Friday, March 29, 2013

The time lost with Janey's brothers

Last night was a little bit of a tough night for William, my older son.  It was the night a lot of colleges gave decisions, and he didn't get into a few he hoped he would.  He's still been accepted at several of his top choices, and he has gotten great scholarships, but that didn't change the fact it hurts to be rejected, no matter how much you know that the schools are hugely selective and that to get on the wait list to two Ivy League schools in a night is not a bad thing.  Especially when you are 18, it feels huge and sad.  I tried to comfort him, and I hope I did, some, but I think he got more comfort from his high school adviser, and that's okay.  He said that she had been with him for more of the journey, so she understood what he was feeling more, and that was fair.  But still...it made me sad.  It made me sad because that is not what I wanted to be as a mother.  In my mothering dreams, I'd be there with my kids, all of them, for every step of everything.  We would have visited all the colleges he had dreams of, together.  We would have worked together on his essays (essays that in this life I have not even read, but that's his choice---I could have done at least that!), I would have had time to always be around when he wanted me around.  The fact that I think he's just as happy I was quite hands-off (he's told me many times that is how he likes it, and actually thanked me for not pressuring him or hanging over him) doesn't matter in my mind.  If he HAD wanted me along for every step of the process, it would not have been possible.  With Janey, I don't have that kind of freedom.  Every trip, every free time block, every day out has to be planned and worked out in advance.  It can never involve both Tony and me, except for rare cases when one of the boys can watch Janey or when she is at school.  And even the smaller times, the random moments of just being free to listen to William or Freddy, are limited.  I can't tell you how many times that that I've had to say "Just a minute---Janey is being crazy and I need to keep an eye on her"  Or the times I've tried to sneak a moment to look at something on their computer and Janey used the time to spill something, or freak out, or come ask for food that she wants that second.

When I read autism memoirs in the past, there was often little mention of siblings, except something along the lines of "Of course the intensive all out full press routine of curing our little guy left little time for his sister, but she loved to help us, and she was stronger for our hours of neglect of her"  Not exactly that, but that's how I read it.  I was determined when it became apparent how great Janey's needs were that I would not be like that.  I hope I haven't been.  Our situation is a little different than some, though, because Janey is the youngest, and the youngest by so many years.  If she is hungry and the boys are hungry at the same time, I can tell them to fix themselves something.  I can't tell her that.  If she is crying and they want me to watch a funny YouTube video with them, I expect them to not mind that I have to tend to Janey first.  If I choose the video first, they know that disaster will follow.  But that doesn't change the fact they are shortchanged.  They don't get my energy, my time and my ears as much as Janey does.  I hope they know they get my love just as much, but I still hate the inequality.

I have great sons.  They are independent, fascinating, wonderful guys.  I don't write as much about them as I would, because they are teenagers and no teenager wants cute little stories about them to be out there in the Wild Wild World of Web.  I don't think they have been damaged by Janey's autism, but I don't think there's any question their childhoods and teen years would have been easier without her being autistic.  Just like I sometimes dream of the daughter that is the one I'll never have, they probably dream of a sister they will never have---one that will be there to listen to them, to share grown-up things with them, to talk to about all the things Tony and I did wrong---the roles a sibling plays.  Instead, they know in their hearts someday they will be responsible for Janey.  They didn't choose to have a child as Tony and I did, but in the end, they will be the ones with the work of caring for her.  I can tell them that's not the case, but in reality, it is the case.

I know the conventional thing to say here would be to point out all the benefits of having a sibling with autism or another special need---how they have learned compassion, learned to love without expecting something in return, learned they are not the center of the world, learned that all people have value.  And those things are true.  But I think, overall, it's not a trip to Holland for them.  It's not just a different but equal sibling experience.  I want to thank them both, my amazing sons, for being kids I can feel so proud of, and I want to say I wish I could be the mother you deserve.  There's endless amounts of love for however many children you have, but there is not endless time, and that's the real kicker.

2 comments:

Sophie's Trains said...

I am very conscious of that as well. Sophie has 3 siblings, 2 older and one younger. Right now they are no more affected than if they had a regular toddler sibling, babies just take a lot of time. We make every effort to make sure they get special time, that its not just about the little ones. I do think sometimes what will happen in the future and I also think that I will ask the siblings to help if needed. For me its still a bit vague, so many ifs. I feel your pain though. I also wish I had more time, more hours in the day to give all the kids what they need and deserve. Perhaps though a lot of moms feel that way?

wellymom4 said...

This really hit home with me.. My Isabella has one older brother (only by 17 months) and two younger sisters. I swear I missed out on so much of their childhoods because Isabella's demanding needs always had to come first. They always had to be put on the back burner. I guess the only positive thing that came out of it is that they are very independent. It still hurts though, because I can't get that time back when they were so little.