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

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