Teach Your Children Well…

When I taught English about 20 years ago, I used a story called, “Explaining Death to the Dog” by Susan Perabo. It is the story of a family whose child dies and a grieving mother who seems to come to terms with her own tragedy through her relationship with the dog. The dog grieves.  The story ends on a sad note but in a way that sums up the complexity into a single concept:

But Stu was still sniffing around the room, trying to pick up the scent of the baby, and I realized he would never understand death. All he would come to understand was that the baby was not coming back.

I think about this now when I talk with my daughter about Ethan’s issues, or when I hear her talking about things Ethan related. I wonder how much she grasps and how it affects her. For me, there is no word that describes my feelings. It’s simply haunting. I have no way of using words to explain to her anything other than facts, and what does a 9 year old girl make of the these sophisticated concepts and unidentifiable emotions she has been given.

B. has lived through some tough times with Ethan. She has seen him at his very worst, and believe me, that can still be quite traumatic for me, and I feel like I’ve seen it all at this point. She’s experienced Ethan’s suicidal threats, threats of harm to her and the family. She’s seen him running away from flying piranha and scream that blood was running out of his leg. She’s seen him destroy his toys, her toys, and parts of our house. She’s seen police come to the house. And she always seems to take it like a champ. On occasion, she breaks into tears, crying that she misses Ethan. Other times she seems to show no ill effects of the turmoil through which she lived and the chaos that is our current lives. She hears terms like Autism, bipolar, OCD, and anxiety bandied about, and has visited boarding schools and hospitals, talked with therapists, psychiatrists, and doctors. And all she does is continually express love for him and a desire for him to come home.

I constantly feel guilty for what she has been through. It seems we spend all of our time struggling to help Ethan. I try to have Breckin and Dad time every day, and I have played more Minecraft than I ever want to play. And when we do play Minecraft, she’s mean. If I take her somewhere like the movies, I feel guilty because it costs money, and we are fundraising for Ethan. How can I spend that money? Luckily, we still have gift cards lying about because Breckin never asks to spend money; Ethan asks to spend money daily. I remember all the rewards and motivations that we have provided for Ethan, and I’m racked with guilt over what she hasn’t had. I remember our vacation this summer, even though it was relatively free, and I can’t help but feel guilty. How can I take this time off while Ethan sits in what amounts to a minimum security prison? And how can I feel guilty because I’m worrying about Ethan and not spending enough time with her? How can I explain all of this to my daughter?

Now we move towards a new placement for Ethan, it means a likely move for us. It’s what is best for Ethan, and it’s what is best for me and Melanie, but it’s not necessarily the best for B., but I know that she will be supportive. She may even be happy. My parents moved when I was in high school. It was exciting, but ultimately, it was a difficult transition for me, so I’m aware of the sacrifice she will be making. We’ll also likely move farther away from the rest of our family, many who live within an hour now.

Right now, she may just be the glue that is holding us all together, and I know I couldn’t explain that to her either.

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To read the entire Perabo story, check out the Missouri Review.

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We have raised over $11,500 so far in our GiveForward fundraiser. This is incredible but unfortunately just a fraction of what we will need to fund Ethan’s placement in a therapeutic boarding school. If you can, please consider donating, even if it’s only a dollar or two.

Twitter: @ethansnotalone #ethansnotalone @willckline

Swimming in an Endless Pool…Upstream

When 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.”

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.

Follow: @ethansnotalone #ethansnotalone

Give Ethan a hug or a small donation: Ethan’s Not Alone

No, I Don’t Know Why I’m Angry

Have you ever just woken up and wanted to blow up your microwave? Nope. Neither have I.

As I’ve talked with doctors over the past few years, one of things I always bring up is that I don’t know how other people feel. They ask me if I’m feeling sad or angry or happy or anxious. Yes? Do I feel more anxious than what someone else feels? Yes? Maybe? How the hell am I supposed to know that. This is who I am, and I don’t know how you feel. This is my normal.

I was diagnosed with bipolar disorder in my 40s. I can’t say that it was a complete surprise. It made sense to me, especially after speaking with doctors and therapists and other people. What I do know is that I wake up angry. I’m not angry with anyone. I wake up angry. I can’t make myself un-angry. I can try, but it just isn’t going to change. I hope for the best the next day. But for that day, I spend 90% of my energy trying to control the urge to explode. Give me a reason. Any reason. I’ll take it. The truth is that I don’t want to be angry. I’ve tried many things to try to overcome it. It’s just not easy. There is absolutely no intent behind the anger.

As I grew up, I really had a difficult time understanding my anger, and I would like to think that I had far fewer of these angry days as a child than does Ethan. Even through college and early adulthood, I struggled to make sense of it. When it crystalized for me was when I began to see the same thing in Ethan. This was prior to his bipolar diagnosis. It was something I could see in him. I used to tell Melanie that I could tell if he was going to have a good day at school in the first 10 or 15 minutes of the day. It was never a surprise to get a phone call from a school on one of those days where I urged him to try harder in whispers as I dropped him off at school.

Ethan and I are both diagnosed bipolar. By doctors. Real doctors. I was diagnosed later in my life. Ethan was diagnosed younger. Ever so often someone will ask if Ethan was diagnosed too early.  “These doctors”, they say. “Trying to make a buck,” they say. “Kids go through rough patches.”  Over the years Ethan has more than once desperately cried out that he doesn’t know why he is so mad. He may have just done a completely inexcusable act, and he’s crying and screaming and trying to explain. He has no answer. He has no reason. There isn’t one. And I understand.

Silverware in the microwave

So, the next time your child wakes you up with an exploding microwave, give me a call, and we can talk about whether or not a doctor should be involved. When your child hangs out of a second story window by one arm, jot me a note. The third time your child is shackled in a psychiatric unit of a hospital, send me an email.

Today, I woke up angry. It’s the first time in a very long time. I take medication. The medication works. Last night, I didn’t take my medication. I suffered an allergy attack during the day and had to take Benadryl. Benadryl knocks me cold. I went out at 1:30 yesterday afternoon, had two brief awake sessions, and awoke at 9:30 this morning. It may have been a night of missed meds, but that seems unlikely. Perhaps its simply a Benadryl hangover. I still don’t feel right even as I type this. The anger is surprisingly familiar and while not a friend, not a foe either. It’s an old part of my normal. I really don’t miss it all that much.

One day a doctor is going to ask me what my anger is on a scale of 1 to 10.  If that happens, I’ll need a new microwave.

If you are happy for no reason, everyone loves you.
If you are sad for no reason, you must be depressed.
If you are angry for no reason, you are just a bad person.

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).
   

   The original strip

   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.

When 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)

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.

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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Meanwhile, follow us–  @willckline  #ethanvbrain

Help us out if you can by hugging, spreading the word, and/or donating to Ethan’s cause. http://gfwd.at/1Sj7qJ1

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.

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?