I’ve definitely been rolling around in the mud of self-pity, sorry, and fear lately. I’ve also been wearing an Christmas-sweater-ugly cloak of anger. I’m not really out of this hole yet, to be sure. But Max is having a better day. So I thought it wise to write something nice so that anyone reading this (is there anybody out there?) isn’t left to draw their own conclusions about what a terrible mother I am to a kid who certainly didn’t choose to be autistic.
So first…my goal to capture a few shots of Max at this age where I feel like I can really see who he is? Accomplished. Sort of. Not a lot of great eye contact with the camera, but that joy that is pure Max was on display. (It’s hard for me to just keep posting these totally unprofessional snapshots, but hey. This isn’t a photography blog, so take a deep breath, Maya….)
We survived our day at the South Mountain Creamery Festival in Maryland, where hubby and I briefly fantasized about living in a historic home for next to nothing in the middle of nowhere, where life would be easy, and cheap, and where….nobody would buy photography services from me or real estate services from my him….and we would probably have to open some sort of Etsy store online to pay the bills.
Elsewhere in our lives, we are giving up the GFCF (Gluten-Free, Casein-Free) diet. Max’s school felt that we were simply throwing too much shtuff against the wall (compression vest, Ritalin, GFCF) and they have no idea who our child really is, since he’s buried underneath all of these half-crazed treatments that his parents read about on the Internet. Fair enough. They should see my personal collection of Occupational Therapy toys.
Seriously. I could open my own OT practice with what I have desperately ordered from various websites. Although I jumped the gun a bit and ordered tons of sensory stuff that Max has no interest in (anyone in the market for that vibrating hose thing? Those blocks with the colored liquid inside? Putty? A clackety wooden bell thing? Those vibrating cats on sticks for your mouth?), his favorites continue to be the decidedly low-budge IKEA sack swing, a $30 trampoline from Walmart, and a “crash pad”. This pad consists of various pillows and beanbags that once used to gingerly support newborns I photographed, but which now serve as the only thing standing between our wooden floors and Daddy’s loving, but violent throws and squishes of our Dear Boy (otherwise known as “rough play”, “crashing”, or “prioproceptive input”). I guess the kid likes to go discount. Really wish I knew that before I went nuts here and here.
So he’s off the drugs, the annoying/expensive/stressful special diet, and the $200 compression vest….And he has a good day. Figures!
No, he’s not cured.
But he did stop obsessing over his bungee cord all of a sudden, now choosing to simply carry it around like a lovie. And he did hang out with me on the couch and giggle madly when I did the Itsy Bitsy Spider on his legs. And he did sit still while I gave him his Qigong Sensory Massage (OK. I can’t give up on EVERYTHING!). And even though he’s upstairs in bed talking to himself and kicking the wall at 10:30pm, I somehow feel a bit lighter today.
Right on!
I was like you and over bought products, read almost every book on the market about therapies and parenting a child on the spectrum.
Long story short one thing that we could not live without was Melatonin.
http://www.webmd.com/brain/autism/news/20091012/melatonin-helps-autistic-kids-sleep
Highly worth trying. It has made such a difference in my son’s sleeping.