Bathroom Videos: No Tolerance Update

A couple of weeks ago, The Man and I had to put our foot (our feet?) down and say no more bathroom videos.  I was extremely worried about the suddenness and severity of our decision, but there was no going back — I could only hope for the best, and merely wonder how we would handle anything else.

You know what?  So far, so good.

He hasn’t tried to sneak the iPad in anywhere, and in fact, has dropped the habit of bringing it along everywhere, except to Grammy’s for his weekly sleepover.  He will still head straight for the bathroom whenever we stop somewhere, but that’s completely fine as long as he’s not recording anything.

The obsession with toilets themselves is still alive and kicking, but has abated somewhat, replaced to some extent by Teenage Mutant Ninja Turtles.  I can’t complain about that a bit.

I’m more than a little surprised at his response, and cautiously hopeful that this will not return to bite us.  Here’s hoping!

A First: Saying No to an Obsession

Obsessions are a part of autism.  And most of the time they are at least benign (like Sonic the Hedgehog), if not something we parents wish to encourage towards a future career (like computers).  Usually, we tolerate the obsession until we ourselves become experts, learning about every type of car dome headlight that is made on the planet.  Sometimes we have to limit the time we talk about cats for our very sanity.

But I have never before had to say no to an obsession.

363px-Decorative_toilet_seatSeveral years ago, The Boy had an obsession with toilets.  He went through a period where he learned just about every brand of toilet, and would watch YouTube videos of toilets flushing all day if we let him (and yes, there are lots and lots of YouTube videos about toilets, if you didn’t know).  And after awhile, as most obsessions do, it petered out, replaced by something else.

And after his visit to his dad’s this spring, The Boy’s obsession with toilets resurfaced, as obsessions sometimes do (especially after infrequent visits with his dad).  But this time, he graduated to an obsessive (almost compulsive) desire to experience real live toilets.  He would spend hours in the toilet aisle at Lowe’s (if we let him), and at the Habitat for Humanity ReStore.  He began to take his iPad into the bathrooms at home and at Grammy’s to videotape them flushing.  And then he began to take his iPad into public restrooms, when empty, to videotape them, as well.

He seemed to understand that it was not OK to make videos when other people were in the restroom, but that necessitated our waiting until the coast was clear, which was not always easy.  And then the obsession intensified so that he would need to see and/or video every toilet at every stop we made in a day (and if you’ve read the blog at all, you may remember that The Man stops in quite a few convenience stores in a day to refill his diet coke or to pee, the only vice he has).

And then a few weekends ago, we spent $50 to take a ferry ride to a nearby National Park site (The Boy’s idea so he could “visit” the toilets there), which resulted in a meltdown and another ferry ride back within the hour.  I didn’t even get to the beach.

I began to plan a reduced amount of time where he would be allowed to do this, which I knew would be painful.

And then we had another incident this past weekend. And we had to just say no more.  No more videotaping of toilets in public restrooms.  We were in the car a couple of hours from home, so he couldn’t run away, and couldn’t really rage too much.  He is a better listener and communicator in the car. He wasn’t happy, and I wasn’t comfortable with the complete elimination, knowing it would be a very difficult transition for him.  But he seemed to accept it by the time we arrived home.  “I can take pictures with my invisible camera and save them to the cloud,” he said.  “Or you could take them with the camera in your mind and just remember them,” I offered.  He seemed to like that.

The Man and I were cautiously hopeful.

The next day, the Boy expected to be able to go videotape some bathroom again, and again I told him we weren’t going to do that anymore.  He still didn’t like it.

“I guess I’m not interested in that anymore,” he said angrily.  And my heart broke a little.

I know his interests are a part of him, and by saying “no more” it is hurting him.  But he is a big kid now, taller than me, and people out there are not as patient with tweens as they are with the cute little ones.  I just don’t trust that someone won’t call the cops on him for being creepy.  We have explained that to The Boy in the simplest terms, and I hope he is starting to understand, but there’s really no way to know.

So far, it hasn’t been a daily battle, but I think it will be tougher on the weekends, when we are out and about.  I know we need to try to “replace” this obsession with a new one, too, but that is much easier said than done.  So this will be a struggle for us, and we’ll just have to see how it plays out.  It’s a first for all of us, and no fun for any of us.

When Work Sucks

I love my job.  I love being busy, I love having some responsibility (and a title).  I love being a leader in the office.

But there are aspects of my job that are really just too much, sometimes.  I have quite a background in educational leadership and administration which actually isn’t a far cry from business management.  Simply put, a good leader is a good leader, and good management practices are good management practices.  And it is still easy for me to identify examples of bad leadership and management practices, too.

