Sure has been a while...

It sure has been a while since I’ve written anything. Certainly not because I haven’t had anything to say. The past two years have been a bit of a whirlwind between the major teenage years (which are still passing), the start of high school, some big changes, major behavior challenges, and other events. There certainly is a lot to say. It’s more about finding the time to sit down and write about it. 

I’ve been telling myself for a long time now that I needed to get back to writing since it is such a major outlet for me. So this will be my attempt to do so. This may shift slightly from what is going on with my son to more what is going on as a family since the dynamics have changed so much. There are just some things I won’t write about, puberty being one, which is part of why I’ve been so silent for the last two years. That’s just no one’s business but our own. 

So to give you a quick update… Sparky is now a Junior in high school. (Holy crap! I know!) He is a week into the new school year and things seem to be going quite well. He decided during his Freshman year that he wanted to go to our local vo-tech program so he applied and was accepted into the Graphics Communications program and started last year. The program has been amazing. He started his 2nd year this year. The instructor is AMAZING with him. We are blessed in that his daughter has an Autistic son, so he has the patience, understanding, and approach that we need with Sparky. Right now he’s meeting all of his academic goals so he is actually looking to graduate on time with his peers. It’s taking a lot to sink in! In two years my baby is going to graduate from high school! This was something that was so hard to see when he was in Kindergarten…

I’ve spent the last two years working part time for an agency that sends me out to work with students in the classroom. Basically I run interventions and implement behavior plans that allow special needs/at risk children to remain in regular education settings and teach teachers and staff how to run the plans themselves. It’s stressful but very rewarding. My migraines have gotten so bad that I’ve actually been on disability for the last year, so I just work a couple hours a week to get out of the house and keep working with the clients that mean so much to me. My health took another nosedive earlier this summer when I had a couple SVT episodes in July. We are currently trying to figure out what is going on with that. We shall see what that does for my work and fitness future.

The redheaded husky has now been joined by a black/white sassy little girl that we rescued last summer. She is also a husky and came from an abusive breeder so she required a bit of work. She is a lovely little thing and is full of spunk and the perfect complement to the redhead. I was off for almost 5 months and it’s been a real trip trying to drink my coffee with my mug in the air while they run back and forth over my lap! I wouldn’t have it any other way though. Watching her blossom from this shy, terrified, uncertain puppy into this fully confident, sassy, quirky, hilarious creature has been completely worth it. The cats are, well, cats. Ollie is still very much Sparky’s love though he’s suffering his own health crisis. He suffered two collapsed lungs 2 summers ago and has been a medical miracle ever since. He’s still with us being the ornery yet lovable old man he is and we couldn’t be more thrilled. Though he has lost most of his teeth so now he has to eat wet food, so…. Yeah.

So that is essentially what we have been up to. I hope to have more to come on life, what is going on, the transitions into adulthood, and my insights into what we’ve experienced. There have been a few eye opening experiences that have connected a few dots. What a whirlwind it’s been!

The Power of Words

We say all the time to never underestimate the power of a kind word. It is very true, regardless of who you are speaking to, be it a stranger, friend, family, or even your own child. It can have such a profound impact on that person. Words are powerful, for better or worse. They can make or break a person or relationship.  They can make or break a moment or experience. I think this is especially true when it comes to our own children. Especially when they suffer from low self-esteem and struggle so much with their own self-worth.

Last week I went on a sailing regatta and boy did I need the break! I felt like I was going stir crazy and just losing my mind. I was becoming short with everyone and everything and I just couldn’t curb it. We were having a really rough start to summer and I was really stressed.  The kiddo was testing every boundary under the sun and it was just teenage attitude to the nth degree and then some. I wasn’t sure he was going to survive much longer.  I was counting down and really looking forward to a few days away, completely disconnected from the world.

