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

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

Friday, July 24, 2015

Why Do I Run?

There are so many reasons why people run.  I could spend all day just looking them up and determining that each one is valid.  I also run for many reasons.  I've been a runner my whole life and I absolutely love it.  I run several times a week.  It brings me peace of mind and always gives my mood such a huge boost.  Basically, running is my sanity.

This morning I was running in the park by the beach and there's a big celebratory weekend to promote awareness of the area and it's preservation.  Not really recalling that it was this weekend I went there instead of my other running location, a trail in the woods.  About 3 miles or so into my run some rude girl who was obviously a casual rider made some rather derogatory comments to her friends about my face and running in general.  This really set me off.  I mean, just the sheer rudeness of it.  If you are going say nasty things about people, at least say it out of earshot, you know?  It also did not escape my notice that I was a third of her size.  I have also become acutely aware of all the glares I get from heavier moms of special needs kiddos when I pick up or drop off my son to camp.

After venting about the girl today on my personal FaceBook page a friend made the comment that women in general are just nasty to each other.  She recalled a friend who ended their friendship after she lost a lot of baby weight years after the birth of her daughter.  It was only then that my friend realized that she was smaller than this ex-friend.  She made a great point in that some people equate trying to be healthy with selfish parenting.

While I realize I am lean and in excellent shape, I fail to see how this equates to selfish parenting.  When did having a child who needs extra care give the excuse to let ourselves go?  How does it give us permission to sit on the couch and eat poorly day in and day out?  How does this make it acceptable or somehow forgivable to stop caring for ourselves?  As far as I'm concerned, there is nothing selfish about what I do.  It has nothing to do with looking good or wearing a bikini and everything to do with my health.

I figure, if I have a child with special needs, I better plan to be around for a very, very long time!  I mean, jeez oh Pete! Have you seen the current system for disabled adults?  My health cannot be an added stressor to my day nor can I allow it to be a looming threat.  The only way I can ensure that, is by running and being healthy.  I often joke that I'm not training to be skinny, I'm training to be a fit bad-ass.  Well, it's true!

As an added bonus, since my son is very aware, he can see that his mother exercises and eats well and spends her time with people who support that.  In turn that sets a good example for him and he is more likely to follow that lead.  He also knows that his mother cares enough to be around for him for a very long time.  How is that selfish or bad?

My son being able to tell someone, "My mom runs because she loves me," is the best thing I could ask for.

So I guess in a way, I am a selfish parent.  I'm selfish enough to look out for my well-being for the sake of my son.  If I don't take care of me, how can I take care of him?

*Editor's note: I am not intending to bash anyone for their lifestyle.  To each their own.  I do not take issue with what people choose to do, only with how they treat me for my choices.  There is a double standard that exists and is total bullshit. While I know many suffer health issues, none are capable of preventing even basic healthy living.  Research proves this. I've alleviated many health related issues that could have left me couch bound.*

Sunday, May 10, 2015

Single Motherhood

Today is Mother's Day as we all know.  For some reason, this year I'm feeling particularly emotional about it.  As you all know I'm a single mom.  As in, a single mom by true definition. (Someone who raises her child entirely on her own, dad is non-existent: aka, single parenthood.)  It certainly hasn't been easy but it definitely has been rewarding.

I've had to fight for everything over the years.  Society is not kind to women in general and it is even more unkind to single mothers.  Single mothers with special needs children? Forget it!!  We are invisible to the world.  My son is only seen because I scream. A. Lot.  If I didn't, he'd be lost in the shuffle: no insurance, no services, and no where near where he is today.  He would still be a non-verbal, increasingly aggressive child.

I had to fight my way through college for my BA in Arts, then more recently for my MEd in Special Education.  I had to fight for every job I had and then fight to keep it.  As a single mom I can't just call dad in to help.  I am my own reinforcements.  I have to do it all on my own.  The kiddo gets sick at school?  It's me leaving work to pick him up.  As a woman I get paid less.  Imagine trying to pay your bills on a single, small income.  Getting a second job was a thought but never a reality.  Why?  Because when you have a special needs child, you just can't do it.  Someone has to fight for services.  Someone has to do the leg work.  Someone has to be home to care for him.  There is no tag team to happen here.  Once again, I'm left on my own. 