I work in a culture of blame, and I hate that.  Good leaders use mistakes to help guide people to better work, and to help create better procedures.  Poor leaders point fingers and end up making good workers wonder why they work so hard, or even quit.  Two people walked off the job this Sunday.  Two, of an office staff of six.

Today, I busted my behind, trained two new employees, handled a million phone calls, and even booked some private charters.  I went home feeling pretty good about the productive day I had.  And about an hour after I got off work, I got a phone call from my boss, asking me about something at work which he clearly felt was a mistake I had made.  I had not made a mistake, but in his mind, he had to blame someone, so it was me.  And instead of feeling good about being productive and working hard today, I end up with a sick feeling in my stomach this evening about his perception of my fault, even though none existed.

More and more, every single day is stressful, and that means I have less to give when I get home at night, which is absolutely no good.

Jobs are hard to find.  In five months of searching last year, I got very few calls for interviews, and only one real offer.  Do I consider leaving?  Yes I do.  Definitely on evenings like tonight.

How do I deal with it?  My boys.  I spend time with my family and they make me laugh.  It may sound clichè, but they remind me why I am really on this planet.  It’s not for other people’s kids, and it’s most certainly not to take reservations for boat trips.  It is to love and spend time with my guys.  Yes I need a job to pay the bills, but my job is the small stuff as compared to The Boy and The Man.  Remembering that is how I deal with the rest.

Behavior Really Is Communication

Behavior is Communication.  This was one of the tenets of autism I learned early on.  I remember sitting in a workshop with my then-husband, who really just didn’t get it, and this was the key piece I walked away with – I already knew it, but the workshop had reinforced it, and I had hoped my then-husband would have an a-ha! moment, but it never came.

The ex has now cancelled on The Boy for his week of visitation next month, and I broke it to The Boy late last week.  He had equated this planned trip to his dad’s to the escape plan of the tank fish in Finding Nemo, and would talk about how he was looking forward to seeing whether or not the escape plan would work.

Well it didn’t.

And at first, The Boy seemed OK.  “I guess the escape plan didn’t work.  I guess we’re stuck in the tank,” he would say.  I knew he didn’t really feel like he was stuck here with us, but that the plan fell through.

As the weekend wore on, and we began to witness more teenager-y behavior (refusal to do things we asked, etc.), it took my mom pointing out to me that this behavior was probably coming from the cancellation of plans.  And I had a Doh! moment.  I should know better, because of that basic rule, BEHAVIOR = COMMUNICATION.

Of course, that explains why he was being such a jerkface this weekend!

It’s still a sore subject, but figuring it out has helped The Man and me gain a little perspective, and retain a little more compassion for him right now.  Sometimes it’s hard to be compassionate to someone who is being a jerkface, but The Boy is still just a kid, and a kid who has been cancelled on again by his dad.

“I knew this escape plan wasn’t going to work.  Do you remember me telling you that before?”

:(

 

 

Autism and Arthur

Last Wednesday, I told The Boy that a hurricane was headed our way, and there was a possibility we might leave town for the following night.  Immediately, I regretted my carefully constructed, nonchalant approach – he was scared.  “A hurricane??” I explained that it was really just a bunch of wind and storms headed our way and that the power may go out, so The Man and I were thinking about heading out of town for a night to stay in a hotel which would have wifi and power, so we could be comfortable until the storm passed.  He visibly calmed until I added that we might pick him up from camp instead of Grammy because we might head out of town directly from there.  Change in routine equals added anxiety.  Oops.  “We’ll see,” I said.

We watched the Weather Channel religiously that night, and started to get anxious ourselves.  It began to move quickly, it began to slightly move inland, it began to look like it was going up to a Category 2 by the time it would hit us, and it was expected to make landfall exactly where we live, which would mean loud scary sounds, and a definite power outage if nothing else.  By Thursday morning, we were sincerely leaning toward heading out of town.  I had to head in to work for a few hours, and then we would make the determination.  Grammy would pick The Boy up as usual, giving us time to board up the shed and make preparations at our place.

After I got home from work, The Man and I looked at each other and didn’t need to say a word.  We packed some things, grabbed the important papers, secured the back door, and headed to pick up The Boy.  Most people in our area head west, but they jack up the hotel and gas prices as you head inland, so we head south, because even though it is into the storm, it’s usually less severe down there and you don’t have to give up your first born for some A/C and a bed.

Well Hello, Arthur

Well Hello, Arthur

 

We headed into bands of driving rain and wind, and pulled into a hotel about a hour and a half down the coast.  We ran up the stairs to our room and began to dry off and settle in.  And then the real challenge began.

