The straight dope on how I cope. - A conversation on Autism.
Excerpt from the offical John Roedel Dictionary:
COPING- A defense mechanism thingy that allows me to survive an unpleasant situation. This usually involves high levels of reality television, music from They Might Be Giants, and lathering my torso in carmel. This prescription of inane programming, senseless music, and three inch layer of dessert topping helps dope whatever unwanted feelings that have set up shop in my delicate muppet-like heart.
Note to self: Carmel is impossible tricky to get out of armpit hair. Still, as delicious as ever though.
A day ago I got into an e-chat with a gentleman who recently started reading my blog. With his permission (and actually he was the one suggest that I do blog about it because maybe one other person could benefit from the conversation) allow me to paraphrase the convo. He is a dad of a child who was just recently diagnosed with Asperger's Syndrome. For info of that diagnosis please visit here.
DUDE I JUST MET (hereafter known as "Dude"): I was wondering if I could ask you some questions.
ME (hereafter known as "me"): Sure. You should probably lower you're expectations of what type of logical or helpful answers I can give you.
DUDE: I figured that on your recent blog postings. Just joking...kind of.
ME: Glad you like them. Um..kind of.
DUDE: I have been reading the posts you wrote on autism and I was wondering how much you understand about Asperger's syndrome.
ME: (this was where I explain what I know)
DUDE: (this is where the Dude explains how little I actually know about it. he talks about his families situation with their four year old boy )
ME: I can completely understand what you are going through.
DUDE: My question is how do you cope with the grief, guilt, and sadness that comes with raising a child that may not ever be able to function independently?
ME: How do I cope?
DUDE: Yes. It seems like you have found a successful way to not let this become something that has sent you over the brink.
ME: Well...that is probably because I have failed to blog about the times I lost my mind and ran through the neighborhood wearing only a Domino's Pizza box.
DUDE: Ok. But how do you keep yourself from not always doing that? How do you cope with all the pain? How do you make it go away?
ME: (some lame cliched answer that looking back now makes me want to rip my liver out with a mixing spoon. I am not sure but I may have actually quoted lyrics by Phil Collins...if I did I am sorry and I will send you 100 dollars for the trauma.)
DUDE: That seems a little easier said than done.
ME: (realizing that my previous answer was a lie to both him and myself) You are right. I call "BS" on that too. To be honest I guess I am a little confused by the question. I don't cope in the way I think you understand it. I do not have strategies that take away the emotional strife, nor do I have rituals that "dope" down the pain.
DUDE: So what do you do??
ME:Ok, first thing is I am not an expert. The only certification I currently have is from Marvel comics as a "lifetime fan". Ok....so take my advice knowing that I am no way trained to give any.
DUDE: Got it. You are an idiot like me.
ME: There is no way to "make it go away". I just let myself feel whatever it is. This goes for any situation for me, not just in the experiences of raising a child with autism. If I am sad I no longer bury myself in ice cream to deal with the emotion. I just let myself be sad. If I am worried I don't camp in front of the XBOX for several days. I allow myself the right to be worried. I used to bury everything that was negative in my life and not give myself the chance to let the infection heal itself. Then...I find healthy ways to "cope" with things.
DUDE: You just allow yourself to feel? That sounds like a bit from DR Phil.
ME: I am sure it does. Look for me if I deny the sad and heartbreaking times to have their moment I have found that I deal with it in other less than healthy ways...like eating an entire jar of Jiffy Creamy Peanut Butter. Please keep in mind that I would encourage you to talk to a professional if you were having some serious emotional issues. I am not certain that you can simply make any of the bad stuff you may be feeling just "go away" without dealing with it first. That is what I do. I allow myself to feel bad. That is not the end of the world. Just yesterday I was at Star Bucks and someone in front of me said they were "coping" with the economic crisis by refusing to admit that it was something they should worry about. To simply deny how you feel is not a good first step.
DUDE: I am looking for some strategies I guess of what you do with those feelings...anger...etc.
ME: Turn the anger into something positive. Use that adrenaline to help search for new therapies, workout, spend time with your child. Just don't bury yourself if what you are feeling. Talk to a professional if it something that you feel that is taking over your personality. I have been there...I know how easy it is to lose identity in all of this.
DUDE: So thats what you do? Workout?
ME: Uh. No. I make the Stay Puffed Marshmallow Man look like Kobe Bryant. I write, walk, or meditate.
DUDE: How very zen. 
ME: I would also encourage you to visit asdparentsupportnetwork.com. There are some great resources there for ways to manage with the unique stress that comes with the territory of raising a child with special needs.
The convo went a little bit past here but the here are the bullets I want people to get from this:
- People should take advice from me with the understanding that I am a little bit of a schlep. To give you an example of what you are dealing with is that just last night I got my thumb stuck in the nozzle of my garden hose. Today my thumb is still red, but very very clean. Point is I am glad parents of special children like my blog, but I also encourage you to seek out professional help in regards to some of the issues that I sometimes am asked about.
- My wife and I learned early on that raising a child with special needs is something that requires emotional patience. One day may be golden, the next day may suck more than three day old Lobster Bisque. We had to find ways to cope with our emotions by allowing ourselves to feel them, and then to find healthy ways to express them.
- I have never actually ran through the neighborhood naked 'cept in a Domino's Pizza box. It was Papa John's....
- If you are, or know anyone who is raising a child with special needs I encourage you to visit www.asdparentsupportnetwork.com . I know the gent who operates it and I can tell you that he has been as much of a benefit it our families life as any doc we have had.
- I will continue the groundbreaking series on my walk as soon as I am done negotiatingthe movie rights with Pixar.
Today we went to the opthamology clinic because Joey's eyes are in bad shape, conjunctivitis...he screamed, pounded the walls, punched me in the nose and the ear, had to be held down for the exam, tried to run out of the room,tried to run out of the eye center into the parking lot, dr had to bring me my glasses which I had left in the waiting room. And gee, we have to go back TOMORROW AND DO THE SAME THING ALL OVER AGAIN WITH THE BIG SHOT HEAD OF PEDS EYE STUFF. I CAN HARDLY WAIT!!! HOW DO I COPE...only through having people like you John, to talk to...oh, and I smoke like a chimney....stress has made me look so old the dr. blinked when I said I was Joey's MOM, he probably thought grandmother....we just cannot ever give up...that's how I cope
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