Strategic Behavioral Center–Garner, NC: A Visit

It’s Friday, May 29, 7:00 PM and I’m sitting in a small conference room with a table that seats roughly 12 people.  I’m meeting with my son Ethan, my first visit in 3 days.  At the beginning of my visit, there was another father and son at the table.  As my visit was ending abruptly, a third patient entered with parent.  That’s six people at a conference table of 12.  This is less than ideal for meeting with my son in a mental hospital, but that’s just the way it is.

Our meeting started with the normal hugs and “how are yous.”  His mood, as mine, was a bit sedated by the lack of intimacy provided by the hospital.  I shared a card that his sister had made.  He expressed an appropriate amount of happiness, but it was clear that he had other motives for our visit.  Here’s the thing.  Ethan has to have.  I mean he has to have everything.  He has to have it now.  The one thing that we have learned is that we cannot give him anything for any reason other than necessary (clothing, food) or gift giving holidays (Christmas, birthday).   Even writing this, it sounds cruel.  But trust me, you just don’t know.

“You’ll be proud of me, Dad,” he began.  “I thought it over and I decided I wouldn’t talk about Dave and Buster’s.”

Ethan is addicted to spending money.  Arcades are crack for Ethan.  He can spend money and he can get things.  The kid nearly explodes from excitement, a quick rock, a lean forward, a wiggle of his fingers by his nose excited.  You see, Ethan is autistic.  He was diagnosed with Asperger’s Syndrome when such a thing existed.  Since then various doctors have labeled him different things within what is now the Autism Spectrum.  So whether it’s PDD or Asperger’s, Ethan is Autistic.  So, his statement that he didn’t want to talk about Dave and Buster’s, the Chuck-E-Cheese for the older crowd, was a positive one.  However, there was no reason for me to believe it.  Friday is “store” day for the Strategic Behavioral Center* patients.  Throughout the days/week, the patients earn points.  The points are awarded based on what seems like some random decisions, but one which the hospital claims is a reward for positive behavior.  To an outsider and a skeptic like me, it seems like the almighty Dumbledore standing is the dining hall of Hogwarts awarding points to Gryffindor for stopping dragons from destroying dessert.  On this day, Ethan proudly and with an out of place excitement showed me a small container of styling wax, his store purchase for the day.

“Mohawk, gel!”  He described in detail the container and the packaging and how to use it.  I have no doubt that by tomorrow it will be gone, not used, just gone.

As I said before, Ethan has to have, and the hospital has given.  It is a reward system.  Everywhere there is a reward system.  Rewards are good if they are earned.  For Ethan, non-tangible rewards work.  Tangible items simply throw fuel on the fire.  And Ethan’s fires burn.  They burn hot and they burn fast and they simply suck the oxygen from the room.  Ethan needs more fuel.  “What about pick-a-brick?” he says, referring to purchasing Lego bricks from the Lego store.

“No, Ethan.”

I can see the frustration building.

“What about Dave and Buster’s…”

Visit over.


Helter Skelter

Rust Cohle: Look. I consider myself a realist, all right, but in philosophical terms, I’m what’s called a pessimist.
Martin Hart: What’s that mean?
Rust Cohle: Means I’m bad at parties.
Matthew McConaughey as Rust Cohle and Woody Harrelson as Martin Hart in True Detective

Sometimes things go wrong. Sometimes things go very wrong. And sometimes, well…

FullSizeRender 5

The future’s so bright I gotta wear shades.

I have previously written about the kindness of strangers, but there is a reason I approach life realistically. Like the quote above, many people consider it pessimism. People can be good, and people can be bad, and people can just let you down. If you think someone is good and they pull the rug out from under you, a realist approach to the world knows this was possible. A pessimist might think that it was inevitable. An optimist must pull his head from the sand, shake off the grains, and try to avoid devastation. But even for a realist like me, the story below both knocked me down and lifted me up proving that we live on a spectrum: sometimes people can be very good, even if it sometimes seems most aren’t.

