If the Van Is a Rockin’… Ethan’s Just Stimming … or Slapping Around Idaho

Ethan rocks. He rocks hard.

Many of the people who meet Ethan or spend only a small amount of time with him are surprised when they hear of his problems. They are often taken aback by the revelation of his ASD diagnosis. He rarely shows any tics or outbursts. He can hold a very intelligent conversation with someone for an extended time. He makes eye contact. He is OK touching someone, so shaking hands is not a problem for him. He does not act out in these brief visits. Ethan can hold it together. This is one of the many ways in which I admire him. I know how hard it is for him to do all of these things. I can always see them, but I’ve been reading his body language for thirteen years now.

I remember taking Ethan to a psychologist. It was his first visit with someone who works with Autistic children. Melanie and I went in first and spent quite a bit of time relaying Ethan’s history, his successes, and his struggles. There were roughly five minutes left when we came out and sent Ethan in. When the doctor returned with Ethan, we asked if he saw anything. He went on to list five or six things he noticed in less than five minutes.

Ethan flaps. He flaps hard.

As an infant Ethan rotated his wrists and ankles often. I called him a motorcycle rider. The frequency and the intensity of this did give me cause to worry. I mentioned in another post that I repeatedly asked Ethan’s pediatrician(s) about it. My favorite phrase will always be, “He will grow out of it.” I’ll be sure to mention this to Ethan the next time I talk with him. When he was five, we visited a pediatric neurologist; she stated these were stereotypies. She assured us that he would grow out of it.

A stereotypy (/ˈstɛriː.ɵtaɪpi/, “STAIR-ee-oh-TEYE-pee”) is a repetitive or ritualistic movement, posture, or utterance. Stereotypies may be simple movements such as body rocking, or complex, such as self-caressing, crossing and uncrossing of legs, and marching in place.

A History of Flapping

I will try to relay these in order, but truly, it’s very difficult to remember in which order these came.

  1. Flapping his hands: Ethan continues to flap his hands even today. Below is an example of Ethan’s hand flapping. He is watching Home Alone, and as you will see, quite enjoying it. This clip is actual speed.

    (Ethan was taken to the hospital the next night for suicidal threats. His medication had been changed 1 week prior.)
  2. Flapping a blade of grass: The summer prior to Ethan’s Kindergarten year while at the beach, Ethan began to pick long pieces of beachgrass and flap it. This continued through his Kindergarten year of school where he would pick a long blade of grass and flap it during recess/lunch or any outside free time.
  3. Flapping a piece of paper: Ugh. I’m not sure exactly when paper flapping began, but it was not a welcome addition to the house. One piece of paper would be torn into a strip roughly an inch or two in width. He would then painstakingly tear the paper into an elongated Idaho. He flapped it while holding the south side of Idaho. Everything else was strewn about the house, but Ethan had his own private Idaho(s).

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    The original strip

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    The final “flapper”

  4. Flapping a pamphlet: Ethan graduated from paper to a trifold pamphlet, but it had to be the right pamphlet. He would pick one up, give it a flap and give it a yea or nay vote. At my school we had pamphlets in both English and Spanish. The pamphlets were exactly the same except for the ink color. He would only accept one of them. I even did a blind test on that one. He knows what he needs. I have tried to get him to show or to explain to me the process, but it is entirely a sensory experience for him. The problem with the pamphlet was the incredible abuse of someone’s wasted money. Sure, no one was ever going to look at most of the pamphlets we picked up for him, but I told Melanie that it made me uncomfortable and even discussed having my own printed for Ethan’s use. Luckily he moved on, but the South Carolina Welcome Center probably found themselves down a few pamphlets when we traveled with Ethan to and from Whetstone Academy.
  5. Flapping laminated paper: Unfortunately at my school, we have a laminating machine that is housed in my media center. This thing is a toxic nightmare, but what a tragedy if your classroom door sign wrinkles or falls off the door. I have tried to explain that it was cheaper to print multiple copies than to use the laminator. Environment? I’ll let them know when they autopsy me and find my lungs nicely laminated. Wow, that was a tangent. So, when someone runs the laminator there is often a woeful waste of plastic. It was easy to stick a strip of paper in one of the honking hole between two index cards.  Luckily this phase didn’t last long.
  6. Flapping a folded piece of duct tape: Duct tape can fix anything. It didn’t last long for Ethan.
  7. Flapping a piece of paper: For now, Ethan has returned to paper. It’s roughly 1/4 of a sheet of paper folded into a strip about the width of the one above. This time no Idaho.