The wifi was broken, he said.  When the iPad finally found the signal, it was too slow, he said, and he started to get agitated.  “Let me see your iPad, to see if I can fix it,” I said.  He refused.  He began to pace, and head toward the door.  He put the iPad onto the floor, none too carefully, and even stepped on it.  “I am DONE with this iPad.  We need to sell it and get a new one.  This one doesn’t WORK!”  He went to open the hotel room door, and I had to use my body to block him from doing so – none too easy anymore, now that he is 2 inches taller than me.  “We need to leave.  We need to go home,” he whined, over and over.  Reasoning doesn’t work at this stage, I knew, but I tried it anyway.  “There’s no power at home, let alone wifi, Bud.  Let’s decide on something to eat for dinner.” He would not be dissuaded.

Somehow, we finally convinced him to go with us to get some dinner, maybe we promised ice cream.  I don’t really remember.  His mood lifted as he was able to check out the toilets at the Wendy’s around the corner, the only place that seemed open.

We headed back to the room, where the wifi finally seemed to work well enough for his tastes.  We ate, watched TV, and got a good night’s sleep. In the morning, we returned home to find downed branches everywhere, but our house was  intact, and the power eerily came back on just about the same time as we walked into the house.  He was home, there was power and wifi, and he was happy.  The storm was over.

An Open Letter to the Mom in the Doctor’s Office Today

I overheard your friend (daughter? niece?) reading to you from that questionnaire today, and I took notice because of all of your “no” responses. I immediately remembered those soul-crushing, developmental, yes or no questions, the mix of defensiveness and hopelessness when you begin to understand just how far behind your little one is.

“Does your child point to an item s/he wants? Does your child turn pages of a book independently? Does your child say three words?…”

And on, and on, and on. I heard the tone of your voice change the more she asked. I heard you begin to whisper. I glanced at your face to see if you might cry, but you were holding it together. I guessed the tears may come later when you are alone, maybe before you fall asleep tonight.

And I watched your little one. I watched him smile, and observe the other children playing – he was watching close, but something was keeping him from playing along. He looked at me and made eye contact. I waved and smiled. He smiled bigger and looked to you for reassurance, but you didn’t notice.

I wanted to say, “This tall, gangly boy of mine sitting next to you didn’t do any of that stuff either. We had to use flash cards to teach him words. He didn’t point at anything.  They thought he was cognitively impaired because he played with the toys wrong.  But you know what? He is the best speller in his class and uses words like ‘misheard’ and ‘eclectic’ as an almost-seventh grader!”

I really wanted to say, “These questionnaires are a special kind of torture for us, and you are most definitely one of us. You are not alone.  Don’t discourage too quickly.  Be hopeful, because he needs you to be. I have been in exactly that spot where you are sitting and it is awful, but better days are ahead. Believe in that little boy.”

But I didn’t say anything because I’m not sure I would’ve wanted anyone to do that when I was in your place. Maybe I should have. Instead, I hope you get the support you need through this process, and that you realize quickly that he needs you to just do what you gotta do to get him as close as you can to where he needs to be.

And that there are lots of us rooting you on, even if silently from the chair next to you in the doctor’s office.

My little blond boy, once upon a time...

My little blond boy, once upon a time…

This One or This One?

As part of the “Wishing Away the Autism” debate, one of the posts I read argued that we show too much of a positive side of autism to the rest of the world, and that we need to share more of the horror stories, that we, the autism community do ourselves a disservice by showing the nicey-nice stuff because people are less likely to support funding for research and resources if autism “doesn’t look all that bad”…

Well.

Which is clearer?

Sounds like a sales pitch to me.  I guess I just don’t have patience for anything less than the truth, which is why I share the good, the bad, and the ugly on this blog.  So that others on a similar journey, or even one that is not similar in the least can share in my hope, commiserate with my frustration, and celebrate our milestones right along with us.

We are all people.  When you focus on showing society that autistic children and adults are real people, you will have accomplished something.  No one wants to be sold a bill of goods.  No one wants to see  one side of the story.  So why would we, the autism community, even try to do that?

Write and share your experiences, take those photos and plaster them all over your facebook wall, and bring those kiddos with you everywhere you go.  By doing so, you are showing that our little ones (and not-so-little ones) are a part of society, that they are human, that sometimes they need help, and that in many ways they are just like everyone else.  THAT is advocacy.  Participating in society, carving out a place for them, even where they don’t quite fit.  THAT models for the rest of society how our kids should be treated, THAT will show them why we need funding for research and resources.  THAT tells our own kiddos that they have a PLACE in our society, and THAT creates self-advocates, which is the name of the game.

 

Wishing and Hoping and Praying…

Question Mark Graffiti by Bilal KamoonRecently, I read a blog post by Autism Daddy, and response to that post from another… all centered around the old debate of whether or not you would take your child’s autism away if you could.

