July 29, 2014

I Feel Your Pain

This is a post that has needed to be written for some time now.

If your kid was anxious or being bullied, how would you feel? Probably pretty bad. Your heart would ache, and though you'd be strong for your child, you would be crumpled inside. You would be heartbroken, yes? I would. It is how any loving parent might feel.

So why is it when a parent of an autistic child expresses their own pain as a parent, she is vilified?

If you are not involved in the online autism community, you are probably confused by this. If you are the parent of an autistic child, you are probably nodding your head. You've heard this argument before.

How can you possibly be talking about your own need for support? It is so much harder to be the autistic person. 

Pain is not a competition


My son's struggles are not mutually exclusive to mine. We can both be hurting, just as we can both be joyous or scared or hopeful or all of the above. I do not deny my son's challenges by recognizing my own.

Moe gets frustrated. His communication challenges make things very difficult for him. And when he is frustrated or unable to tell me that he is hurt, or uncomfortable, or bored, or he doesn't understand why I'm asking him to do something, or not letting him have m&ms at 7:00 in the morning, he can get aggressive. He cries, and bangs his head. He scratches me and bites his hand. He is strong and it is scary.

Of course I know he's hurting. Of course I know it is hard to be him. I am his mother, and I—as much as is humanly possible—feel his pain. I do not know what it is like to be him, but I see his struggle and I would give anything to make it easier for him.

Moe had three stitches in his forehead a few years ago, and, despite the numbing cream, screamed out in pain at each needle poke. I did not feel his physical pain but I will tell you this: if I could have taken that pain instead of him, I would have. It hurt me to my core to hear him scream. I remember that sound perfectly, though Moe has certainly forgotten it by now. This is no different.

Your feelings are legitimate

You are allowed to have feelings.

Let's say that again. You are allowed to have feelings. Not just your kid. Not just everyone around you. You.

Let's get real for a moment. Raising Moe is really hard. We have no real schooling options. We have made a decision to try some pretty serious medications to help keep Moe from hurting himself and others. I worry about Moe's future and the lack of housing options for him as he grows.

And it is really, really heartbreaking and stressful when your child attacks you. And it is even more heartbreaking to see that child hurting his sister, or himself.

So you know what? I get to feel those feelings of fear and stress and heartbreak as they exist. They are genuine and legitimate and no one gets to tell me otherwise.

Feelings are not inherently good or bad

Feelings just are. I can control how I react and use those feelings, but I cannot help having them.

So what?

Why is this important? Why give voice to what might seem a ridiculous discussion to anyone outside of this community? Because these kinds of arguments are tearing apart a community that should be working together. Because when you tell a mother that she shouldn't feel stress or anger or grief, you don't change her feelings, you push those feelings to a place of guilt and shame where they will simmer until they boil over. You deny a father the support and help he needs to be able to put his energy into helping his children. Because ultimately there is no one else. We as parents bear the burden and the joy, the responsibility and the privilege of caring for our kids.

And we're doing the best we can.

12 comments:

  1. Thank you for sharing such an important message!

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  2. Co-sign! We are people, never accessories to our children.

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  3. Ugh. I wrote you a long comment, but it disappeared into the ethers of the Interwebz.

    I will repeat just the important part: So many parents in the autism community are raw and silently suffering from the internalization of so much emotion: fear, pain, anxiety, stress, guilt, confusion, isolation. The opportunity to reach out and express that and to receive support (rather than judgment, criticism or threats) in return may make a tremendous difference in that family's collective life. Thank you for being brave enough to throw out this life preserver even as you need one of your own. Much love and tremendous respect.

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  4. Ugh. I wrote you a long comment, but it disappeared into the ethers of the Interwebz.

    I will repeat just the important part: So many parents in the autism community are raw and silently suffering from the internalization of so much emotion: fear, pain, anxiety, stress, guilt, confusion, isolation. The opportunity to reach out and express that and to receive support (rather than judgment, criticism or threats) in return may make a tremendous difference in that family's collective life. Thank you for being brave enough to throw out this life preserver even as you need one of your own. Much love and tremendous respect.

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  5. This.is.amazing! And, well, something I need to hear today because I am struggling and feel like if I say it too much, then I'm awful. Sigh. Thank you. I am totally following your blog now.

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  6. Bravo. There are no trophies or first place for misery handed out.

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  7. I completely agree and it's a shame that people don't feel like they can express the hurt, sadness, and frustration they feel. Even someone saying they hate autism gets turned around and people say then they must hate their child. I love my son immensely, he is truly a joy to me and there are things about him that are special because of autism. But I never would have chosen Autism for him.
    The pain, anxiety, frustration, self-harm, hurting others, destroying his own favorite possessions during melt-downs... those hurt him and they hurt me. We should be able to express our feelings and get support.
    Siblings as well need to be allowed to have their feelings acknowledged. It's tough for them too.

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  8. Agreed. I stopped following certain autism bloggers because if you expressed frustration or misery of what type of autism your child/your family was dealing with than you were vilified because apparently everyone has to be shown it's a wonderful gift. To some it's not. They love their children but hate what it has done to them.

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  9. Awesome words! I have been on this journey 21 years, and I do not look to "support" groups or pages, you are right that the very community we are supposed to be able to look to for comradery and commiseration is tearing itself apart and polarizing us. I am not a robot and I refuse to be minimized as a human being or have my feelings disregarded. I hated ABA and special school programs because I watched them try to make my child perfect - no socially unacceptable behavior, nothing inappropriate - while all around me "typical" children were consistently allowed to be inappropriate and rude and un-corrected, and allowed to make mistakes. Now we are expected to be perfect while typical parents are allowed to get angry or frustrated because Junior misbehaves or makes them worry or hits them, or "too stressed" (ha!) because he has too many earaches and it takes up too much or their precious time, and no one would call them a bad parent! My daughter is a piece of my heart, and I love who she is just like my other two children. But no one is going to tell me that after putting my whole life into her wellbeing through autism and devastating epilepsy that I am bad for being human as well. Thank you for finding the right words to express this.

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  10. Wow. YES. We are all doing the best we can and our pain, our realities, they matter. So so much. <3
    We are not saints. We are just here, doing what we do, while we do it. We don't have all of the answers. We're here, and our doings and beings and feelings, they are just as important. Maybe, more so. XOXOXO

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  11. I bow my head to all parents who have kids with any needs at all--especially the special ones. My aunt, only two years older than I had MD her whole 44 year life so we knew some struggle but nothing like autism. You are heroes and amazing and courageous and human--and that is the most important part of it all. Thank you for sharing such intimate details of your lives with us so we can learn.

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I love comments! Respectful disagreement always encouraged.

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