Friday, 26 February 2010

• Working Schedules and Routines with Autism

  Today I was working on an article that incorporate lullaby rhymes and massage into a bedtime routine. It's not ready for publication as I am awaiting responses to interview questions from the author (I literally just sent the questions before writing this post).
  
  Parents are often concerned with setting up a scheduled routine for children. Seems even more so if your child has special needs, namely autism. I have double the concern because I have autism myself. I need routine to function adequately. If I am not on a routine, I notice my ability to focus and maintain interest slides big time. But well, there are a few forces against me in my endeavors to stay on a routine that works for me: kids, doctor appointments, and personal aides, nurses, home health aides.  
  
  Firstly, my circadian rhythm wants me awake at night. I have always been this way, even as a little kid. My mother fought with  me nearly every night to get me to sleep. It would take HOURS for me to fall asleep. Many times I did not go to sleep at all but just lied in bed and kept my eyes closed. Sort of like meditating. I was off in my own world. It was a good place for me anyway when I was young as no one would demand that I return and focus on what was going on around me but then my mom would wake me up just as I was getting sleepy and attempt to send me to school. UGH.
  
  Persons with autism often have trouble falling asleep, staying asleep and waking up. I am no different from that. It takes 2 hours for me to reach a point of functionality after sleeping. So, when my kids are in school, and need to be up at say, 6 a.m. when they were in public school, to reach the bus on time, that meant I had to wake up at 4 a.m. in order to be able to help them get dressed and gather bookbags, etc. Double UGH.
  
  Then, there is usually at least one appointment a day and we have a personal care attendant who comes M-F to help with housekeeping, meal prep, bill pay, errands and those type of things. Well, I have to be awake for that. We have nurses who come every two weeks to check on our health (people with autism notoriously do not report illness/injuries and again I am guilty of this). I also have someone who comes and makes sure I bathe at least 3 times a week. I do forget to bathe, consistently. I mean to. I try to. I want to. I just ... get busy. And then I'm too tired. I also forget to eat a lot of the times. People say "Don't you get hunger pains?" The answer is simple. No, I don't. Or I don't recognize it as such. So, when I want to sleep during the day, I have all these people in and out of the house.
  
  Next, I have cancer. My husband has COPD and heart troubles. We both are constantly having to go for doctor appointments. I failed miserably at getting to my radiation appointments. I was supposed to go M-F for a total of 28 times. I think I managed 20 of them but not consistently. Once I went a whole week without going because I was asleep or forgot that I had to do that and then the time to leave would come and go and I'm still at my computer working.
  
  The problem was that this was not part of my normal routine so to add something new like that was extremely difficult. I had one doctor's office in MA who would not only call the previous business day to remind me, but call 15 minutes before the time I would need to leave the house to get to the appointment on time. God bless them. I wish I felt comfortable asking my new doctor's office to do that but they often forget that I need a reminder call to begin with, never mind multiple calls.
  
  My children are both in counseling. They have an appointment every week. I still manage to forget that even though it's the same day at the same time every week. I wake up and forget today is Friday or what have you. And so forget that there is a therapy appointment. My son is awesomely good at reminding me about things but even he forgets and really, should an 11 year old have to do this for his mom? The therapist's office is REALLY great and will do as many reminder calls as it takes to get us there.
  
  Let me explain why I have so much forgetfulness... Firstly, there is the autism. Those with Asperger's are known for forgetfulness. Then I also have fibromyalgia. Another disorder that short term memory loss is a common symptom. THEN I also had a traumatic brain injury (TBI) when I was 19. Yep, you guessed it, short term memory loss (and mid-term memory issues). AND THEN the cancer. The treatments (chemo and radiation) often cause patients to experience short term memory issues. AND THEN.. I'm a mom ;)
  
  What was I originally saying? Oh yes... so there are a lot of forces out there that require me to be awake during the day time. It is hard to make my body operate at that time frame. I am constantly battling it and what results is this: Wake up at 6 a.m. Have coffee. Go outside. Smoke cigarette. Have more coffee. Smoke another cigarette. Stare blankly at my computer monitor. Ask: What am I doing today? Have more coffee.... for the next two hours, repeat.
  
  At 8 a.m. the boys wake up. We work on life skills as they are still awaiting approval for their virtual academy so this "semester" of homeschool is focused on "real life skills" that they will need, especially cooking for selves. So, Thomas is now excellent at making breakfast foods (fried eggs, bacon, egg in a frame, french toast, pancakes, cereal, fruit cut ups, etc.) and anything out of a box :) Brandon has finally mastered making his favorite sandwhich bologna and cheese with mayo on white bread. He'd eat it for breakfast, lunch, supper and dessert he told me yesterday if I'd just let him
  
  At noon I am back at the computer staring at it blankly. Do I write today? I look at my to-do list for writing and see where I am supposed to post. I am never on schedule. When I'm supposed to be blogging here, I'm blogging at WordPress... when I'm blogging at Wordpress I'm supposed to be blogging for Empowering Parents.. when I'm blogging for EP, I'm supposed to be working on my Special Needs Kids column, etc. Whatever. It all gets eventually written :) The main problem is distractions. I have managed to NOT get sucked in by farmville on Facebook. I have seen too many victims to know that if I start, I"ll never stop! But there is twitter, myspace, facebook, EP forum, "fun reads" (other people's blogs), emails, music, TV, books, kids, husband... plenty of distractions. And there is also the need to do research for my articles. I get SUCKED in reading journals that have NO BEARING on what I write... I just see an interesting article during my search of databases and poof.. i'm off and reading!
  
