Oh! The Places He Goes

Here’s a quick rundown of Ethan’s schools/placements/hospitalizations.  Unfortunately Ethan goes through schools the way Hogwarts goes through Defense Against the Dark Arts instructors.  I will discuss his placements as this blog continues.

1. Wake Forest Elementary–Wake Forest, NC K-1

2. Forest Pines Elementary–Raleigh, NC  2-3+ Holly Hilly Hospital

3. Bridges Program 3ish UNC Children’s Psychiatric Hospital

4. Aldert Root Elementary– Raleigh, NC 3ish -4ish

5. Whetstone Academy–Mountain Rest, SC

6. The Wright School–Durham, NC

7. Alexander Youth Network (AYN)–Charlotte, NC

8. Wakefield Middle School–Raleigh, NC

9. Strategic Behavioral Center–Garner, NC

10. Strategic Behavioral Center–Garner, NC

11. Youth Focus–Greensboro, NC

Imagine going through this as a so-called “normal” person.  Could you handle it?  I think it’s amazing that he has been able to get through this with all of his diagnoses.  I hesitate to call Autism or Asperger’s an illness as many do not believe that it is. Whether or not someone considers it an illness or not, it is called a disorder and the symptoms of it can cause serious issues navigating the world.  Luckily, Ethan’s Autistic behaviors are not as severe as many others.  Unfortunately, his other diagnoses (currently: Bipolar, Anxiety, Depression, and OCD and DMDD, Tourette’s, ADHD have all been discussed and diagnosed at one time or another) have been complicated by Ethan’s autism.  I think I’ve said this before, but it seems as if placements treat mood or Autism and not both.  Ethan is a complicated little boy.  But I love puzzles, and I will continue to work my hardest to bring him home.

If you know someone who is Autistic, appreciate all that the parents do that you will never know.

Thanks for following our story.
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Catch-473 Paying for Mental Health Care

Medicaid or Catch-22, I Mean 473
Medicaid is a tricky thing. It is surely abused, but I really don’t follow those stories. In North Carolina it is being “overhauled.” You can figure out what that means.

Here is our problem. We can pay our bills. We don’t qualify for Medicaid because we make too much money. That’s fine. We have paid for two hospital stays and countless doctor, psychologist, and psychiatrist visits. Medication for all of us. The stress and anxiety have taken their toll. Breckin, our daughter, regularly sleeps in our room. Melanie has broken down in tears. I have my own issues, many of which I share with Ethan, and these events have affected me as well. We’ve travelled six hours to visit with Ethan when he was at Whetstone Academy in Mountain Rest, South Carolina. We paid for a hotel for the weekend and to go out for meals. We paid for 9 months at a therapeutic boarding school (thanks to a more than generous loan from my father).
So what to do when Ethan’s school, the only state funded therapeutic boarding school, recommends that Ethan be placed in a psychiatric residential treatment facility or PRTF. Well, get this. You can’t go to a PRTF (we were told) unless you have Medicaid.  That isn’t actually true.  If you can afford to pay out of pocket or your private insurance will pay, then I suppose you are golden.  We can’t get Medicaid because we make too much money and pay our bills. We are both teachers with advanced degrees and national certifications so we can make ends meet most months. We asked one of the PRTFs we visited what the cost was. His response was,“Don’t ask.” Finally we were told $501 (actually it’s $473) per day. OK, so that’s about $170,000 a year. It’s safe to say we don’t make enough money to cover that, but we do make too much money to get Medicaid which we need to pay for the $473 per day treatment. This is still difficult to wrap my mind around. Why are there facilities that require medicaid to get into when we have a medicaid system designed only to aid those who cannot afford to make basic bill payments. I am not really resentful of the situation, but we are the middle children of the mental health system. We have the wealthy who can drop $7000 per month for a residential boarding school or $40,000 for a couple of months of wilderness camp, the poor who are eligible for Medicaid so that they can afford to send a mentally ill child to a $473 per day facility. Then there is the majority. We can’t get medicaid for the $473 per day treatment. We can’t drop $16,000 for 4 weeks of wilderness camp or afford more than a month or two of a multi-thousand dollar a month boarding school.
But if anything, we are tenacious. Phone calls were made. Meetings were attended. People told us one thing; others told us something else. Sometimes these were people working for the same location. We applied for Medicaid but were turned down. We applied again and were turned down. Melanie did the grunt work on this, taking any free time to try to track down with whom she should talk. It is that difficult. No one knows anything. Anything about anything. If they do know something, they are likely mistaken, often sending us on unhelpful tangents.
Oh, but we found a loophole. Yes we did. It’s simple. Ethan simply had to be living out of the home to be able to be eligible for Medicaid. So, all we had to do was get Blue Cross/Blue Shield (the State Health Plan of North Carolina) to pay for one day at the PRTF. Well, they wouldn’t do it. But in a case of deus ex machina, it turned out that somehow, someway, we could be approved for Medicaid if Ethan were out of the home by the end of the day he was approved. He was accepted at Alexander Youth Network (PRTF) and granted Medicaid on a late Thursday morning in August 2014. We had to contact the Wright School so that they could have him ready to leave that afternoon. We had to pack his things, pick him, up and drive 3 hours to the location so that he could be there by midnight. We had a good hour or two to spare. Good guys win.

