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.

When We Fall...

When a baby learns to talk... She babbles. She makes noise. She keeps babbling. She learns to talk.

When a toddler learns to walk... He falls. He gets up. He falls. He gets up. He learns to walk.

When a child learns to run... She trips. She falls. She gets up. She tries again. She learns to run.

When a child learns to ride a bike... He gets on. He falls. He gets on. He falls. He gets back on. He falls. He learns to ride.

You struggle. You learn. You experience heartbreak. You suffer disappointments. You get up. You dust yourself off. You continue on.

You sit in the office. You hear the words. "He has what we call Autism." You react.

You fall. You get up. You continue on.

You struggle teaching him to speak. To dress. To eat. To just call you "mom."

You fall. You get up. You continue on.

You sit helplessly as you watch your son rage against himself. He wants a new brain. He doesn't understand why it "doesn't work" the way people expect it to. Why can't he be like his friends at school? Why can't he understand what others do? He wants to die.

You fall. You get up. You continue on.

You find yourself holding him. He's raging. He's angry. He doesn't see you. He doesn't see his mom. You are there. But he doesn't see you. He sees anger. Upset. He surprises you with an amazingly powerful right hook to the cheek.

You fall. You cry. Your world shatters again.

What do you do?

What you do next defines you. It makes you. It breaks you.

What do you do?

Do you get up and try again?

Do you decide you've had enough and give in?

What would you do?

I see his frustration. I can see it in his eyes as he rages within trying to get a thought out.

I see him struggle to tell me an idea.

I see him fight to tell me how he feels.

I hear him rage verbally about his brain. He screams that he needs a new one. He doesn't understand why it "doesn't work" like he thinks it should. He beats his head with his fists, leaving scratches and bruises, trying to get it to "work."

I watch him struggle with who he is and the body he is in.

There is nothing I can do to make it better. Nothing I can do to help him make sense of it.

All I can do is hug him, tell him how much I love him, tell him he's perfect as he is, and duck.

I never knew just how much I would struggle as a mom. I cry more than I like to admit. I scream. I yell. I throw things. I totally lose my mind. I have nights where all I want is a drink so I can relax. I am constantly stressed. Constantly on my toes. Constantly in high gear.

I get hugged, kissed, scratched, hit, punched, snuggled, yelled at, smiled at, and gifted. All in one day. Sometimes all in the same hour.

And when I cry, I cry hard. Sometimes it's a single tear sliding silently down my cheek unnoticed, all the upset contained in that single drop. Sometimes it's the ugly cry locked in the bathroom.

When I crack, I crack hard.

But I do the only thing I know how to do.

Get up.

Dust myself off.

And continue on.

My baby is relying on me. He's the most precious gift I have.

Tomorrow is a new day.

We adjust. We adapt. We overcome.

**Editor's note: Whenever I do break down and lost my cool it is rarely in the kiddo's presence. I will leave the room. I will take him to Grandma's. I will do what I need to do to get a break and regroup. We all need a plan. What is yours?**

The Day I Lost Him

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

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

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

These kiddos make professional escape artists look like amateurs.

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

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

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

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

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

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

5 minutes....

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

10  minutes....

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

15 minutes....

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

20 minutes...

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

25 minutes...

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

30 minutes...

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

35 minutes...

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

40 minutes...

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

45 minutes...

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

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

They found him.

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

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

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

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

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

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

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

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

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

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

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

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

Big Red Safety Box
Project Lifesaver
Autism Wandering and Elopement Initiative

Theatre Baby!

Yesterday I got to confuse the bejeebies out of of the family based team. I told them and our BSC rather casually that he would be going to rehearsal with me that night. My BSC didn't flinch. The FB team did. They both stared at me like deer caught in headlights.

Skeptically, "How does that go?"


Me: Just fine.

"You mean he sits quietly?"

"Wait, he doesn't come looking for you when he needs something?"

"He just sits and does his own thing?"

"How does he know to do that?"

"He just knows when he can talk to you and when he can't (when onstage)?"

"You have never had an issue with him disrupting anything?"

Best.Day.Ever.

No my kid isn't the out of control monster you seem to think he is. Nor am I this totally ineffective mother who can't do jack to teach her child appropriate mannerisms.

My response to their questioning was so simple, "He literally grew up in theater. He just knows."

Those of you who know my story know that I have  B.A. in Theater. I had my son during this time and took him back to college with me. There are many stories of the kiddo doing some thing or other in the theater spaces, backstage, shops, etc. I would set him down and he'd disappear as one of his adopted 150 aunts and uncles would whisk him away to play.

His greatest moment was when I was doing the Costume Design for Candide and he slipped away, toddled up on stage (in the middle of rehearsal), interrupted everyone, and started pointing his chubby little finger and gave his own stage directions. The director (my mentor) nearly fell out of his chair laughing.

He grew up in theater.

He knows when the lights are down, you are quiet.

He knows when the curtains 'fall', you clap.

He knows when Mommy is on stage, she is unavailable.

He also somehow intuitively knows when we take breaks, even if we are still on stage, and will come on up to ask his question then.

He knows to never leave the space. If he needs to, he will find an adult he knows and ask for help.

He is loved in my theater circles.