During the trip I received a pretty juicy concussion.  I was pretty out of it and very tired (naturally).  A few days later when we returned home and I picked my son up, I promptly fell asleep on the couch at a mere 4:00 in the afternoon. Oops. I remember him waking me up at some point to ask me something about dinner and chicken noodle soup. Then again with something about showering. Then finally about bed. At that point I was so groggy I didn’t even know what day it was. He reminded me of his rule of going to bed (if mommy is too tired then mommy needs to go to bed and not sleep on the couch) and I sent him to bed. At this point I got up, tucked him in, told him I was sorry for being so out of it and that I was proud of him for being so on the ball, and went to bed myself.

The next day I didn’t fare much better but I did make it to work and get through the day. He helped me quite a bit throughout the day with getting the dishes done, helping me make dinner, getting things I needed when I was too dizzy and sick to move, and making sure he got his shower and took his meds. My boy was on the ball. I kept telling him how proud of was of him and how amazing he was being.

Things have pretty much continued in that way. He’s being patient with me. He’s reminding me of things. He’s showering me with hugs and kisses. He’s letting me sleep. He’s letting the dog in and out without screaming at the broken screen door. And I can only respond with how proud I am of him and how amazing he is being. He really has been a rock star.

Here we are today and I’m in my room after a shower and he comes upstairs with the towels I had started to wash the other day. Dry. Ready to be put away. Big grin on his face. He started his own laundry without being asked. When he realized he forgot some clothes, he didn’t flip out (which is HUGE) he just came to me and said he didn’t know what to do. So I helped him build a load with a blanket and two jackets I couldn’t fit in my wash from the trip.

I got to thinking while on the trip about all the hype over having your kids be outside and creative and not on anything electronic over the summer. At first I thought it was a great idea, let’s have him be creative first before getting on the computer! Have him draw, have him use Legos, whatever. But you know what? Who cares? He goes to a camp with other Autistic kiddos for socialization and anger management skills. When he is on the computer he IS creating. He’s making computer game levels and characters. He works so hard all school year to keep it together, he deserves the break too.

The entire dynamic in this house has changed. He’s listening again (actually coming the first time I call, not after I turn into the crazy woman and go looking for him), he’s doing what he’s being asked to do, he’s not whining, he’s not yelling, and the attitude? So far it’s on hiatus. He is making me so proud with how well he’s been doing. He’s been making sure I’m ok. He’s been snuggling in with me in the morning. He’s been getting me anything I need if I can’t get up at that time due to dizziness. Last night he even made me a S’more in the microwave so I could have a snack too. I’ve always known he’s the best kid out there, lately, he’s been proving it all over again. All because I keep reminding him of how amazing he is.

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.

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.

Huh.

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.

Ouch.

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.

How Dare You?!

I have rage.

It's not often this happens, but tonight, it seems to want to pop out.  I do want to note that this isn't directed at anyone who is on my page.  You guys are awesome and a pillar of support!  I've gotten nothing but love from you and I appreciate it.  This is aimed at people I meet in life.

So here it is, with a trigger for... Well, everything.  I don't usually swear but this has a few choice words in it as well.

I am sick of having my judgement questioned.  I don't give a flying banana about what your ex girlfriend/boyfriend/plaything/neighbor/whatever did with their child 10 years ago that you learned from them.  It has absolutely nothing to do with me or my son.  A lot can happen in 6 months let alone 10 years.  Odds are we have either tried it already or I already know it won't work or it's just plain dangerous (some things are).  After all, I know my son.  I know our story.  For the love of God stop arguing and telling me I'm wrong.

How dare you come in here and assume you are right about everything and I am wrong.  Guess what?  You are wrong.  Just as sometimes I am wrong about things, you are wrong about this.  Don't come barreling in yelling at me about how I don't listen or am a bitch because I don't agree with what you say.  I've been in this game a long time now.  I've been raising him for over 11 years.  Alone and quite successfully I might add.  I've been living with myself for over 31.  I'm listening to the voices that actually matter.  I'm listening to the Autistic adults and children who have so much to say.  I'm listening to myself.

