All over Facebook I see statuses of parents dealing with school being out. Grateful posts about not having to pack lunches quickly turn into posts about the hassles of shlepping kids to baseball practice or kids being underfoot saying, “I’m bored” 600 times a day and in between happy vacation photos and day trips and amusements parks.
In other words, the stuff of life. Or at least the stuff of life when you are a parent.
As the parent of a special needs child, I recognize these irritations but honestly, I also do my share of eye rolling when I read stuff like this. It’s tough not to shake my head when some parents’ biggest problems are that they cannot decide how many pairs of flowered underpants their kids need to pack to go to Jewish sleep-away camp for two weeks. It sometimes makes me cringe when I read stuff like this, not just because I think of friends who struggle financially and aren’t in the position to be able to pay to send their child to be cared for by others for two weeks. Or those, like me, whose kids just can’t participate in things like summer camp, because their needs are so specialized and they just need more attention and care than they can get in most summer programs.
Look, it would be great if I could be a bigger person. I don’t begrudge anyone anything but when I read that someone’s biggest challenge is whether to buy the BMW SUV or the Escalade and this is presented like Sophie’s Choice in the blogosphere, without one word of gratitude for the position they’re in, it’s hard to take what they have to say seriously.
I suppose this means I am not a bigger person, okay. Well, I can live with that.
My daughter has autism. Summer vacation is tough for her. Six weeks without school is not fun but a burden. I don’t get to ship her off to camp because there aren’t enough camps who can handle kids like her. Just going and being in a different environment adds a huge layer of complication to her life. It is the trigger. My daughter needs her routine and although she looks forward to time without school, usually the loss of routine wears on her and makes it difficult for her to focus, to listen and to enjoy life around her.
Summer vacation is not an endless gaggle of swimming, fun, cook outs, and campfires; it is hard work for her. It’s no picnic, literally or figuratively.
Still, I am grateful.
I am grateful that we are in the position to be able to take a family vacation every year and that we can make the choice to have live-in household help. I am grateful that although my husband and I both work and both need to work (both financially but also for our own well being), we have a very nice life with our child. We spend a lot of time with her. We try to make her life a happy one, we go a little too far in the doing-things-for-her-department but her life is hard enough. It’s taken four years for her to learn how to read (and she’s not quite there yet), two years to learn how to ride a bike, one year to learn how to brush her own teeth. Everyday things are a challenge for her; she deserves a little coddling.
Her life is not as easy as it should be. She deserves to be off at summer camp, with her biggest problem being whether to swim or play tennis. Still, in the grand scheme of things, her life could be much more difficult. I know many parents who are dealing with feces on walls, violence, and kids who are in pain and miserable.
So, I am grateful.
Grateful for every advantage that we’ve got, for every smile, for every time she deals with her frustrations rather than melting down, for every time she tries. I am grateful that we have more good days than we have bad ones.
If I had a magic wand and could have any wish, I would wish for my daughter to have it easier, a life where daily routines don’t take so much effort, where learning would be a given. A life where her hardest choice would be chocolate or vanilla. But those challenges, those hardships, as tough as they are sometimes, they bring bring something good to me, as her mother.