And I didn’t respond.

This has become a hotly contested debate, replete with comments like “Anyone who says they haven’t ever wished their child didn’t have autism is LYING!”

Here’s the thing.  Autism is a spectrum disorder, and often co-morbid with many other diagnoses.  Those with children on the severe end of the spectrum probably voice this wish every single day, and who could blame them.  And maybe there are some who even wish it every day for their child on the less-severe end of the spectrum.  You know what?  That’s OK.  That just hasn’t been my experience – it’s not me.  Never has been, and never will be.  Nor do I judge anyone else’s feelings – they are all valid, even if I personally think following this line of thought is a monumental waste of time and energy.

I believe that everything I have experienced has made me who I am today.  I will admit that there are times I wished I had never been married to the ex, but they are extremely fleeting because my next thought is, “But then I wouldn’t have The Boy.” And that ends the line of thought right there, because I couldn’t imagine my life without him, and don’t want to.  I also wouldn’t have met The Man, and wouldn’t be who I am and where I am today without experiencing that relationship with the ex.  Ultimately, it has made me a better person, even if I was miserable for most of that marriage.

And I have always been one to handle a situation rather than freak out.  Instead of running around like a chicken with its head cut off in an emergency, I have always tried to quickly lay out a plan.  “OK, that happened, now here’s what we do…”

I can’t imagine my son separate from his autism.  If you took it away tomorrow, I would have a stranger living in my house.  I doubt he’d love Disney movies as much as he does, and he might prefer playing XBox to drawing and making videos and riding his bike like he does now.  He wouldn’t be as innocent, or as willing to hug me.  Would he even have the same sense of humor? Who knows?  Not me.  But he would be different.  I like him the way he is.

That doesn’t mean that our experience with autism is all rainbows and lollipops, and you know this about us if you read this blog at all.  We are lucky not to experience too many meltdowns, but when we do, they are catastrophic.  We deal daily with issues like “How do we get him to not bring his iPad into a public bathroom, and record video while other people are using it?  How do we get him to understand that saying, ‘What IS it?’ with a sarcastic tone of voice could be thought of as rude? How do we help him get over this obsession with toilets, for God’s sake??”

I have said before that I would love to know him better, and that’s my biggest frustration with autism.  I fear for his future like every special needs parent does.  And I fear society, and how he will be treated as he gets older, and as more expectations are placed on him to conform.

But never have I wished away his autism.  It is the honest truth.

And never will I judge another parent who has.

Like a Smack in the Face

It happened at about 8:15 this morning, and as I write this almost 12 hours later, I am still in disbelief.

The Man called me at work and asked if I had a minute to talk.  “Uh oh,” I thought.  He proceeded to tell me about his encounter with the mobile home park owner where my parents live.

First, some background.  The Boy goes to Grammy’s during the day while we work in the summer, and gets dropped off there after school during the school year.  He likes to walk along the drive that runs by in front of the trailer, always barefoot.  When cars come, always extremely slowly because a) they are mostly old people who live there, and b) there are 101 speed bumps on the half-mile of drive around the small park, he gets off the road to let them pass.

Today, the owner told The Man that we need to keep our “retarded kid inside.”

Yup, you read that right, word for word.

He then backtracked and told The Man that he couldn’t “play” on the road.  He could play on the empty lot at the bend in the road a few doors down, but he couldn’t play in the road because he had gotten complaints, and he had almost been hit by several cars.

Ironically, a sign like this is posted at the entrance to the park...

Ironically, a sign like this is posted at the entrance to the park…

Seemingly unaware of how many laws he had already broken, he went on to provoke The Man even further, and continued to use the r-word even after The Man had corrected him.  I’m amazed this guy didn’t end up in the hospital.  The Man handled it like a rockstar, and ended the conversation before he could get into trouble.  He, too, is still livid 12 hours later.

I got off the phone with The Man and realized I felt like I had been punched or smacked in the face.  I read a recent post by Autism Daddy where he wondered where all the hatred was.  Apparently it lives down here.

The Man, Grammy and Poppy and I are all seething with anger and injustice, but like smart people, we are devising just how best to deal with this worthless human being.  Grammy has a speech prepared for the next time she encounters this poor excuse for a man, and we will have to see how he responds and go from there.  His intent is to piss us off enough that my parents will move out, and his “problem” will be solved.  But you know what?  They aren’t going anywhere.  And The Boy will continue to walk where he pleases.  We won’t engage with this jackhole, and we won’t be threatened or intimidated.  He went so far over the line that he has absolutely no recourse now but to shut up and go away.  Anything else will be met with quick and swift response from us, and it will not end well for him.

I’m interested to see what will happen next.  You?