Well, its my first update since Dayna came back from Murdoch, an inpatient behavioral medical facility here in North Carolina. She spent 6 weeks there to help her deal with the fact that she would not sleep at night and would fight us going to school. It was a hard 6 weeks for her and for us. She was not allowed to come home at all, even for the holidays. We were only able to visit her in a conference room, which usually ended with her crying and sometimes screaming to a point they had to come take her away. That left for a long 1-hour ride home feeling horrible. So now that she’s back, how have things changed? They’ve changed quite a bit…..but there are still glimpses of the past. Did I mention I am writing this at 4am in the morning?

It’s important to note, they were not tasked with ‘curing her Autism’ at Murdoch. Dayna was going to come back with many of the distinctive traits of Autism she always had. But they were trying to reset some of those behaviors that grew out of control, and help us to deal with them for the future. Truth is, when she came back at first it was exciting. She did seem changed. However, it did not take long to remind us that taking care of Dayna is a full-time job at home. In reality, now that she is home that job has become more intense, more structured and more difficult. Dayna spent six weeks in a highly-structured setting. She ate at certain times, slept at certain times, and went to school right at the same facility. She was in a pod with 5 other children, each with their own bedroom that faced out to a common area. And most importantly, it was staffed 24×7 by therapists watching and dictating her every move. It was not long while she was there for her to start falling into the process, sleeping through the night (with medication help) and attending school without a fight. The staff would get her ready for school and off she would go. They would tell us in regards to sleep that for the most part she would sleep on average 8-10 hours at night, which amazed us, but that on occasion she would wake up in the middle of the night. And when she did wake up, the staff would just lead her back to bed and after an hour or so she would fall back asleep until morning. Notice my reference to all of the staff……and did I mention I am writing this at 4am in the morning?

Overall, Dayna is doing much better. She falls asleep now between 9:30 and 10:00pm. She sleeps in her bedroom happily, which now has no TV, no radio, no computer, and no iPad. When she is awake at home she spends time up in our loft. Our new home is very open, the family room downstairs is open to a large loft area upstairs. She is no longer going to her room and shutting the door, she spends her time out with the rest of us where she can see us. She does go to school every day and does well there. But there are caveats. While there are nights that she does sleep all the way through, more nights than not she does get up around 4am in the morning. Did I mention……..oh yea, I did. The difference now is that she will go back to bed and just like at Murdoch, she will go back to sleep. She may come back out once or twice, but she does comply after a while and doesn’t put up a fight, unless…..well, more on that in a minute. Come morning we have another structured routine that is falling into place. She has time to relax and spend time upstairs before school. School at Murdoch started around 9am, school here gets dropped off at 6:45am. That was going to be hard, so her school here has been wonderful in allowing us to modify her schedule, and that seems to be making a difference. Yea, we still get the ‘no school’ thing from her, as well as other push backs. But overall she does not fight getting dressed or going to school, unless…..

Here is where the hard work has come in, and where the problems exist. The first few nights she would wake up in the middle of the night and I would come downstairs and get her back to bed. I learned that I could not just simply go back to sleep myself because she would sometimes come back out. That part is very reminiscent of before she left, because when she does wake up it takes no time for her to have half the lights on and be eating in the kitchen. But, she now she will go back to bed, even if not always happy about it. I then sit up for about an hour and usually by then she is back asleep. Of course by then it is 5am and there is no way I can get back to sleep knowing that I have a 6am alarm going off, so 4am is the new wake up call for me many nights. Then comes getting ready for school. It works out well with the other kids schedules that Dayna goes into school around 9am. By the time she has to get ready the craziness as subsided and it’s just her. The first few days Deb and I both would be here to get her ready. I had called in late to work one or two days, and happened to have meetings the other days that allowed me to leave straight from home. Then last week there was a problem. First, on one of the nights that Dayna woke up, Deb got up to put her back to bed instead of me. At 4am in the morning Dayna started to do her old thing, screaming at the top of her lungs and pulling away. Eventually I came downstairs as well and we got her back to bed. That morning I left for work at the normal time, which happened to be the first time that had happened since Dayna returned. While at work I noticed a Facebook update from Deb talking about how the day must get better. I called and she let me know that Dayna started fighting going to school again and by the time she was able to get her there, class periods were changing. In the midst of high school kids all walking around outside Dayna was screaming and refusing to get out of the car. It was all reverting back to where we were in the fall. Hopefully this was just a weird day.

