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

Rascal Flatts - When You Stand

Deafness, Autism, and Hope

I've never really considered myself disabled. Am I? Yes. To make it simple, I'm deaf in both ears. To make it technical, I have a moderate bi-lateral hearing loss. I've worn hearing aids in both ears since I was 3. But I'm not disabled in the sense most people associate it. After all, I can do anything anyone else can do. In fact, most people don't even notice due to how well I can speak. (I spent a couple years in speech therapy for that and man did it pay off!) I don't consider myself disabled because it doesn't stop me from doing anything. It doesn't hold me back. It used to. But not anymore.

Lately there has been a lot of discussion comparing visible and invisible disabilities. So by those terms, I have a visible one, my son has an invisible one.

Are we different? Not really. We see the world very differently than your average non-disabled person. We are prone to suffer the same prejudices that others harbor.  Heck, I've even been fired from a job because I was deaf. (Hopefully he will never experience that...)

We both have issues with sound and touch. This may sound funny to you, especially when you consider that I'm deaf. However, as with Autism, there are varying degrees and grades of deafness. Some deaf people can hear frequencies that others cannot. (Yes FREQUENCY! Low, high, middle, all levels!) It resembles a spectrum if you need to think of a parallel.

As an added bit to blow your  mind... My alarm clock (which sits on the average bed table) vibrates. I "hear" (aka feel) the vibration long before I actually hear the alarm. Crazy isn't it? I can feel vibrations a little better than your average Joe. Just please don't slam any doors around me. :)

I have my own coping devices, just as he has his. And yes, I can get just as overwhelmed. We both HATE crowds. Really for the same reason. He can't process all the information at once and neither can I. Unlike hearing people, I can't filter the sound I hear through my hearing aids. I can't distinguish one thing from another or even figure out which direction it's coming from. It's simply everything, coming in all at one time, at the same volume, regardless of what it is. It is then up to my brain to actually figure out the who, where, and what and make sense of this jumble that is flying into my ears. Sound familiar?

I can't hear the upper frequency. Women's voices are often lost to me, especially if she has a soft or higher pitched voice. It's the same frequency that can send my son flying to the floor crying out in despair. Naturally, it took a long time for me to make that connection. Hard to figure out what you can't hear, right?

My ability to hear definitely affects my day to day life as much as Autism affects his. We both have to cope with a world that doesn't care to accommodate for us. I miss A LOT trying to hear and understand what people are saying. Some people speak way to quietly. Some are on the wrong frequency. I can't understand heavy accents. God help me if someone is talking to me over the phone. I have to actually sit and attempt to process the information really fast and retain it so that maybe, just maybe I will remember it later all by the time they finish speaking. It's the same for my son, but for a different reason.

For the record, this is why my mom goes to EVERYTHING with me (exception well visits and Autism related services visits). She probably doesn't even know this is the reason. But it is. I fear I will miss some critical piece of information or not understand something that is said because I missed a word or three.

Some people do seek to understand how I hear. I do my best to explain. The thing most people don't think of is how other senses are heightened because of the loss of one. I'm VERY sensitive to touch for example. A simple touch or brush can hurt. Tickling is excruciating... When they seek to understand how I struggle to hear, even with the hearing aids I use the crowds example. Sometimes it makes sense, sometimes not. Depends on the ability of the asker to see a little abstractly.

When I think about how it was growing up for me and think about how he's growing up now I can't help but want things to be very different. Thirty years ago disabilities weren't regarded the way they are now. I was ostracized all through elementary school. I was "different." I was misunderstood. I was the kid you didn't acknowledge.  Middle school wasn't a whole lot better but it was there that I was able to form friendships that I still have to this day. It wasn't until I got into high school that I developed the mentality that this is who I am, it's made me who I am, and if you have an issue with it then that is your problem not mine. My whole world view changed. By the time I hit college was was a completely different person. Even now most people do not believe that I was a shy, quiet, hardly-spoke-a-word, hiding in a corner girl. I'm far too outspoken, opinionated, and outgoing to give a hint as to who I used to be.

I want my son's experience to be different.

I was terrified when my son entered Kindergarten. Would those peers be just as cruel? Would they be able to accept him? Would his quirks separate him and keep him from having friends?

I was surprised by the answers.

He was welcomed by his peers with open arms. In fact there were a couple of older kids who tucked my son up under their wing and helped and protected him.  I was thrilled.  I was awed.  I wanted to hug those kids till they cried "uncle!"

Thankfully this has remained the case for him. We did have to change schools after Kindergarten to another school in the district who could provide more support. He was met in that school the same way.  I often hear about how kids tolerate some of his more odd behaviors, his mood swings, and even when he tantrums. They understand that it's just how he is. They don't hold it against him. They remain friendly, social, and helpful.

This gives me hope that things really have changed over the years.  That our innocent NT children are, at least for a little while, unaffected by the biases and prejudices of their parents for long enough that they can see the truth and reality for what it is. And in the process, recognize and accept these kiddos for who they are and what they can do. I just hope this extends into adulthood...

We have one more year before he heads off to middle school for 6th grade (he's in 4th now). I can only hope that through the pains and attitudes that often accompany adolescence, that this trend continues. He will likely end up in a school back on our side of town, away from these kiddos who know him so well.

Maybe we've just been lucky so far, but...

I have hope.