This Is My Autism: The “Gift” Of Being Fearless

Michelle Guppy never ceases to inspire me with her strength and faith. She coined the term HOPEISM (the belief that our faith and God’s faithfulness will collide), which she not only practices daily but shares to help and inspire others. She previously let me share this post highlighting her son Brandon’s beautiful soul and unbreakable spirit. But this fellow autism mom never sugar-coats life with autism. I am grateful to Michelle for letting me repost this piece – I’m 50 and too old for this – from her blog, From Hell to HOPEISM. I can think of no better post to kick-off the This Is My Autism series this month, which will shine that bright blue light on the realities of autism and what families affected by autism face every day. 

As I type this a few days out from “the incident” I can again feel that knot in my stomach. That feeling of having the wind knocked out of you… That horrified shock at what could happen. That thought of “I’m 50 and too old for this shit…”

You see the top of the rail of the deck around the trampoline and how it’s higher than the fence?

The corner sticking out furthest from the trampoline?

Where there is nothing to hold on to?

Brandon was standing on that.

Wearing socks…

Standing on that top rail of the deck.

Not sitting on that rail….

But standing straight and tall on that top rail.

Did I mention that he was wearing socks?

And that they weren’t slipper socks?

I mean, if I could pause for a minute and just state that when we “walk the plank” at obstacle course races, on a 2×4 that is like only a foot off the ground, I fall. The top of that rail in this picture is 7 feet 2 inches above ground level. I measured it. Brandon is 5 feet 10 inches tall. You do the math at how high above ground level he was…

When I went in the house to check on his food that was warming up, Brandon was merrily jumping on the trampoline. It couldn’t have been more than 2-3 minutes when I went back outside to check on him and froze in shock at seeing him standing on that rail…

It’s not like we are slothful parents… I mean for heaven’s sake, we take every precaution we know to take, and can take… We live in a state of financial ruin in providing for his safety, treatment, and care.

The trampoline is enclosed with a net…

There’s a deck around the trampoline with rails in case he should have a seizure and fall while getting on or off the trampoline…

We have non-slip edging on the stairs of the deck to the trampoline…

Padding on the floor of the deck in case he has a seizure and falls…

Not to mention what we’ve done in our house for his safety…

Yet still, with all those things to help protect him from dangers we can think of, we often find him in precarious dangers we never even dreamed of.

Can you but for a moment imagine the unfathomable stress in living like that?

Not only having to try and protect him from dangers you can think of, but having to have a crystal ball to see and prevent dangers that you could never even think of!

Obviously my crystal ball is broken in that respect.

Sigh…

Not one second of him being out of sight can be assumed to be safe. I mean, when I left him he was jumping in a fully enclosed, fully padded trampoline. The next moment he is walking on a tight rope 7 feet in the air with no safety net below…

And it’s not like I could tell him to get down. The slightest agitation or fear in my voice would have startled him enough to slip or fall. So I had to ever quietly and cautiously moved toward him. As I got closer, my only lighthearted moment was in that by the expression on his face, I think even he was thinking this might not have been his brightest idea. He willingly reached for my hand and I essentially lifted him down…

God and his army of Angels were surely working overtime in protecting him that day.
I guess my next purchase is a security camera outside facing the trampoline so I can see if he begins to climb up there again…

Yay, more expenses……

It’s all so unreal.

I wish society, our family, our friends, could get but an inkling of what this life is like. The constant… The ever so constant… I mean, what do we build next? A large net around the deck that extends 20 feet in the air with foam blocks filling the yard should he climb again…. and gawd-forbid, fall?

The stress of what could have happened….

Well, I guess if there is always a silver lining, I could look at it this way…

Next time I share that my son has “autism” and someone asks, “Oh, so what is his gift?” (Think Rainman and how everyone assumes that every “autistic” has an incredible ability that somehow overshadows that fact and makes it magically ok that they are severely affected by that “autism”…), I can answer that his is being fearless.

And that will make him having autism ok…

(Until while standing up there he suddenly has a seizure and falls and dies!)

#AutismLivesHere #AndWithThatUnimaginableStress

Michelle Guppy is an autism advocate, blogger, and mom to Brandon, who has severe regressive autism and seizure disorder. Michelle’s blogs – From Hell to HOPEISM, Life with Autism in Pictures, Where HOPEISM Blooms, 30 Steps in our Shoes, and Journey through the Bible – can all be found here. She has been featured many times in Age Of Autism, and you can read about her over at the Thinking Moms’ Revolution. Michelle is an inspiration to countless families affected by autism.