Ethan can rock without flapping. Ethan cannot flap without rocking. When he was younger he would stand in our kitchen with his back, really his butt, against the wall, his feet forward while rocking from the waist. He would at times rock at nearly a 90º angle. We could here him muttering elaborate stories under his breath. If we asked him what he was doing, he would say that he was telling himself stories. I only wish that I had access to those inner workings. He no longer seems to be having this internal story telling.

When Ethan is most excited, I cannot help being drawn into that feeling.  His body rocks, his arms and hands flap and he is working that paper. He does this thing with his nose as well. His excitement and happiness literally shakes his body. Sometimes, however, the rocking and flapping don’t indicate excitement or happiness. These behaviors increase with anxiety. Flapping tends to fade away when he’s sad. While Ethan is not always able to express his emotions correctly, his body language can be learned and interpreted. It’s important to read the situation before stepping on a mine.

So, the next time you are stopped at a stoplight or in a parking lot and the car next to you is rocking, it might just be Ethan stimming.

Self-stimulatory behavior, also known as stimming and self-stimulation, is the repetition of physical movements, sounds, or repetitive movement of objects common in individuals with developmental disabilities, but most prevalent in people with autistic spectrum disorders.

I have consistently supported Ethan’s rocking and flapping as a coping device. I, however, have told him that people will make fun of him. And people have. And he continues to rock and flap, and I’m OK with that.

I’m Mentally ill and That’s OK

I am mentally ill. And that’s OK.

Do not run from me or shun me. I’m like the bee or the snake or the spider. I’m more afraid of you than you are of me.

I’m bipolar. I’m depressed. I am on the Autism Spectrum. But you can’t catch any of these from me because I have a case of social anxiety that keeps me far away from strangers. Oh, and they aren’t contagious. I promise.

Mental Illness has a stigma attached to it because we allow there to be. We perpetuate these myths. We hide behind curtains and lurk in the shadows. I am crazy, psycho, and batty.  I belong in the loony bin or the nut house. I’m wacko and weird. I’m sick in the head (not just sick). In fact I could be any of 250 labels that the National Center for Biotechnology Information found in a study. I shall lock myself in the belfry never to be seen again.

IMG_0954When I was first diagnosed with bipolar disorder, my doctor said he would word things differently in my records if I was worried about the stigma associated with Bipolar Disorder.  I am not hiding. I am not embarrassed. Things aren’t working right in my head. I’m sick. It can’t be fixed, but it can be treated and I can and do live a “neuro-typical” life. I am not the happiest person in the world, but there surely are extenuating circumstances at the moment.

When Ethan was at Strategic Behavioral Center, Melanie and/or I visited him every day. When they called us back to visit, they used Ethan’s initials (E.K). The employees communicate in code by walkie-talkies. All must remain behind the curtain.  Visiting someone in the psychiatric wing of a hospital is difficult.  There’s secrecy and security. No phones. No keys. Metal detectors. No names. Do not share your roommate’s illness. It feels a little like the pregnant teen from an older generation who goes off to visit an aunt for six months. After all, no one wants crazy in the family. Check out the World Health Organization’s 10 Facts About Mental Illness.

If I go to the doctor, they call me back by name. They call me Mr. Kline or William. Even if I have the flu or a venereal disease or pink eye. Even if I’m contagious. Even if I can get you sick. You don’t care. No one worries about being called back. Everyone gets sick, right? No one is embarrassed to sit in the waiting room or to visit you in the hospital. The body is sick. In our world, the brain is not part of the body unless it is housing a tumor.

I am willing to share my diagnoses. My illness should not reflect on my family, and frankly, I don’t feel ill.

