Guilt and Autism

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 Self-reproach; Self-condemnation; shame.

 A feeling of having done wrong or failed in an obligation.

Interesting definitions.

Not mentioned: guilt, whether real or imagined, is a very powerful force. I think guilt plays heavily into parenting a special needs child. Parents of kids with autism are not immune to this concept. The idea of “refrigerator mothers” is a great place to start. Back in the not-so-distant past, mothers were blamed for their children’s autism because they allegedly hadn’t shown them enough affection. They were too cold – like a refrigerator.

Personally, and I speak for myself alone in this post, I feel lots of guilt surrounding Jacob and his ASD. People don’t like to talk about guilt, or their dark feelings, but I think it’s important to share both the light and the dark side of ASD. More important than that, if I feel nervous about hitting the “publish” button, then I figure I’m onto something.

Again, I don’t want to split hairs between real and imagined guilt. This is my story, and this is my truth.

I have felt that Jacob’s disability is a karmic response to some sin committed in my past. His autism is a punishment for something I have done.

I feel guilty for not recognizing the symptoms of ASD in him sooner, having somehow delayed the treatments and therapies he so desperately needs.

I feel guilty for bringing him back to small town Maine, where I feel most comfortable, rather than staying in the southern part of the state where there are more services. We chose our real and church families over access to therapies.

I feel guilty for not knowing more about Special Education law and Jake’s rights. I don’t know if we’re doing as much for him as we could be. In fact, I doubt we are.

I feel guilty for every time he has macaroni and cheese for dinner … again.

I feel guilty for those times I plunked him in front of his favorite movie so I could grab a shower and get ready for work.

I feel guilty for working seven days per week and not spending more father/son time with him. Maybe I could do more if I only had more time; if I only made more time.

I feel guilty for sending him to bed with Netflix so I can spend a few minutes with my wife before I fall asleep on the couch.

I feel guilty that it’s hard for the other kids to have friends over, because we don’t know how Jake will react, who he’ll yell at, or if he’ll keep his pants on.

I feel guilty that we have to divide and conquer as a family, and that we can’t do more together. There are places we can’t go and people we can’t visit because those places aren’t Jake-friendly.

I feel guilty that we don’t have a solid plan for what will happen to Jake when we’re gone. It’s the most important question we’ve been asked, and I don’t have a good answer.

I feel guilty every time we get a babysitter and go out on a date, just Beth and I.

I feel guilty when the NT kids and I get to do fun stuff, and Jake’s left home with Beth.

I feel guilty at birthday parties, because no one is allowed to sing “happy birthday.” Jake won’t allow it. It’s the same thing at holidays; everyone sits around the table, and Jake’s alone in the other room.

I feel guilty that we live in a three bedroom home, and Jake has to share a room with Gabe. Or, similarly, that Gabe has to share a room with Jake.

I feel guilty when people say, “I’d never change a thing about my child with ASD; he’s perfect.”  I’d change Jake in a heartbeat.  I love him, but I hate his disability.

I feel guilty for secretly hoping he’ll grow up and have to live with us for the rest of our lives.

I feel guilty for secretly hoping that he’ll grow up and move out.

You might be asking yourself, “what do you have to gain by sharing this?”  Nothing, really.  At least not personally.  Maybe there’s someone out there who reads my stories full of sunshine and rainbows and thinks that I’ve got it all together and never have any bad feelings.  Maybe my stories have set me up to be the unattainable role model that others can’t compete with – and thereby get feeling down themselves.  Truth is I don’t have it all figured out.  I do the best I can with what I have, and lots of times, Jake deserves even better than that.  I think it’s that knowledge that keeps us going, keeps us striving to do better next time.  So, am I looking for a pat on the back and a few kind words?  No.  I just want people to know that they’re not alone if they feel this way, too.      

Can you relate?

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    • Forrest on June 23, 2014 at 9:21 pm
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    Thanks for sharing this. It helps knowing we are not alone in what can feel like a hellish trap some times. (I feel guilty about that last sentence)

    • Wanda on June 22, 2014 at 11:54 am
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    Yup feeling like that for so many years, now trying to separate so I can do whats best for her daughter my granddaughter who has ADHD and wondering how I can do better. Hoping she doesn’t develop other disorders like Mom so she will have a happier life.

    • Stacie Johnston on June 22, 2014 at 7:12 am
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    Ryan, this is exactly how I feel. The guilt sometimes consumes me about Dylan. Great post. Not many people are willing to voice any guilty feelings. Thank you!

    1. Stacie, I think that saying the things everyone feels but nobody dares speak, is powerful. It’s when we keep these thoughts to ourselves that we really feel alone.

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