Tuesday, June 10, 2014

The Unglamorous Part of the Autism Life

I'm tired. Not the kind of tired I felt years ago after pulling all-nighters. Not even the kind of tired now if I get less sleep. The bone weary kind of tired that you feel in every inch of your body. But not even that kind of tiredness can stop me from giving my all to Kreed. So I thought I would do a quickie blog post on our nightly routine- the routine AFTER Kreed is in bed.
Putting Kreed to bed is a chore in itself. First, check his blood sugar- need to know where he is at. If he is under 100, we feed him. Even if it's 11 o'clock at night. That gives him the best chance of waking up with okay blood sugar levels. But even then it's not guaranteed. Then it's putting all the pups where they go, two in the kennel and Finley in his room with him because that's what she wanted ha. Then I make sure Kreed's bed is comfortable for him and I start the movie he will watch until he falls asleep.

Then I go into his bathroom and assess if it needs cleaning. Kreed is fully potty trained, but he's a boy and often times if he goes Number 2, Number 1 ends up on the floor in front of the toilet. And since I don't always know when he goes, it's clean up time. So, I clean his bathroom pretty much every night before he goes to bed. No ever talks about some of the massively fun parts of potty training and when they become teenagers! I also go around and gather whatever clothes are strewn throughout the house from one time or another. Since it gets to be 110+ degrees here every day for the next five months, Kreed will often strip on his side of the house. He has learned pretty much to keep it in his room, but he will get new underwear or shorts to put on if he ventures out, so often there are several pairs laying in different places. Each must then pass a smell test to determine if he only wore it for a few minutes, or a few hours. He's a teenage boy, so it's easy to tell!

Then, I gather his ipad and plug it in to charge over-night. Then I grab his device and we do our bedtime talking. Then I take that and plug it in to charge over-night. Let's see...straighten up the kitchen and Kreed's area. I clean up his stuff that needs cleaned up like movies or toys- unless we are currently targeting some kind of clean up thing- then I grab him and he works on it. Yep, that's right, at 11pm at night or whenever. If it's his job and we decided on him working on it- it gets done regardless of the time. We like to keep him responsible and he does best if we follow through on whatever we decide it's time for him to learn to do. Oh, and I make him pee before bed. Emphasis on MAKE. I don't care if I knew he peed an hour ago. He will pee before bed. Kreed knows this. In the past, I've sat in a chair in his bathroom and told him to go pee for forty five minutes straight. Those were long nights. Now he KNOWS. And you can actually see him trying to push the pee out. I don't care how little pee comes out- he WILL pee before bed. That makes life easier for all of us. 

Did I mention this is all late at night- because he is a teenager and he doesn't go to bed until 11/12am. What is great is he's had 16 years of practice for the bedtime routine- once he is in his room, he stays. So he goes in about 11. We have to wake up at around 3am to put his BIPAP machine on. It's some long nights right now while he is learning that. 

Then after running through the giant checklist in my head, I have to think about my next morning while Kreed is sleeping. Do I have anything due in school? (Finishing Master's degree). Do I have anything I need for work in the morning? Then I think about notes to leave- call his neurologist? Does he need any refills on his medication? Do we need to pick anything up tomorrow? Anyone else to call? Any appointments? The list is endless.

Then, I make sure his BIPAP machine is working and ready to go for when he falls asleep.

Then and only then do I finally ready myself for bed. Or like tonight, write this short blog. Sure, I could leave everything for the next day- but let's face it- you never know whats coming the next day. I at least know what I can take care of before bed without interruption. In the morning- Kreed could wake up early, he could crash from low blood sugar and go into a rage- any number of things could happen. I want the next day to start fresh and ready to go, rather than scrambling around or trying to clean while Kreed is wanting to bite himself from low blood sugar issues.

All of this can eventually make you bone weary tired. But we do it every day and every night and every morning because it's not like he was given a choice for it to be like this. So we give him every opportunity to be successful, which includes starting each day off right and ready to go- and that means prepping the night before. Sure, some nights we are too tired to do jack shit. No joke. And then I hate myself the next morning when I look at his ipad and realize I didn't charge it. You pretty much make that mistake one time haha.

But these are the un-glamourous parts of the autism life. The cleaning up pee from the bathroom floors or splatter on the seat (you do NOT want to sit on that seat in the middle of the night not cleaned), finding clothes throughout the house, and cleaning while he's ready for bed because it's the first chance you've had to tidy all day. And then there is the moment you remember what you had wanted to do, like cut his toe nails. Sigh. That is what I'm remembering right now. Goes on the list for tomorrow! See what a blog- toe nails and pee on the bathroom floor. But hey, this is shit is real.

In the end though, this is our normal. The anti-normal. We accept that this is the life. With that acceptance, it leaves no room for anger and resentment. Without the anger and resentment we are free to focus on the things that really matter. And most of all, it allows us to keep moving, keep improving, keep him learning and gaining independence.

Are we tired some days to the point we can barely function? Absolutely. We take those days as they come and deal with them. Then we go back to the routines and teachable moments. More than anything, we just keep going.

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