  Then comes supper time and more interaction with husband, kids, etc. I am a hands-on mom for the most part but i do require "me time" during the day to do my work. It is during supper prep, eating dinner, and after dinner that the playing with kids part takes place. If I'm feeling well. I feel so guilty about this. Most moms who work outside the home also experience this because their kid time is reduced to this and some nights they're too tired. I am not super mom. Not by a large stretch of the imagination. I do not believe I am my child's entertainment coordinator either. But I *do* like spending time with them. They need it and I need it. But there are days when I am in so much physical pain it hurts to breathe and my son wants to play in house tag with me. UGH. I can barely walk most days, never mind run about. Sometimes I wonder about the advisability of choosing to have children for myself... but in my defense, I was not as unhealthy then as I am now. I chose to have kids in my early 20s so that I could have the energy to run around amok with my kids. And the days I do feel good, I take advantage of it and we have orange tosses and pillow fights in the yard and tag and gotcha last and all those silly things my kids love and that gives me great joy. Too bad their schedule requires me to do this at say 2 p.m. rather than 2 a.m. because at 2 a.m. I'm much more able to do these things.
  
  So, the kids go to bed. Brandon (age 8) goes to bed at 8 p.m. He just got his bedtime bumped up and is quite happy about that! Thomas (age 11) goes to bed at 10 p.m. He requires a sleeping pill to get him to sleep by then. Otherwise, he's like me and up at all hours of the night if he ever falls asleep. Between 8 p.m. and 10 p.m. Thomas and I enjoy our time together watching TV, playing on Twitter, or just talking. He also takes this time to voice his opinons, criticisms, advice, etc. on the world around him. He wrote me a letter last night because he wants to tell parents not to yell at their kids if they have autism. I'll be including it in an upcoming article on my SNK column :)
  
  Then at 10 p.m. I REALLY get down to business. Now I'm awake! On goes the music, I start with chair dancing and then move to stretching and bending exercises. I then sit back down LOL I read emails, tweet, chat in chat rooms, watch TV shows (usually by now husband is awake too), discuss things with hubby, make comments out loud to no one in particular, allow myself to flap my hands when excited, and really come to life. Some have said i am "manic" at this time. I'm just happy! I am happy earlier in the day as well, I'm just not awake yet.
  
  I continue to do that all night long and at about 3 a.m. I start to get tired. I'll go to bed with a book and might fall asleep by 5 a.m.
  
  Then I wake up at 6 a.m. Oops.
  
  I do that for about a week and then I crash. I sleep all day. I can't get up. I can't move. I can't speak. I'm lost. My family calls those days "fend for yourself days" because mom ain't there. Then the process starts all over again.
  
  See? If I could eliminate the need to be up during the day, life would be great because then my kids could get the best of me... but the real world doesn't work like that. And so I continue to try to adjust myself. After 33 years of attempting it, I wonder when I'll just give up? Oh, probably if my kids ever gain independence and live on their own :)
  
   I am resentful at times of my husband. He is not required to adjust his schedule to be with us. Because of his health, he is no longer allowed to drive so all the appointments outside of the home, are on me to get kids to and from, I went to their school events and IEP meetings, and I get every one to and from everywhere. I do the grocery shopping if we need something and the PCA didn't run errands that day. I do it all it seems. He is in charge of making the coffee. If he goes to sleep when I'm about to wake up, he'll set up the coffee maker so all I have to do is push a button. Other than that... he is free. I envy that freedom but any talk with him to change things results in an argument, promise to change, change for about a week, then back to this pattern. The last discussion resulted in no change at all. He has truly given up on himself. He believes he just truly can't be a part of any sort of family activity. He chooses to eat at his desk. So I choose to use the dining room table as a laundry center :) He chooses to believe this and I am on strike. Well, shoot. I can't go on strike cause the kids require ONE of us to be a grown up about things. Okay, so the laundry gets put away. The PCA does the washing, drying and folding. One of us should be able to at least make sure the kids put away their clothes and for us to put away ours. It's the fair thing to do, right?
  
  UGH. Dwelling on negative thinking can be so destructive and usually I just don't do it. I tend to look at the Bright Side. The Bright Side is a pleasant place to look. The Bright Side is a place that has rainbows and silver linings and never any rain, or dark, dusty gray clouds. The Bight Side is indeed a better place to be :)
  
  I hope this is coherant and makes sense to someone else out there. I struggled ...
  
  Do you have trouble adjusting to a routine?
  
  
  
  

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