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

Lost, Again...

     It was a typical Sunday afternoon.  Laundry was in progress, Sparky was playing with his Legos, and the cats were snoozing.  I was printing some pictures for a project I needed on Monday.  Ok, a lot of pictures.  So naturally I ran out of ink.  I debated for a little while whether or not I really, really wanted to make a run to WalMart on a nice Sunday afternoon when there would no doubt be lots of people out.  In the end, the trip won out as I really did need to finish the project up.
     So I packed up Sparky and off we went.  He was slightly disgruntled over being disrupted from his Legos but he gets over things quickly and by the time we got there he was over it.  I made my way over to the electronics section so I could get the ink I needed.  I let go of him (I always hold his hand for safety's sake when we are out but my cast really limits my ability here) and picked up the ink.  We went on our way and I told him we were going to stop to get some sheet protectors.  I looked from him and looked down the aisle I thought was correct and looked back.
    He was gone.  Just like that.  A blink and gone.  I looked around.  I checked up and down several aisles.  How could a 4 foot 9 inch, 12 year old in a red coat disappear that quick?!?!?  I could call his phone! Shit.... It's in my purse.  The ONE time it isn't in his pocket is the one time he disappears.  Fuck.....  Now what?  I keep looking.  I check the games knowing he usually likes checking those out.  Nope.  Too much time is passing....
     Too much time.....
     I spot a group of about six employees gathered around the sewing desk.  I stop and ask them if they've seen a 12 year old boy in a red coat come by.  Blank stares....  One asked me what he looked like and I grabbed my phone to pull up a photo of him in his coat (thank god I take so many pictures!!!) and another asks if I want her to call him over to the desk.  I looked at her dead in the face and said, "He's a 12 year old Autistic.  He won't know what this desk is or how to find it."
     I was met with six panicked faces.  I faltered.
     I show the one employee his photo and she calls out on the radio.  Another asks if I want to call a Code Adam.  "Umm... Well... I don't know that it's necessary...." (MORON!!! Why wouldn't I say YES! Always say YES folks! ALWAYS!)
     While I fumble more time ticks away.  "Call it." (Why would I even debate that?!?!?!)
     Just as she had the phone in her hand and was about to call it I hear myself being paged over the PA system to report to the service desk.  He's been found!
     I take off straight to the desk and find him there, cool as a cucumber with an employee and a lady and her husband.  She started telling me how thrilled she was that they were able to get him to me and told me how well he did.  She said he walked up to her and said, "I think I'm lost and need help."  She and her husband immediately walked him to the service desk so I could be paged.  I thanked her far too many times and the kiddo gave her a hug.  She kept saying he did very well and she was just glad to get him back to me.  Sparky told me he was very proud of himself because he saved himself.  Yes, buddy.  Yes you did...
     I tucked his hand under my arm and we went on our way.  It wasn't long before the whole thing hit me and I was fighting back major tears.  Again.  This happened again.  I thought we were past major things like elopements and random wanderings.  His separation anxiety was always enough to keep him in check and keep him close by.  This time I managed to ward off the worst case scenarios that threatened to take over my mind.
     I can't even tell you how proud I am of him.  If you would have asked me if he would have known what to do in that situation I would have been skeptical enough to tell you no.  He usually panics if he can't see me and we are in the same aisle.  How could he know what to do if he discovered he wasn't in the same aisle?  Or even the next aisle over?  When push came to shove this kiddo kept his cool and found help further proving that he is full of marvelous surprises.

      I learned a lot from this and was fueled a little to anger as well.  Things I learned?  Always go with the Code Adam.  While not enough time passed for him to have gotten out of the store by the time the employee was going to call it, you just never know.  You just don't.  I was fortunate enough that Sparky approached a couple of respectable folks and not someone shady for help.  (I have always said he was a great judge of character, yay Sparky!)  Also, always put his phone in his pocket.  I did buy the damn thing to be able to track his whereabouts and make sure he can reach me.  Anything can happen at any time.  Even in the store.  A minor oversight could have had major consequences. 
      Why was I angry?  Because society doesn't really give me a great way of keeping him with me.  To make things worse, I was limited in what I could do because of my cast.  I really only had one hand to work with.  It's not like I could tie a tether to him to make sure he stays with me.  (This totally reminds me of the great bathroom debate with taking older boys into the women's restroom.)  I'd be crucified by people for daring to "leash" my son.  Just look at what happens when parents put those tethers on their typical toddlers!  He's too big to stick in a cart.  So really, what do I do?  Even when I have two working hands on my side it is difficult to keep him with me.  Not because I'm negligent in anyway, but because wandering kids literally can disappear in the blink of an eye.  You don't realize that it's the case until it happens to you.  Until then, it seems impossible.
      But, reality is reality, and this is my reality.  Wandering happens for many reasons: curiosity about something they see, distraction, zoning out, the list goes on.  While I may never know the reason why he wandered off, I will continue to be amazed at the speed of it.  Even the most prepared among us can be caught unprepared.