A few years ago, I fell into a funk.  Lots of bad things happened in a very short period of time. Ethan’s original diagnosis was made, my grandmother died, my nephew was diagnosed with brain cancer, my father was diagnosed with bladder cancer, and two of my college friends (Bill and Buddy) died in accidents.  It’s strange how hard the deaths of my friends affected me. I had not seen Bill in many years.  Travel was and is nearly impossible with Ethan, and no one is truly capable of keeping him for an extended period of time without some training. So, time passes and connections are missed, and then it’s gone. I heard of Bill’s death first, but in reaching out to his friends, we found out that Buddy had been killed.  Double whammy. I still find myself thinking about it. And as much as I love my grandmother, I rarely think of her. It’s still hard for me to wrap my head around it. Maybe it’s because of they were my age. Buddy stayed with me once a year during the summer and somehow no one contacted me when he died. The whole experience made me feel disconnected and helpless. (I touched on Buddy  a little in this post from another blog.)

When all of these started to affect my family, I sought help. I went to a doctor and started seeing a therapist. The doctor encouraged exercise and I did.  I exercised every day for a year.  I lost 25 pounds. And yes, I started taking medication.

Medication

Here’s the problem with medication. I began taking medication to treat bipolar symptoms. Better living through pharmaceuticals. It made a huge difference, but I miss my highs. I don’t miss the lows, the anger, the stomach churning, but the periods of pure elation are gone. Since then, it’s been trial and error. Ethan’s situation complicates everything. My “happiness” corresponds to his, and he is not often happy. I can’t sleep at night and end up crashing during the day, occasionally only an hour or so after waking. And there are side effects and drugs that counteract the side effects. I had to make tough choices with medication. You either open up and give it shot or try to handle things in different ways (therapy, meditation, diet (apparently gluten is bad for everything)). I reached a point where I needed to try anything. Medication and therapy have allowed me to manage throughout this entire process. And it is manage. Each day still remains a challenge.

Therapy

I’m not sure how I initially felt about therapy. I always thought it would be kind of cool, sort of like getting my future told, or in a Woody Allen kind of way. As it turns out, surprise, surprise, it has proven to be helpful, quite helpful, and I can’t really tell you why. I suppose it’s as simple as having a sounding board or someone from out of my personal sphere telling me hard truths or just providing different points of view. I have no need to argue with her. I have no desire to argue with her, and I do like to make my point, and I do like the last word. In these sessions those things are non-issues. It is also good to be able to make your therapist laugh, or laugh at you. I feel that she should have a good time. Who knows what sort of weeping and distress she has dealt with in a day.  And I’ve said in this blog before, and I continue to tell anyone who asks, it is important to maintain a sense of humor. We do have disagreements about our definitions of pessimism and realism. Apparently, I’m always seeing the negative outcome to situations. I tell her that if a negative situation is likely to occur, it is realistic to view the world that way. This is not the best of all possible worlds.

Here is an example from one of our sessions:  Here’s the situation: Driving on the belt line in Raleigh, an Interstate running around the center part of Raleigh.  It’s pretty much a fenced in 4 lane road. I see a dog on the side of the road. What will happen?
OK. How am I supposed to answer this in a realistic way? The likely outcome is that the dog won’t make it. I won’t go into the idea that trying to avoid the dog could result in an accident.  And depending on the time of day, a multiple car accident. Even though this is the likely outcome, I should have envisioned a positive outcome. Here’s what I’m supposed to try to envision. A friendly farmer sees the dog and pulls off the road. He gets the dog in his truck, heads out to his farm and  the dog lives happily ever after. With Old Yeller.

I prefer to remain realistic. I know that I can live a normal life. I know that Ethan can live a *normal life. On Ethan’s first day of school, I told him that he needed to work harder than everyone else.  The fact is that he does, and to this point, he hasn’t reached a point where he can live a *normal life.

But he can.

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If you are in the world of mental illness, you are aware that I should’t use normal. I should use neuro-typical, but let’s give people some credit. If you read this to the end, you understand that normal is simply a term that we use for neuro-typical. Personally, you can say I’m not normal or I’m not neuro-typical. I don’t care.  Does this make me normal?

