Life with Autism

Tuesday, April 30, 2013

Fearless

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.

Monday, April 29, 2013

Restoration

It's fitting that this is the first entry in this blog - on this eve of the end of yet another dismal Autism Awareness Month.  Dismal in the fact that other than a few cute pictures posted and all too familiar famous quotes and statistics and facts shared --- nothing much has changed.  May 1st will come around and still my e-mail will be full of questions from parents who the medical center has referred to me.

But for me there is almost a guilty feeling -- in that this April, this glorious April, my son has been seizure-free since April 5th.

These pictures and that ending video -- they are what April is to be about.  Taking a very sick child as mine is in the picture below, helping their parent find a physician to partner with -  who as I've shared in my "Life with Autism" blog is IN IT TO WIN IT -  and then basking in the blessing of healing.  Slow, sure, steady healing.

Healing that who knows -- maybe one day will lead to total recovery.

Yet sadly, at the rate April is failing for so many, as it has for me until this year, far too few will ever have the opportunity I had in finding an autism doctor who knows what they are doing.  A physician who can take the oxygen mask off of a child who has autism, and get them to where they are 
free to run.

When every parent can bask in that - then -  and only then -  will April have something to celebrate.

Thank you J.B. -- this post is dedicated to you.



This is my son Brandon during one of too many visits to the Emergency Room for cluster Grand Mal seizures that took so much out of him that he would lay in bed for up to three days at a time, not eating or drinking.  Necessitating we go to the Emergency Room for fluids, and in this case, oxygen too, as he was so very weak.

 

I had the idea one day, I can't remember what inspired it, but I wanted to write scriptures all over Brandon's bedroom walls.  I wanted him surrounded by God's word and the scriptures that so very many had been praying over Brandon.  This one below from my friend Tonya Frye is especially poignant to me.  So very many years, months, weeks, days, have been lost due to seizures.  And this promise, this promise below conveyed the HOPEISM we hung on to for Brandon.  For our prayers to be answered, for us to find a physician who both would and could help us.  And it also portrays the video at the end of this post. 

 

Indeed God has begun that restoration process.  Brandon has been seizure-free since April 5th and for the first time in a very long time, he has been strong enough to run.  Really run.  The therapists at Brandon's school recorded the below, the ending to numerous laps run around their little track.

Click here to watch video


video

~ ~ ~

We know that we have a long way to go.
We know there may be setbacks.
We know that for the severity of Brandon's autism, there may not be full recovery.

But we also know this...

HOPEISM