I would think that dating when you have typical children is hard enough.  But dating when you have a child with the complex needs that our kiddos have?  It's laughable.  With how special needs families split at such a high rate, how can our dating lives be successful?  The more care your child requires, the less time you have to focus on anything else.  Hell, you don't even have time to spend on yourself...  The balance is a hard one to find and keep.  Someone to watch the kiddo?  Can you hear me laughing yet?  On the upside, less than quality guys get weeded out reeeeeeallly quick. ;)

I make just over the limit for welfare.  Due to a loophole, a freaking LOOPHOLE, my son kept health insurance.  I often go without, making any doctor's appointments out of pocket expenses for me.  I didn't even qualify for the recent Obamacare stuff.  I made too little for it but too much for Medicaid.  I was even fined for it on my taxes this year.  Money I could have used to pay for my medical costs or care of my son, the IRS took as a fine...  Once again, we fell in the cracks.

There's a huge societal stigma on single motherhood still.  If my son does something unexpected or "wrong" then I'm to blame. Society blames it on the fact that he's being raised by a single mom.  Surely I can't raise him properly. (/snark)  They even blame me for his list of diagnosis.  (Yes, this crap seriously exists.) The attitudes I get from people are mind-boggling.

Fight. Fight. Fight. Fight. Fight.  That's all I do.  I fight for his rights.  I fight for my rights.  I fight against the stigma of being a single mom.  I fight for our ability to just live.

But you know what?

I wouldn't change a damn thing about it.  Nothing.

I love being a single mom.  It has taught us the real value of things in life.  We appreciate what little we have.  We appreciate our time together.  We actually SPEND time together.  We don't care about money or trinkets or the latest and greatest vacation.  We appreciate the beach just a mile from our house.  We appreciate the parks we can visit.  We appreciate visiting family and friends and just hanging out.  We have a love for life and the ability to actually enjoy it.  For us, the little things do matter.  (And hell, I don't even have to argue with anyone else about what I do with him or where I take him! BONUS! ;) Haha!)

For me, everything is two-fold.  Yes, the bad is as well but really I focus on the good.  Every achievement feels twice as good.  Every battle won is cause for celebration.  Every goal we surpass is defining. 

My son understands the value of love.  What it means to love someone.  Truly love.  And he is joyous, caring, nurturing, and frankly one of the best souls out there.  You won't see this child talk back to me.  You won't see him order me around.  You won't see him disrespect me or anyone else.  Something I see and am the recipient of on a daily basis as a teacher...  This is one of the best reflections you can have on you as a parent: a respectful, caring child.

Despite all of society's ignorance, this single mom (and many like me) are doing one hell of a bang up job raising beautiful children who will become amazing adults.  We defy the odds.  We are strong women who will never give up on making our children's dreams come true.  Society gives us barriers with a broken system stacked against us.  We don't take "no" for an answer.

We push through.  Here's to all the single moms (and dads!!) out there keeping up the good fight!

Friday, April 3, 2015

The Daily Image Struggle

I want to take a minute and deviate from the normal stuff I write about.  It's still relevant, since it's about being a mom, so don't worry. ;)

Every year about this time I start thinking about summer.  Since we live right off of one of the Great Lakes our whole summer revolves around water in some way.  The kiddo's love of swimming just feeds that.  I decided I would start trying to get into shape earlier since I spend a considerable amount of time on the sailboat and racing and if I start late, it's a rough season.  I have to keep up with the physical demands of it.  If you've been around you know I'm particularly fond of running.  Well, with the spring we are having, it just hasn't been warm enough.  So instead I pulled out some old stuff like this 30 day challenge thing I have (I'm on day 12) and some cardio ballroom type stuff (day 3).  My co-teacher is taking a different route, despite her middle age: crash diets and eating very little.  It makes me cringe.  What's my point?  I'm getting there. I promise.

