Life with Autism

Tuesday, April 30, 2013


I see the word fearless and I think that's how I want to live as a person and as a Christian.  I want to not be in fear of dreaming, daring, and doing -- as the "NDCQ" motto boasts of.  I want a fearless faith that goes where no faith has gone before.  I want a reckless abandon for Christ.  Pursuing him at all cost.

But autism, particularly my adult son who is severely affected by autism - and the word fearless have no business being in the same sentence, let alone traits that make up my son.

I've searched and searched for words to try and convey what seizures have been like in our adult son.  Words to convey how each moment of his waking hours are lived in fear that he'll have a seizure during one of his fearless moments as this picture describes better than my words ever could.  Moments of him going up or down the stairs, climbing on the platform to get in the trampoline, climbing on the counter when I'm not looking.

Brandon is an adult who has no sense of fear.  He's fearless.  He doesn't understand that he needs to not run or climb or jump when having seizures.  He doesn't understand what can happen.  What has happened numerous times in sending him to the Emergency Room for stitches, staples, and shattered teeth.

In this picture, when I left Brandon to go in the back yard to put away the garden hose he was in front of the television humming to Barney.  In the barely three minutes I was gone he went from that, to what you see in the picture.
What would have happened if in the blink of an eye that it takes for a seizure to hit and knock him out, he had a seizure and fell from that height standing on the kitchen counter onto a tile floor?

That's "Life with Autism" --- in Pictures.

That's an autism fact you don't see.  Don't read about.  How do you childproof a house for an adult?  How do you go about your daily life knowing you can't let your son out of your sight for even a minute.  Well forget a minute, it probably only took him thirty seconds to go from the television to being on that counter.  

Ten seconds in  tub with a seizure they can drown.  Thirty seconds and they can dart from the car to the busy intersection and get hit by traffic.  One minute they have scaled a fence and wandered off.
Imagine having to live your whole life with that kind of fear -- as many of us parents must do.

Without any help.

Without anyone saying, "I'll come over for an hour each night just so you can go for a walk or go out back and eat in peace....  Just so you don't have to be on guard for that hour...."

My husband and I have lived the last three years of this past seizure-cycle like that, and you just can't imagine what that was like.

The toll that takes.

It is unfathomable how much faith we must have in God's provision and protection over our son.  In how deeply and completely we have had to surrender to him in prayer, for peace.  To survive.  In how fearlessly we've had to let go of guilt and worry if something happens during those few seconds, those few minutes that we're out of arms reach of him. 

Even now, as of this writing, my son is almost one month seizure-free.  I still haven't been able to relax.  My body is still on hyper-alert with each sound, with each trip up or down the stairs, and with each whatever it is he tries to climb on when we're not looking.

The only place where autism, and seizures, and my son Brandon have any business being together, is on the moon.

Where there is no gravity.

No comments:

Post a Comment

Note: Only a member of this blog may post a comment.