How to Beat the High Cost of Living (with Mental Health)

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How much?

If you read through this blog, you will come across many of the intangible costs of mental illness. (As a reminder, Ethan is diagnosed with Autism (Asperger’s), Bi-polar Disorder, Generalized Anxiety Disorder, and OCD.) Today, however, I’m going to talk about monetary costs.  We have a fundraiser on the GiveForward site.  Even if you cannot donate, stop by the site and give Ethan a virtual hug.  He enjoys seeing these when I visit him. It hurts me deep down to do what is tantamount to begging, but I have swallowed my pride for my son.  This is why.

Expense Frequency Estimated Cost Total
Psychiatrist 2 to 4 per month $30 to $70 per visit $60 min.
Psychologist 1 to 2 per month $30 to $70 per visit $30 min.
Medications 5 medications varies $135
Travel Expenses (Gas) 4 visits per month
128 miles per visit
$2.60 per gallon $61
Tuition monthly $5000 – $12,000 $5000 min.
Lawyer hourly $100 – $150 $1002
Educational Consultant monthly $250 $01
Parent Navigator as needed $150 $1503
approx. $5540

1 We have talked with our lawyer multiple times. At this point we have not been charged a fee. We will begin using his services in the next couple of weeks. He has capped his cost at $1000.
2 Upon investigating schools that would take Ethan, educational consultant tore up contract. She told us that the cost of the school will be so much that we need to save all of our money for that.
Basically she’s doing all of this for free.
3We have employed a Parent Navigator to help us with the transition from Alexander Youth Network to public school. She was amazing. Without her, I don’t think we could have managed the whole process. She has proved to be an invaluable resource. We may or may not require her use in the future. The cost is pure estimate as it is based on the service required.

This is, unfortunately, a lowball estimate of monthly costs. Ethan’s first therapeutic boarding school was in South Carolina. And though we were unable to visit as frequently as we would have liked, the costs of travel were much higher.  The school is about 350 miles away.  We would visit for a weekend. That meant two nights in a hotel and all meals on the road.  Rather than $60 per month, travel was roughly $500 per visit.

That brings us to the fundraiser.  It’s been amazingly successful for us.  We’ve raised nearly $5000, but as you can see above, this will likely not even cover one month of expenses.  Our friends, coworkers, and family have all been amazingly generous. Now it’s time for me to rely of the kindness of strangers. And I have a severe case of Stranger Danger.

There’s No Season Like Flu Season in New York: Happy Thoughts/Funny Memories…(for those who are still reading)

Melanie told me that I had to write something upbeat.  That’s been hard for me lately as I have been in a bit of a funk.

Here we go.  An amusing anecdote for you…

IMG_0201For Christmas 2006, we went to New York.  Ethan was fascinated with the city and specifically the Empire State Building.  Asperger’s usually results in a fixation on one thing.  At this point it was NY. So, we packed up the car, popped Breckin in her car seat, and Ethan in his booster and the rest is history.

Both Melanie and I worked that day and had to prepare lessons/assignments etc. for the next day.  We were leaving one day before school let out for break.  This is frowned upon, but with our principals’ approval we carried on.  We were traveling from Youngsville, NC, and there’s really not a great way to get to I95 from here.  We headed north on the backroads of NC and VA towards Richmond.  It was much later in the day than we had planned, dark already.  So our plan to avoid some traffic and make up some time with the state highways backfired immediately.  It actually snowed, and we had cold weather, below freezing weather.  Those roads were unfamiliar and unfriendly.   Shortly after entering Virginia, Breckin “spit up.” At that point I looked at Melanie and said, “It’s not too late to go back.”  She assured me that it was nothing and we went on, eventually stopping overnight in Maryland.  Breckin had a few more “spit up” incidents.  We had one last chance to turn back.  We didn’t.

We arrived in New York and met Melanie’s mother at our hotel in Times Square.  Melanie got to experience me driving around NYC.  There really wasn’t a problem until we arrived at the hotel and had a “you can’t there from here” moment.  To this day, I’m not sure how we actually found a road that would get us there, but we arrived safely.  Breckin who was 6 months old at the time, seemed to be feeling a little better.  That was a relief to all of us.  The events, the sites, are jumbled in my mind.  It’s been awhile, but I do remember the highlights.

