A mile in my shoes..

In honor of Autism Awareness month I thought I would revisit some older posts. I think these are very relevant and I hope it gives you a better understanding of what losing a child to Autism feels like, at least from my perspective. In my situation my oldest son Gavin developed “typically”. He later regressed into the world he now lives in. Many people won’t understand this but some of you will know exactly what I’m talking about. I realize this doesn’t apply to everyone but it does to my family.
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I hate autism. I hate everything about it. My kids are not autism. I hate autism for doing to them, to us what it has done. Autism is a thief. It’s a coward. It sneaks in and steals our kids right out from under us. Autism is a cruel and unforgiving disorder. It takes relentlessly and never stops.

My Story

I hate hearing how it could aways be worse. What is it like to have autism in our lives? As a father, I don’t know if I even have the words to describe what it’s like. I’m sorry if I offend anyone with this but it is what it is. Gavin is our 11 year old son. He died at age 4. That’s what it’s like for me. He has a rare, regressive form of autism. Sometime after his 4th birthday a switch flipped and the Gavin we knew and loved was gone. I really mean that. The child that was, no longer existed. What remains is a shell of who he was.

Unless this has happened to you, please don’t judge me. Gavin was my everything. He wasn’t even mine but to me he was. We went everywhere together. We went fishing and to the playground. We had camp outs in the living room. One day all that was gone. He would no longer connect. It was like he didn’t know us. He would hug us out of habit. I felt the difference. He was gone and we didn’t even get to say good bye.

The truly cruel part of his autism is that for many years after we would get these glimpses of him. It was like someone briefly waking from a long term coma, confused about what happened but there. He would somehow find his way out. It never lasted more then a few moments and then he was gone again. Every time this happened it was like losing him again for the first time. It was like watching him die over and over again. He would come back and then go away again. Very few people know what that feels like. It was torture. Having someone you love taken away is a horrible thing but imagine having them taken away over and over and over again. Watching helplessly as something dragged them away into the dark and there is NOTHING you can do. You actually grieve as though they are dead, because in reality the person they were is. The person you knew and loved is gone. All you have left is the physical body, a shell. The essence of who they were no longer exists.

Now imagine having finally come to terms and then out of nowhere they come back. You don’t know what to do or say because there’s no time to even process it. You finally figure out what to say and they are gone. All the things I had wanted to say if I had the chance slip away unsaid. I don’t have to imagine anything. That is my reality every single day. Every single time I grieve like it’s the first time. I don’t know how else to explain it.

You want to know how terrible I am? Do you want to know how weak I am? After awhile I actually prayed for him to stay gone. God forgive me, I just couldn’t take it anymore. The pain I experienced each and every time was unimaginable. It’s like a nightmare you can’t wake from. I can’t explain what it feels likes as a husband and father to experience this. You see them physically there but that’s it. They don’t connect on any meaningful level and everything becomes mechanical, emotionless and empty.

Gavin hasn’t found his way back in many years. There are so many things I want him to know and I will never have the chance to tell him. Most of what I say anymore has little to no impact on him. I can’t have a conversation with him because he doesn’t pay attention. Everyday I have to see what I no longer get to have. The pain never goes away. Anyone that says that it does is either lying to you or themselves.

Now let’s talk about guilt. Not only are you grieving but the guilt is unbearable. You feel like it’s you fault. You might not say it but deep down you blame yourself. If I had only been a better parent. You question everything you’ve done. You try so hard to remember when it happened but you can’t. I have one memory that haunts me. It’s the last memory of Gavin I have. He was 3 years old and I took him fishing for the first time. He actually caught a blue gill all by himself on his little fishing rod. We were fishing off the gazebo at the time. I remember him sticking his head between the spindles on the outside walls talking to the ducks. I actually have a picture of that. I was tired because I had just gotten off of a 48 hour shift as a medic. He wanted to stay and play with the kids on the play ground. I said no and we went home. That was it. I never had another chance after that. He started slipping away shortly after. The worst part for me is I never got to say goodbye. What would it have hurt to let him play a little bit. I took that from him.

