Freaking Out in Autism-Land

This has been the busiest ten days of the year for me.  A week ago, my class presented their final projects for the semester and this past Saturday night, I gave a semi-important lecture for a local arts organization (in a blizzard here in the Midwest…..a blog post for another time).  I’ve been working toward my class’s projects (and showing them) since August.  I’ve been working on my lecture notes (and all the fancy Power Point pix for the lecture) since I was hired in mid-August.  But there are always last minute additions and when you practice the lecture text aloud, often you have to change them, right? After my class was finished,  I had Monday and Tuesday to grade the projects and submit grades to the most complicated grade submission program on the planet. I figured I had all of Wednesday to finish the lecture and edit the pix. So I could, ya know, take a breath and relax before I had to pump up my adrenaline for the lecture on Saturday.

Wouldn’t you know there would be Autism Issues…it was totally predictable….in the midst of it all? Now, I have to admit, this was not the Kiddo’s fault AT ALL, it was mine.  But because of his Autism and the OCD component of his Autism, I had to haul my Tuckus into gear to make all right with his world…..Autism-Land….or there would be hell to pay.

On Wednesday morning, I had the bright idea to water all my somewhat neglected house plants. I’ve been busy and just didn’t have time to do my usual plant grooming but, I thought, why not just water ’em and pluck off the dried up leaves? So, Kiddo was at his day program and I watered plants.  Just before he was supposed to arrive home, I decided to go upstairs to my room and water those plants. I  watered my bedroom plants and then tried to close (and lock) my bedroom door…….but it was stuck and I slammed it shut……big mistake!

Some of you might remember I’ve mentioned Kiddo has a collection of about 15 musical snow globes.  We had special shelves built on the wall in his room about ten years ago….and they’ve worked great…up until now.   When I slammed the door (his room is next to ours), four of the globes FELL OFF THE SHELVES AND SHATTERED ALL OVER THE RUG, BROKE TWO OF HIS LAVA LAMPS AND RUINED HIS TV!  As I realized what had just happened, I heard his bus, so I closed his bedroom door and got downstairs to meet it.  He, of course, wanted to take his backpack up to his room and hang it up on his closet door, as always.  But Kiddo hates disruption in his room; I even have to make sure the door is shut when I change his bed linens or he has a hissy fit. I grabbed the backpack, told him to have a clementine (his absolute favorite snack) and ran upstairs to further access the damage.

I can’t even begin to tell you the damage.  The rug was gross and stained…..and there was glitter (or something) all over because these were, you know, snow globes. Something smelled foul and I realized his collection of Troll dolls, right underneath the shelves with the globes, were soaked with whatever rancid water was in the broken globes.  Right around this time, The Youngest came home to check something on his laptop before going back to teach. I asked him to help me move the TV shelf but he told me he didn’t have time to change…..and this would be messy!  So I told him to turn the family room TV to PBS and their children’s programming…..as he and I were talking in the kitchen, The Kiddo went up to his room behind our backs, opened the door……and began screaming….bloodcurdling screams and wouldn’t go in.  The Youngest and I got him downstairs, I made him a multi-course lunch and encouraged him to eat it in front of the TV (we never, ever do that…but needs, must). The Youngest had to go back to work so it took me about 30 minutes to get The Kiddo to calm down.  I decided I had to get ‘er done and not let him see anything until the Clean Up was finished. SIGH!

It took me almost eight hours to clean up the Flippin’ mess, from the time I slammed that lousy door to being able to let him back in.  I picked glass shards out of the carpet with my bare hands.  We tried to move the TV (and took all the books off of the shelf ) and the shelf fell apart. So, The Middle Boy and Hubby went out to Target and got him a new shelf and TV (an LED which is certainly safer than his old tube TV), and I was on my hands and knees cleaning the carpet with my carpet spot cleaner.  I threw the Trolls into the washer (and they came out great, who knew?) and rearranged the books and VHS tapes (he’s learned to use them …….we’ve tried getting him a DVD player….our Kiddo is an old school-technology guy) and put those damn snow globes on a very, very, VERY sturdy shelf on top of another book shelf. The room looks great, the new TV is safer for him and the carpet looks better than it has since the last time we had the carpets cleaned.  Hubby hooked up the new TV to the video/DVD player and things are organized better for him. The Kiddo sauntered into his new and improved room with a big smile on his face.  All was right in Autism-Land. GGGGGGRRRRRR!

