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August 28, 2012

Where to Put your Guilt

When I moved my family to Delaware 2 years ago, I thought I was prepared. Actually, I pretended to be prepared, but I really wasn't. I wanted to move, that was my primary motivation and I hoped that things would positively fall into place. They didn't. Had I done my research, I would have known that the state I was moving to did not have the resources and supports I had grown accustomed to in the great state of Pennsylvania. For one their behavioral health system was not really autism friendly. In fact the school told me that the state did not even have a behavioral health system, which I later found was not true, but I could see why the director told me that because it is only "really" available to those children who are a danger to self and others. I also did not know that the school district and special education program I was sending my children to was not very parent friendly. At least they weren't to me.

Here is the real important question; had I known all this before hand, would I have moved? Yes.  Why?  Because I wanted to move. And that's where the guilt comes in, at least on this issue. I personally was thinking only of my own desires to advance myself even in this small way that I risked my kids educational and mental health. As a result the kids have regressed.  Yes, I moved back to my home town, but the damage is done and now we are two years behind where they should be. Is this the worse thing I could ever do them? Not really, but you can't tell me that when I am beating myself up over it because my 7 year old can't read and can barely count.

Why continue to harbor the guilt? What use does it serve me? These are the questions I struggle with daily.  I know that I am not alone. When I talk with other parents they have similar tales of making lefts when they should have made rights. Guilt is a natural human emotion. The problem is when it becomes crippling, causing one inaction and fear of taking risk or to try something different. As parents with children on the spectrum one decision means so much; do I continue with this ABA program, should we focus on sign language or picture exchange, is it right to let the school district cut my kids speech? All these decisions have dramatic and varying cost associated with them.  Cost that could either bring positive skills and benefits or cost that can spiral into bad behaviors and regression. Because of the nature of autism, no one child is the same, no one program will have the same effect. What is a roaring success with one child, could have horrible consequences for another.

So what can we as parents do to not allow guilt to freeze us in place? I have a few suggestions.

1. Embrace the guilt
You have to. There is always going to be some new this or some new that coming out which allowed little Sally to speak for the first time and you were the last to know. In sales, its called "Fear of Loss." Its a sales technique to appeal to our natural desire to not be left out or not be able to have what we want. It's great if you need more commission, but sucks if your an overwhelmed parent who wants to ease your son or daughters burden. Don't believe the hype of every new widget that pops up in your inbox.  That's all it is - hype, designed to generate sales and interest. If you embrace the guilt, then these sales ploys will have no power over you.  You are doing the best that you can, I am doing the best that I can, there is no possible way I could know that XYZ therapy, device, supplement would work for my kid and if its too late, then ITS TOO LATE!

2. Stop caring about what ANYONE thinks
My favorite vice. I soooo care about what people think. I care about what people are going to think when they read this post, I care about what my neighbors think when my children are screaming, I care about what my family thinks, I care about what people think about my weight gain, I care about what people think about my hair.  I care, too much.  And if I'm right, so do you. My kids attract attention, where ever we go and you know what I noticed? They don't care. They scream and run and enjoy themselves.  They could care less if mommy is embarrassed. For the life of me, I could not figure out why they have no shame.  But do I really want them to have shame?  Not really.  Shame sucks. I have enough shame for all three of them and I think I would like to keep it that way.  Shame is what keeps you in your house when you should go out. Shame is what keeps you from speaking up. Shame is guilt's best friend. Whenever you allow what other people think of you to determine what your going to do; ask yourself, can they do what you do, can they walk in your shoes?  Most of the time, they can't. And if they can, just imagine something shameful about them and move on with your life.

3. Don't pretend to be fine if your not.
There are no prizes for the most optimistic parent. There is no governing body that will award you for grinning and bearing it. If you are not happy, then don't pretend to be. There is nothing worse than talking to someone who's engulfed in flames and they are claiming; "no....I'm not hot at all." We all need help sometimes, and we all need someone to bitch to. There is nothing wrong with that. You are not doing anybody any favors by pretending that your situation is not as dire as it looks. When you aren't real about what's going on you are only hurting yourself. Its the worse form of isolation. No one cares, because no one knows your drowning.  Guilt will keep you from asking for help because you feel you don't deserve help. And why don't you deserve help or compassion, oh because you brought your kids disability on yourself, right?  Its all your fault and you deserve whatever comes with that? Wipe that grin off your face and the next time someone asks you how your doing tell them, you may be surprised at the response.

I will be the first to tell you, I am no expert. I see things the way I do through trial and error. Like you, I never asked to be in this position or to deal with the varied challenges of raising three children on the autism spectrum.  I struggle everyday to make peace and find balance in my mind while trying to be an effective mother to my kids.  I know I have failed many days and I know there will be future failures to come.  I just try to remember that its not always my fault and that one day I will truly embrace my new favorite quote;

"Nor had I erred in my calculations--nor had I endured in vain. I at length felt that I was free."

In its original context this quote has nothing to do with guilt, in fact it is an expression of attainment. Taken from Edgar Allan Poe's, The Pit and the Pendulum, the narrator believed that he was free from his tortuous experience with the Spanish Inquisition. As this has nothing to do with guilt, when I read the quote, I felt a strange identification to the sentiments in my own context.

At the end of the day, I as a parent want to be free of shame and guilt, knowing that I had not "erred in my calculations or endured in vain."  As parents the antithesis of the guilt we feel is acceptance.  We must accept that there is no going back and that is not a bad thing. Don't mourn for the actions you did not take and the life you did not have.  Embrace your kids and accept that this journey we walk together is not for the faint of heart, but the for the over-comers, the endurers, the people who stick it out no matter what.  That's you.


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