I know all about guilt. I hate everything about my relationship with Gavin now. It’s tense and volatile. I have no patience for him anymore. His behaviors, though not always his fault have put a tremendous strain on our family. I’m often resentful anymore for the impact this has had on Lizze’s health as well as our other kids.

But what if the truth is I resent the fact that his physical person is here and that’s all. What kind of person let alone father does that make me. It just hurts to much sometimes to see him but know he isn’t there anymore.

This is what it was like for me to lose Gavin. This wasn’t easy to write but I just needed to say it. Maybe it explains why I am the way I am. Maybe it gives you a better understanding of what it’s like to be me. Maybe you know someone going through this also. Maybe now I won’t have to keep explaining why we do the things that we do. Maybe I can just leave this here instead of carrying this around with me.

 

-lost and tired

 

8 comments

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    • rjones22 on April 5, 2014 at 1:36 pm
    • Reply

    rob, i have read your blog from first post and wil keep reading and hopefully learning. I am going to have to come back to this post to read it as i just couldnt make myself read it right now as i knew what it would say and it puts it out there for what yall are going thru and other families affected by autism and other stuff. kudos to you. i am always in your corner and will come back and read the post when i am strong enough to read it. here i am not strong enough to read it because i know what it says and here you and your family are with the strenght to live it.

    • outoutout on August 28, 2011 at 10:01 pm
    • Reply

    Wow. I'm truly sorry you feel that way. Truly sorry.

    I'm an adult on the autism spectrum who found this blog while searching for autism-related Android apps. I don't know whether you'd be interested in talking to a person like me. Maybe you're not at the point where you can. Maybe you think I couldn't possibly understand. Maybe you'd be wrong. If any of you want to see another point of view, look me up. @outoutout on Twitter.

      • Lost_and_Tired on August 28, 2011 at 10:09 pm
      • Reply

      This was an old post. I was sharing what I felt like many years ago. I was trying to help people going through something similar to understand that it\’s OK to feel what you feel.

      I would love to talk to you. Everyone\’s story is different as is everyone\’s experience. Thank you for sharing your thoughts but please don\’t misunderstand my purpose. I was grieving and my son has suffered profoundly for a host of things, so our situation is a bit different then most. Please feel free to share your thoughts as I value your opinion and perspective. Have a great night 😉

  1. Thank you for this article. No one lets me say that it is like my child died, but it is. I would even say that it is worse. That child is gone but instead of being allowed to grieve and move on, I'm stuck spending endless effort and funds for the smallest amount of progress. She takes from everyone in the family (time, energy, attention, sleep, etc.) and gives back nothing. When things are really bad, I wish that God had taken all of her so that the rest of us could live normal lives.

    1. I can't express the amount of courage it must have taken to say that. I know EXACTLY how you feel. Not many people experience this side of Autism. I applaud your honesty and courage. Thank you so much..

  2. It gets better. I know that phrase is used for something else, but it does. It's so good to see some honesty, too. Sometimes I think if I read one more post of "my special angel is teaching me what is important in life and brightens the lives of everyone he smiles at" I may become violently ill. And some people get PISSED OFF reading posts like yours. Lucky bastards that they don't understand what is behind the post, you know?
    But it does. I remember my husband would come home from work every day and ask, "Was Teddy here today?" and too often I'd answer "no". I described him as feral. It was true, and it hurt, and it seemed cruel. But that is what it was. And Ted still can't talk and he probably won't be independent but most of the time things are just really cool.
    Except the laughing fits. Laughing for 2 hours at 3am sucks. I will NEVER see joy in that. 😉

  3. Man, I could never even come close to imagining what that must be like. No father that reads this will get much into it before feeling for you.

    I wish there were some words; except to say. Thank you for sharing. You guys are a beacon of what humanity can be in a world that seems to be filled more and more with the low end of the gene pool.

    Hang in there.
    Jon

    1. Thank you for saying that. 🙂

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