Elopement: Tools and Resources to Prepare

With summer soon to be upon us again I wanted to take a moment to be serious.  Weird, right? ;)

No one really wants to think about the possibility of losing their child through wandering or otherwise but it is a reality that many of us face.  With this in mind I wanted to give you a couple of quick resources that I found to help you get started in case of an emergency.  Many of you know my son wandered off 4 years ago now and we were very fortunate that he was found safely.  (You can read my posts about it here and here.)

First and foremost, I would highly encourage you to set up a meeting with your local law enforcement and local Fire/EMS departments as well.  It would be very beneficial for your child to meet and become familiar with their faces and uniforms and for the First Responders to be familiar with your child in the even of any emergency (accident, fire, etc.).  Children can be intimidated by them so it is crucial that they understand they are there to help!

If you need some assistance in that area please check out what Jerry, a New Jersey Police Officer and father of an Autistic boy, has to say.  You can see his page here and his blog here.  He wrote two amazing posts about wandering and police contact that you simply must see that he wrote for Autism After 16.

Surviving the Wandering Nightmare

Well-Informed is Well-Armed: Easing Police Response to Domestic Incidents

AWAARE has many awesome tools and is loaded with information to help families and first responders.  You can access their website here.  They do have the Big Red Toolbox but they have digital tool boxes as well.  I would definitely check out their Wandering Brochure for information about wandering and tips you can use to prevent wandering and to prevent a tragedy in case wandering does occur.  You can access the brochure here.

To help you stay organized in your planning you can use the Caregiver Checklist here.

The first one I want to toss out there is a Family Wandering Emergency Plan.  It can be used for any family member who may wander off.  It helps you prepare ahead of time in case your child wanders off so that you know what to do.  It allows you to come up with search areas and people to search those areas, emergency phone numbers, what to provide when you call 911, and it gives you other numbers such as NCMEC.

This form can be found here.

The second form is for you to give first responders and is an Autism Elopement Alert form.  This form is used by those first responders to give them identifying information, a photo, and areas where your child may be found.  It includes medical diagnosis, medications, if they are verbal or non-verbal, their preferred method of communication, etc.  This form will help pull much needed information together in one spot to aide in helping your child be found quickly.  Take this form when you go to meet them!

This form can be found here.

You can find all of their safety materials including the toolbkits for Caregivers and First Responders here.

In speaking from experience, please be prepared!!

**Editor's note: This is meant to get you started.  Please talk to your local Autism groups and First Responders to get additional safety and preparedness tips and resources for your child.**

The Day I Lost Him

With all the influx of news of wandering and the abuse the Lynch family is receiving over their precious baby, I can't help but get upset.

Don't judge unless you know. Don't judge unless you've been there. Quit telling Neil Armstrong what it's like to be on the moon.

Ok. Maybe you don't know Mr. Armstrong but it is essentially what is happening.

These kiddos make professional escape artists look like amateurs.

My son wanders. He has along history of elopement from the time he was 2 and could walk off. He knows no fear. He loves water and we happen to live next to a rather giant body of it up here in the northeast corner of the country. So close, in fact, I could throw a rock into one of the Great Lakes. He knows how to swim. He attended the local YMCA for 8 years. His Autistic Support class at school also goes swimming once a week during the year. It's not fool proof, but it's a step in the right direction.

Two years ago, I lost him. Heck, all 5 of us in the house lost him and 3 of them were fireman. We were out in my sister's neck of the woods at her friend's house while sis's husband and the friend's hubby looked at my SUV. My sister, her friend FFK (who was pregnant at the time), me and our collective troop of kiddos hung out in the house. A and I had never been there before, but knew the people who lived there (FFK and her hubby FFM) We were there for a couple of hours without incident.

We were huddled around the kitchen island (the kitchen was an open space with the dining room and living room) while the kids all played in the living room just a couple of feet away. A has always had a love/hate relationship with my nephew Z. It goes way back to when Z was little (he is 2 years younger than A) and how he has ADHD and always wanted to play (he was a bit too intense for A) and A very much wanted to be left be. Naturally.

Some type of altercation happened between A and Z and both got yelled at by me. One was put on one couch, the other was put on another couch, and time out ensued. A was seething. At this point I don't recall what happened or why he was mad. But the kiddo was very upset (part of the reason for the time out, to help him calm down).

Then it happened. No warning. No sound. It just happened. I blinked and he disappeared. My sister said something to me, I turned to answer, when I turned back just a few seconds later, he was missing. I figured he went to the bathroom or went to another room to get away from Z. A quick bathroom check... No. So we check the room downstairs... No. Garage... No. Well, crap... We go outside.

He's nowhere to be seen. We had been calling his name but he is not answering (he was capable).

5 minutes....

We check the pool. We check the house again, around furniture, closets, under the couch (seriously, you'd be surprised where they'll squeeze into), the bedrooms. Nothing. I go back outside while FFK continues to search the house. My sister joins me shortly after. (FFM and BIL- also a FF- are out in my car test driving it). We walk around the house and check the neighbor's yards, calling his name. Nothing.

10  minutes....

