AUTISM AWARENESS DAY...It’s the end thereof. Mommies and daddies all over the world spent twenty-four hours somewhat like this….
JUST BECAUSE-OR-MUST BECAUSE…
In honor of our son, Zachariah William who carries the torch of light and joy
IT IS MORE THAN "JUST" for Zach, it is “must”: Thinking In Pictures, by Temple Grandin. Both the book and the movie shine an important and creative light into the world of Autism.
ZACH HAS AN internal alarm clock (a groove not unlike the Mariana Trench located in his brain that wakes him between 1:30 and 3:00. Time change, schmime change). Those pesky must’s! I slog down the stairs in my pj’s at 1:45 (Web and I alternate nights getting up with Zach, last night was my night to get up). I make my way into Zach's room. He’s out of bed playing with a bin full of stuffed toys, he’s stuck (stuck happens). I wait…still waiting. My back feels like a tight bungie, I lean over and grab the toys on the floor and toss them onto his bed then…after what seems like an hour, I lift the bin and place it on his bed (thinking out of sight…). He stands wondering where his toys have gone (but he’s moving). His sagging wet diaper is replaced with a nice dry one. He and I schlep to the kitchen with his water cup.
ZACH flips toys across the carpet, I stare blankly he’s stuck again. I keep saying, “water” to cue him, but it takes a while…finally, ten minutes later...we replace the water cup in the fridge door with the newly filled one. He grabs the cold one….must because) then digs around in the silk leaves (he’s yanked off of my silk plant over the past two years), window clings and such that fill the metal sand bucket setting on the counter (it’s his special stash)…must because. Were I not such a close observer of autism, I may say from afar, most of life is….just because. However, I have concluded that from Zach’s compulsive nature, most of his obsessions are “must because's” for him. So we grow patients, you know, those rare nerve endings that can take a licking and keep on ticking? Yep, those tender whips.
He climbs back into bed; I’ve gotten his movie and computer up and running, I say goodnight and haul my goose fleshed body up the stairs and back to bed.
4:00, THE WORD “diaper” hits sleep dulled eardrums. I feet-fumble-stumble down the stairs and into his room, his diaper is hugging his knees. He wants it off. The heavy insides do a back-flip to the floor. I am so overly grossed out right now….., but there is no stopping him, and there’s a huge cow pie, aka “Zach-pie” on his clean rug! He’s about to put his butt on his sheets, no time for medical gloves…darn those must’s, those must’s, those must’s!! I grab a few wipes from the container beside his bed and do a quick swipe, good, but not good enough. I don gloves, working quickly to clean him up, fit him to a new diaper and powder, lots of powder (all the while hoping the poop angel kept the sheets clean) and then….it’s the same routine as before, kitchen, water, dig in bucket, back to bed. Poop angel fail….I wipe the bed with a handful of wipes… I’m not in the mood to change sheets at 4:am; his bed has been changed four times in the last four days. He’s up for the day. I am not. He’s back in bed with cookies. I'm back in bed fighting a hot flash and begging sleep to come.
|Zach’s bed at 7:am after hours of playtime.|
7:00, Coffee. Wait, I meant, COFFEE!!!!
8:00, ...AND DAD BEGINS Zach’s morning routine. Books are read, tickles are given (if Zach is in the mood to be tickled, otherwise…. “no-koko!"). Steam boils from the shower; towels, toothbrush ready, diaper and clothes set out…they are ducks in a pond; water everywhere: I draw, crush, and suck his meds and supplements into syringes and prepare his gluten, egg, dairy, peanut free breakfast.
|Anti-seizure meds and supplements have to |
Pill swallowing is a "mustn’t”.
8:45, ZACH EATS BREAKFAST on the sunken living room stairs (it’s his chosen place to eat his meals, except dinner which he takes on the kitchen floor). Web and I have more coffee and engage in a quick conversation, “what are your plans today?” “How are you feeling?” I love you’s said and “Lets do lunch."
9:00 DIAPER change, whether he needs it or not, yep…must because.
9:10, OUTSIDE today we go directly to the yard to play kick-it (a game where multiple balls are kicked from one side of the yard to the other for hours sometimes). He did not want to walk his trail today. Sad.
|New cup idea came to me yesterday.|
It’s the tiniest things that bring a smile.
Jelly jar, plastic canning jar cap with a
hole drilled into the side. Insert straw.
|Kick-it in the muddy yard.|
10:00, INSIDE, YES, BRIEFLY for more balls and a drink of water.
It's Tuesday and from 10:00 to 2:00 we have respite; Aunt Linda. I take a walk, get dressed and delve into this blog.
10:30, SNACK TIME for Zach. He gets his cookies (Oatmeal) reads his books and Farm and Ranch magazines with Aunt Linda. They snuggle on the couch and watch Sesame Street (oddly, I’m jealous, this is my favorite “Zach time").
11:30, LUNCH TIME, pork-turkey veggie loaf, apple, baby carrots and pickles.
12:00, walk down the love trail. Back for another round of kick-it, or two, perhaps three…must because.
|Zach waiting for mom to come read|
|Zach’s favorite page in The Tortoise and The Hare. It’s all in the|
drawl…"weellll, Slim, do you want Jelly on
that peanut butter?” (you have to have
played the Living Books computer game to understand)
3:45, STORIES ARE READ (we’ve been reading the same stories for 17 years (The Tortoise and The Hare, Just Grandma and Me, Arthurs Teacher Trouble and a book of family photos. Today he chose all new books. What’s with that?! This is our time to lie together, talk about his day and we often do EFT (emotional freedom tapping). He loves one particular side of his head tapped. I adore this part of our day; I look forward to laying beside him, his soft hair up against my cheek as we read, laugh and connect telepathically, spiritually. Serenity and peace (more precious than gold) fall heavy.
|Dinner picnic style!|
4:00 HE TOOK his dinner (in the hallway) outside of his room picnic style (this kid knows how to live!).
5:00, HE'S ASLEEP. (Yes, we have tried putting him to bed later to see if he sleeps in a bit, but no).
Needless to say, it is now 8:30 and I’m thinking tea and horizontal. Web and I, on a typical evening, will be found in bed yawning around 7:00, perhaps watching a movie, or reading with our ceramic buckets of rooibos tea.
(Common things this day didn’t include, a seizure and a loud meltdown; thankful!)
Ahhhhh, till 1:30 or 2:00….Good night!