Just a little bit of difference

Yesterday was my birthday. Everyone asked me if I was going to do something special. or if I wanted to do something special. I had some time to think about it. What does special mean? I guess, in my situation, special would mean something different. Different than my usual day, which looks something like what the dad and brother go through in the movie, 50 First Dates. Have you seen that movie? That's the movie with Drew Barrymore and Adam Sandler, where Drew's character had been in a car accident and she sustained a brain injury which impaired her short term memory. So everyday, she wakes up and thinks it's the day before her accident. She has no memory after that date. Which means she always thinks it's the same day every day. So every evening, after her character, Lucy,goes to bed, the dad and brother prepare the house so that Lucy will see everything is exactly the same. Anyway, you get my drift, I hope. Back to me. So that is what my life basically looks like. It's not exactly the same every day, but the week does follow a rather specific routine. And with Blake, there are definitely some routines that we follow very specifically every day. Blake has a visual board that illustrates, in photos, what his day will be like. And he diligently checks it every night before he goes to bed. He knows that most weekdays, he goes to school. I take him by car (there's a photo of my car), and he comes home by bus. He knows if it's Tuesday, it must be bowling in the afternoon. Thursday is basketball, and swimming on Saturday mornings. He knows his morning routine as well as his evening regime. He jumps for joy when I take out all the products and items that we use before bedtime, and even is happy when he takes his medicines, which are given on a precise schedule. As long as we are following exactly what he is expecting, he is very happy. Because of Blake's strict routines, I also have developed a rather specific schedule of my own to adapt to his life. I don't have a visual schedule, but I do have an iPhone that contains all my appointments. And I have my own set of "If it's Tuesday, it must be..." Oh my goodness. I've become Blake. Stuck in a pattern of routines that also bring a great deal of comfort to my life. I like it. It also brings a smile to my face. Is this bad? I don't know and I don't really care. I'm just appreciative that my husband understands. Actually, he's starting to develop a whole set of routines himself, probably to adapt to mine? So for my birthday, what did I want to do that was special? Did I want to rock the boat and get someone to watch Blake overnight, which would mean that I had to get someone else to take on some of the tasks that I normally do? No-too much energy. I do that on occasion when I travel for work. No-I think a nice dinner out with the other kids would really fit the bill-just different enough to call it special. We are doing it tonight since last night was a work night for the kids (they are all grown). I'm really looking forward to it. One cool thing about having a routine life, is that just a little bit of difference makes it super special. I'm really lucky!

A little radical?

Last Friday, I did something quite radical. I got a tatoo. Not a little butterfly on my ankle or a petite flower on my back easily hidden from the public. No, I got a rather large autism ribbon on my arm. Big and bold in all it's blue, red and yellow technicolor glory. It wasn't an impulsive decision. I had been thinking about it for almost a year. I'd would have probably gotten it sooner, only I was scared of the pain. I had even researched numbing agents. But when it came down to getting it, I decided that I wanted to feel it. Every scratch, pinch and poke. And it hurt. Not unbearingly, more annoyingly than anything. Especially, at the end when my arm was getting sore. It's actually more of annoyance now as it goes through the healing process. And it's much larger than I had originally imagined because it had to be to get all that intricate puzzle-piece detail into it as explained to me by the tattoo artist. So the $64,000 question that everyone, even my husband, keeps asking me, is why did I need to get this? Why would a 55 year old not very "tattooish" type person feel compelled to get this? I do confess I have another small tattoo gotten many years ago. But in general, I don't think anyone would peg me for the type. And here is the best answer I can give, because, to be honest, I don't think I really understand it completely myself: Autism has been an overriding theme in my life. Not only have I been living it 24-7 since my son was diagnosed in 1993, but it is my chosen profession which I selected many years before that. And I can't quite get my head around the fact that even though, it is widely known that 1 out of 88 children are being diagnosed with it in the year 2012, it's not the most important topic discussed on every TV, newspaper, blog, or any other media outlet. What the heck? If there was an epidemic of something else that appeared to be growing and growing year after year which had the affect of a life long possibly debilitating result which would require a society to basically support an entire entity of 1 out of 88 individuals wouldn't this be a huge thing? Remember the bird flu or swine flu thing? H1N1? I just can't understand it. Do the other 87 families really think their lives won't be affected at all? Oh really? Don't they pay taxes? And are we any closer to understanding what causes it? It seems that I read about another theory every week. But I'm not sure that in my lifetime we will know what is going on and how to stop it. And that makes me very sad. So that's one reason I got my tat. I'm sure there are multiple other reasons which I will be blogging about soon I'm sure.

Sorry it's been awhile since I posted. Been busy. I'm sure you know the feeling. :)
But I am going to try to make a committment to post each week. So please come back next week!

Meanwhile, I want to post about a conversation that I had yesterday with an acquaintance. She is a very nice person, and I mean her no disrespect. She is not a parent of a special needs child, just a friend.  But she said something that made me cringe a bit. She's about my age-mid 50's. We were talking about the future. I mentioned that I was getting a bit old to be doing what I've been doing (I was referencing the micromanaging of my son, Blake). I told her that I couldn't imagine doing it at this pace in 10 or 15 years down the road, and that eventually I needed to figure out another option. I guess because she is around my age she was taken back at the reference of being "too old?" I don't know. But she immediately jumped in and said, "you're not old!" Of course, I then referenced my comments back to the management of Blake and how a person of my age wouldn't normally be taking care of an adult child with special needs and all that goes along with that. "Okay, okay," she commented in relief realizing that my life bore no resemlance to hers, I suspect. I soothed her even more by saying that I still feel full of vim and vigor (haha), but not necessarily all the time. I mentioned that being in the mid-50's is not old to work or go on cruises (yes, I was a bit passive aggressive, I admit), but a tad bit over the hill for wiping behinds a (big hairy one at that!), dealing with school issues, and lots of doctor appointments. And having to be home at 10PM on a Saturday night to relieve the caregiver. Yes, a bit old for that. She got my drift!

This isn't the first time I have received comments that are in the same vein.  When I clarify, there is always the risk that I can make the listener uncomfortable, so I am careful when elaborating to be sure that the they understand that I take it all in stride. It's my life. And to be honest, I'm pretty darn happy most days. It's not easy, but I'm really ok with it. I know that I maybe can't plan like other people my age. My husband and I don't travel like our friends. And I know I have a lot on my plate. But I think I have a very deep appreciation for days that are uneventful, and I noticed recently that I don't ever complain about being bored.