Monday, June 6, 2016

A Candle In A Hurricaine



This post is probably going to come off a bit harsh.  If nothing else, a bit rough.  There is a hard reality to this life, one that often sits in the shadows and no one wants to look behind the curtain to dust the windowsill.

The past year has been a pretty rough one in the AMD household.  Sparky is hitting puberty at this point (he is 13 now) and all of the changes and hormones are making things much more difficult.  He doesn’t understand what is going on and he thinks there is something wrong with him.  Yes, he’s been told by everyone from me to the psychologist to the mobile therapist to the mental health therapist that it’s all normal and he’s ok.  For all he understands, we may as well be talking to the wall.

You feel like a candle in a hurricane
Just like a picture with a broken frame
Alone and helpless
Like you've lost your fight
But you'll be alright, you'll be alright


The past several months have led to a surge in behaviors as he has both regressed and escalated.  His coping skills and ability to manage has regressed.  His behaviors have escalated.  At the moment we are working overtime to keep him safe.  I think the worst of the issues we face is a strong elopement urge.  His need to wander, especially at night.  If you recall he did this years ago, during the daytime, but it was rare.  It’s a more common occurrence now and this time, at night.  He still has absolutely no sense of danger.  How much more frightening can you get? 

'Cause when push comes to shove
You taste what you're made of
You might bend, 'til you break
'Cause it's all you can take
On your knees you look up
Decide you've had enough
You get mad, you get strong
Wipe your hands, shake it off
Then you stand,
Then you stand


I always took for granted that the house alarm would work so well to keep him in the house.  That was quickly erased when he made the connection between the key fob on my keys and the house alarm.  About two weeks ago, just as I was falling asleep, I heard the door open.  He used the fob to disarm the system and go right out the back door.  Being deaf I never actually heard the crazy loud beep of the system disarming (but it must have roused me subconsciously enough to hear the door).  I don’t even want to think of what would have happened had I not woken up.  We live in an area where we are surrounded by main roads.  He could have been gone in no time.

Life's like a novel
With the end ripped out
The edge of a canyon
With only one way down
Take what you're given before it's gone
And start holding on, keep holding on

It doesn’t end there.  Naturally.  Why would it?  His mood is no longer stable.  We can’t seem to find a good balance anymore.  He’s been depressed, aggressive, and self-injurious.  I ended up finding him a new psychologist just two months ago.  Around that same time we added in Family Based Mental Health Services (the most intensive services you can get).  We adjusted his medications.  Everything feels like a waiting game anymore.  We are now looking at taking him to one of the major hospitals a couple hours away to have him evaluated by the psychologists there (Cleveland, maybe Pittsburgh) and see what they can do.  I don’t seem to be catching a break and it doesn’t look like it’s going to happen any time soon.

'Cause when push comes to shove
You taste what you're made of
You might bend 'til you break
'Cause it's all you can take
On your knees you look up
Decide you've had enough
You get mad, you get strong
Wipe your hands, shake it off
Then you stand,
Yeah, then you stand

I now live in this constant state of fear.  I lock up the keys when I go to bed.  I sleep lighter than a feather.  Every night it’s the same routine:  Goodnight, I love you, Stay safe, No shenanigans, Stay in bed, Right to sleep, DO NOT LEAVE THE HOUSE.  Being so disadvantaged I am terrified he’ll find a way out and I won’t hear him.  By the time I discover it, it will be far too late.  I thought I knew was sheer exhaustion was.  I was totally wrong.  I sleep all day when he’s at school.  I can’t concentrate.  My migraines are sheer at peak level “Hell.”  To say I’m stressed is probably the understatement of the century.

Every time you get up
And get back in the race
One more small piece of you
Starts to fall into place
Oh

All I can do is keep pushing, keep moving.  Just pick myself up, dust myself, and keep going.  I’ve been fighting for so long I can’t possibly stop now.  There are days, I won’t lie.  So.  Many.  Days.  Where I just want to throw my hands in the air and give up.  I’m so worn down, so frustrated, so exhausted, so defeated.  I cry more now than I think I ever have, I actually cry daily, and it doesn’t take much to start the flow.  I often feel like I’m riding an emotional roller coaster to hell and back again.  Then every morning, when I wake up and he’s safely in his bed still, I feel better.  I breathe a little easier.  I put on my happy face mask and thank God for keeping us through another night. 

Yeah, then you stand,
Yeah, yeah, baby
Woo hoo, woo hoo, woo hoo

Then you stand, yeah, yeah

1 comment:

  1. Wow.........I came here because I briefly met a single mother who has a severely autistic 5yo boy and two other children. I was only with her for 2 hours but it looked exhausting and I really felt sorry for her and grateful for myself.........I know thats terrible. I can't imagine what life is like for you but my heart goes out to you. I hope you have some family or other social support because you need it! Congrats mama. You are a champ....

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