Melanie, Ethan, and I headed out to the Museum of Natural History.  Ethan enjoyed his subway experiences.  He has since asked for a pet rat.  We bought our tickets and in we went.  There was (is) a little snack bar right past the entrance.  Ethan said he was feeling a bit off.  We bought him a drink and sat there for a minute.  He seemed OK, so off we went.  We arrived at the elevator to go up.  Ethan had other ideas.  As the elevator was about to open up, Ethan threw up.  He threw up good.  It was almost like one of those fake vomit scenes from movies.  It was ugly.  Melanie took care of Ethan and I tried to take care of the mess.  We were eventually shooed along by an employee who looked none to happy about her upcoming task.  I would have finished cleaning up, but if Ms. Sunshine tells you to go.  You go, rays of sun burning the back of your head.  Melanie came out of the restroom with Ethan, left him with me, and went up to the entrance to see if we could get refunded.  Despite being inside for roughly 20 minutes and viewing only one exhibit, the aforementioned snack bar, we were out of luck.  In their defense, the museum did provide us passes for another visit that we knew then, as we now, will never be used.  So what, 60, 70 bucks, not a disaster.  Little did we know that we would be paying over $5000 a month in tuition for a residential therapeutic boarding school about 7 years later.  Of course that seems little compared to what we will likely be paying beginning in the next few months.  But that’s a downer.  Let’s move on.

We now look back on our museum outing as a positive one.  Ethan was able to see a rat, ride the subway, vomit in one of the most famous museums in the world, and take his first taxi ride.  Obviously we took a taxi back to our hotel.  All we needed was a subway full of very unhappy people to make our day complete.  Instead, adding to our wonderful day, Ethan threw up in the taxi.

Eventually both Ethan and Breckin recovered.  They were able to visit the giant Toys’r Us store which made Ethan incredibly happy.  Sometimes I think back and try to figure out where Ethan’s addiction to toys and legos, specifically, began.  I’m sure a toy store large enough to have rides didn’t help.

More than anything else, Ethan wanted to go to the Empire State Building.  Through our hotel we purchased passes that would allow us to bypass the line, like a Fast Pass at Disney.  I haven’t mentioned Ethan’s Autism here, but one thing you need to know is that patience is not a strong point for Ethan, and a quick Google search will attest to this as a common symptom for Autistic children.  Throw in a heaping dose of anxiety just for good luck. Ethan, even at this young age (4) before he started exhibiting increasingly severe behaviors and tics, was ripe for a meltdown if he had to wait in line.  So we arrived in the evening for a nighttime view.  We flashed our passes and got a ‘so what’ response.  Ugh.  We spent the next hour trying to placate Ethan and there is nothing to do.  Nothing.  Luckily, between Melanie, Melanie’s mother Mary Lou, and I we were able to trade off.  Don’t forget that Breckin was 6 months old at the time.  Despite that, Ethan was our biggest worry.  I’ll go into my many mental health issues at another time, but social anxiety is near the top of the list. The very idea of a scenario that draws attention towards me sends me into a sweat soaked nightmare.  An Autistic child tends to provide me more times to practice these situations than I would like.  So we spent the whole time trying to keep him happy and interested, promising the pot of gold at the end of the rainbow.  Just ten more minutes.  Just 5 more minutes.  All on Eastern Dad Time.  Finally we made it to the point where a worker made his way down the corridor checking on tickets, maybe.  I’m not sure if everyone had tickets at this point.  I don’t think so.  Whatever the reason, when he reached us and saw our passes, he asked, “Why did you wait in this line? You have these passes.”  How do you feel at that point?  I was angry, frustrated, justified, but mostly I just wanted to cry.  Every minute of the wait can be a lifetime with Ethan.  Of course, now that he is off in a residential placement, I would give anything for those small lifetimes.

