Fear of Change And the Unknown

Autism-Puzzle-PiecesOne of the things we’ve gotten used to as parents of a child with Asperger’s Syndrome is schedules.  NHL will get very anxious if he doesn’t know what is coming up.  Ideally, he prefers to have a schedule that he can follow along with.  To a child with Asperger’s, there’s nothing more frightening than the unknown.  Except maybe change.  His routine is comforting.  It is predictable.  There is much about the world that makes no sense to him, but at least he knows that his routine won’t change.  If it is going to change, NHL requires presetting to let him know ahead of time and to prepare for the change.  Changing his schedule on the fly is a recipe for disaster.  It has only been a couple of weeks, but the fixed schedule of middle school seems to be helping NHL.  He knows exactly what classes he has on what days and at what times.  (Yes, he memorized his schedule just a short while after he received it.)

As a parent with Asperger’s Syndrome, I sympathize with NHL’s need for a plan.  I don’t necessarily need a schedule in front of me, or even a concrete sequence of events that will take place, but I like to have some "anchoring" points that I know will happen.  Given that plans can change in an instant, I tend to "anchor" around meals.  No matter what happens, chances are we’ll be eating breakfast, lunch, and dinner.  We might shift from a home cooked meal to eating out to taking food in, but it’s still a meal.  The time of the meal might change from noon to one to two thirty, but that meal will happen.

As far as change goes, I’m tolerant of it to some degree.  The more change that happens, though, the more anxious I get about it.  I try to stay positive and expect the best, but change is scary.  The more changes stack up, the more my brain starts filling in the blanks with worst case scenarios.   Of course, the more this happens, the more my stress levels rise.

It seems that recently my life is increasingly filled with uncertainty and change.  My stress levels have been climbing and I’ve been feeling on edge.  There are days when I just want to scream and run for a quiet corner to hide in.  Obviously, I don’t.  I find some way to cope for the moment.  I delay my melt down or distract myself from the big, scary changes.

Perhaps that is why I’ve gone a bit Perler bead crazy lately.  It’s a simple, structured activity.  Place this color bead here and then that colored bead there.  It ties into my geekiness – I’ve made Doctor Who, Harry Potter, superhero, and Star Wars related projects.  Best of all, it gives me a final product relatively quickly – I can take a small Perler bead project from start to completion in an hour.

Still, despite my escapes, change continues to loom large over me and threatens to push my coping skills past their breaking point.

Do you find change and the unknown to be exciting or scary?

Sleep and Fear

I really need to call the doctor.  And, unfortunately, I don’t mean a time travelling Gallifreyan with a blue box and a sonic screwdriver.  (Though meeting one of those would be nice.)

For the past few months, I’ve been tired. It seems that no matter how long I sleep, I still feel like I haven’t slept at all. I’ll spend an entire night having dreams that tire me out, and wake up feeling like I haven’t slept at all.  What’s more, B has mentioned that I’ve been making noises in my sleep like I’m gasping for air.  She also mentioned that I’ve been kicking a lot.  We’re fearing sleep apnea.

So, like I said, I should see a doctor.  And yet, I delay.  Part of it is that money is tight so I prioritize everything and everyone else above me.  I rationalize that this can’t be that serious so why spend money on it?  That money can go towards repairs we need to make on the house or on items we need to buy for the kids.

Of course, if I’m being honest, there’s another part of me that’s not addressing this because I’m scared.

I’ve always had trouble breathing through my nose.  Years ago, I had an operation to get my turbinates cut back.  I was supposed to have a deviated septum operation at the same time to help my breathing, but the insurance company denied it.  (They claimed that part was for cosmetic reasons only.)  Still, I went through with some of the surgery.  Going into surgery was fine.  Waking up with my nose plugged up and a tube in my throat wasn’t.

Years later, after a horrid bout of nosebleeds, I had my nose cauterizedTwice.  The nights I spent awake because my nose was swelled shut and the dripping felt like it was going to close my throat off as well was horrid.

