Showing posts with label Anxiety. Show all posts
Showing posts with label Anxiety. Show all posts

Tuesday, March 31, 2015

Lost, Again...

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

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

Tuesday, January 27, 2015

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


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

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

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

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

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

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.

Wednesday, April 30, 2014

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. :)

Tuesday, July 16, 2013

He's a Kid!

It's not often I get angry at people. In fact I'm pretty easy going. I also don't often personally encounter people who are just plain ignorant or unable to understand. I don't often encounter people who view my child as being "less" somehow in comparison to NT children.

Often as parents of Autistics (even Autistics themselves!) we encounter some level of ignorance towards our children. It's usually something that, all irritation aside, we can brush off and move on.

It must be something in the air but I've seen so much of it that I have literally stopped dead in my tracks.

I've seen facebook postings and blog entries about people feeling uncomfortable around our kiddos in some way or another. On one level, I can understand that if you aren't sure of how to respond or interact.

Where I draw the line is people who question our judgement. And even I've been questioned recently.

Judgement on what? ANYTHING. I know my son. I know what he can handle. I know his life story. I know myself. I know what I am capable of. I know how to handle things. It's a skill that we learn to hone. Survival depends on it.

If I am comfortable with something, if I say "I've got this," then guess what? I've GOT this. We won't just talk out of our big toe and bluff. We don't have the time or the inclination. It isn't worth the effort.

It's an insane little poetic irony, really. For example, one could trust my judgement on everything. Literally everything. Business, personal, whatever. But suddenly, when my son comes in the picture, my judgement isn't worth trusting?

A wee bit hypocritical no?

I have to say, I'm not too happy with this. How could any of us be? What is it about being Autistic that makes people pause? What is it that makes people suddenly think they aren't as capable as NT children (or adults)? What is it that makes them seem like alien creatures that are not capable of at least basic functioning?

Guess what folks?

He plays the same games your kids do (and is extremely good at it): Minecraft, Mario Brothers, Sonic, Pac Man, Angry Birds, Bad Piggies (which he beat in less than a week).

He loves to play on the playground and go to the beach.

He loves to swim. (I know, I just burst your "but Autistics don't swim!" bubble. You'll live.)

He loves being on the water (he spent the first couple years of his life on a sailboat and still goes out on boats that family has, even canoes).

He loves to watch movies and TV shows. Granted he probably watches a little more Animal Planet and National Geographic Wild than your average kiddo (his aunt was a zookeeper for years), but he loves Fairly Odd Parents, Penguins of Madagascar, Fraggle Rock, the Madagascar movies, the Ice Age movies, Muppets, America's Funniest Videos, Wipeout... The list goes on!

He loves to read! Good lord can this kid read too.... I have more books in this house than I have shelves to put them on.

He loves to draw and create. He's written 5 chapter books to date and he has more in his head to write. He's constantly drawing and molding with clay. He is extremely detailed in everything he creates. He draws every single day.

He does chores, like, real responsible chores. He empties the dishwasher and feeds the cats. He cleans up his toys. Heck, he can even feed himself breakfast and lunch. He just started learning to cook on the stove!

He's in the same class as your kid. Yep, included right on in, successfully! They help him, they play with him, they include him!

He's always thinking. Always crafting. Always developing. Give him a challenge, he'll meet it. I guarantee you.

Well, golly gee... He is... Well... A kid!

They all are!

Do we have to take special considerations? Sure. We have to be mindful of the environment. Who isn't? We have to pay attention to schedules and routines. Who doesn't like predictability? We have headphones for when noises become too much. Makes sense. We are trying out a weighted blanket, mostly to ground him so he can sleep. Honestly, I'd use the thing too! Yes, we recently added a swing into my living room. It gives him the sensory input he needs to be calm and focus. Who doesn't like to  swing or sit in a rocking chair?

Yes, we have to be more hyper-vigilant. We are forced to be more aware. It tends to make us look like helicopter parents. But that doesn't make my son less of a kid.

So explain to me again how my kid is so... "different"? How is he "less"? If kids can include him, why can't you?

And because everyone loves pictures:









Tuesday, April 30, 2013

Completely Helpless...

Last night I had dress rehearsal for my show. I was hoping for the best but ended up with one of those situations that I dread being caught in...

Since I couldn't take the kiddo with me and M was up he stayed home with him. We started new data so I talked him through what to do and and wished him luck with homework. I was out the door by 6:20pm. I didn't really anticipate anything major happening. As you know, M and A are two peas in a pod and have a lot of fun together. I figured the kiddo would protest his homework a bit as he always does with me but still do it. I knew M would be able to easily deal with any behaviors and fuss he put forth so I wasn't worried. The kiddo hates homework...

It all started with a text message at 7:06 from M:



We hadn't started yet as we were still waiting for the newspaper to show up to take pictures so I got the message pretty quick:


That didn't go over well.... I am stunned by the reaction...


Did you hear the crack? Pretty sure my heart just split in two... Of course there was no way for me to get to him either so I was left fretting and trying to figure out what to do from where I was. I kept telling myself M had everything in hand and tried to keep from entering freak-out mode...

What felt like an eternity later:


Crap... I have no idea where to go from here. It doesn't appear he's calming down at all and I'm still stuck. I'm afraid to let him off the homework hook (and in a sense giving him negative (avoidance) reinforcement to do this again tomorrow) but I don't want to drive him too far. The decision ultimately falls to me so...


That's right. Mommy gave up the fight. I knew we needed to get the kiddo calmed down asap. Everything is lost once things start flying. I then asked if anything was broken, since I'm an idiot and have antiques out... But in my defense, things rarely get broken and the cat broke the last antique that bit the dust...


Did you hear that? Yep. My heart cracked again.... Him hiding is usually indicative of worse behaviors to come (or a complete surrender, it's 50/50 but I wasn't home...) so I had to ask if there was any SIBs.... Then naturally freaked out in the process....



Then because I can be a jerk sometimes he added:





*corrected to him not home (Autocorrect got him, haha!)

During this time and the following hour I kept running to the dressing room between scenes to check my phone for the latest updates on what is going on. I felt like a crazy woman rushing around, concerned and distracted by what my son is going through and trying to focus on my lines. It was very difficult to do. As you can imagine, it is quite the distraction.

Around 8:13 pm I received this email:



You can see the picture of the homework page he wanted help with and his request for my help. Since the theater is in an old school and is also a nuclear fallout shelter (comforting, no?) I have no idea what time he actually sent it. Signal is really bad in that building....

After A had calmed down, order was restored and he settled to have a snack and snuggle in on the couch. When I came home M told me that the kiddo was so worn out that he fell asleep on the couch early (bedtime is 9) and he carried him up. I went up to check on him and he was sleeping away.

This morning when the kiddo woke up he came and snuggled in. There was no hint of the upset from last night. My only clue that something was ever amiss was that he was slightly clingy and actually snuggled in this morning. Usually he sits on the bed somewhere and asks for the iPad. There were lots of hugs too. He was quite happy when I dropped him off at school this morning.

We are a little baffled by what made him go over the edge like this. Unfortunately there is no way to really know. The only thing we can suspect is that he's been a little more anxious lately. Hopefully tonight will go a little more easily.

I can hope right? :)