That night….the ‘No School!’ request started to get louder and more demanding. I made sure we did everything right, we read her a social story about going to sleep and getting up for school. We made sure she was right on schedule. She had her medications, we got her to bed and to sleep on time. The next morning I stayed around to help. Deb went to get her dressed and Dayna started screaming and fighting all over again. In an instant I lost it…..I’m not proud of it but I lost it. I’m already a bundled up ball of stress lately, and it was an instant time warp back to the hell we had been living for so long. The unlucky recipient of my anger was the bench to our kitchen table…..don’t judge me, I had to let it out on something and besides, I never liked how that bench looked in the new kitchen anyway. But the frustration was that in one day it seemed like Dayna had learned what she had done in the past and decided to start doing it all over again.

I couldn’t believe it was happening. Dayna was sitting on the couch refusing to get ready, Deb and I were trying to figure out what the hell was going on. The realization that Dayna needs such structure, that everything has to happen a certain way and at a certain time was becoming even more clear. Everything could be turned back upside down in an instant. The truth is, Dayna needs a one on one assistant at all times, but that it not possible. We have to be her assistants. Out of nowhere I decided to try something and told Deb to ‘disappear’. I said to head to Starbucks or something and remain out until I let her know the cost was clear. I then let Dayna go upstairs to her loft. I set her timer, a typical kitchen bell timer, for 30 minutes. I used her picture schedule to say that after 30 minutes she would have to get dressed and go to school, and then I walked away. We were repeating the typical morning, just one hour later. When the bell went off, I was able to bring Dayna downstairs without a fight. I got her dressed (by the way, the uncomfortableness of a father having to dress a 16 year old daughter is the subject of another blog to be titled The Backwards Sports Bra). While she hesitated a little and said no school, in the end she got dressed without a problem and went right to my car. I drove her to school, waiting for the screams but they never came. She got out happily, went right to her teacher’s assistant and started her day.

Success!…..and realization. Dayna wants me to be there. Its not anything against Deb and its not to say Deb is doing anything wrong. It’s just Dayna and how she is. It’s no different then how she always has to have the same blanket with her at home, or only have Burger King when we are on a road trip but never anytime else, or how she has to watch her favorite Dance Party on a VHS tape, but never on a DVD. But that creates a new problem, Deb is now the one that works from home, and I am now the one that doesn’t. I did make me think….could all of this started back in September 2014 when it started to snowball out of control? The month of the infamous second heart attack, the job change and not being around as much? Who knows, but what we do know is that as one problem is solved there will also be something new to crop up. And the delicate balance is to make sure we don’t let things get back to where they were. Like an airplane when you do everything right you can cruise right along and even with turbulence here and there you will have no problems. But don’t take your eyes off the controls for long, one mistake and you could find yourself in a tailspin and ultimate disaster.

So that’s where we are now. Some problems have been solved, some are still there, and some have popped up. We are in a much better place for the most part than we were just a few short months ago, and we can now see what works to keep Dayna on track. And sometimes, you just have to deal with the reality that certain things are going to happen and you can’t help it.

Did I mention I am writing this at 4….crap, it’s now 5:50am. My alarm is going to go off in 10 minutes. Time to start the day!

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One thought on “At 4am, so much has changed, yet so much is the same….our new world.

  1. Dan,
    You and Deb never cease to amaze me. Your honesty and candid sharing of your “adventures” with Dayna make it possible for your readers to experience a day in the life in a way that makes it ok to reflect and be thankful. Your strength and dedication to being amazing parents to all of your kids is something to be proud of. I am so happy to know you all. You really need to turn this blog into a book because your insight and humanity take the “stigma” out of being the parents of a child with autism. You and Deb are just parents; you care and love for all of your children. Dayna just needs her served in a different way and there you both are making it happen! Write a book! Might be the slight bit of relief as far as flexibility that you need! Love you all, miss you all!

    Like

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