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I Fought the Law Part II

Ethan Gets a Cab Ride

The transportation to and from the Bridges school is by “cab.”  This seemed surprising to me until I learned that by cab, they meant an SUV operated by a local transportation service.  I learned from my brother, who at the time worked as a special programs teacher, that the cab services could be extremely unreliable.  We were, however, lucky.  We were assigned a cab through one of the more reliable services.  Ethan had a regular driver, more or less, who showed up on time.  This isn’t true of all of the services.  We do have stories.

We established a schedule with the transportation company. Ethan was picked up at my school between 7:45 and 8:00 and dropped off at a shopping center behind an Olive Garden between 4:45 and 5:00.  Ethan rode with me to my school in the mornings, meaning he was waking up around 5:45 AM.  I picked  him up at Olive Garden in the afternoon. That’s an incredibly long day for anyone, much less a kid with Ethan’s issues.

Children with Autism Spectrum Disorder struggle with unannounced changes.  Ethan is no exception.  He needs time to prepare for something new, even something fun.  He is knocked back by even small changes, and so when one day the afternoon cab arrived with a substitute driver, well, you can kind of guess where this is going.  Sometimes things just come together, a sort of perfect storm.  This was one of those times.

At some point between 4:30 and 4:45, Melanie received a call from the cab company.  I will try to relay here the facts.

1.The cab driver called.

2.Ethan had done something.

3.The cab could not continue its route.

4.We needed to pick him up.

5.The substitute driver was unfamiliar with the area, so he was unable to explain exactly where he was.

6.We were unable to succeed in contacting the company’s dispatch to get more information.

There was clearly a lot of miscommunication.  Melanie was not able to clearly understand the message.  What we knew was that he was out of his seat.  The driver was required to stop the cab at that point.  They were in a parking lot at a car dealership.  We weren’t sure whether we were to go get him, and if we were, where we were supposed to go?  This was panic time and I usually don’t panic.  We were finally able to ascertain that Ethan was at a Leith car dealership on Capital Boulevard. You have to live in the area to understand exactly how frustrating that information was.  Here’s a map to illustrate.

leith

It became one of those movie moments where the main character has to choose the right place to go to save the day.  He goes on instinct.  There are many Leith car dealerships in our area, but based on what I could put together from the bits and pieces of information, I had a guess.  Having no real idea if I was to go there, or they were coming to me, I headed off into traffic.  I had about 3 miles to go.  It took roughly 20 minutes to make that trip at 5:00PM.