I'm one of those people who tracks how I look.  Am I toning up?  How's my strength?  Is my asthma in control?  Is this even making a difference?  Is this worth the pain and effort of what I'm doing?  I'm lazy in the winter and while I don't fatten up per se, I lose a bit of definition.

So this morning as I stood in front of the bathroom mirror taking a picture to add to the others and thinking about how pleased I was with how I look right now, I started thinking about where this even came from.  I certainly wasn't like this in high school.  It hit me that I've had body issues my whole adult life.  Someone told me my freshman year at college that I was a hot commodity and that all the guys wanted to pursue me.  I laughed.  LAUGHED.  Why would they?  I've never thought I was anything special or particularly beautiful or anything.  They laughed back.  Then others told me the same.

And it began...  To stay "skinny" I would survive off of iced tea and pierogies for weeks.  I would eat so few calories I honestly wonder now how the hell I survived that.  It was easier to not eat than to try and work out enough.  No one did anything, no one even noticed.

My pregnancy with my son ended that much.  Suddenly I had to eat.  After I had him he was so hungry he sucked the weight right out of me.  I was constantly burning the calories to feed him.  Then he weaned.  Then it began again but in a different way.  Suddenly my imperfections weren't about weight.  It was about the stretched out tummy and seemingly permanent baby pooch (and when you are as petite as I am it is quite noticeable).  I felt like a kangaroo.  Despite what is a very teeny waist, that was enough to mess it all up for me mentally.

While still in college, and after having my son, I took a nutrition class.  Part of the class was to track our diets for a period of time and take it to the resident dietician.  She threw up red flags right away over where I was getting my calories from (mostly juices).  I still didn't eat much.  I blamed it on being in college with a child to feed, I was making sure he had enough.  (Poor excuse, I know...)

For 12 years it's been a struggle.  What I was told in college I have now heard throughout my adult life.  I've lived this love/hate relationship with my body over what should be easy to be ok with.  Sometimes I'm able to convince myself that it's all ok because this body nurtured and gave me this amazing and healthy kiddo.  You would think it would be enough.  But when you spend most of your life having your worth tied to how you look it creates this complex in your mind.

In a world where people have put so much focus on how others look (especially women) it's a small wonder I'm still struggling.  Just look at the magazine covers.  It's awful being constantly bombarded with ways to get the "perfect, tight body."  Even in college one of the sororities had the "Sexy Six" and from what I was told, it was a fierce fight to get that honor.  The other sisters would take a marker to you and mark everything you had to correct.  You also had to fit a certain standard to even get in.  Wow....  Some dating websites are even that way.  The value is put in numbers as opposed to fitness.  The value is in appearances as opposed to healthy.

What makes it even worse is that I get hit from two sides.  I get hit from the "You're too fat" side because of my post baby body.  But I also get hit from the "You're too skinny, eat a cheeseburger" side because I have a tiny 26 inch waist.  Every time I go out someone glares at me.  Even at the grocery store.  Can you imagine what the beach feels like in my bikini?  Some days I want to eat burgers and bon bons to get rid of the "skinny" attackers and other days I want to starve myself to get rid of the "fat" attackers.  I have grown very weary of this two sided attack.

Can you see what this can do to someone?  What a messed up, convoluted world we live in...

I now try to spend my time telling myself that I'm going to be healthy for me and my kiddo.  I surround myself with people who put value where it belongs.  Some days this is easier than others because the attackers can still get in.  I just try to hold firm and remind myself of what matters: being here for Sparky.  Staying healthy (including my diet) and moving and hopefully, that will encourage him as well.  After all, who else really matters?  I just have to keep my confidence up and remember to love myself.  So if you are like me and struggling for similar reasons (with either attack) just remind yourself that you have healthy happy children, and it was your amazing body that did it for you.  Half the battle with body image is confidence.  Each mark on our body is part of our story, regardless of our gender and whether they are from pregnancy or not, and it's up to us to embrace that.

