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

Swimming in an Endless Pool…Upstream

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

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

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

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

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

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

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

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

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

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

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

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

“So it goes.”

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.

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

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.