry that he does not have that easy-going personality which could take this extra difficulty he has been dealt in stride. My four-month-old certainly smiles a lot, but obviously we don’t know what his temperament will really be. We try to be as open as possible. My oldest knows that his brother will never talk or walk like a typical adult, and that we don’t know how much he will ever be able to say or if he will ever walk. He knows that he will always act like a child. He knows that we were very sad when we found this out. Sometimes, when a stranger tries to chat with my middle son, he informs her, “He has [Ridiculously Rare Syndrome]. That means a piece of one of his chromosomes got broken off and an extra bit got added. So his brain got made wrong. He can’t talk.” Some syndrome parents don’t tell their other kids until they ask, but we thought it was important to be very upfront. My oldest does not yet fully realize that people will be off-put by his brother and that they will tease him, although incidents like the one in the park are probably giving him a clue. My heart sinks at the thought of both of my typical sons realizing that.
I am too idle a parent to have ever been inclined much toward tiger mothering in any case. But when my wildest fevered dreams for one boy are that he might be able to bag groceries one day with a minder, it’s hard to get too hung up on the Ivy League for the others. When I was pregnant with my third, my husband and I would whisper to each other, “Please let him just be a C student.”
We had a third child in part because we always planned to. But we also read studies that showed that in a home with a severely disabled kid, outcomes were better for everyone – siblings, parents, the disabled kid – the more siblings there were (up to four). We also wanted to tilt the emphasis of our household a little bit away from all disability all the time. Apparently, there is often a special bond between developmentally disabled kids and their younger siblings – because they spend some time as developmental peers.
One of the reasons I want to go every year to the conference run by the charity that supports the Ridiculously Rare Syndrome is for my boys to know that they are not alone. That there are other boys and girls who have similar brothers and sisters. Last year, at the banquet at the conference, I saw a typical teenage boy who was a sibling go up to one of the girls with the syndrome and ask her to dance. She was over the moon with joy, and I imagined one of my typical boys one day thinking to do the same.