Obviously, neither experience is one I’d like to repeat, but I’m afraid that the doctor will tell me that surgery is needed.  I’m afraid that it will cost money we don’t have.  I’m afraid that I’ll end up spending long nights exhausted but awake thanks to the after effects of the procedures.

I’ll call the doctor eventually.  I know I’ve got to stop rationalizing and avoiding.  When my kids are afraid of something, I challenge them to face it head on because things are rarely as scary as our minds make them out to be.  However, when confronted with a frightening prospect, I avoid the situation just like they do.  So I’ve got to summon my courage and make the call.  Not for me, but to show my kids that they need to see a doctor when something’s wrong and that they need to face their fears.

NOTE: The "Emoticons: Sleeping face" image is by nicubunu and is available from OpenClipArt.org.

Diagnosis, Asperger’s, NHL and Me

Autism_Awareness_RibbonA few months ago, I mentioned having some big news.  Huge news.  However, I couldn’t share it at the time.  This led to some people wondering what it could be.  Well, after many weeks of keeping quiet about it online, we’re ready to reveal what it is.  But first, some history.

About five years ago, when NHL was only four years old, we wondered about whether something was up with him.  He didn’t seem to fit in socially like the other kids did.  He had trouble if a routine changed.  He would have fears way beyond what is age appropriate.  We went to one doctor after another and kept getting different advice.  Nothing seemed to help, though.

The closest we got to a good diagnosis was that he was gifted (IQ of over 135), but even trying to address his supposed boredom in the classroom didn’t help.  NHL was still yelling in class, cutting up paper, running around the classroom, freaking out whenever his routines changed, and more.  The teacher tried to be patient with him, but she had to teach the other kids as well.  Besides, we feared that he was painting a huge "Bully Me" target on himself with his actions.

Finally, at the end of our rope, we went to a neuro-psychologist.  She went to NHL’s class and, without him knowing, observed him for three and a half hours.  Then, not too much later, NHL met with her one on one for about four hours.  The report she put together from these meetings and observations was long, comprehensive, and difficult to read.  Within its pages, we read of kids moving their desks away from NHL, kids rolling their eyes at him and calling him weirdo, and other socially isolating events.  NHL, with his actions, was doing just what we feared.  He was isolating himself and making himself a target for bullying.

The good thing about the report, though, was that we finally had a diagnosis.  NHL was diagnosed with Anxiety Disorder and Asperger’s Syndrome.

On the anxiety front, his fears would come upon him so fast and so strong that there wasn’t the barest hope of him keeping them in check.  The best I can describe it would be that he pictured the worst possible outcome in his head.  Then, once that outcome was imagined, he would assume it was certain to occur.  Next, he would totally freak out including yelling, stomping, running away, etc.  It didn’t matter if we were at home, if he was in a classroom, or if we were in the middle of a store.  His fears could be based on school work (homework was a half hour scream-fest) or a super-massive black hole destroying humanity.  Thankfully, new strategies have helped him calmed down a lot and we can head off his fears before they turn into full-blown panic attacks.

When it comes to Asperger’s Syndrome, it’s not a "condition NHL has" as much it is "a different way that NHL’s brain works."  NHL loves schedules, order, and routine.  He doesn’t like it when this gets disrupted.  Loud sounds or people getting in his space can make him uncomfortable.  (He’ll cover his ears when entering a public restroom in case the electric hand dryer turns on.)  He has intense likes (Math, computers, superheroes, etc) that he wants to share with everyone whether they like the same things or not.  He can tell you how a person should act in a given social situation, but when theory turns into reality, he has trouble knowing what to do.

In fact, many social interactions are tricky for him to navigate.  In the past, he’s been naïve enough to not recognize that his social "awkwardness" was isolating him, but he’s quickly realizing it now.  He’s a kind kid and loves helping and being a friend.  When kids don’t want to be his friend, ignore him, or tease him, he feels hurt and doesn’t know how to express this or remedy the situation.

