My boys are home from college. I guess it would be more accurate to say my men are home from college, as they are both really adults now, but they will always be my boys.
They both aren't working this week, and Janey is in school still, so I'm getting a rare treat, time with them both, without schoolwork looming over them. It's great. But it's also making me think a lot about how Janey has affected them.
In some ways, because they are both so much older than Janey (7 and 10 years older), it hasn't been the typical situation for siblings for a child with autism. I can't even quite wrap my mind around how it would have been if they all were close in age, although I know many of you have that setup. Because they are older, I'd say it's been easier on us as parents, but maybe, perhaps, actually tougher on them as siblings.
From the time Janey's tough behaviors really started, when she was around 3, in many ways, the boys have been on their own. Of course, not totally, but so often, we were simply not able to do things as parents for them that most parents would do. We missed school events, we were unable to help much with homework, we couldn't go on family vacations or eat out or actually do very much as a whole family at all. We used a lot of "divide and conquer". One of us would care for Janey, the other would go to the play or do the drive to a friend's house or sneak out for a birthday meal. The boys almost never got both of us at once.
Way too often, I read cheery, almost flip accounts of how having an autistic siblings helps kids. They are supposedly more compassionate, more caring, somehow bettered. That might very well be the case. I am very, very proud of my boys. They are fine young men. But I don't think this is because of Janey's autism. That doesn't seem like a fair burden to put on either Janey or the boys---that somehow she made them better.
I think the truth is that they missed out on a lot. I think about the time of Freddy's graduation from high school, last year. That was an exceptional time, due to Janey's long hospital stay, but only I was able to attend his graduation. Neither of us saw him off to his senior prom. We weren't there for just the general excitement that goes along with the end of senior year. I can't sugarcoat that. He missed out.
Both boys have learned to be independent. They probably had more freedom and less parental involvement (or interference) than most kids their age. We certainly weren't able to be helicopter parents. Although that might be a positive, it wasn't a choice. It wasn't a parenting style. It was just reality---how it had to be.
I can't even begin to count how many times there were that the boys wanted to do something, like watch a TV show as a family, but Janey had a meltdown and we wound up not being able to. I think too often, we just expected the boys to understand that her needs had to come first. I feel guilty about this, although I don't honestly think there was a way we could have handled it differently. If we tried, as we did a few times, to power through Janey's outbursts and screaming and keep to our plans, it wasn't enjoyable, and the boys usually were the ones to call it, to give up. I can't sugarcoat that. I do know that as kids get into their teens, hanging out with parents is not always the top fun on their lists, but I wish we'd had more chances to give it a try.
This is a pretty downbeat post, but it's an honest one. I can honestly say, though, that the boys love Janey and she loves them. We're a family. Having a sibling with autism is a fact of the boys' lives, and always will be. She's not a character builder, or a barrier to overcome, or a inspirational story to tell. She's their sister, and all three of my children are amazing people. I'm pretty lucky that way.