I don't give a damn what some researcher or shiny new therapist says.  They aren't the voices I'm giving all the credit to.  They want to make a name for themselves.  I want peace in my household and in my son's heart.  When an Autistic adult, child, or even my own conscience is telling me, "For the love of all things Holy don't ever do that! Try this instead, it worked for me, maybe it will for you too." I'm listening.  Those are the voices that matter.  Autistic voices are voices for other Autistics.

I'm not going to do anything to intentionally provoke him or cause a meltdown to 'change things up' or 'get him used to it' or 'help his character' or whatever the hell piss arse reason you want to throw at me.  Would you intentionally shoot your mother in the face for no good reason?  Would you hide the keys to your spouse's car to force them to be flexible?  Would you poke and prod at your typical child just to see them cry?  Then why in bloody hell do you want me to do it to my own child?  Yes, I avoid things that trigger him.  Yes, I watch and sometimes cater to his moods.  Isn't that what we all would like?  Who doesn't want to be left alone when they are angry or sad?  Who doesn't want to laugh and run when they are happy or excited?  It's called RESPECT.

Have you noticed how peaceful my house has been for the past several months?  That isn't a coincidence.  That's me taking control and refusing to cater to people who would poke at him, rile him up, then tell him he's wrong for being upset and be 'disappointed' when he can't remember his coping skills.  Seriously, what the hell is that baloney?  Do you think with 100% perfection and clarity when you are angry or upset?  Didn't think so.  Why do you expect it of my adolescent son?

I refuse to sit here and be dictated by a society who wants to fit my son into some predetermined, twisted mold.  I'm so sick and tired of prepping him for how the world will react to him and how he can 'fit in' with his peers and look 'normal'.  Who the bejeebes is actually normal anyway?  Talk about one hell of a subjective concept!  How about we change your laugh from a titter to a good old fashioned guffaw?  Maybe we'll train you to cut your spaghetti up instead of twirling it on your fork and slurping it?  No, don't talk with your hands!  You better sit on them so you don't 'stick out.'  Oh, I know.  We'll teach you that if you don't wash your hair before washing your body then you simply are not doing the steps properly.  Sound foolish?  It should.

For the love of clouds, society needs to buck up and accept him for who he is, exactly how he is, whether they like it or not.  Let's face it, he is one hell of a rocking awesome kid!  I refuse to squash that!  I spent over 30 years trying to fit what society expected of me and it damn near KILLED me.  I'll be damned if I'm forced to make my son do the same thing.  Especially since he was so close to where I was to begin with.  He will not suffer what I had to suffer while there is still breath in my body.  Fuck 'polite society' and their wishes.  There is nothing polite about them.

Let's recap.

Don't tell me I'm wrong.
Don't judge me, and while you are at it, get over your own ego.
I'm listening to the voices that really matter.
He will be forced into some cookie cutter statue molded by the (not so) polite society over my dead body.
I find it no small coincidence that when I listen to my heart and the voices that matter, those are the times when my household is the most at peace and we are our happiest.
RESPECT who we are.

Acceptance.  Period.  It doesn't involve ifs, ands, or buts.  Only love of the person for who they truly are.

No Island Here...

There is an article floating about from HuffPo about things that an Autism parent will never say. (You can see it here.)  At first I didn’t really know what to make of it. I still really don’t.  In the article it talked about how stressful raising an Autistic child is and how lonely.  It said parents are peacekeepers from everyone to the family to school to complete strangers.  It claims we are isolated as parents of Autistic children.  It talks about hurtful comments.

It gives the impression that it is all inclusive, that all parents feel that way.

I don’t.

