Unfortunately, I had to teach Gavin a lesson this morning

Unfortunately, Gavin’s having to learn a lesson this morning. Every Monday and Friday morning, Gavin needs his IVIG infusion. This is something he’ll have to do for the rest of his life. It’s not something that gets better and it’s only likely to get worse over time.

We have a rule that Gavin must do his IVIG infusion first thing in the morning.

He’s supposed to eat breakfast, take his meds and on Mondays and Fridays, get his infusion going.

This morning he ate breakfast, took his meds and went upstairs to play his tablet. When I realized the time, I called him down and questioned him about this. As soon as I pointed out that he had not started his infusion, he immediately reacted by punching himself in the forehead.

I reminded him that he’s allowed to be frustrated but he’s not allowed to be violent towards himself or others.


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  1. Get a nurse in to help him out. It’s easier and it will stop the stress.

  2. I read something interesting about the human memory. There are chemicals that build up on people’s brain nerve receptors that inhibit learning. This was a science article and it concerned older people with Alzheimer’s and dementia.

    The good news: learning new things actually helped fight this problem. More than anything else, learning new things did the trick. Because new chemicals built up on the nerve receptors and made a pathway for thinking.

    I don’t know if this could ever help Gavin at all. But it does seem like helping him to keep doing certain things and relearning them if necessary, is only a good thing.

    • Pony on August 13, 2018 at 12:46 pm
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    Maybe it is just me, but you really seem to be coming down hard on Gavin recently. And maybe that is just a combination of events happening at the same time. But do you think your frustrations are coming out in your interactions with him?

    1. It may seem like that on the outside but the reality is that he’s struggling more and more. It’s frustrating for sure. Of course it comes out in my interactions with him from time to time. It comes out when I specifically tell him that I’m frustrated and why I’m frustrated. Gavin is a constant source of challenge and it’s exhausting.

      It’s an impossible situation and I have lore patience with him than anyone else. That said, he’s become much more challenging as he gets older. Some of the challenges are related to decisions he makes that create problems and others are simply the result of all he’s going through.

      If you’re asking if he recieves the brunt of my frustrations, the answer is no. A large part of why Lizze and I are so exhausted and stressed out is because we go to great lengths in order to not take things out on him or the boys.

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