The painful truth about my son's condition - Page 2 of 3 -

The painful truth about my son’s condition

For the past few weeks, we’ve been seeing a steady decline in his level of functionality. Things he was once able to do, are no longer being done. This is very evident in his chores and how he’s doing them now.

Gavin has been learning to do things around the house for a last few years. He’s not been in school for both physical and emotional health reasons, but needs to be learning some basic life skills.

I’ve taught Gavin to do the dishes, wash his own laundry, help out with the litter boxes, and his personal favorite, managing the trash and recycling.

Over the last few weeks, there’s been a dramatic decline in his ability to perform these tasks. For a very long time, he was doing exceptionally well. In fact, he was doing so well, I was honestly very surprised.

Anymore, he doesn’t remember single step tasks, let alone more complex ones.

What he does manage to get done is well below his previous standards and needs to be redone by Lizze or myself. Dr. Pattie wants us to continue having him do these things because it’s important that he not stop, simply because it’s become more difficult, and it gives him a sense of purpose. 

Essentially, I’m having to re-teach these things to him again. This time however, he’s much slower to grasp the concepts.

To help put that in context, it took the better part of two years to get where he was, and now we have to move even slower. That definitely ups the level of frustration because it would be so much easier to simply do these things myself, but that’s not the answer.

While he’s lost many of these previously mastered skills, he’s doing exceptionally well in one area in particular.

Gavin is doing a really good job of managing his medications.

He takes meds twice a day and they come already dosed out, inside a tiny plastic packet. All he has to do is take the one labeled morning, in the morning, and the one that says bedtime, at bedtime. He’s can even mix his own Miralax..

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I’m so sorry. πŸ™


I’m so sorry. πŸ™

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