He’s now getting help learning to cope and deal with social situations.  People with Asperger’s have to learn how to navigate the world at large.  His challenges aren’t as great as those of a child with a more severe form of Autism, but he still needs to learn the rules of the neuro-typical road.

For those who don’t know the phrase, Neuro-typical is the word used to describe people who aren’t on the Autism spectrum.  Never use the word "normal" as it insinuates that someone with Autism is some sort of freak.  We aren’t freaks,  We just have a different way of thinking.

Yes, I did say "we."

in my "I can’t share this yet" post, I said: "This news is so big that it has rattled my very idea of who I am."  You see, as we were reading more and more about Asperger’s, I kept stopping and remarking about how that sounded so much like me.  One example: People with Asperger’s tend to think in an If-Then manner sort of like a computer.  One of the reasons I make such a good computer programmer is that my brain basically works just like a programming language is written!

Growing up, I had a lot of trouble with social situations.  I never felt completely natural in them.  To me, it seemed as though everyone had gotten the Social Situations Complete Guide while I got the Cliff Notes edition.  I wanted to be social, but didn’t quite know how.  I always pictured it as wanting to be in the spotlight, but feeling highly uncomfortable when that happened.

I always figured that I was "socially stunted" by the bullying I went through.  After all, my reaction to being bullied was to withdraw from the world.  The less that I showed to the world, the less the world had to bully me with.  After high school, I tried very hard to tear down those emotional walls and open up.  To this day, though, I still struggle with it.

Maybe my social awkwardness wasn’t a result of bullying, though.  Maybe, it was due to Asperger’s.  Back when I was growing up, Asperger’s wasn’t diagnosed.  I didn’t have the options that we have for NHL to aid him with socializing.  Of course, the bullying didn’t help, but perhaps all these years I had it backwards.  Maybe my social awkwardness was something that the bullies picked up on and used to target me.  Maybe my quest to "be normal socially" was completely misguided because I wasn’t neuro-typical at all.

At first, this saddened me.  Was there an upper ceiling beyond which I couldn’t top no matter how much I tried?  Was all my hard work over all these years for nothing?  Should I just give up and say "Asperger’s" whenever a social situation had me stymied?

For awhile, I wasn’t sure what the answers should be.  Then, I heard someone mention that Asperger’s doesn’t define us.  I can’t give up on growing as a person just because I have Asperger’s.  It will always be a challenge I deal with, but it won’t be the only thing there is about me.  And, with luck, I can use my Asperger’s experience to help NHL avoid some of the pitfalls I fell into.

NOTE: The Autism Awareness ribbon icon above was created by Melesse and comes from Wikimedia Commons.

How I Faced My Fears At Disney World

FaceFearsBack in May, during the Disney Social Media Moms Celebration, we heard a lot of great speakers.  Specifically, Lisa Druxman talking about gremlins on your shoulder stuck with me.  Given that I have a fear of falling – not heights, mind you, but falling – I decided to knock that gremlin off by going on four rides that scared me.  Yesterday, I posted photos of me on the rides.  Today, I’d like to share some details.

Expedition Everest

No matter how strapped in I am, I’m always worried that I’ll somehow fall out on a turn.  Yes, it’s a ridiculous fear, but fears are rarely logical.  So I went onto Expedition Everest with NHL feeling very nervous.  For those who don’t know, Expedition Everest is a climb up Mount Everest that gets stopped when the elusive Yeti breaks the tracks ahead of you.  Then you plummet backwards around and down and through some dark tunnels.  In the end, this ride wasn’t too bad.  The backwards part was disconcerting as you couldn’t see where you were going, but at least you could see where you had been.

Verdict: Not too bad. I would go on it again.