We all agree this was a good thing, in the long run. Why the universe conspired to choose the one day I had to do my own stuff to make it happen, I’ll never know.  I was so tired, my eyelids hurt and I sobbed when I went to bed.

In case you were wondering,  I finished the lecture on Thursday afternoon. It went great but I never did get my *relaxing* time as I had wanted. ‘Cause why should anything be different….I’m living in Autism-Land!

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A Modest Proposal

Today I read an article in my local *newspaper of record* about the new Sesame Street character, Julia (or is it Julie?), the little girl with autism.  This wasn’t the first time I read about the Sesame Street character but this article spoke of why they chose to have a girl character, why they created her more for autism awareness for NT kids and a few other issues. Now  let me be clear…I am grateful for all the autism awareness on television from Sesame Street to Parenthood to The Big Bang Theory.  I think the characters are interesting, if a bit sanitized for the general public.

But back in the day, when “Rainman” came out, there was a bit of belly aching from some in the Autism Community for lack of realism but I was grateful there was a movie with a character who had autism!  I actually knew the Mom of the person the Rainman character was based and the character’s behavior was based on a real person with autism, so why some criticized the lack of realism I never  understood. There have been other movies since with characters who have autism, again, sanitized and  perhaps a bit romanticized but……again, I’m just happy Our Kids are represented in the cinema.

Anyway, today over my morning coffee, after reading that article, I got to thinking…..instead of having a character with autism on a scripted show, wouldn’t it be more interesting to have real people with autism on a reality series? So here is my proposal:  Make it a cross between “Survivor” and “Big Brother”  and  perhaps a little, “So You Think You Can Dance?” Instead of parents of kids with autism, make the contestants extended family members of people with autism (I’d like to nominate several of my In-Laws), arrogant special educators and para-professionals (nominated by parents of their students), neighbors of families with an autistic family member and those older ladies in Target and Costco who think they  know how you should handle your kid when he has a melt-down in the middle of the store.  And of course, we can’t forget those folks with perfect children who are so precocious you feel inferior just standing next to them.  I’m sure most of you have several people you would happily nominate!

I imagine there should be about 25 contestants to begin with, in a lovely perfect house, with lovely and perfect furnishings…and part of the *goal* of the show would be to keep the house and furnishings lovely and perfect! We would start out with 5 kids, beginning with one or two newly diagnosed (perhaps 2 or 3 years old but a newly dx-ed 10 year old might be interesting),  one or two elementary school age and then a boy (has to be a boy) entering puberty.  The children with autism should cover the spectrum but a *night time howler*, a *feces smearer* and someone non-verbal should be included. It goes without saying they should all be on different diets. As contestants are voted off, a new child with autism will join the house, and each child will be slightly older until there are at least three adults with autism (covering the spectrum) as well as the children.

While the children are at school, the contestants will be expected to clean and cook and if there are any problems at school, they will be expected to drop everything to handle the problem. They will be made to feel guilty if they are not able to fly  right over even if they are in the middle of cooking something needed for a special diet which will be ruined if they leave it.   After school, they will be expected to shop, run errands as well as take the kids to any therapy or extra-curricular activities. All this will be happening while trying to keep up with their own jobs via phone, text or email.

As each new person with autism joins the house, the jargon will change….IEP will stay the same but *Staffing* will become *M-Team* and ASD (Autism Spectrum Disorder) will become plain ol’*autism* etc.  The contestants will not be notified of the changes and will be expected to figure it out contextually.  And as the new autistic people join and are older, contestants will be expected to find adult day programs and the funding for the adult day programs.

