The Daily Image Struggle

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

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

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

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

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

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

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

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

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

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

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

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

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.

Elopement: Tools and Resources to Prepare

With summer soon to be upon us again I wanted to take a moment to be serious.  Weird, right? ;)

No one really wants to think about the possibility of losing their child through wandering or otherwise but it is a reality that many of us face.  With this in mind I wanted to give you a couple of quick resources that I found to help you get started in case of an emergency.  Many of you know my son wandered off 4 years ago now and we were very fortunate that he was found safely.  (You can read my posts about it here and here.)

First and foremost, I would highly encourage you to set up a meeting with your local law enforcement and local Fire/EMS departments as well.  It would be very beneficial for your child to meet and become familiar with their faces and uniforms and for the First Responders to be familiar with your child in the even of any emergency (accident, fire, etc.).  Children can be intimidated by them so it is crucial that they understand they are there to help!

If you need some assistance in that area please check out what Jerry, a New Jersey Police Officer and father of an Autistic boy, has to say.  You can see his page here and his blog here.  He wrote two amazing posts about wandering and police contact that you simply must see that he wrote for Autism After 16.

Surviving the Wandering Nightmare

Well-Informed is Well-Armed: Easing Police Response to Domestic Incidents

AWAARE has many awesome tools and is loaded with information to help families and first responders.  You can access their website here.  They do have the Big Red Toolbox but they have digital tool boxes as well.  I would definitely check out their Wandering Brochure for information about wandering and tips you can use to prevent wandering and to prevent a tragedy in case wandering does occur.  You can access the brochure here.

To help you stay organized in your planning you can use the Caregiver Checklist here.

The first one I want to toss out there is a Family Wandering Emergency Plan.  It can be used for any family member who may wander off.  It helps you prepare ahead of time in case your child wanders off so that you know what to do.  It allows you to come up with search areas and people to search those areas, emergency phone numbers, what to provide when you call 911, and it gives you other numbers such as NCMEC.

This form can be found here.

The second form is for you to give first responders and is an Autism Elopement Alert form.  This form is used by those first responders to give them identifying information, a photo, and areas where your child may be found.  It includes medical diagnosis, medications, if they are verbal or non-verbal, their preferred method of communication, etc.  This form will help pull much needed information together in one spot to aide in helping your child be found quickly.  Take this form when you go to meet them!

This form can be found here.

You can find all of their safety materials including the toolbkits for Caregivers and First Responders here.

In speaking from experience, please be prepared!!

**Editor's note: This is meant to get you started.  Please talk to your local Autism groups and First Responders to get additional safety and preparedness tips and resources for your child.**

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.

Our Great Summer Wrap-Up

It's been a couple of months since I've posted.  We have had one heck of a busy summer...  The past few months have been full of changes for us.  Some are for the better, some were simply devastating, and some just were.

Our summer did not start well, as many of you know.  We lost my Grandmere the first week of June.  That was one hell of a week...  Not even a month later my Aunt went into the hospital with stomach pains and while she was in there her husband (my Grandmere's son) went in after having a heart attack.  He ended up needing open heart surgery.  While he was recovering my other grandmother went into the hospital with chest pains.  This was followed by my own collapse in early July while the latter two were still in the hospital.

Crazy right?

We are all now on the mend and mostly recovered, thankfully.  We got to a point where we were about to ask the hospital for a 5th floor multiple room discount. ;)

For six weeks this summer we had the opportunity to send Sparky to a social skills camp run by the agency where we receive our BSC/TSS services.  The camp was run by our former BSC/Mobile Therapist who recently left our case.  We weren't really sure how he would do but were hoping for the best.  On day 2 of camp he was already asking to stay home next summer and not attend any camp.  This did not bode well...

Turns out it was wildly successful!  He ended up having a great time and made a few friends in the process.  I was really excited when on the last day of camp he received his first phone call from a friend! YAY!!!!  It was hilarious to listen to and made me realize that we need to work on his telephone skills. BADLY... Haha!

Sparky also went on his longest trip away from me!  He went with Grandma to visit my sister for six days.  If you've been on my page recently you'll know that it was a recent trip and it went quite well!  While he was off visiting his Aunt I participated in a weekend race across Lake Erie.  Oh, what fun that was!  After I returned I was thankful for the extra two days of peace before the kiddo came home so I could recover.  Sleep was not something to be had on that trip!  ;)  When he came home he barreled into me like a football player and nearly took me off my feet!  He was so excited to be home again.  He walked through the house and (naturally) tracked down each cat to greet them and tell them how much he missed them.  I'm not sure they missed him nearly as much as he missed them, but ya know... ;)

This summer also saw the end of my engagement to Strike.  He's still around as he is still important to us but the split needed to happen.  We still care about each other but it was just something that was a long time coming.  It was a really hard decision but it is for the best.  Sparky handled it quite well and seems to be none the worse for wear.  He also understands that Strike is still available if he wants to talk to him and he isn't completely gone from his life.  I think that helps a lot and has made all the difference in how he's handled this split verses how he still hasn't fully recovered from my split from Ears many years ago.