Rock ‘n’ Roller Coaster Starring Aerosmith

NHL was nervous about going on this one, but decided to be brave and go on it with me (and B and B’s father).  I told him how proud I was of him.  I didn’t really know what to expect with this one.  This is an entirely indoor rollercoaster that takes place in the dark with Aerosmith music blaring.  I prepared myself for the dark twists and turns, but what I didn’t prepare for was the start of the ride.

After getting in the car, you approach and stop at a red light.  If this were a normal rollercoaster, you would slowly go up a ramp before the ride sped up.  Not this ride.  Once the light turns green, you go from 0 to 57mph in under 3 seconds.  That isn’t a smile on my face.  It’s my face being pushed back by the acceleration.

This ride was much worse than Expedition Everest.  Being in the dark made every turn almost completely unexpected (some neon signs provided clues) and thus triggered my fears with every twist.  This ride also had a few moments where you are upside down – a BIG no-no for my fears.

Verdict: I’m glad I went on it… but I’m not going to ride it again.

Tower of Terror

I’ve actually gone on this one before.  When NHL was five, he was determined to go on the ride.  I couldn’t let him show me up, so I went on it also.  When it was over, the only reason I was able to get off was because I knew, if I didn’t, I’d be riding it again.

For those who don’t know, the Tower of Terror lifts you up 13 stories and then drops you.  This isn’t it, though.  The drop is random.  You might plummet 10 stories, you might only go 5.  You then go back up and down about seven times – with each rise and fall being randomly determined.  This means that the ride is different every time.

This also plays right into my fear of falling.  After all, the whole point of this ride *IS* falling.  So, knowing what I was in for, it took all of my courage to go on it again.  Every time we went up, I could have sworn I left my internal organs below and every time we dropped I felt the terror rising.

Verdict: Not.  Ever.  Again.  I proved that I can go on it (twice) and now I’ll focus my energies on other, tamer rides in Hollywood Studios – like Toy Story Mania.

Space Mountain

This ride is similar to Rock ‘n’ Rollercoaster in that it takes place in the dark.  Whereas Rock ‘n’ Rollercoaster had some neon signs to look at, Space Mountain had nothing.  You couldn’t tell where you were or where you were going.  You could tell when you went into a turn by being slammed one way or another.  There was no other warning at all.

This was possibly the worst ride.  Even with Tower of Terror, you knew what was happening.  At the bottom of a drop, you were likely going up again.  At the top of a rise, you would soon plummet.  With Space Mountain, there was no such signal.  Plus, I rode Space Mountain after eating a huge dinner at Boma.  Not a good ride to go on when your stomach is overly full.

Verdict: I’ll stick with the People Mover from now on, thank you very much.

In the end, I’m glad that I faced my fears.  Now, I won’t be quite as likely to let my fear get in the way of trying something out.  However, when it comes to these rides, with the possible exception of Expedition Everest, I don’t think I’ll be going on them again anytime soon.

Disclaimer: We paid for our own trip to Disney World to attend the Disney Social Media Moms Celebration.  Though we were given an incredible deal from Disney, they never asked us to blog about this event. All opinions expressed above are my own.

Wordless Wednesday: A Face Your Fears Follow-up

Background: Back in May, during the Disney Social Media Moms celebration, Lisa Druxman’s speech led me to try to face my fear of falling.  To do this, I vowed to go on four rides that terrify me: Space Mountain, Rock ‘n’ Rollercoaster, Tower of Terror, and Expedition Everest.  Here is photographic evidence that I went on those rides.  (I’ve blurred out all of the faces except for mine and my family’s.)

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Disclaimer: We paid for our own trip to Disney World to attend the Disney Social Media Moms Celebration.  Though we were given an incredible deal from Disney, they never asked us to blog about this event. These photos were taken by the ride and given to me as part of Disney’s Photo Pass Plus, which we got as part of the event.  All opinions expressed above are my own.

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