Tuesday, December 20, 2011

Living With Autism Part 1

Someone recently asked me what it was like to live with autism. While I would have loved to have given her a simple and concise answer, it’s just not that easy.  I’m not sure that I could describe autism by the hour, let alone generalize to a week or even a day.  Of course my tongue-in-cheek answer would have been maybe you should read my blog—it’s not called Caden’s Tale for no reason but after some reflection my answer (for OUR family) would have to include:

·         Living with autism means appreciating and celebrating milestones however small they might be and even more importantly whenever they occur. I’ve learned over the last 3 years that parenting magazines, developmental charts, and testing are NOT my friend. Sometimes I want to scream, yep he has autism, I get it—he’s delayed, does the universe need to point that out to me every chance it gets as though I don’t notice it when we are in the doctor’s office, the school, the park, or any other public/private place? The thing is though that Caden has made huge progress in so many areas and I know he will continue to in many others but he’s doing it on his timetable and his pace.  Maybe that’s a lesson all parents, special needs or not, could learn a thing or two from.

·         Living with autism means learning a degree of patience that most people will never even dream of, let alone practice minute by minute.  Caden can repeat an activity or word a hundred times in a 10 minute period (if it’s a slow day), he can need a simple daily task explained a hundred times, sometimes a thousand, before he understands, “simple” things in life are overwhelming, everything requires ___minute reminders, and routine isn’t only our friend, it’s a requirement in our household down to who sits where at the table.  But at the same time….

·         Living with autism means making mistakes as a parent. Just because autism tries to teach insane patience doesn’t mean you’ll be able to follow through every day.  Sometimes the mouth opens and things come out before the brain has a chance to think.  Things like “Caden I told you just a minute,”  “Caden you’ve already had 10 extra minutes,” “Caden don’t say that again” and so on and then he looks at us with those big blue eyes, slowly filling with tears, IF we’ve changed our tone of voice enough that he recognizes there is an issue and everything right you’ve done in the last eternity is suddenly gone in the universe. You feel like crap but thankfully autism doesn’t tend to dwell on a moment and we get the chance over and over to do the right, more patient thing again. 

·         Living with autism means that life is rarely fair for siblings.  My daughter occasionally points out that there are sometimes different rules and people stare a lot and she’s right. The best explanation that we’ve given her is that instead of thinking of her brother has a 5 year old, she has to realize that in many contexts he is closer to being 3.  While that might be a little simplistic, it has helped her understand why he does some of the things that he does and more importantly why he gets away with them. Sometimes all you can do is help siblings understand why it isn’t fair, there’s not a darn thing that we can do to actually equal the playing ground in our house at the moment. Having said that though, she’s his biggest advocate, strongest supporter, and number one defender—although she’s had some tough lessons to learn, I don’t doubt that these lessons will stick with her throughout life.

·         Living with autism means that you and your significant other will have a lot of decisions to make. There’s not a set therapy option that works for all kids, there is a lot of conflicting research to review, and eventually you just have to decide what you think might work for your child.  I think this is the part where so many parents, couples, fall apart.  Huge decisions that might very well determine your child’s future made under conditions of high stress with little sleep can easily lead to arguments that are less than productive. We’re lucky in this regard as we tend to agree on these kinds of decisions or one of us feels enough expertise to take the lead. 

·         Living with autism means no spontaneity unless there is a doctor’s office or emergency room involved.  I don’t know what else to say about this except that autism requires a precise routine or advanced preparation such that there is no last minute decision to go out to dinner or see a movie or run to the mall.  Any deviations from routine require conversations as many days in advance as possible, lots of questions, and usually a lot of anxiety on both parent and child’s part.

·         Living with autism means really appreciating a moment because the next moment could be altogether different. When I learned that autism is a spectrum disorder, I had no idea that the point on the spectrum could change minute by minute but it does. Disruption of routine, illness, holidays, guests, or sometimes nothing at all can trigger an epic mood/emotional change. Sometimes we go from a major temper tantrum to on top of the mountain joy and I have no idea how or why, other times the change comes as a result of a lot of different tactics on our part. Unfortunately we can go the other direction just as easily. Words, skills, or abilities here today may easily be gone tomorrow.  Regression, or loss of skills previously attained, is the reality that we go to bed with every night.  Speaking of going to bed….

·         Living with autism means that we are tired. Think the kind of tired that comes with being the parent of a newborn, the kind of tired that comes with having a loved one in the hospital, or the kind of tired that comes from hours and hours of overtime on a project at work. Now take that tired and multiple it by years. Autism is inventive in the ways that it keeps you awake: worrying over decisions you need to make and how you’ll pay for them, a child who wanders at night, a child who can’t sleep unless he is in bed with you, or a child who just plain doesn’t sleep. 

·         Living with autism means having conversations that you never imagined you’d have.  Caden is a strict believer in rules and he has learned that signs are often an indicator of rules for an area.  He monitors our speed in the car and questions any and every new sign that he sees. Recently a “no smoking” sign in the elevator proved challenging for us.  Most parent-child conversations would go like this:

                Child “What’s that?

                Parent “A no smoking sign.” 

The story would end here but in our world the conversation continued like this:

                Caden “What’s smoking?”

                Me “Nothing you need to worry about—it’s bad for you.” This was a rookie trap that I blindly fell into….

                Caden (now agitated because he didn’t know what smoking was, and if he didn’t know what smoking was how did he know if he was breaking the rule or no) “But I don’t know smoking.”

                Me (finally recognizing my mistake) “Oh smoking is something you can’t do until you are 18 and you have to use fire to light the cigarette that’s what causes the smoke.”

                Caden “Oh okay, can I push the button?”

Obviously the explanation eventually worked but I’m pretty sure that people in the lobby were disgusted and horrified that I was actually explaining smoking to my small child. I tweeted about this; unfortunately the incident didn’t translate well and I picked up an insane following from the “pothead” community but they dumped me when they realized I wasn’t nearly as cool as that tweet would have led them to believe.

To be continued.....