Maybe I don’t have guilt over meeting my son’s needs because I only have him.  I am able to devote my time to him without “worrying” over “unfair” treatment to siblings.  My issue with this claim is really simple: empirical research suggests otherwise.  Research shows that NT siblings are enriched by their lives with their SN sibling, not hampered by it. They are more open and understanding of those who are disabled and more likely to help their peers.  They also harbor no ill will towards their SN sibling for any reason.  Imagine that: NT siblings of SN children RECOGNIZE that they are simply different in what they need and support how things happen at home. They get it and understand it. They also often grow up to help support their siblings in their adult life, making sure they have what they need.  So, why would parents need to harbor this “guilt”?

I’m not a peacekeeper. I don’t try to make everyone happy nor do I care to. I don’t have the time or energy for that. Frankly, I don’t give a rat’s arse what some stranger in the supermarket thinks of us. It doesn’t really affect me if they are that shallow and judgey. We don’t know them. It’s a reflection of them and their character, not us or ours. Our life will go on as usual. I don’t “try not to look bothered.” I’m NOT bothered.  I also will not be a peacekeeper at school. That’s just straight up push-over nonsense.  I will not allow ANYONE to walk all over me. I will not appease them to make them happy. It’s their task to make me happy. Plain and simple. If your school isn’t making you happy, get a lawyer, learn your rights. I also don’t try to keep peace in my family or with my friends. If they can’t respect my views and how I do things, then we will spend our time with someone who accepts us as we are. We won’t be run over by anyone because they are “offended” or upset by something we do. (Thankfully this isn’t anything I really have to deal with.)

Maybe that author is isolated, but I sure as hell am not.  You see, I put effort into my relationships with family and friends to maintain them and keep their value.  Do I compromise myself in the process? No. Just read my last paragraph.  For every one person who has dropped out of our lives we have gained 10 or more who are more than happy to share our lives. My friends and family have all done what they can to learn about my son so that they can support us however they can. We have some real people of value in our lives. I have also found my way into a larger community of people who share my experiences and are also raising an Autistic child (or 2).  I have never felt isolated.  I never will. I also don’t like the author’s assumption that my son isn’t part of the social world. He has friends. He loves people. He’ll chat the ear off anyone he knows. He plays with and shares interests with his friends at school.  We are also very close. We are not “isolated” as if we are two strangers living in the same house. My son will find a way to talk to me.  Communication is not always speech. He’ll write. He’ll draw. He’ll create. He tells me everything. Sorry, no isolation or lack of social interaction here.

Do I hear stupid things in regards to my son being Autistic? Sure. But it’s a teachable moment. Education is the single most powerful tool in the world. I also hear hurtful things about me, my parenting, and even my weight (how I need to gain a few pounds, for the record I’m healthy and fit and at a perfect weight). I get assumptions all the time about how because I’m deaf I should be dumb. Have I heard, “He doesn’t look Autistic…” You betcha. It boils down to the ignorance (meant by the true dictionary definition) of the person making the comment.  They simply do not know or understand.

Is raising an Autistic child stressful? Sure. Just look at how we are treated. Look at how anyone with a disability is treated. Time and time again, day in and day out, we are treated like we are less than human, not worthy to be alive or tended to. We cannot get the help we need, the services we deserve.  But that doesn’t mean it’s unbearable or too much to handle. I don’t think raising an Autistic is that hard, frankly. He’s just another kid. (See here.) Able and capable of doing what all other NT kids can do. We just do things differently. Our routines are different. Our needs are different. It certainly isn’t this down-in-the-pits, oh-woe-is-me, horror.

I do not worry about the future. My son will be just fine. He will live where he chooses to live, be it here or his own home, doing whatever he wants to do with his future. He is well loved by so many. Since we are not isolated in any way, socially or geographically, I have no concerns over anyone being around to lend him a hand when he needs it. This holds true whether or not I am here or not. I know he will be ok. I have confidence and faith in him and our circle. After all, we started the foundation to his own self-determination long ago. The seeds of self-advocacy and independence are well planted. What do I need to worry about?

We don’t "suffer" anything. We enjoy life. We are whole, complete, even content. Is it really that hard to believe?