Panic sets in. Where is my son? Why won't he answer? How far could he have traveled? I can see across the fields surrounding the house and I see nothing. The forests (we were in the countryside) are beyond the fields on each side. A major roadway is off to the north. Could he have made it to the woods that quickly? Could someone have picked him up off the road that soon? I start walking. I'm screaming his name...

15 minutes....

Still nothing. FFK is still searching the house. Since she's pregnant she got left to mind the house and kids and watch to see if he comes back. She keeps searching the house. My sister is traveling in the opposite direction of me. She spots her husband on the roadway but can't reach him, he's too far and cell service is bad in the area. Should I call the police? Will they think I'm a bad mother? Where is my son? Why did he run away from me? Could he have made it to the woods? What if he get's hurt? What if we can't find him? He'll never survive the night alone...

20 minutes...

I'm in a full panic. I get a text message out to M. He can't get to me but asks me to keep him posted. Grandma has been called (I don't remember by who). She's out of town so she can't help. I'm still screaming my son's name. Walking across the field towards a baseball field. Is he hiding in the dugout? Why won't he answer? Where is he? Why? Why? Why?

25 minutes...

M asks for an update. Still nothing. I'm still walking. Screaming. Now I'm crying. Should I call the police? Search and rescue? What if they say I'm a bad mother? What if they take him away from me? I'm with the very firemen who would search for him... If BIL wants to bring in reinforcements, ok. I love my son! I am a good mother! Why did he run off on me?

30 minutes...

I'm crying. I'm hoarse. I can barely get his name across my lips. I'm still walking. Still searching. Sobbing. Where can he be? Is he in the woods? Why won't he answer? Did someone take him? He'll never survive the night.... My mind is racing with grotesque images and every worst case scenario... Wolves.... Bears... Creeks.... Strangers....

35 minutes...

M messages me again. Do I need him? He's still delayed. Sis gets BIL. BIL and FFM start driving around the roadways looking for him, they hadn't seen him yet. FFK says he's still not around the house. Another friend joins the search and goes another direction. I can barely yell his name. Grief has taken over. Am I a bad mother? No! Stop thinking that!

40 minutes...

I can barely move. I can't see through my tears. I'm still walking... I'm on the verge of becoming a useless heap in someone's field. Where is my son? Why can't we find him? BIL doesn't see him on the roads. They keep looking. He'll never survive the night... Will they take my son away? Why did he do this? Why did he run? Where is he? Why can't I find him?

45 minutes...

I'm in the field. I can't move. I can't see. I could have been crawling at that point for all I know. Panic and grief have completely taken over... I'm lost. I feel hopeless. I feel like he's gone...

Suddenly I hear my name. The friend who joined the search is running towards me with the house phone. He's yelling. Running full speed to me.

They found him.

Words cannot describe how I felt. Where did they find him? Is he ok? Why did he do it?

I flew back to the house... I was completely overcome with a mix of relief, joy, and (I admit) anger.

Sheer luck brought him back to me. Yes, I said it, LUCK. FFK found him when she caught him sneaking back into the house.

I hugged him. I hugged the stuffing out of that kid. I'm pretty sure I hugged him so tight his eyes were threatening to pop out of his head. I cried some more. I asked him why he didn't answer me, why he didn't respond when he heard his name. I was angry. I was upset. I was hurt. He sat there, mute, unanswering. He didn't know why. Or at least (as I understand now) he had no way to tell me. He knew what he did. You could see it in his eyes. He kept saying he was sorry. He cried.

He was within 2 steps of me for the next 2 hours until we left. He had to remain within eyesight of me. Two.Steps.Away at most. This did mean he spent a considerable portion of his afternoon sitting on the garage floor.

Two years later, I know. I understand. He was mad. He was upset. He wanted to get away from being upset. So he walked off. He was taking a break in his mind. Escaping.

You think it won't happen to you, but then it does. We no longer have time outs. We now have time ins. If you don't know what that is, it's the exact opposite of a time out. Instead of him going to a corner or couch, he sits right next to me. Literally. Until I say he can go, he's stuck hip to hip with me. Time outs are too dangerous now.

To this day he still wanders but nothing like that day. I am lucky in that. Grateful even. He is now afraid of losing me (not sure why but I'm not going to argue the result). He now keeps me within eyesight. 

Locks have been installed (see previous post here) and continuous measures have been taken. I am constantly adjusting as he ages and gets bigger, more independent in ability and thinking. I honestly don't know what I will do when he's bigger than me and older. What will I do when I can no longer force him to hold my hand? I can't harness him. He won't fit into a stroller. I dread those days to come.

The fear remains. It's ever constant. I am hyper-vigilant. I have to be. I became the helicopter parent I never thought I'd have to be. The fear never leaves me. The store. School. Grandma's house. M's house. Aunt's house. It.Never.Leaves.

I will do what I need to in order to keep my precious baby safe.

Rest in peace Mikaela Lynch, Owen Black, Andrew Howell, and Freddie Williams. Angels taken from us far too soon.

Big Red Safety Box
Project Lifesaver
Autism Wandering and Elopement Initiative