I calculated my search based upon three things: 1. The cab was traveling North. 2. The driver would pull off the road to the right 3. The driver would park in the convenient Leith location on the right.  This Leith place felt like going to a mall.  The building was about as big and there were a lot of cars parked.  I wheeled around the lot avoiding the zombie invasion of salesmen in search of the cab.  Nowhere.  I call Melanie.  I search the lot again.  Still no answer at the cab company.  I go to pull out of the parking lot and I see it.  In a run down used (Leith) car lot across from the new one.  A cab; a police car, and no way to get there.  I am sitting across the street at one of, if not the worst intersections in the area.  It took about 10 minutes to get there.

Ethan’s cab regularly carries about 5 students.  They all, more or less, have behavioral issues.  This was a day that Ethan and another boy were having a fairly heated argument.  The result of which was Ethan out of his seat.  He refused to return to his seat and put on his seatbelt.  The police were called.

I pulled into the lot and saw the police lights’ celebratory twinkles.  So.  Here I am.  My 10 year old son is being arrested by the police.  Well, he wasn’t being arrested, but it was a surreal experience.  At what point does a father think that he will be picking his son up from the police at ten years of age.

I spoke with the police officer for a couple of minutes.  He told me what had happened and that he had spoken with Ethan.  He said, “Ethan assures me that you will take care of this.  I’ll leave this one to the parents.”  I laughed.

Ethan was quiet and scared as we drove home.  I did not yell at him.  I did not do anything other than support him.  I knew that this was not a time to discuss consequence.  I think the conversation with the police officer was enough.  About halfway home I asked Ethan to call his mom.  He was crying and I heard him tell her, “I don’t want to be a criminal.”

Is it bad that this made me chuckle?

I Fought the Law Part I

Midway through Ethan’s fourth grade year, his principal at Forest Pines Drive Elementary School had seen enough and before we knew it, he was sent to an alternative school in Raleigh called Bridges.  This school wisely chose to remove the special education teacher who regularly checked on Ethan through the day.  They made it so Ethan could choose to check in with him at the end of the day.  Things only worsened.  No Autism teachers, a very young special education teacher, a teacher who left in the middle of the year, all of which caused Ethan stress.  But hey, he’s just a bad kid, right.

Let me step back for a minute.

Melanie and I both work for Wake County Schools.  We live in Franklin County, an adjacent county.  As Wake County Schools employees, we are allowed to send our children to a Wake County school as long as we provide transportation.

So when Ethan was sent slam, bam, thank you ma’am to the Bridges Program, we had no real way to transport him to school.  My wife and I begin work at 7:00AM.  Bridges school would be starting around 9:00AM.  Bridges school is located roughly 30 minutes from my workplace and about 35 minutes from Melanie’s school.  The numbers simply did not work.  So, what to do?  Luckily for us, the Bridges staff was extremely helpful. The Bridges staff informed us that we could apply for transportation services to the WCPSS Transportation Department.  We did.  We were turned down.  But we knew we would be turned down because the Bridges staff said we would be.

Our next step was to appeal to the Transportation Department.  We did.  We were turned down, but as stated above, Bridges told us that would happen.  We applied again, this time to the Superintendent of WCPSS.  If the Superintendent turned us down, we would make a final appeal to the school board.  The Superintendent granted transportation services.  Good guys win.

Too Good To Be True Fact

The Superintendent would later be fired by the school board, in large part to the Superintendent’s handling of transportation.  Not our transportation but the immense failures that occurred with bus situations.

Too Good To Be True Fact II

After being fired, he didn’t stay out of work long.  He was hired, wait for it, as Secretary of Transportation for the state of North Carolina by Governor Pat McCrory.  This is the same Governor who has never responded to any of my questions.  More on that later.

