Did you hear them? Did you hear the violins? They were playing Sunday afternoon. Whining, actually. SCREECHING, even. You, see, I was having a pity party with a guest of one. And, that would be me.
Listen. With all due respect to any kind, dear soul who attempts to cyber reach me through comments and assure me that there are people who befriend children like my own, I just need to vent here. I just need to be heard. I'm feeling frustrated. Alone. Miffed. My request is that maybe someone read this and understand that yes, I'm going to Whine. Roar. And Bitch. Sometimes. And, more importantly, that the cacophony, though it boomed and pulsated in stereo only within the confines of my own head, is one that so many parents of children with severe intellectual and social disAbilities like my daughter hear. It is not a pretty medley. It's howling-ly lonesome.
And, please note this: I eat positive affirmations for breakfast. If you've been reading this blog, I hope you get it that I adore my Life, pockmarks and all. Life is Good. With all it's crooks and turns, I embrace my daughter's autism and "All the Rest of Life." But the social component of Autism? Well, it's just a freakin' bitch a lot of times.
For days my body has ached to get to the Y for a muscle stretching and soul massaging yoga workout. Only, I did not have childcare. Grace loves the pool. It would be sosimple, you see. Drop her off to bob up and down in the chlorine with a friend or a kind adult to supervise while I pretzel twist, sun salutate and namaste myself and my contorted, be-spandexed peers. But, I didn't have that someone. Yada yada. I'll try to skip you of the details of how much I pay for sitters and how far they drive. All I WANT. IS. ONE. FREAKIN'. HOUR. TO. MYSELF. FOR A YOGA WORKOUT while Grace makes waves in the cement pond.
Last time I wrote about this it was early in the holiday season. Seems my little discussion with the folks at the Y -- actually many discussions with any staffer I can catch standing still there for one moment during the last two years -- is being heard. People are coming to me, asking questions and saying they are talking about it in meetings. So, in lieu of asking The Boyfriend, also awash in jet lag and an-hour round trip away, I DARED. I. ASKED. THEM. The answer was no. Things like staff. Liability. They may start something but not this. In the end, if they start something, then I am happy, whether I can access it or not.
Nine hours in and I'm still hacking away at emails that dammed my in box while I was gone. For more than two hours today, Grace bobbed at the end of the pool while, on the other side of a glass wall, I tapped and banged until my laptop's battery juiced out. In the room down the hall, people breathed deeply and morphed into warrior poses.
And let's talk friends. It would be so nice to have them. Believe me we've tried. We've paid psychologists and had special educators to train the neighbor kids. How many times have I taken chocolate chip muffins and done autism awareness programs at school and church? We still don't have any friends that translate after school. We are almost 15 and we have no friends. Though her child is years away from eligibility, one visionary, energetic local mom of a toddler with Down syndrome is starting a Best Buddies chapter in Tennessee for this need. It cannot come fast enough.
Yes, I love my life but this. Is. The. Hardest. Part. About Autism.
Grace -- freshly showered, obligatory vending machine bag of cheddar-flavored potato chips in hand -- walked out by my side to my car into the bright sun unable to penetrate the bitter cold of February's last day. And there. On the mud and snow-splotched once-black bumper is the spread of new stickers I plastered once George W. forever ended his reign. The 1.20.09 was peeled. The faded, ratty collection of others pronouncing autism awareness and yelling liberal political agendas were scraped, too. And, here, in it's place, I am reminded of what I believe:
Actually, it was the Igbok that caught my eye first. Yeah. This is real. This stuff about which I've written here today. It's gut-achingly real. But so it this: "It's Gonna Be Okay." (Damn-it!)