I have been doing a little bit if writing elsewhere.
This is one of a few pieces that I contributed to a book that is being released in April 2010. This is the unedited version…over 1000 words!! I received a request from a lovely young lady to trim it down to 250 for the final submission to the publisher. I managed to get it down to 399. Yay me!!
Dealing with autism is just plain hard, regardless of where your kid falls on the spectrum. The problems and needs vary according to each child, but it all boils down to one simple concept.
Your kid is different.
Describe them however you like: quirky, unique, special, extra-normal, hard-headed, beautiful, frustrating, wonderful.
Describe autism however you like: a disease, a disorder, a genetic condition, a blessing, a curse, just a normal part of everyday life.
Approach the treatment of autism however you like: Biomed, special diets, Applied Behavioral Analysis, occupational therapy, medications, no treatment at all.
Despite the many ways that we as parents of autistic kids can differ, there is one way in which we will always be the same. Our kids are different, and that is just hard. The reality of our kids’ struggles is something that we face every single day, and it certainly takes a toll on the mind, heart and body.
I have had some bad days, and, no doubt, I will have more. However, while I am certainly not reticent to air my emotional laundry, I do not want to do that right now or in this section of the book. I would rather write about a few important conclusions that I have come to as a result of my bad days…and my good days…and the space in between.
Life’s many difficulties are bound to stir up all sorts of emotions, but I have found having a child with autism to be particularly emotionally confounding. There are so many instances in which you simultaneously feel completely opposing emotions. Joy and grief. Acceptance and anger. Guilt and absolution. Other times, one emotion, usually a bad one, is so all encompassing that you can physically feel it pressing in on you. During the good times, you can feel a high that no drug can induce. One thing that I know for certain, whatever you are feeling, it is completely normal.
In my experience, it is best to let yourself feel all of them. Recognize them and sort them out into neat, little categories if you want to. My preferred labels are “totally awesome – enjoy it while it lasts” and “really sucky, but it’s just how I feel right now” and “totally counterproductive – stop right now.” Just feel it, whatever it is. If you try to ignore or shave the blunt edges off of anger, guilt, grief, it may retreat only to return later stronger and meaner for not having been recognized and dealt with in the first place. If you try to tamp down your joy because you think it will hurt that much more when a downward spiral hits, you are depriving yourself of the best moments in life. Ride the emotional roller coaster. If you are not constantly trying to get off the ride, you might find that the highs are more enjoyable and the lows are more tolerable.
All those feelings that you have? You don’t own the exclusive rights to them. Others are being knocked over by that very same emotional tsunami. Others share the same joys and heartaches. You may feel totally alone and cut off from the world, but, honestly, that is some pretty self-centered thinking. You’re not living in a vacuum in which you are the only one effected by your child’s diagnosis. Your spouse or partner, the person sleeping in the same bed with you every night, is struggling too. You need to share your feelings, communicate, confess your fears and bad thoughts to each other. Do not assume that he is doing just fine. Do not assume that you baring your soul will bring him down or increase his burden. There is no good reason for you to both seperately carry around the same weight. If you share it, it will lighten the load on both of you. Neither of you have to feel alone.
I used the example of a spouse, but the “share it” rule applies to other family and friends. There are other people out there feeling the same way that you do. Find them and build a community for yourself in which you feel safe, in which you can share without being judged, in which you can give and receive support. The autism experience strips you of all pretense. You need to surround yourself with people who don’t mind you streaking around emotionally naked, the kind of honest folks who will likely strip down and run around with you. Those are the people that know, because they feel it too.
There is a whole other sub-set of people in your life that you might not want to share it with, but you just might want to tell it to. The co-worker set, the lady at the bakery that knows your name because you come in too many mornings to tank up on coffee and donuts set, the Judgey McJudgerson in the grocery store set. I do not feel that it is my duty to inform the masses about autism, and I don’t necessarily work the big “A” into every casual conversation that I have. However, I find a certain comfort in talking about it. Some times, it is an effort to educate in general. Other times, it springs from a desire for people to know me and to know my child. I tell it in the hope that the next time that I am having a crap day, that person might just understand and give me a supportive smile…or that the next time Judgey McJudgerson sees a child acting oddly or tantruming in a store, she doesn’t turn up her haughty nose or scowl or say something demeaning to that parent because just maybe she understands that she can’t possibly know what that child and that parent are dealing with…or when my co-worker sees a child in her family that has issues, she recalls our conversation and gets earlier intervention for that child. I like to tell it, but that’s just me. Not everyone does, and that is just fine too.
Some days just suck, for any variety of reasons. I won’t bother to give examples; you have already experienced them. Sometimes you just have to say screw it. Screw autism. Screw this day. Do whatever you have to do to release all the negative emotions. Cry it out. Break plates. Punch a pillow. Go outside and scream at the heavens. After that…screw it. You can’t let one bad day bleed into the next. If you let that happen, your life can turn into an endless succession of bad days, and you’re very likely to miss out on some of the good things. You have to let tomorrow be a new day with a clean slate.
Here is where I confess something to you. I frequently really suck at following my own advice. There are many days in which positive, healthy coping just doesn’t happen. There are days when I want to hide and not face the world. There are days when I insist on keeping it all inside, even when I know that it is in there growing all sorts of nasty cooties and possibly tentacles. But, I have my box full of coping tools, and more often than not and in my own time, I manage to dig through it and find the tool that I need.