Tuesday, March 31, 2015

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.

Thursday, March 19, 2015

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.

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.**

Tuesday, January 27, 2015

Acute Partial: The Note, the School, the Heartbreak, the New Fears

This is one of those times when I have so much to say but I have no idea where exactly to begin.  That's probably why it has taken me so long to sit down and start writing this post to update you all on why my page has been so quiet.

You have all heard me in the past talk about how Sparky has had some aggressive behaviors, both towards others and himself.  You've heard me talk about our struggles to find the right medications that will help him not harm him.  You've heard me talk about SIBs so severe he was bleeding daily.

For the most part we did get a handle on those things.  Over the summer we saw very little of anything of concern.  Then 6th grade started.  Middle school.  The whole world just went upside down....

Towards the end of October I showed up for what I thought would be a routine, run-of-the-mill, IEP meeting.  The kiddo was really struggling in school so I wanted to address several things, including homework and his placement.  As usual, I had already expressed my concerns to the school so they were already coming up with ideas.  In an interesting twist, my mom was going to attend her first IEP meeting ever with me, just to see what it was all about.  As my mom usually is, she was running late but not by much so we went ahead and started the meeting.

Before anything was said, anything was addressed, anything was even handed out, I was told that something happened that day that they thought I should be aware of.  They then slipped a piece of paper across the table to me.  It was a step by step written plan outlining (somewhat vaguely mind you) how to get rid of homework.  The note talked about harming the principal as a final step.


They didn't want to address it until after the meeting so the IEP meeting went on.  I showed my mom the note when she arrived and everyone re-introduced themselves for her benefit.  The principal, not surprisingly, I feel made a total ass of himself and showed me how little he knew about these kiddos in the shortest amount of time I've EVER seen.  First impressions ARE everything!

A major concern for me was homework.  I can't spend over two hours a night trying to fight him through it. I refuse.  It does nothing to help him learn and makes our home life downright miserable.  When talking about that the principal chimed in saying that it should never take a student more than two hours to complete homework.  Ever.  I said that is all well and good for typical children, but that isn't the case with children like mine.  We have other things going on at home: therapy, breakdowns from the school day, chores, etc.  We deal with a lot of behavior because that's where the kiddos feel comfy and fall apart.  He went off on a tangent, repeating himself, that it should not take more than half an hour for ANY child to complete homework.  There isn't ANY reason for that to happen.

I nearly went across the table... Thank you so much for showing me HOW LITTLE you know.  Really, I appreciate it.  This will help me later in the meeting.  I promise.

Moving on.  The teachers, recognizing and knowing just a wee bit more than he did, made the adjustment that since homework really wasn't worth a lot of points anyway (just two) and it would not affect his overall grade if he never did it, said that as long as he attempted it they would allow it, just let them know.  They all told me to not spend a lot of time on it because they didn't want him to stress about it too much, especially since he was already struggling.

If I haven't mentioned it yet, I love his teachers.  Moving on.

We finally get to the end of the meeting.  The one time in my life that I would have been arrested if my mama wasn't there holding me back....

Non-essential people were allowed to leave (like the reg ed teacher).  So it was me, my mother, the AS teacher, school psych sub (school psych literally just went on leave), the principal, and my son's behavioral specialist.

Cue "Jaws" music. No joke.

The principal wanted to see my son so he was called in and was seated across the table from him.  The principal, in the nastiest most asshole tone I've EVER heard used with any student asked my son what that note was all about.  My son simply said that he was upset over homework because it was too hard and he didn't want to do it.  The principal, in the same nasty tone (seriously, who the fuck uses a nasty, condescending tone with a typical student let alone a special needs one?) asked my son if he thought the principal appreciated that.  My son said no, he was just upset about the homework.  The principal asked my son if he even knew who the principal was.  My son said no (cause really, he didn't....).  The principal then told Sparky that it was him.  My son, already visibly upset, went to get up (to leave? To attack? The world will never know because....) but our behavior specialist, who was right next to him sat him back down and told him we just needed to talk about the note.  The principal will swear that Sparky said "Now I know what I need to do," and was going to go after him.  I would have been more interested in what my son was ACTUALLY going to do without assumptions being involved.