Several months ago we were amazed when the education consultant (Erica Mackey*) we hired told us to tear up our contract. She said she couldn’t charge us because Ethan’s case was so incredibly complex that wherever he was placed would be so expensive that we would need to save every penny for tuition. She would continue with our case at no charge. I was surprised but not shocked at how difficult it was to contact her over the next couple of months. She was out of town or washing her hair or sick or… We hired her in June. In August she told Melanie that the case was too difficult, and while she would remain a resource, she could not continue with our case. We spent exactly 0 dollars, so monetarily we suffered no loss. Time, however, is something altogether different. We lost more than 2 1/2 months when we could have been more thoroughly searching on our own or hired someone else. Time cannot be recovered. I expected a placement by the end of this month at the latest, and now we are, for all intents and purposes, starting over.

There’s nothing particularly wrong with being more pessimistic than optimistic. Optimism is broad-based, non-detail-oriented thinking; pessimism is detail-oriented thinking.
David Rakoff

We also mentioned the generosity of the lawyer (Mark Trustin*) with whom we are/were working. He intended to cap his fees. Mr. Trustin was more than generous with his time, speaking at length with Melanie on the phone. However, it became more and more evident that he did not remember Ethan’s situation from one conversation to the next. I’m sure he is busy, but Ethan’s case is so complex, so difficult, it’s hard to believe that he wouldn’t retain some of the information. These warning lights went from yellow to red when his offer to cap his fees also escaped his memory.

That’s OK. Again, we have only lost time, right? Another lawyer was highly recommended, “the best.” We knew that she wouldn’t come cheap, but at this point we wanted to make sure things went smoothly and quickly. When we tried to contact her (she is based in Wilmington, NC), we discovered that she had moved–to Alaska. So, we are again in an ever frustrating game of phone tag with a few more lawyers.

And as for educational consultants, things seemed as if they would proceed a little more smoothly. We simply contacted the one who is considered “the best” in our area, understanding there are not many in our area. Again, phone tag. When we finally made contact, we discovered that she has been recovering from eye surgery. We are still trying to figure out our next move. At what point does phone tag morph into phone hide-and-seek?

Ethan has been at Youth Focus for nearly three months.

I think even the most optimistic of optimists might be knocked back a step or so.

School has started. Melanie and I have returned to work. Those summer months when we could have (should have) been scouring, instead of searching, the Internet in search of options have passed. We were let down, and now we are scratching and clawing for time, those two months that were excised from our summer. Including the money that has been donated outside of our GiveForward fundraiser, we have raised just over $13,000. This is incredible, but with our new found expenses, we may be lucky to break even in lawyer and educational consultant fees. While I’m sure everyone is aware of the costs associated with lawyers, the cost of an educational consultant is unfamiliar. The average cost is around $4,000. The eye surgery consultant has been described as “expensive.” This could mean a fee of $7,000 dollars or more. Yikes.

A few days ago a friend of mine, Laurin, suffered a great loss, the death of a parent. What did she do? She asked that, in lieu of flowers, donations be made to Ethan’s fundraiser. With all of our recent setbacks, it is almost impossible to fathom the incredible generosity of someone who, in the midst of grief, put others needs above her own. There are no words that can express our resulting emotions. At the visitation, when we were there to support the family, the family took the time to support us. The mother and aunt of Laurin took the time to talk with us, to hug us and to talk with us about Ethan. Thank you doesn’t seem enough.

*I generally do not identify people by name unless they have made a positive effective on our lives. I do not mention these names for any reason other than to provide substance to our experiences. Everyone has different experiences with professionals. Ours, while not negative, proved to be very frustrating. Even the best intentions can result in negative consequences. We are grateful for every bit of help and advice we have received from professionals in the areas where we are seeking assistance.

Twitter: @ethansnotalone  #ethansnotalone

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.”