Wilderness Camp Costs What… A Walk in the Woods

About 2 weeks, I spent the morning filling out an application for a wilderness therapy camp, the kind where you go off into the woods for a month or so and receive therapy.  Sounds like a great thing for a kid, any kid, a chance to commune with nature, get healthy and maybe get a bit more grounded.  We had looked into this way back when we first placed Ethan in an out of home environment.  In fact, many of the students who attended Whetstone Academy had participated in one of these camps.

After 30 minutes or so of completing an initial application, the phone almost immediately rings.  In this case it was SUWS of the Carolinas.  They are on top of it.  Melanie spent about 30 minutes talking to them as I worked through the supplemental paperwork.  I’ve put a hold on it.  Turns out that this and other wilderness camps are quite expensive.  How expensive?  Let’s say $16,000 +.  That’s $485 per day plus initial costs, etc.  Hey, we only have to provide underwear though.  They provide everything else.  And, hey, Ethan won’t wear underwear.  That’s a win for us.  Of course $16,000 for 28 days is a bit steep for us.  I would think it would be a bit steep for everyone, but as we have learned, mental health is only affordable to the wealthy.  The rest of us work with the mental health professionals who are apparently paid from the state picking up lose change from those rich enough to drop off their children at an excellent location.  I don’t mean to disparage all state mental institutions, but I do want to disparage some state and private institutions.  I’ll make sure I get to that.

The Diagnosis: Honesty is a beautiful thing.

In June of 2008, Ethan was first diagnosed with Asperger’s Syndrome.  It may seem cruel or bad or whatever adjective, but as parents, it was a relief.  For 6 years we knew that something was just a bit different, but as first time parents, we were ignorant of all things parenting.  My parents, Melanie’s parents simply referred to our stories as “normal” child rearing toils and tribulations.  “But, but…”

When Ethan was four, Melanie and I had our first night without Ethan.  My parents were keeping him overnight, and we were heading out on a date.  My parents live approximately an hour away.  We drove home and headed out to see a movie.  The phone rang.  I can hear Melanie telling her that it was “normal.”  Her response to my mother’s “he’s been crying for over an hour.”  Apparently that isn’t “normal.”  What happens when our normals collide? Are we bad parents?  Is there something wrong?  Do our parents think we are bad parents?  Why are we thinking about ourselves?

Ethan rocks and rotates his wrists and ankles. A lot.  Even as a first time parent, I was aware that those behaviors seemed a little different.  I asked Ethan’s pediatrician about it from age 6 months until age 5, just before his Kindergarten year.  It was “normal.”  He would grow out of it.  It was reassuring to hear that but the growing out of it just wasn’t happening.  Our problem is that the Klines are rockers.  There are stories of me rocking the crib across the floor.  I watched my twin brothers rock on the couch in tandem.  I watched my niece an nephews do the same, but it wasn’t the rocking.  It was the wrists, the ankles. The “motorcyling” behaviors that caused me worry.  So when that pre-K check-up led to a visit to a neurologist “just to be safe” appointment, I was both relieved and scared.

Neurologist report.  “It’s ‘normal.’  We call it stereotypies and he will grow out of it.  They are just stereotypical, self-soothing behaviors.”

Fast forward to June.  Ethan’s wonderful Kindergarten teacher, Ms. W, asked if she could express some concerns.  You see, teachers are supposed to teach, nothing else, nothing that can be considered interfering with parenting.  As teachers ourselves, we welcomed honesty.  Ms. W was a former special education teacher.  She pointed out Ethan’s difficulties in interacting with peers and the stereotypies, preferring to sit on the side during recess and flap a piece of grass.  Flapping consisted of waving a blade of long grass in front of him as he rocked, either standing or sitting.  She suggested that we might want to have him tested.  We were incredibly thankful for some honesty, from anyone.  It was a beautiful thing.

We made an appointment with a psychologist to have Ethan tested.  As teachers, we refused to allow the school system to test him, favoring an outside party.  The family met with a team of psychologists answering questions on history and behaviors.  Ethan underwent a battery of testing.  The results were in.  He has Asperger’s Syndrome.

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.