Swimming in an Endless Pool…Upstream

2012-04-26_12-13-59_300When I was in high school (1985), my friend Mark and I went to see R.E.M. at the old Raleigh convention (civic?) center in downtown Raleigh. Neither of us was familiar with Raleigh at that time. We ended up lost. And despite what the stereotypes might say, we stopped for directions at a gas station. The guy there told us, and I kid you not, “You can’t get there from here.” That in itself is funny, but the beauty of it is that “Can’t Get There From Here” is an R.E.M. song. While we did end up making it to the show, the guy at the gas station was somewhat right. We ended up having to drive over a small median in the road to ultimately arrive at our destination.

So what does that little anecdote have to do with mental illness and more specifically Ethan’s journey. The journey to a place that can serve Ethan’s needs and allow him to overcome the issues that prevent him from living at home and attending school in a traditional setting has many twists and turns, but so far it doesn’t know where it’s going and that’s frustrating.

This is one of the things that has me pulling out my hair. No one knows anything. No one sees the whole picture. I can stick with the puzzle metaphor. Each place we have been is a piece, but we don’t have the box cover and some pieces seem to be missing and some are in different boxes.

This is the circuitous route we’ve taken in schooling:
Wake Forest Elementary (Public) —> Forest Pines Drive Elementary(Public) —> The Bridges Program (Alternative Public)—>Root Elementary (Public) —> Whetstone Academy (Therapeutic Boarding School) —>Wright School (Public Therapeutic Boarding School)—>Alexander Youth Network (PRTF) —>Wakefield Middle School (Public)—>Alexander Youth (PRTF)—> ?

These are some of our puzzle pieces:
Intensive Home Therapist, Parent Navigator, Education Consultant, Lawyer

These are puzzle pieces that apparently fit other puzzles because they have been no help in our journey:
NAMI, TEACCH, Autism Society of North Carolina

Here are some edge pieces:
Holly Hill Hospital, UNC Children’s Psychiatric Hospital, Wakebrook Mental Health, Strategic Behavior Center, UNC Hospital, Strategic Behavior Center

The next school Ethan attends will, barring unforeseen circumstances, be another Therapeutic Boarding School. Ethan’s previous placement at a TBS was successful but ultimately depleted our funds. According to Ethan’s doctors, his next stay must be at least two years for progress to be made. How do you find a PRTF or TBS? Don’t count on your local MCO (Managed Care Organization) to help. When we contacted them for help, we were told to look at their website which contains this beast. And there is no one at Cardinal, our MCO, to help. We had to go through each of these on our own. Of that list there is only one that has a specific Autism element that accepts boys Ethan’s age. They turned him down. They suggested the Wright School where he had previously attended. The Wright School is a therapeutic boarding school and not a psychiatric residential treatment facility but it is not designed to work with Autistic children. Why did we end up at a PRTF in NC that doesn’t have an Autistic program? It’s because they accepted us. As long as someone in NC will, we cannot look out of state.

How do you find the right therapeutic boarding school? Well you can go to your trusty friend Google. Try this one or maybe this. Look around enough, as we have and continue to do, you will find no one to help you navigate. There is no help line for this. We are stumbling around and hoping for the best. We’ve brought in experts of some of these pieces. If we find one, how can we be sure about the school? Maybe you have to do a little or a lot of ground work. This is where an educational consultant comes into play. We learned about these consultants after we enrolled Ethan at Whetstone. They don’t come cheap (except for those of us who face such an uphill climb that she feels sorry that we will need so much money just to afford the school). Our educational consultant will contact another and they’ll tell two friends and they’ll tell two friends and…

To date one school will accept him. That is a program in Austin, TX. It’s over $11,000 per month. That’s where the fundraiser begins. That’s when we start looking for scholarships. How do you find them? Maybe one of your experts knows of one. Maybe the school you are looking to attend knows of some. Would it surprise you to know that we have not had that kind of luck? Perhaps it is like psychiatrists and insurance. Many psychiatrists (in fact most in my area) do not accept insurance. Mental illness only affects the wealthy, you see. Why would they need scholarships?

While Ethan attended Whetstone we learned that some students had been funded by their school districts because they could not offer an appropriate education. This is where our parent navigator, psychologist, psychiatrist, and lawyer have to come in to play. We are still working on this. No public school unfortunately is currently prepared to educate Ethan. They will of course fight this. Wakefield Middle School felt that 1 hour of tutoring a day in a room he never left constituted an appropriate education. There is no guarantee that we will receive any help from the public school system.

We have been referred to NAMI. They offered no help. We had Ethan tested by TEACHH. They confirmed Ethan’s diagnosis but little else. Doctors have referred us to other doctors who have referred us to other doctors. It’s been a doctor spiral, round and round and going nowhere. Schools sent us to alternative schools who send us back to regular schools that suspended him and resulted in a placement at a therapeutic boarding school that ultimately drained our bank account an we landed at the Wright School. Ethan was ultimately unsuccessful at the Wright School and …

“So it goes.”