My son was allowed to leave after a few minutes (Principal, yelling: "Get him out of here, we aren't getting anywhere with this!") and his former AS teacher/new Director of Special Ed sat with him in the office.  The principal, bless his heart.... took this moment to make such an impression on me that I was ready to be arrested in the defense of my son.

He looks at me and flat out tells me that he would NOT hesitate to call the police and have my son arrested for threats.  He went off on a 20 minute tangent about how he has a bad back and will not risk further injury.  So if he has to call the cops he will.... (You get the idea. For TWENTY DAMN MINUTES!)

I damn near went over the table at the guy....  He wants to do everything he can to help Sparky but won't hesitate to call the police on a harmless child?  Yeah, cause that isn't contradictory....

Let me give you this picture.  This guy is well over 6 feet tall.  He's solid.  I'm sure he's really great at what he does and is an excellent principal.  I have no doubts to his qualifications (just to his knowledge of special needs kiddos and bedside manner).  But when this very large dude threatens an 11 year old, 4 foot 7, maybe 100lbs kid.... Yeah, I take issue with that.  My son is maybe half this guy's size and can barely lift the cat.  Who's the real threat here?  (I saw him a few days later and he recanted, probably out of guilt.... I still don't appreciate his attitude.)

Moving on.

I ended up being forced to call Crisis Services (our local hotline for people who are a threat to themselves or others) when I got him home.  So I did.  They had me bring him in for an evaluation.  At this point my son is so revved up over everything he's just not coming down.  Now he's really mad at the principal...  Crisis wasn't sure what to do with him so we had to present him to the local hospital.

Can you see where this is going yet?  Escalation at it's finest.....

It is now 6pm, neither of us have eaten, and the cranky just continues.....

So here we are in the ER.  Just where I want to spend my Monday night.  At this point my son is just crying and hating on everything.  The ER psych doc spends two hours trying to figure out what to do with him.  He took this long time to see if Sparky would deescalate any.  Naturally, he didn't.  It got to the point where I was told that I was not allowed to leave the hospital with him, they would have to admit him.

I literally felt my world come to a screeching halt.  Not take him home?  They won't LET me take him home?  Why can't I take him home?  He's MY kid!  How can I not go home with him???

Sparky starts texting Grandma, upset as can be, convinced he's never going to see anyone he loves again.  Grandma is trying to get out of her meeting or wherever she is (like I can remember now) to get there for him.  She's talking to him, trying to calm him down.  I'm just a pile of goo.  Trying not to cry.  Trying to keep composed.  If I fall to pieces it will just be that much harder on the kiddo.  They tell me that he can take a couple personal items with him.  He chooses his red blanket (for our snuggles), Racky the racoon (so he'd have a friend), and the bracelet I made for him (so I'd be with him).  (Tell me that doesn't tug at you....)

While we were in various stages of disaster the doctor was trying to move beds around in the hospital to keep him local instead of sending him over two hours away.  The student doc also raided the employee fridge at this time to try and find something for the poor child to eat.  Finally they manage to move the beds around and about 9pm they take him back.

My world completely shattered.

Nothing could ever prepare you for the moment that your child is thought to be such a danger that he ends up in the hospital.  I am told they will evaluate him the next day and the doctor who runs the ward will give me a call.  They hand me his clothes and send me on my way.

Ever feel like you are trapped in a void?  Where darkness just swirls around you, spinning, spinning, spinning, and you can't stop it?  Where you are just completely and totally hopeless?  Frozen?  Unable to think, to process, to move, to comprehend?

That's where I was.