After we made it in, Ethan was as happy as I’ve ever seen as can be witnessed by the picture above.  I made a quick circuit, holding Breckin so close that I’m sure she was uncomfortable.  I’m afraid of falling.  I’ve discussed that on my other blog before.  (If you wish to review, you can read it here.)  So I quickly went inside the safe and warm, if not uncomfortably so, gift shop.  Ethan, Mary Lou, and Melanie took their time and enjoyed the view.  I tried not to look out.  Of course, we exit through the gift shop and Ethan must have a gift.  This time he gets a little statue of the building.  Is this where his addiction to things began?  Now when we plan a visit to a museum or zoo or aquarium or wherever, he’s always excited.  But his first question is, “Can we go to the gift shop?”

The Empire State Building visit was clearly one of the highlights, if only because everyone was healthy.  We were scheduled to head home on Christmas Eve.  I am strongly opposed to spending Christmas outside of my home.  I mean, how will Santa find us?  I know that the Tooth Fairy constantly forgets to stop by.  So Christmas Eve it was.  In the wee hours of the morning, which must be wee because that’s when I always wake up to go to the bathroom, I heard unwanted sounds emanating from the bathroom.  There was no one next to me on the bed.  Oh no, no, no.  I went in to check on Melanie.  Oh yes, yes, yes.  Long drive home a coming.

We woke up early to leave.  Mary Lou had to catch her flight, and we wanted to get back to make sure that Santa had all that he needed.  I woke up and I knew it.  I had it.  I could feel it.  Melanie was gradually coming around but still quite sick.  The kids were fine.  We were heading out and going as far as we could.  Melanie wanted to drive, but I insisted that I drive us out of the city.  Once we were on the NJ Turnpike, we switched.  Not while driving, but at one of the rest areas.  I wonder how it must feel to have a rest area named after you.

As Melanie drove, she was slowly improving.  I was not slowly improving.  Not improving at all.  We made it to Maryland where everything happens.  We stopped at a rest area, but for some reason I think that ended up being more difficult than it should have been.  Is there not a welcome area? Maybe it was closed.  We had to drive further.  I was like the Grinch.  My stomach grew 3 sizes that day.  When we reached the rest area, I asked Melanie to park in the back where the buses park.  This was it.  This was now or never.  It was that moment where you are leaning over the toilet, or in this case the parking lot of a rest area, when things tip.  I no longer don’t want to vomit.  I had not wanted to vomit for hours.  I reached the tipping point.  I was ready to do my time.  The following is not a lie or even a bending of the truth for effect.  This was the real deal.  A tour bus of mostly Asian (maybe all Asian) tourists chose the wrong side of the tracks to park.  As it pulled in, I let it fly.  Live in technicolor.  Welcome to Maryland.  Hey, Maryland–William Kline Rest Area.  Has a nice ring to it.

Ethan had complained of his legs hurting while we were in the city.  At that moment, I understood. I now knew what achy meant when related to flu like symptoms.  But this wasn’t ache.  This was pain.  I wasn’t alone.  Melanie ached along with me.  We eventually made it home that evening.

Santa brought Breckin a large doll house that year.  Hurray Santa.

‘Twas the night before Christmas and all through our house
Not a creature was puking or starting to grouse
The stockings were hung on the staircase by a chair
In hopes that our dogs would stay out of there.
The kids drank Nestle’s and went off to bed
Mom and Dad rested and wished they were dead.
Melanie in a blanket and I almost collapsed
Had just settled in to instructions at last
When what to our exhausted minds should we see
A page that we missed, that damned part C
The pages were flying starting to billow
I tossed my tools and screamed into a pillow
The coffee pot filled to the brim oh so slow
A caffeine infusion might soften the blow
When suddenly I felt it, an ever growing fear
Santa won’t make it, not for this year
But with a little coffee and a carrot stick
I went back to the job and it need be quick
Oh how the seconds swung round and round the clock
The sun will be shining, ’tis just up the block
“Now lock nut! now small bolt! now big screw then little!
Oh crap! So stupid! this f*%#ing stuff so brittle!
To the side of the tree by the the one that is green!
Now tylenol, now motrin, and much more caffeine!

“Here dogs, eat these cookies.”