Did I mention there will be surprise inspections which will be part of the elimination process? And those Inspectors will be the *voted off* contestants who will feel free to criticize their former colleagues…LOUDLY! I’m not sure what the ultimate prize should be at the end and I’m not sure how I would *pitch* the idea to begin with.

But I do know when someone tells me they understand my situation or can empathize or thinks it’s all Rainbows and Unicorns, I want to tell ’em if they think it’s so easy or they could do a better job, they can take over any day.  The “So You Think You Can Survive Raising a Kid With Autism?” show would be a great outlet for those folks. But it’s not practical…..they wouldn’t last a day!

Gallows Humor and Chuck Norris Jokes

The older The Kiddo gets, the more I laugh……. laugh at our crazy life…..laugh at his autism-y quirks….laugh at all the stuff, if someone else was telling me, I wouldn’t believe but if an Autism parent was, I would.  Let’s face it, folks, some parts of our life are hilarious! Well, maybe not totally hilarious but darn funny….a day later and after the fact……..the next year and after you’ve moved…….or after the carpet is cleaned. Poop stories are especially funny a decade or so later.

A friend of mine told me she had a wonderful nursery for her two sons.  The eldest *Joel,* is NT and she had such a great time picking out great furniture for his baby’s room…..a beautiful set of changing table, rocker and crib, all a beautiful, sturdy white wicker. It was such a lovely cocoon of calm…..the baby’s room was her favorite room in the house. When *Jonah* came along (with autism), she regretted that damn wicker furniture every single day because he was a smear-er….a feces smear-er….and she couldn’t keep it clean. She finally gave up, went to Wal-mart and bought the cheapest and easiest to keep clean crib she could find. She pitched the wicker set….no one would want it anyway! *Sophie* and I couldn’t stop laughing when she told me about the wicker crib….. her story about questioning a Wal-mart employee about the durability of the finish when using Lysol caused me to laugh so hard, I hiccuped!

When my boys were in Junior High and High School, Chuck Norris jokes were popular.  If you’ve never heard of them, here are a few for your enjoyment (and the reason for me telling them will be apparent in a bit):

There used to be a street named after Chuck Norris, but it was changed because nobody crosses Chuck Norris and lives.

Fear of spiders is arachnophobia, fear of tight spaces is claustrophobia, fear of Chuck Norris is called Logic.

Chuck Norris and Superman once fought each other on a bet. The loser had to start wearing his underwear on the outside of his pants.

When the Boogeyman goes to sleep every night, he checks his closet for Chuck Norris.

Chuck Norris doesn’t wear a watch. HE decides what time it is.

Chuck Norris doesn’t read books. He stares them down until he gets the information he wants.

My Kiddo, like many people with autism, has OCD issues.  And also, like many people with autism, it appears he isn’t paying attention to his surroundings but he is, and don’t you forget it.

I’ve mentioned in a previous Blog we re-did our kitchen a little over ten years ago and decided to resurface our cabinets instead of gutting the whole thing, mainly because we didn’t think he (WE) could handle two or more months of upheaval. The cabinets and floor plan are essentially the same as before. It was a mistake to do that because he………wants things the way they were ten years ago.  I have beautiful solid surface counters but need to have heat resistant pads on the counters near the stove and oven when I cook so it doesn’t crack if I accidentally put something on them….and Kiddo moves them….when I’m in the middle of cooking……..as soon as I leave the room……answer the door or the phone…….check my email….change a load of laundry….or in the middle of the night. The Kiddo wants things a certain way in our home.  He is willing to wait for minutes, hours or even DAYS to change things in the kitchen or living or family room back to the way HE thinks they should be. This where the Chuck Norris jokes come in……Chuck Norris doesn’t sleep, he waits…..and that’s Our Kiddo……when he sees something he wants to move back to the way he thinks it should be…..Kiddo doesn’t sleep, he waits!