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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