Tag Archives: Autism

Autism Scrub Bucket Challenge

This ALS Ice Bucket Challenge, gave me an idea for one for Autism.

yep

For the Autism Scrub Bucket Challenge you grab your scrub bucket, gloves and non-toxic cleaning supplies and go to the home of someone with an autistic child who fecal smears and you help scrub their walls and floors… and furniture… and light fixtures.

When you are done, Never EVER say, “I don’t know how you do it!” No!!! Replace that thought with the act of giving them a $50 on your way out the door. Post your videos!! I nominate ALL OF YOU.
#AutismScrubBucketChallenge

UPDATE: So, I have been getting serious inquires from people about this and a lot of hits on it from search engines. I did this a bit tongue-in-cheek –I have a twisted sense of humor. That doesn’t mean you can’t do it 🙂 Find a family to help. Clean or babysit or slip them some cash. Trust me… none of us ever have enough money. If you want to donate to an org, give to The Nation Autism Association. THEY HELP REAL PEOPLE. DON’T GIVE TO Autism Speaks.

 

Only a mom, in a funny red sheet.

Another child with autism has wandered to their death –death by drowning.

[It’s now official. The body of the child found was Leo.]

The mom last saw the child at 4 a.m. She fell asleep. For 15 minutes. Sometimes, that’s all it takes. Sometimes kids in houses locked down with better security than Fort Knox get out.

I beat this into the ground, I know… but the autism you see portrayed in the media is not reality for many of us.  That is why “autism” is not given the attention it ought to be given.

The autism parents I know are superhuman –but even super-humans need to sleep once in a while. On lack of sleep we don’t function very well. Imagine years of lack of sleep. Add on a heaping pile of adrenal fatigue from our 24/7 fight or flight/red alert world. The world we survive in because we know, that at any second, the shit could hit the fan.

The stress and lack of sleep have a lovely downward-spiral way about them… once you are in that cycle it just gets worse. I am so disorganized at this point in my life that every day gets harder and harder. It’s damn near impossible to think about what I am going to be doing five minutes from now.

I know I am not the only autism parent in the world who’s slid the couch in front of the door to catch a nap. Our kids by their very nature don’t sleep well. So we don’t sleep well. I can remember when my son went through a phase of waking me up by screaming several times a night (all because his sheets came untucked at the bottom. Thank the Dogs for XL twin beds for giants).  My life has gotten a little better because, for the moment, we are sleeping better. But the connections in my brain are still there. One scream from him derails my whole day. Brings it all back.

By the way, we are sleeping better because I let him drop out of school and adjust to his own sleep schedule which is about 3 a.m. to noon for him. That is not really a good solution, is it? It’s survival, but it means that I get no free time now.

We are hyper-vigilant. We don’t relax.
ready

Yet, we are mere mortals.

A couple months ago my son sprained his ankle pretty bad out in the yard.  It took me a while to realize what really happened, as his language skills are that of a two year old at best.  He fell. He fell trying to climb over our 6 foot privacy fence into the neighbors yard because he is obsessed with their pool.  I put in a nice sized above ground pool for him –but theirs… Oh, theirs is a nice in-ground pool surrounded by a screened in lanai.

Have you ever been thankful that your kid got hurt? Welcome to autism-land!  I WAS.  Because the pain of that sprained ankle means he won’t try that again.

About a month later we got home while the lawn was being mowed. Gavin went out back immediately. I started to walk down the hall to the bathroom… I heard the neighbors dog begin to bark in an unusual way. A red flag. My foggy brain made the connection –the gate to the fence was unlocked while the grass was being mowed. I turned and ran and got outside just in time to see the neighbor looking confused and agitated (we’re new here, hadn’t met them yet) and my son trying to break into their lanai.

What if? What if I hadn’t heard the dog and spent a couple minutes back the hall in my bathroom before I realized what had happened?  What if Gavin (17 years old, 6 foot 1, complete with mustache, freakishly strong and scary –if you don’t realize what autism is) had a meltdown when she told him to leave…What if the neighbors felt threatened?  What if they shot him?

What if?

What if an exhausted mom who very likely hasn’t slept good in years falls asleep for 15 minutes. Her kid drowns, that’s ‘what if’. And she now has to live with that for the rest of her life.

When these cases –and I lost track of how many this summer so far… 15 maybe? 20? were brought up to the IACC one of the adults with Asperger’s on that committee suggested arm floaties.
Can you see part of the reasons behind my frustration?

The squeaky wheels getting the gov’t appointments on these committees do not have the same “autism” that my son has. And businesses like Chili’s who canceled a fundraiser for AWAARE –one that would have raised money to help prevent wandering deaths, cave to the bull shit spewed at them from the crowd of people who think autism is a GIFT.