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Crime and Punishment: Why Ethan Only Wants a Pencil (or eraser)

Rewards and punishment is the lowest form of education.  Chuang Tzu

Where I work, the consequence of skipping class ultimately leads to suspension. Think that one over. Sometimes the punishment isn’t a punishment.
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Let’s face it. It’s impossible to escape a system of rewards and/or punishments. The problem is that they don’t work for Ethan, and everywhere he goes, he is introduced to a new system, and in the end they never work.

Ethan wants things. He will work to get things. You might think that this would be a perfect scenario for a reward systems. It’s not.

The schools start off every year thinking that their system will work. We meet with Ethan’s teachers at the beginning of the year to let them know of the problems he has with rewards. I can always see it in their eyes . They are thinking, “My system will work.” But it never does. Never.

Here is Ethan, a kid, as I said before, who wants things. He obsesses over things. He shops online. He researches and he can spit out in detail anything you want to know about what he wants. If he wants a bearded dragon, he can tell you whatever you need to know. That’s how he frames the argument for getting the thing he wants. He can do it for whatever he wants such as a guinea pig, hamster, mouse, rat, snake, dog, cat, sloth, hedgehog, tarantula, or pig, all animals that he has asked for. And I know there are more that I cannot recall. Now, here’s the class offering some reward if he follows the rules.  And he does, sometimes for a week, maybe even a month. He earns the points, gets the tokens, and goes to the school store and gets a pencil. Then he wants another pencil, and someone will give him a pencil because it’s just a pencil. Then he wants another pencil. Then he declares that he has a ‘collection’ of pencils. He says to someone with a pencil. “Hey, I really like that pencil. You know I collect pencils,” and soon he has another pencil. He earns more tokens. Back to the school store and he gets an eraser. “I collect erasers.” Soon, there is nothing in the store he wants. He doesn’t have motivation for the points anymore. All he wants is a pencil, or an eraser. He ‘finds’ pencils and erasers. He gets in trouble for ‘finding’ pencils and erasers. He doesn’t earn a trip to the school store. He gets angry. He loses motivation. Then the scramble is on. This reward no longer holds value for Ethan.

At Ethan’s current location, the system is so complicated that I struggle with understanding it. Ethan can’t explain it, and I don’t think he knows how it works any better than I do. It’s based on levels. There are five. Everyone starts at level two and works to move to level five.  Ethan has never reached level three. He fluctuates between level one and two. This is my understanding of how it works:

  1. Ethan can earn points throughout the day.
  2. Ethan can lose points during the day if he gets what they call categories. Categories result in points taken away.
  3. If Ethan earns enough points over a period of time, he can move up a level (1 to 2)
  4. Each level is progressively harder to reach, requiring more points, and not allowing categories.

Let’s take school for an example. Ethan can earn points for attending school, interacting with peers appropriately, and interacting with the teacher appropriately. There are four periods. He can earn two points for each task. He can earn up to 24 points if he performs each task appropriately. If he does not attend school. He receives no points and receives a category which takes away points. So, if he misses two classes, he can only receive 12 points, but he will lose more points for categories he is assigned for missing the classes. I’m lost already; it’s like I have been dropped into a cricket match and asked to keep score.

Disciplining Ethan does not work. Taking away privileges does not work. I have learned over the course of time that a punishment for him is truly worthless. He is satisfied to sit around and do nothing. There’s nothing that can be taken away that in any way serves as a punishment for him, with the possible exception of Legos. It’s not about the after. It’s about the before. It’s about reinforcing the positives. And when a problem is about to happen, it’s about removing Ethan from the situation. I can work to prevent it, head it off as it happens, or ride out the storm if it comes. I know the signs.

So what can we do? What can a facility or school do when they don’t know Ethan? Even a small facility such as the one where he is currently placed doesn’t have the staffing to handle or understand the unique difficulties that come along with Ethan.

What works for many does not work for all. Ethan has proven to be one of the few in almost all instances. I’m proud of his unique thoughts and ideas. I like that he is his own person and is comfortable in his own skin. He doesn’t and we don’t try to define him as Autistic. Or bipolar, or depressed, or OCD or anxious. Ethan’s house is messy (figuratively and literally).  Everywhere he goes he encounters a system in which he will never neatly fit. Despite the importance of a schedule or the fixation on a topic that comes along with the ASD diagnosis, he doesn’t fit neatly into what you have. He requires flexibility and patience while remaining rigid with his schedule.

So it is very likely that Ethan will remain on level two for most of his time at YF. He may pop up to three. Who knows? Maybe he will skyrocket to level five. We can live with a two. I know that maintaining a two is difficult for him. Once that rapid cycling bipolar gets going, he’s on an express train to level one.

We’re still hoping that his time there will quickly be coming to an end.

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