Right after, my dad calls me demanding to know where I am.  He's pissed to high heaven that they told him at the front desk we weren't there and they wouldn't allow him to see us.  He starts yelling about how he wants the kiddo moved to a different hospital and how he doesn't belong there anyway.  As if I didn't know that...  My mom finally arrives with the items he requested.  We are allowed up to the floor, just off the elevators.  The nurse comes out from behind a heavy locked door, takes the items, and dismisses us.


When I got back to the car, I don't think I ever cried so much.  Ever.

I went home, to my empty house, sat in his room, and cried some more.  Strike called several times to check on me.  By the time Joker (my new guy) got there, I had nothing left.

Visiting hours were between 6pm and 8pm.  You better believe my parents and I were there.  I took him his favorite books, minecraft plushes, and some clothes that next day.  The place was like a prison....  I did speak to the doctor (psych) and she flat out told me that my son DID NOT belong there.  Oh thank god.... But she couldn't release him yet.  Naturally.  She wanted to talk to his psych first because she felt some medication adjustments were warranted and she wanted to add an ADHD medication.  In a ironic twist, I had just filled a new ADHD med the weekend before but hadn't gotten a chance to start it yet.  So she got all excited and went ahead and started it.  By Friday afternoon I was racing to the hospital with the Director of Special Ed (who was a god send as his teacher and has remained so....) to break him out!

The psych felt he was better at home since she knew he wasn't a threat.  She said his note was too vague to really be considered one.  Being in the hospital was just over kill in a sense and not what he needed.  I love validation....

I was in such a hurry I forgot shoes and a jacket.... But ask me if I cared!  I carried his heavy butt right out of there!  He even wore my jacket!  His first phone call was to Grandma, "Grandma? I broke out of there!!!"

We still find the humor in everything.  As we do. :)

The kiddo did not return to school, however.  It was recommended he attend Acute Partial Hospitalization with the Barber National Institute for the usual term of 15 days.  We had the intake that following Monday and he started on Tuesday.

Acute Partial Hospitalization was amazing.  The staff was warm, friendly, and just fantastic to work with.  The psychologist there was just phenomenal.  He and I were just on the same page with everything.  He got it.  He understood everything.  He was very caring and sensitive.  Just... Amazing guy.

Now the Acute Partial program runs for 15 week days, so basically 3 weeks.  About halfway through we added a new prescription to help stabilize the kiddo's mood.  Oh did things get interesting...  My insurance company refused to pay for the new medication, claiming that we had a different primary insurance.  Insurance that I haven't had since March of last year...  So, basically, they didn't feel like paying for a medication that was $1000/month because they wanted to be cheap asses.  I spent over a week talking to the insurance company daily as did the folks at Acute trying to get them to correct this.  Every. Single. Day.  It was just absurd.  It was taking so long that they had to extend my son's stay at Acute for another 15 days!  I kept telling the folks at the insurance company that the hospital couldn't release him until he got this medication.  I finally, finally, got some guy to listen to me and he put the change through.  By then we were already a week into the second term of Acute.  Oy.

To make a long story short, just repeat the last paragraph for when they wanted to up his dose of that medication....

Why do they have to make this so friggin hard?!?!?!  They even tried to act like they were doing me a favor by approving it "just this once." Yeah..... Moving on.

December 9th was Sparky's last day at Acute.  December 10th, he was to return to school.  The Friday before I met with the school and took my whole new team of people with me.  The director of Acute, our new Blended Case Manager (BCM), the recommendations of the new psych (who amazingly agreed to keep the kiddo on in his private practice!!!!), and my behavior specialist/mobile therapist.

