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

Helter Skelter–When I get to the bottom…

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

He’s Climbing a Stairway to…wherever the hell it goes

A few years ago a thunderstorm blew through and knocked a tree down on our house. Breckin is still traumatized by what could only be categorized as minor damage. But I want to talk about something else.

ry=400The tree nearly crushed our propane tank and fell between the house and the tank grabbing the roof and ultimately crushing our deck. After a long drawn out battle with insurance, we were finally able to focus on rebuilding it. I cleared the tree. And once we were prepared to have it rebuilt, I chainsawed that thing up. The guys came and put up our deck floor in one day. There were no rails or stairs or anything like that. I rigged up a path for the dogs to get down from the deck by stepping on apicnic table and a small wooden box. They were tentative but eventually it was no problem. We have two dogs, Baxter and Homer. Homer is 13 years old and about 60 pounds. He is the epitome of the old dog, and he didn’t take well to new tricks. After going down the makeshift steps, he refused to come back to the door. Baxter had no problem, but when I finally went out to see what was happening, I found Homer standing on the ground on the right side of the deck. Where the stairs used to be.

IMG_0179I jumped down and tried to urge him over to the picnic table contraption, but he was having none of it. Luckily, I hadn’t destroyed the original stairs of the deck. I grabbed them and propped them against the side of the deck. Homer wouldn’t go up. The stairs were now about 5 feet from the original location. He stayed where he was. I had to move the stairs to the exact location of the originals. Story over? Nope. The deck was finished a couple of days later. We had the stairs come off of the front of the deck instead of the side because of our garden placement. Homer went out and plopped down right outside of the backdoor as he always does. (Our previous alpha dog, Faulkner, did the same thing. The spot has just been passed down.) I thought nothing of it because it’s what he does until I went out in the yard and he didn’t come with me. This just doesn’t happen. I went up and he just looked forlornly at the rails that blocked his way to the stairs that were no longer there. After several disturbing days, he got the hang of it and began to use the new stairs.

So let’s talk about schedules. Autistic (most, all?) children require a strict scheduling. We learned this throughout Ethan’s childhood, and we read it in every book and every post, and every article we looked at it. Keep a strict schedule. I am horrible at it. I hate schedules. I hate calendars and times and dates. I like to do what I want when I want. Granted, what I would like to do most of the time is huddle up by my self or with my family and do very little (read a book, watch a movie, play games). Maybe I would do better with a strict schedule. My doctor just told me that I don’t have good sleep hygiene, which is a new one for me. Apparently, I should have a schedule. I should wake up and go to bed on a schedule that doesn’t vary more than an hour. I can go to bed anywhere from 9:30 to 12:00 during the work week. It is usually more like 10:30. And I wake up between 5:00 and 5:45 in the morning. On the weekends, that schedule is out the window. Even if bed time remains around the 11:00 hour, there is no way I’m waking up at 5 or 6 or 7 or 8. (Are you with me, Yvonne?) Long story short, I’m not good with schedules. And Ethan really needs a schedule.

It’s very difficult for others to see this in action even though it’s an easy to understand concept. But when you find yourself at the beach house with your family and everyone decides it’s a great time to go to the beach and you tell them that it’s nap time for Ethan, it begins. “Oh, he’s on vacation.” “Just this once.” “He can skip his nap.” “Let him stay up late; everyone else is.” If you are a family member or friend of someone with an Autistic child, please don’t do this to the family.

Ethan thrives, well no, not thrives, does better on a regimented schedule. At Whetstone Academy and at the Wright School, Ethan had a strict schedule. He was very successful at Whetstone and more or less so at the Wright School. Unfortunately we were the problem at Wright School. Wright School does not operate on weekends so Ethan came home to us for those days, and try as we might, there is no way for us to maintain that strict schedule with only two adults around and one very rambunctious little girl. That one is on us. We have to do better, and I thought we did when Ethan came back home and attended public school. We had countless meetings, email exchanges, and phone calls. We reiterated the negative actions that can result from unexpected change. As I look back over previous posts, I find it hard to believe that I haven’t mentioned the following. All of those phone calls, emails, and meetings combined with our awesome parent navigator, Stacy Kohn, and incredible in-home therapist Lindsay Landa, we were able to develop a very Ethan friendly IEP. Yes, we discussed schedules and changes and outcomes. It is all in black and white. The best outcome of the IEP was that we were able to get a 1 to 1 special programs assistant for Ethan. When Ethan started back to school, he developed a great relationship with his assistant, Phillip. He still found himself in some difficult situations, but he was getting by. He was passing his classes and learning. Then one day Phillip wasn’t there any more. One day before Spring Break he was a no show. We assumed he had plans for the break and was out for that. On the Monday following the break, no Phillip. Ethan had no warning. We had no warning, and the school, well, who knows? Phillip works for the school system and not the school and was reassigned due to an emergency at another school. The autism resource teacher served as Ethan’s 1 to 1 until Nan arrived. It was a little difficult at first, but Ethan came around and had success with Nan. A few days later, Nan was gone and we switched to, let’s say, someone else. So now there have been 4 different 1 to 1 assistants in about 6 weeks of school. Am I surprised that the results were disastrous? No. Add in 8 days of no school due to snow and numerous days pulled out of class for any variety of testing, and any semblance of a schedule just faded into the ether.

Now Ethan is at Youth Focus and his stay there has been up and down. If you have followed any of that story at GiveForward you are aware of things that are happening. Ethan has been skipping (refusing to go) school. This is really hard to do when the classroom is about 10 feet from your room. It never seems like there is a consistent school schedule. We would call to check on whether he went to class and find out that there was no school. Most Fridays, but not all, school is out. There are teacher work days. Sometimes there are other days with no school, and if the teacher is out, there is no substitute. Ethan has had the most success on the weekends. We have been told that the schedule is very strict on those days. Yet his weeks are marked by entropy.

In case I have rambled too far from my target, I’ll let you know that Ethan is Homer. Ethan needs his stairs in the same place everyday. He needs to know when to climb them and where they lead. For now those stairs must seem like an Escher painting to him, or maybe he’s lost in the shifting stairways of Hogwarts. It’s difficult to stay steady when the ground shifts under your feet.

Twitter @ethansnotalone #ethansnotalone

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.Picture 028

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.

7_JulyI 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 movIMG_1321e 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.


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


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

I’m Mentally ill and That’s OK

I am mentally ill. And that’s OK.

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

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

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

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

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

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

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

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

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

Medication

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

Therapy

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

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

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

But he can.

________________________________________________________________________________________________________
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?

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.
_________________________________________________________________________________________________________

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.

Follow us @willckline  #ethanvbrain
Support Ethan’s cause: Ethan vs. the Brain

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.