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.

He's Back!

Oh my... So much to stay and no clue where to start.  But that's a good thing right?  The last four months have been pretty busy in this little household.

We struggled a lot over the winter months with the kiddo.  His behavior and mental state was sliding backwards at rapid pace.  In desperation I called a specialized psychiatric facility in a city two hours away begging for help.

And help came. Oh boy did help come...  The kiddo was to the point where he was bleeding daily from scratches he inflicted to his face.  He was constantly biting himself.  Always upset.  The slightest thing in the wind would set him off.  He didn't see the future.  He was convinced he was going to die.  I didn't know what to do.  I cried.  A lot.  Where was my happy boy?

The call to the Autism Unit changed everything.  I called in mid-February but I had to wait over a month for an appointment.  I was hoping for sooner but I was taking what I could get.  On a Friday not even a week later I received a call from them, they had a cancellation for that Monday, did I want it?  Oh, hell yeah!  I got off work and we were on our way!

The appointment was just a starter appointment so to speak, nothing more than an intake but the psych we met with took two hours to thoroughly go over everything with us.  Every last little bit of history, every issue, every thing.  They set us up with an appointment to meet with the psych he was going to see for med management.  I felt pretty good after that.  FINALLY someone was listening to me.  Someone was actually HEARING what I had to say.  Someone was going to HELP.

About 4 weeks ago, we traveled the two hours to meet with this psych.  He was AMAZING.  He actually spoke to the kiddo, on his level, one on one, and LISTENED to him even when he went off on a story tangent.  Truly listened.  Grandma went with us and between us and the kiddo we were able to cover and remember everything we needed to.  This appointment was the best I have ever been to...
The scariest part of the whole thing was this:  The psych kept asking me the same question over and over and over.  He kept asking me what meds my son was on and at what dosage.  In the hour we were with him he asked at least five times.  It never really struck me why until the end of the appointment.

He turned to me and said: I don't know why your son is on those medications.  That is not what they are used for.  The side effect of the one is drowsiness but it's not an actual sleep aid and the other medication is a secondary medication, it's not used for what he's using it for and it's being administered wrong anyway to have any effect.

Umm... What???  So, basically the kiddo was placed on the WRONG meds at the WRONG schedule for the WRONG reasons and had been on these meds for almost two years causing him serious weight gain.

Well no wonder it wasn't helping!!!!!  The psych up here in our hometown spent his time yelling at me because he really WAS incompetent and didn't want me to do anything about it!

I rarely swear on here but jeebus that guy can seriously go fuck himself....  Anyone who is going to give a child the wrong stuff... Well, let's say there's a special place in the 9th circle of hell for their kind.... (He didn't like me as it was because I told him he could essentially shove it every one of the 300 or so times he wanted to place the kiddo on Risperdal. NO THANKS!)

The new psych set up the kiddo on a new med schedule.  We started with the anxiety issue (to change only one thing at a time) and he was placed on a real anxiety medication.

Holy crap I can't even tell you the turn around we saw....  He started smiling.  He started laughing.  He started playing.  For the first time in YEARS he wanted to go outside and play.  He told me he could see the future now (how low must he have felt to make that statement? :'( ).  I essentially have my kiddo back.  The kiddo I have not seen in FIVE YEARS.  I wish I was kidding.  I wish I was exaggerating.

I have my boy back.  I knew he was in there somewhere.  I knew it.  I had to fight, for years, to find someone to listen to me to get him back.  The school has noticed and his teachers tell me how much they love this new kiddo (they loved him before but this non-stop smiling kiddo is just so wonderful to see) and how well he's doing.

He's approaching people!  He's introducing himself!  He's engaging with his peers!  He thinks he's the smartest kid ever!  He's realized he CAN control his body!  He's realizing that happiness really is possible!

I knew he was in there.  I couldn't give up hope that someday we'd be able to pull him back out so he can be the fun loving kiddo we always knew he was.

We see the psych again on Friday.  I can't wait to go.  Things can only go up from here.  Honestly, after this whole post anything else I have to share seems so small, so inconsequential that it just doesn't matter.

The only thing that matters is that I have my kiddo back.  This summer promises to be a good one now.  Oh the things we can do!!

Other things that have happened? Well... Um... We went to visit his favorite aunt (Aunt C) for Easter and he didn't perseverate on the house burning down or what would happen to the cats (how HUGE is that?!?!?!?!?!).  I'm less than two weeks from graduating with my Masters in Special Ed (I know right?!?).  And um... My house is actually clean.

