Walking Through The Storm Alone

So there is a big story in the news right now about the mom who tried to kill her autistic daughter. You can read the store HERE. I have been thinking about this nonstop and contemplated writing about it. And then not writing about it. This is a touchy subject that I normally wouldn’t touch but here is what I will say…

I have never known loneliness like that of a special needs parent.

3158b6db386b31ee0d45205581a88e90First, I don’t condone what she did in anyway. Let me say that first. But what breaks my heart is that she felt that she had no where to turn. This was a good mom. I know that to be a fact.

Raising a kiddo that is autistic is almost impossible to put into words. (Even though I am constantly trying!) It is so unbelievably lonely. There are no thank you’s for being Cooper’s mom. I remember when Cooper was two or so I called my mom crying after a horrible well child appointment. I said something like, “why is it like this? Why is he like this? He’s not normal? I can’t do it anymore!”

What I was trying to convey is that there are very few cute stories or people gushing over him. The high fives and waves and so bigs came late. It all came late. When I think about Cooper he’s just sorta there. When he is noticed he is usually acting out. The moments I remember about Cooper are epic tantrums over hair cuts and meltdowns over movies. Don’t get me wrong, we have special moments too but they are fewer and farther between.

This mom felt trapped. I get that.

Cooper didn’t sleep through the night for years. At one point he was waking up every hour and screaming. Nothing worked. Nothing stopped it. Not white noise or nightlights or blackout blinds. YEARS went by. And he couldn’t poop. Every poop brought on screams and I couldn’t fix it. I would have to lay him down and dig the poop out of his butt. And he couldn’t communicate and he couldn’t do really much of anything. And then the ear infections started. Or maybe he was having them forever. I’ll never know. And I shit you not there were days when I thought about driving off a damn bridge. I was so freaking tired. And so alone. No one understood. Especially me. I would cry the whole way to work and the whole way home. Why was this happening and more specifically, why was it happening to me? I completely lost myself to my child. My child with special needs yet at this point I still didn’t know it.

Jamie and I slipped farther apart. Mostly out of exhaustion. We started doing stuff apart because we couldn’t bring Cooper out in public. And we went to doctor after doctor and called school districts and psychologists and paid copays and bills, went gluten free, tried fish oil and the list goes on. No answers. I lost friends. We both did actually. We stopped going to events. We refused to get babysitters. I cried A LOT. Jamie didn’t know how to deal with me. I was a MANIAC. Yes, it’s true! I sent him blog posts and articles and then I would yell at him if he couldn’t discuss them later. There was no winning for either of us. I was heartbroken and he didn’t know what to do.

I was lost.

If you read the article about this mom they describe her daughter as violent and aggressive. I get it. I don’t condone what she did in anyway. But I get it. She had no where to turn. And my heart breaks for her. I doubt that she ever wanted to hurt her daughter. She probably just wanted a damn break and didn’t know where to turn. She lost hope. She got tired of trying to survive.

I feel that way sometimes. Cooper is going to be 4 and he can do ZERO self care. Last weekend Sawyer helped me change Cooper’s diaper. PUNCH TO GUT. A mom like myself blames herself half the time for not being able to break through. This little girl was older and stronger that Cooper. I can’t imagine.

So…..yeah….that’s all I have to say about that. Judgment is a scary thing. I can’t imagine what that mother’s days were like.

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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5 Comments

  1. ontheupcyclemom on September 3, 2014 at 1:19 pm

    The sad thing is, when things get tough most people walk away, I have found. I have members of my family who have never babysat once for my daughter, but other kids in the family have been taken for weekends, taken on trips ect. They have all these “ideas and opinions” but offer no real help or relief. It really hurts that no one seems to want to build a relationship with her. I see so much potential and personality in my daughter, but no one wants to put in any effort to get to know her. Hugs to you. sadly this is not an easy road to walk especially alone as we often have to do.



    • Avatar photo findingcoopersvoice on September 3, 2014 at 1:20 pm

      I get it friend. It’s so hard. I worry about Cooper starting school and that the teachers won’t try and break through. I hate it.



  2. rgemom on September 3, 2014 at 8:58 pm

    I so get this. It is so very lonely, even when we’re surrounded by friends and family. Until they’ve walked this walk, they just don’t get it completely, no matter where their hearts are. And people who aren’t really friends to begin with will walk, sadly. While for some people it may be easy to judge another parent, for those who live it, it’s almost understandable.



  3. Renae Billingsley on April 18, 2015 at 10:35 am

    Thanks for being Cooper’s mom. It gets better. 🙂



    • Avatar photo findingcoopersvoice on April 23, 2015 at 2:40 pm

      Thank you!!!!!