It was the most amazing meeting I've ever seen.  The principal sat there with his mouth closed.  The Sped director took everything down.  The teachers modified his homework.  They agreed to call me about everything.  The IEP does not say the police will be called.... Oh it was marvelous!  The homework modification was simple enough: he would be given 3 questions to chose from in each class and he would just have to complete one of the three.  This way he was still doing homework but it gave him choices and would make it easier for him to manage.  In time, we would increase that at MY discretion.  Boom.  They wrote a multi-step plan on what to do if the kiddo made further threats and even designated "safe" people for him to be taken to so he could talk to them and deescalate.  The principal is most notably not one of them.  Boom.  He would get unlimited breaks as needed and each classroom would have a designated "safe" area for him to take a break in.  This way when he got overwhelmed or frustrated he could easily walk away and process things and calm down.  Changes to this would be made at.... MY discretion.  Finally, he would be supervised 100% of the time from the second he steps off the bus to the second he steps back on.  This was to keep him safe (as well as others) in case something happened.  I was (and still am) terrified that something will happen and will be misconstrued and I'll have a monster mess on my hands.  This will help keep that from happening since there is now a designated person who stays with him literally every second of his day.  Even during transitions between classes.  He is literally always with a qualified adult.  This would only be changed at.... (wait for it....) MY discretion.  The Acute director and I left that meeting feeling much better about his return.

There have been many hiccups since his return as he's made several verbal threats, one more written one, and last week tried to get into the office, but overall it's been pretty successful.  After he made two threats in one day against both principals his psych decided he may need to go back to Acute.  After he tried to get into the office last week, that pretty much got set in stone.  He hasn't returned yet as there are some kinks to work out and we are hoping the school can iron it out, but we shall see.  According to his AS teacher they feel perfectly safe with him there since they are supervising him the entire time he is there.  So they have no concerns about him actually being able to do anything.  We have another meeting on Thursday that will include the same group of people to see if the school can meet the demands that Sparky presents. If this is not successful then he will likely be back in Acute for another 15 day term.  We are hoping for the best but we shall see.

It's a struggle.  Every single day.  The kiddo came out of Acute with several more DXs.  He already had the Autistic, Anxiety, and ADHD.  He came out with the added ones of Intellectual Disability (the new DSM-V rules out IQ as a factor, it's all functionality now), Mood Disorder-NOS, and PTSD.  He has started Trauma Based Therapy already to address the PTSD that is suspected to originate from the car accident and from the lady who assaulted him on the beach.  Hopefully this provides us with some answers and him with some closure.  Neither incident was addressed with him because our behavior specialist at the time was terrible and ignored these events and since the kiddo was still non-verbal there is no telling how he processed what happened.

I have so many new fears for the future.  What if he keeps making these threats?  When he's 18 years old no one is going to care how harmless he really is.  No one.  He'll end up in lots of trouble and not understand why.  Even now it seems he doesn't really understand just how serious these threats and actions are.  He just doesn't understand the impact of it or the very real, severe consequences.  I have new fears that he will never be able live alone and have his own life.  Up until now I was certain we were going to make our way easily to that place.  After all, we have six years to get there.  Now I'm not so sure that will be attainable.  It seems he will always have to be closely supervised.  He already hates his meds and wants off of them.  He doesn't understand how much they actually help. 

Some things have changed as a result, such as his access to electronics.  He now has to earn points to play with them.  He can earn however many points he can and he has to cash them in to play.  Even then there are restrictions on that as far as time limits and when he can do it.  He hates it but he abides by it.  This has resulted in a lot of him sitting on the couch staring at me because he doesn't know what else to do.  At first it seemed easier as he'd break out his Lego's or a book.  Now he's bored more often than not despite an entire playroom of toys.  Just a few minutes ago I asked him to go find something in that room to play with because he couldn't just stare at me like he was.  So he came down dressed as a pirate to stare at me.  Perhaps I should have been more clear... Haha!  It has lead to more compliance and better behavior because he knows he can lose points too.  I started this two weeks ago after the double threat so last week he lost points with the threats he made.  He loses a fair chunk equaling at least a half hour of play plus he loses a couple days of electronic use entirely.  It has been pretty effective though, despite the couch staring.

We shall see where all this ultimately leads.  Hopefully the road will be sunny at the end and I believe it can be.  It's just a long road right now so sometimes it's difficult to see.  But as I always say, we adjust, we adapt, we overcome.  And we shall continue to do so for as long as we must.