Guilt doesn't just eat parents of kids with special needs alive -- it disembowels us, especially when we think about taking time for ourselves. How can we go away? What if we're the only ones who can take care of our kids' needs? Or our absence would be a very big change, and any change results in air raid siren-volume tantrums? Or we know so many other parents who never get a break, who have no ability to take a break, who need a break worse than we do? How can we even think of getting away when ours lives are so intertwined with our children's? How can we possibly be so self-indulgent, so cavalier?I would have written more, about establishing child care co-ops with other parents where everyone works shifts with one family's kids while their parents go away for the weekend, etc., but I wrote the post between 12:30 and 2:30 AM after finishing a work shift that I couldn't work the next day because I'd been asked to be on the radio and Seymour was out of town and couldn't help with the carpool and Leo's early waking the next morning. All of which is probably why I'm sick now. :) But I'd be happy to brainstorm with anyone who's having a hard time figuring out how to get the break they deserve.
Breaks, Guilt, & Illness
Leelo & I have been sick for the past two days, and are spending all our time moaning and coughing on the couch together while watching Miyazaki films. I'm hoping to write up our KQED/My Baby Rides the Short Bus readings experience tonight, if I feel better. Until then, check out my BlogHer post about the autism moms' road trip, which turned into a meditation on guilt and the jettisoning thereof. Here's the first paragraph:
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I hope you're feeling a little better since you wrote this post. I'm on my sofa sniffing and coughing, too.ReplyDelete
I don't really have much to offer you in the way of brainstorming. I am an aide in an autism program and I wondered if perhaps there are aides in your area who might be willing to help out. Maybe it's a strange and scary prospect but honestly, we know the kids really well. We deal with meltdowns on a daily basis for very little pay. Our reward is to be lucky enough to spend time with some remarkable kids.
It might be worth looking into.
The Autism community has soooo many different issues that need addressing. It's unfortunate that we get so few, if any addressed. This may not make me popular here, but I think Jenny is picking the issue most dear to her and giving it everything she has. My own son, with gi issues since 1 week of age, has made miraculaous changes on the Specific Carbohydrate Diet, enough to use the recovering word. During this time we also uncovered the cause of 41 years of autoimmune issues I had been dealing with, Celiacs and Crohn's. So there's why we got the response we did. So I feel the need for recognition that this needs to be ruled out, especially in gi cases. Although I know it's not everyone. That being said, there are so many other issues we need addressed. Hurray for Holly Peete, maybe she will inspire even more of us to pick which autism subject dearest to us and get it addressed. Unfortunately, most of us do not have much free time on our hands, and it's hard for others to understand what we've been through.ReplyDelete
oops, I meant to comment the post above. I have a very flatulent brain.ReplyDelete
e: We definitely recruit aides. :) Leo's Friday night baby sitter is his former Kinder aide.ReplyDelete
Mrs. Ed: You are willing to discuss contentious issues without being dismissive, and that will always make you popular in this space. Jenny doesn't seem to be able to do that now -- but she might, eventually. I have hope.
I'm so glad you were able to figure out the best way to help your son, and yourself!