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.

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6 thoughts on “Only a mom, in a funny red sheet.”

  1. Reblogged this on breakingdownandbuildingup and commented:
    This woman expresses the frustration I feel when people get all huffy puffy about Autism Speaks. Sure, some kids eith Aspergers have crazy gifts that allow them to become billionaires. That doesn’t happen very often. Some, as unconditionally loved as they are, wear their parents out to dangerous levels of exhaustion. That happens a lot more often. Discontinuing the support of these charities leaves these parents all alone with no assistance, support, or understanding. Parents of kids with Autism need support!

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  2. What does Autism Speaks do to support families? I would recommend National Autism Association as a charity that supports exhausted families.

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    1. Pretty much nothing. Big Fat ZERO. What they do excel at is giving themselves huge salaries and spending “research” money by giving grants to other organizations where the power structures sits on Boards. Bet they get nice fat salaries from those other Boards, too. 😦 When I researched this in order to encourage my then employer to NOT raise money for AS, I discovered to my horror that about 4% of donations actually goes to real kids who need help. They are horrible.

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  3. Just starting to read through your posts. This is my fear. Exactly. My son is 14, smaller but still tall and sprouting a little growth of mustache himself! Most of the time he is well-mannered, congenial, and controlled. Maybe 80% of the time. The other times to strangers he appears to be an asshole, and he can be a threatening asshole. Especially if someone freaks out and starts carrying on about it. So worried about him. Not just because of misunderstanding people in the neighborhood and community but from law enforcement.

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