Perception: One reason why being an #Autism parent is so hard  

I mentioned earlier that I’ve been struggling with Gavin today. Just so we’re perfectly clear, he’s not being a problem like he used to. He’s simply being Gavin and that’s exhausting for those around him, including myself. 

Gavin is absolutely struggling in his daily life. He doesn’t necessarily see it as struggling because he doesn’t really possess that higher level of self awareness anymore.  

Here’s what kind of things are frustrating me now. 

Last night, Gavin finished up his infusion and removed the needles from his stomach. He always has some tissue on hand in case there’s any leakage or bleeding.  

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He removes the needles and I hear him freaking out about how badly the one infusion site was bleeding but he seemed to have addressed it himself and moved on. That’s what we want him to be able to do. 

Having said that, a little bit later on, he begins complaining about his stomach being sore where the needles went in.  That’s totally understandable because we’re pushing a considerable amount of fluid into his belly fat and that probably doesn’t feel good. 

In front of myself, Lizze and the boys, he continues to talk about his stomach. I ask him to show me and the infusion site looked fine. There are times it looks sore but this wasn’t one of those times. Not knowing what he feels or doesn’t feel cause I’m not walking in his shoes, I tell him all will be okay and to just rest for a little bit. 

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At this point Gavin begins telling me how much the infusion site bled when he removed the needle. 

His exact words were it was bleeding like nuts and blood was everywhere. 

This entire process he’s telling me about happened in front of everyone and so I didn’t know if maybe I missed something. 

As he’s explaining what had happened, I asked him where the tissue was that he used to stop the bleeding.  He went over and brought it back to me and said, see all the freaking blood? 

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The picture above is the tissue he used and the dot of blood that’s smaller the the camera lens on my tablet, is all the blood that came out.  This is what he describes as bleeding like crazy or bleeding like nuts. 

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5 Comments

  1. Wendi

    Hi Rob. I’m Wendi from SC, and my 9 year old daughter has autism (really Asperger’s), along with ADHD, ODD, and Tourette’s. My husband and I believe that she also has some other type of underlying comorbid issue going on, or at the very least developing, that we can’t out our finger on.

    I know our situation is vastly different from yours, but we also have that perception problem with her. We never quite know what to believe. Just wanted to say that you are not alone in that department.

    1. Wendi,
      It’s so nice to meet you. I feel your pain here and I understand how this kind of perception issue can make an already challenging life, more challenging.

      Thanks for reaching out and reminding me that I’m not alone. I truly appreciate it. Please remember that I’m always here if you or your husband need anything.. ☺️

  2. Kim Gebhardt

    I feel like this has zero to do with autism and everything to do with all kids (and some adults). Kids are incredibly hyperbolic. They are always starving to death or ate an entire box of cereal or fell from 100 feet in the air or, in this case, bleeding like crazy. The blessing for most parents is that they know their kids are bragging and/or exaggerating, whereas with Gavin, some of the things he talks about could actually be happening. I don’t know that there is an easy answer to this type of problem other than keeping an eye on him every minute of the day, which would be sure to drive both you and him crazy.

    1. That’s one of the reasons we have the cameras setup. We can keep an eye on him from anywhere and it’s a also a two way intercom system as well.

      It helps us to gather more information without relying on what he has to tell us.. It’s sucks but we try to employ anything that can help…

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