Gavin’s #IVIG infusion was a very frustrating experience today



He was freaking out the entire time and not paying attention to the things he must pay attention to.

We’ve been seeing an overall trend of this kind of behavior lately and it’s not isolated to this one instance. It’s been a little bit since he’s done an infusion but I worry that the overall decline in ability is a major contributing factor here.

If it was just him being out of practice, we coukd simply practice and expect to see some positive movement forward. I just don’t think that’s the case but I’m also hoping I’m wrong.

We will still practice and do what we can to recover those skills because aside from giving up, that’s the only thing we can do.

I’m really frustrated because I didn’t watch him more closely when he was putting things together. I’m also frustrated because he doesn’t even recognize what he did wrong. He simply doesn’t see it.

I’m so grateful that we have his meds back but it’s been a frustrating experience getting him his infusion today. We’ll just have to keep plugging away and backtrack when necessary.

Sometime you have to go backwards to move forwards.

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Becky Wiren

It’s the feeling of fighting a battle, but not really winning as much as coming to a stalemate. You had to fight to get Gavin’s IVG, and now you have to fight to help Gavin keep skills he had. There’s rarely a feeling of resolution and completion. I get it. In a lesser way we have similar things here. So we’re hoping for the best for Gavin, you and your family.

Sandra

WOW! That looks complicated. Have you tried taking pictures of the proper order of doing things and printing out the pictures? I don’t know your son’s reading level, but you could have simple sentences describing the order of things. Children with autism often learn better with visuals. Have him read, look at the pictures and do the steps. You could do “backwards chaining” and do the first few steps with or w/o him and have him do the last one or two steps by himself, gradually increasing the steps he does himself.

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