Come spend a week with me and see what autism really is. Bring your own vodka because I don’t have enough to share.

And if there is autism in your neighborhood, go knock on their door and get to know them and their kids and offer to babysit so mom can take a freaking nap or get out of the house for a couple hours to clear her head. And don’t take offense when we turn down your offer because you just don’t know our kid well enough to take on the role of babysitter for a couple hours.

To the hundreds of moms and dads who’ve lost their kids to autism because they fell asleep, because they took a minute to go to the bathroom, or do the laundry, or tend to their other child for 30 seconds –because they had a human moment… All I can give you is the promise that I will keep screaming and trying to be heard.

Robbed.

My son with autism turns 18 this fall. He should be about to begin his senior year of high school. That’s not happening. I was just thinking about what I was doing at his age. I spent the summer before my senior year at Fort Leonard Wood, Mo. Wearing camo and combat boots.

My friend Carla and I. FLW. MO August 1993.
My friend Carla and I. FLW. MO August 1993.

Early June 1993. I got on a plane for the first time and flew halfway across the country by myself. I remember the feelings of doubt in my gut as I wondered what the fuck I had gotten myself into, but there was excitement too, and I was pretty happy with the decision I had made. It was my first taste of freedom.

You spend a few days in a reception battalion before you go off to basic training. It was over a weekend and I can remember we actually got to go to a dance one of the last nights. Yeah. It’s not your dad’s boot camp. I met a guy named Greg. He was my two hour long crush for the evening. Later I went on to name my rifle after him.

...and I will name him Greg, and pet him, and love him...
…and I will name him Greg, and pet him, and love him…

I had a lot of fun there. I know that is not the point, but I am weird. I loved the camping. I loved the smell of musty canvas tents. I loved playing in the dirt. I loved field chow. I loved the friends. I loved the crazy drill sergeants. I loved the firing range. I loved the smell of gun powder –the only downside of the range was from being right handed, but left eye dominant. You have to lean over the rifle farther. Hot spent brass goes down your shirt… into your bra. Just sayin’ –Yeah, I loved it all. Best summer camp, ever.

Me in Basic Training.
Me in Basic Training.

I still had one year of school to go, but I knew I was going to transfer to the Regular Army and was loving this new beginning. I suppose I cut all the crazy fun short by having a kid at age 21, but I was OK with that because I had lived a million lifetimes in those few short years between high school and parenthood. Great friends, great adventures, drama filled break-ups, hook-ups, parties, fights, love, hate, drunken shenanigans –shit… you name it, I did it. I loved every minute of it and wouldn’t trade a single minute of it. Those moments helped make me who I am. For better or worse. My choices. Good ones. Bad ones. My life. It was mine to live or fuck up as I saw fit. My beautifully flawed autonomous life.

My son? Oh, he’s still just pacing the house. Begging me to take him to the store to buy a big bottle of soda. Screaming when a computer program doesn’t work right. I KNOW he wants to be on his own, but he cannot. He will ask me to leave. He will ask if he can drive. I finally had to tell him one day, “Gavin, because of your autism and seizure history, you can never drive a car.” [For those who are not familiar with him, he is nowhere near high functioning. He is severely autistic. He doesn’t effectively communicate. His IQ tests very low. His brain was significantly damaged.]

He’ll never get a chance to fuck up big, to fail big. He’ll never get a chance to make decisions without me.  He won’t get to learn as he goes –to mold himself into the adult person of his own choosing.  He’ll never get a chance win big, to succeed big –to set a goal and prove himself even better than his wildest dreams.  I am not saying there is no one in there –but his physical limitations prevent him from exploring his talents.  One example, he is extremely musically talented –but his auditory PAIN AND SUFFERING prevent him from developing that talent. (I already know I am going to have people from the ND crowd telling me he CAN and I am selling my son short.  But you don’t know MY son’s autism. Period. You don’t live in my house.)

Robbed. --at 'vaccine needle' point.
Robbed. –at ‘vaccine needle’ point.

He was robbed. Of his entire autonomous adult life.
He is a child inside, frozen in time. In the body of an adult man.
He won’t be meeting some girl named Kaitlyn at a battalion dance. He won’t be naming his rifle after her. He won’t be making new life-long friends. He won’t get to enjoy the smell of musty tents and gunpowder, or feel the burns from freshly ejected shell casings going down his shirt. No first kiss. No fist fights over a girl. No drunken night time water skiing on a boat with no lights 😉 No college. No high school diploma. No first car. No adult life.

Because Vaccines. Because Autism. Because people didn’t, and still can’t, see what we are doing to generations of children.  Yes, I KNOW my son was genetically susceptible to vaccine damage, but that doesn’t make the vaccines less guilty.
We are killing our kids. Literally sometimes, figuratively other times. He was robbed.