Now we sit here looking at the future!  The kiddo starts sixth grade this year (who told him he could grow up????) in middle school and I start a new job in our home school district.  I'm also going to be starting rehearsals soon for my next show now that I have the time again.  I can't wait!  My older sister (the last of us to make such an announcement) has finally made it public that she is due in January!  I'm extremely excited about this and I so can't wait! BABY!!! :D

Things are finally looking up for us as we prepare for some pretty major changes.  I'm really excited for what is to come and I can't wait to see where the road leads!  School starts a week later this year on Sept 2nd which means we have an extra week to enjoy summer!!

Now I have to figure out what exactly to do with it...  I had all these plans to visit different parks and museums but now time is running out.  I think we'll stick with the local zoo, baseball games, and the beach for now.  :)

Good luck with your back to school adventures!

 Here he is squeezing the bejeebes out of me and my face upon his return home. Ouch!!

How Dare You?!

I have rage.

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

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

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

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

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

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

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

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

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

Let's recap.

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

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

Why the Hate?

Every June around Father's Day I see something I never see around Mother's Day: dad hate.

It always gets to me.  I can't understand how women - moms - can harbor such hate towards someone who is simply absent.  There's an amazing amount of resentment being flashed about as if some great injustice has been served.

I'm lost on just where exactly this injustice is.  It appears dads don't feel the same way.  Or at least have the decency to keep harsh judgement to themselves.

As you all know I cut ties with Sparky's father around the time he turned two due to some reprehensible comments he made around that time that were deserving of my withdrawal for my son's protection.  We still have not spoken since and he has certainly not shown any interest in the kiddo's life.

If anyone deserves condemnation it's this guy...  He dragged me through the wringer, levying threats against me and the baby like he was discussing the weather, even threatening my mother.  He is the lowest of the low.  So much so that the courts revoked his rights.  That's pretty damn bad...

Yet you won't hear me condemn him or wish him ill will.  It's pretty obvious he was in a place where he was not ready for the thought of having a child even though he was approaching his mid-20s.  That's ok.  That doesn't earn him any forgiveness for what he said (for there is nothing that will ease danger of having your child's life threatened) but it doesn't mean I will sit around and bash him at every opportunity either.  I have certainly never said a mean word about him around the kiddo, even after Sparky realized that he really did have a father (thanks to the school...).  I simply told Sparky that he had no interest being a father to him, and that was that.  All Sparky had to really say about it is that it was "ok" because he didn't think he was missing out on anything anyway.  And he certainly isn't!

Many of these moms that I see bashing the father of their children all have men who ARE PART of their children's lives.  This boggles my mind....  As a mom with a dad who is 100% absent I just can't wrap my head around it.  How can they be so mean and upset with someone who CHOSE to stick around and help raise their children with someone who is apparently ungrateful and unforgiving of them?  These are dads who try to do what is best for their children but are stomped on and foiled every step of the way by women who are seemingly out to seek revenge.

I don't get it.  If your children's father is trying to be an active part of their lives and actually be a dad to them, why stop them?  Why make it hard for them?  Just because the two of you didn't work out for whatever reason (and the reason really is quite irrelevant when it comes to caring for your children) doesn't mean he can't be the awesome dad anyone would want their kids to have.  Period.  Remember, at one time you did think they were worthy.

Fortunately, I do have a couple (literally a couple) friends who apparently see the way I do.  Their ex is a less than desirable human being to them and they were greatly wronged, but they recognize that their ex is one hell of a dad to their children and embrace them being around.  I salute their clarity.

Even if it is just for one day, why not stop to take a moment to appreciate all that your children's father does for them (and you).  Take a moment to be grateful that they actually WANT to be a part of your kiddos lives and care enough to make the effort.  To me, these guys deserve an award because they go up against every stereotype and do their best to break down the barriers to be there for their children.

So here is my call to action for you moms: for one day, appreciate all that he does, even if you loathe his very presence, appreciate and be grateful for the mere fact that he is willing to do what he can, however he can, to be there.  It doesn't matter if it fits your mold of the quantity of time or the frequency of his visits.  Just appreciate that at least sometimes he is there.  You'd be shocked at how far a little gratitude and genuine thankfulness can go.