Yeah.  None of that is nearly as exciting has the happy, playful, social-without-prompts, can-see-his-future-now, kiddo that has returned to me. :)

I Just Need a Lot of Love, Mom

The past couple of nights have held the same cycle for us. The kiddo gets sent to bed. He comes downstairs pretending to sleepwalk. He walks over, curls up in my lap, and pretends he's fast asleep.

If I try to move him he puts on a pretty convincing performance of being asleep and unaware.

Well, convincing if it wasn't for the grin on his face. Oh how he warms my heart!

Tonight it was different.

On his way up the stairs to go to bed he dropped his container holding a bunch of food shaped erasers. He started freaking out about it because he knew he was supposed to be upstairs and he was still in the hall scrambling to pick them up. He gets upset when things don't go according to plan because he knows it can lead to "unexpected" behavior (thanks to his bsc for that gem.... /sarcasm) which really only serves to upset him more. I hear him scrambling and ask him what's going on.

I'm met with panic, whining, and him making his usual freak out noises.

I ask him again what is going on, hoping he'll just say it (I can't see him because I'm still in the living room). Same response. So I get up and to go see. He hears me walking and starts freaking out more. I walk in, assess what's going on, I tell him it's ok and to simply finish picking them up and get his teeth brushed.

I leave the hallway, hoping he'll calm down once he realizes that he was not in trouble. I hear him go upstairs and think everything is ok.  Not so much...

He's back on the steps and freaking out again. So I go investigate. By the time I get to him he's in full freak out mode. He's running to me, then away from me. He's covering his face with his hands. He's on the verge of simply falling to a heap on the floor. He can't find one of them.

I ask if he checked under the dresser in the hall. He's so busy freaking out that he tells me he can't look. Very typical when he's upset. He literally loses control and even if you walk him through something, he's just frozen and can't figure out how to do it. He just falls apart with any further attempt. So I look. It's not anywhere I can see. I tell him just to run upstairs and check his room where he has the others and make sure he actually dropped it.

Insert another freak out. I tell him he may have to go without for tonight as he has to get to bed for school and I can find it tomorrow.

Wrong answer mom.

This sent him totally over the edge. This is usually how he would respond if it was a Mario plush toy. He was crying, freaking out, total negative self talk, and talking about how he couldn't do without it.

Oy.

I have a feeling he never lost it since I can't find it anywhere. Next task? Get him back up to his room and see.

After practically carrying him upstairs, he goes running into his room and lands on his bed. His lamp isn't even on yet. This is a sure sign that all is not right. He's petrified of the dark... So I turn on his lamp, ask him where they are, and to check.

Wrong again mom...

He's now throwing himself around on the floor crying. Ok, so I will check. Lo and behold...

Yeah, he never lost it.

He immediately freezes again, panics, starts crying all over again, and repeatedly tells me he's sorry he didn't listen and check.  I keep telling him it's ok and he's just tired, he has it now, so let's go to sleep. I assure him that I love him and leave his room.

He comes down not too long later with a note and huge pout. I have him sit next to me and ask what is wrong. He's just crying. I read the note and it reads: Dear Mommy my haert (sic) is broken :( </3 :( :( from A. :( </3 </3

I give him a hug and tell him everything is ok and that I love him. He tells me he just needs some love.

Oh, this momma has lots of love to give! So we sit. Him snuggled into my side. I "give" him a piece of my "heart" (a total pantomime gesture he started long ago with me when he was sad and was missing pieces of his heart and would ask for pieces of mine to make his heart whole) to help his heart feel better.

He smiles. He feels better. He tells me he just needed a lot of love. I said, ok. Then he says: If I ever have too much love then I will always be happy.

Heartmelt!

We go back upstairs. I tuck him in again. He smiles all happy and snuggles into his blanket.

Half an hour later he is "sleepwalking" down to me and snuggles back in my lap.

I'd say all has returned to our normal.

As he lays sleeping and I sit pondering all of this I can't help but think: how true is what he said? "I just needed a lot of love." In that moment when he was upset, confused, frozen, etc, all he needed was a little bit of love for those dark skies open right back up again. And he knew it. His self awareness reappears again.

I admit, I met him with some frustration. He has school tomorrow, he's good at delays, heck I'm just tired after this long weekend... I stand corrected. He needed met with love.