He even got to be the voice of the little boy when I did Death of a Salesman a couple years ago.

He'll get the autographs of all the ladies on the program.

He lives for it. He knows it. He loves it.

I recall another time when we were rehearsing and on a break when he did a little Charlie Chapman dance routine, complete with hat and cane.

And another time when he gave directions to a lovely friend of mine on some dance moves. She went along with him laughing all the while (I think there may be video evidence of this one...).

During shows, if he has to come with me, he sits quietly off-stage in the back corner, watches a movie and draws. If he needs to leave the green room for any reason, he knows which adult to ask for help (don't ask me how me hows stage appearance order, but he does) and they are more than happy to help.

Autistic or not, when you grow up with something, something with definite rules and boundaries, they become second nature to you. You just know. You just do.

So tonight when we go to rehearsal again, I know just where he will be. Sitting 3 rows back, left side (down stage right), 2nd seat in, playing on his iPad and munching on Cheetos.

He is my theater baby. :)

 Playing in the wood shop....

In the green room with Mommy...

In the dressing room while Mommy directed the Wardrobe crew. (He loved Brandon's spot the most!)

This mannequin in the Costume Shop brought him great joy.

We adjust. We adapt. We overcome.

Often when we talk about our lives with Autism we keep it sunny. We try to show the lighter side. We are hesitant to share the dark moments, the negativity, the trials, the tribulations, the tears.

We are afraid.

We feel hopeless.

We don't want the "stigma."

The reality is, we face some pretty hard stuff with our kiddos.

We deal with self-injurious behaviors. We deal with aggression. We deal with meltdowns. We get hit, punched, bruised, and cry. Sometimes it's a rare occurrence. Sometimes, it can be daily.

It isn't often that anyone speaks about it. Often, when someone does they are criticized and called horrible parents. Those that judge are those who have no idea. They have no experience. They have no understanding. Or, if they have kiddos on the spectrum, they are in a deep state of denial that they cannot possibly admit that they sometimes feel like failures. That they too, do these things and feel what they feel. No one wants to admit that it can happen to them.

We try to know all the answers. We pretend. We fight. We put up a strong front.

I don't care who you are. Mom. Dad. Grandma. Grandpa. Aunt. Uncle. Sibling. Friend. You do it too.

This is the voice that is lost. This is what we are missing. This is the part of our journey through the adventure of life that can help others not feel like an island.

Don't get me wrong here, though. Are things often fantastic? Yes. Do we love our children unconditionally? Yes. Do we accept them and love them as they are for all their quirks and hardships? You betcha. Would we change them? In my case, absolutely not.

But surely the world cannot expect that our children do not misbehave. That they do not have meltdowns (not the same as tantrums!). That they do not have off moments.

That would be as lacking as the assumption that they are not loving, fun, enjoyable, creative, little human beings with a ton of love and happiness to share.

My son loves to be happy. He strives to please. He's very creative. He's even working on the 4th book in his little chapter book series. He is the most loving child I know. He wants to snuggle, play, dote on the cats, and create. He is a great inventor after all. :)

But even we have our off moments. Our not so sunny days. It would be wrong to deny us that admission. It would be wrong to judge us differently or more harshly as a result of it. We aren't any different. We just have different trials.

We adjust. We adapt. We overcome.

Bad Moment vs. Bad Day

Lately we have been working on coping skills at home. We are trying to make A more aware and use coping skills when his behavior slides so that he can recognize when he's having trouble and take steps to deal with it, be it a break, snuggle, whatever. When he has an overall good day, he earns a Squinkie. This has led to great discussions on behaviors and him (hooray!) asking for help when he feels like he may come apart. He is very aware and insightful and this has helped quite a bit. He wants to work on his behaviors.

Yesterday the kiddo was having a few rough moments. Every time he'd fall apart he would enter this woe of having a bad day. We had a conversation several times (on repeat) and it would usually end up similar to:

A: I'm having such a bad day! (Crying)
M: No, you aren't having a bad day, just a bad moment.
A: No! I'm having a bad day! I can't do it!
M: Did you have a bad day at Petsmart?
A: No.
M: Did you have a bad day at WalMart?
A: No...
M: Did you have a bad day a few minutes ago?
A: No...
M: See? You aren't having a bad day, you are having a bad moment.
A: Mom?
M: Yes buddy?
A: I'm having a bad moment!!

This morning so far he has spent in total tears for one thing or another. He was playing Bad Piggies on the iPad in my room while I slept. He kept screaming and yelling at it and I kept telling him to stop and take a break. A break, of course, that he refused. Perseveration is hard to break... After about 2 hours he decided to go downstairs and build some more Mario levels on my laptop (we have a special program that allows him to create away with every Mario Nintendo feature you can hope for).

It wasn't long before I heard him scream. Apparently Lakitu isn't cooperating. I manage to get him back up to my room and the floodgates have opened. He's gone from angry to all out frustration and upset.

He is not having a good morning...

He curls up into a little ball on my bed and I sit here and hug him. He snuggles in more and starts talking, telling me everything that has him so upset. (Such a blessing!) I say, "I know buddy, you are having a rough day."

He pauses for a moment and says, "I'm having a bad moment!"

He's now happily laying here playing Bubble Pig. I stand corrected. :)