Tuesday, April 3, 2012

AUTISM AWARENESS DAY, un-feng-shui-ed

AUTISM AWARENESS DAY...It’s the end thereof.  Mommies and daddies all over the world spent twenty-four hours somewhat like this….


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.
6:30, EXERCISE BIKE for interval training; Web has been out in his wood shop working since 4:00; Zach has every book from his bookshelf on his bed along with every ball from the closet and every stuffed animal from the bin that sets on his toy shelf.  His bed looks like the city dump (cleaner and smells better…today anyway).  I am reading, Save The Cat!, sweating profusely, hoping that the ride will pump my sleep heavy legs to life and that the read will glue my hinder parts to my desk chair.  I get coffee when I complete twenty grueling minutes!  Coffee!!!

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
be liquid.
Pill swallowing is a "mustn’t”.

8:20, I GIVE ZACH HIS MEDS, same place (near the kitchen sink), same position everyday, must because. His computer is moved to the table along with his toys.  Web sits at the table with him, shape toys, photo recognition, popsicle sticks in the slot….till Zach has had his fill.  Even more coffee.

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.

9:30, INSIDE BRIEFLY for more balls and a drink of water.

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
2:30-3:30, BEDTIME routine.  We begin by hauling all the balls that have been taken outside for the day inside, two heaping buckets.  His computer goes back onto his nightstand, the movie, Homeward Bound is slipped into the dvd player, the blinds and curtains are closed, white noise turned on….every detail is checked, “must because”.  Zach removes his own shoes and socks and gets a drink of water.  He goes back to bed to remove his pants, drinks more water (which is always done in the kitchen…must because), back to the bedroom to get the toys he wants to sleep with and he climbs into bed pulls the covers up, grabs a book and waits 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!


  1. Web and Karen sorry when I have called at 8 pm. I didn'nt know Zack got you up at 1 am. Thanks for the glimpse into your days. It also helps me to pray for you. When i wake in the middle of the night you can count on more prayers from me! Zack is so blessed to have you for parents! Love you all so much. Barb

    1. Oh Barb, no worries about calling. We’re always glad to hear from you and especially these days as we wait with bated breath for news of our Jonell. We’re big kids, we can turn our phones off if we’re that tired :-).
      Prayer is always coveted!
      Love you!

  2. Wow you guy! This brought a tear to my eye. What an incredible blessing for Zach to have you two as parents! The majority of people could not handle this, but to look at it with the joy you guys have is something else completely! I feel honored to know you and call you friends. Thanks for sharing this and we will continue to pray for you Stauntons!

    1. Thank you sweet Isabel! Your comments are ever so kind and loving; really, we’re just doing what has been set before us…you know, as unto Father. I/we do value and even covet your prayers.


  3. I second that "wow"! Your reserve of grace. love, acceptance, and patience for this special guy runs deeper than anyone I've ever known. You encourage me greatly! Oh, to be found faithful... that is a truly great legacy. May weariness be continually expelled from your days, knowing only relentless sweetness. You are in my prayers - you are such a treasure, Karen!

  4. Britta you are too kind! I do hope all is well in the Buchstaber household? Miss you and Bucky, your infusion of Father and the art of you (special-special), your humor and your light.

    Marmie Karen

  5. Karen, another autism mom told me of your blog tonight and I read a few of them and feel wonderfully blessed, even more than usual. I also have a 20 year old son -- mine was born with autism, who thankfully, even though we didn't know that was what the problem was, has been milk free all his life, gluten free for over 17 years (as he was suddenly severely deaf and I suspected allergies and when we removed the rest of the gluten grains he had not already shown allergy to, a few days later he heard me with his back to me, so that was how he became gluten free years before we knew what was his underlying problem). Then at age 7, even though we homeschooled him, the local school insisted he have some testing done and he was diagnosed as autistic, based mostly on my description of what he was like before we removed gluten from his diet. As we learned of supplements that helped others, we tried as many as we could afford and drained our savings. Eventually when he was about 9 I started working part-time short-term jobs as my husband was retired. I well remember when I used to pray, "Lord, would it be possible for me to somehow have one hour of silence a day, somehow?" I was so sleep deprived, I sometimes wondered how I got from one place to another as I couldn't remember the drive. By age 50 I had a lot of white hair and looked older than some of my older siblings. Thankfully Christopher has healed a lot and I now get some sleep. He still has lots of allergies, still has severe difficulty sleeping but now we use melatonin to get him to sleep and 5HTP to help him stay asleep, and he has been working for a beekeeper in our area for a few months now. He's so thrilled to have a job as he searched for a year with no success. At first one sting would cause severe swelling but we found some homeopathic drops which are gf and help so like today he got several stings but none are swollen badly, thankfully.
    He still has a leaky gut and is allergic to most foods, but he takes that well, not complaining like I would if it were me.

    My heart goes out to you. I'm so thankful for your sisters. I relied on 2 of my sisters for support too during the early years of his life. They were his only babysitters and I never left him with either one more than a couple hours at a time as I knew it was too much for them, even though they loved him dearly. And God has been my main support, like yours.

    THANK YOU for sharing. I hope I can get my husband to read this and realize how different things could be for us.

    Richest Blessings,
    Carol in the westernmost foothills of Oregon Northern Cascade Mtns.