My goal with this entry is to help provide insight into one particular kind of challenge faced by parents of kids with significant cognitive impairment.
As someone with a background in emergency medicine, I find it particularly frustrating when I need to gather medically relevant information from Gavin.
This is a very difficult situation because Gavin is significantly cognitively impaired and is unable to provide information about how he's feeling or doing.
Today was a perfect example of this and it was unbelievably frustrating for me.
Shortly after dinner, I told Gavin that we've made it past the 72 hr mark and that he should be okay. It was about 72 hours ago that he'd eaten raw chicken and we were watching him carefully for signs of Salmonella poisoning.
After I told him he was in the clear, he made the following statement.
Gavin: That's good to hear Dad cause I was worried. There were some close calls.
Me: I'm glad to Gav...... Wait... WHAT?
Gavin: There were a couple of times where I almost had diarrhea and I almost got nauseous.
Me: What the hell does that mean? You were supposed to tell us if you had any problems. How do you almost have diarrhea or get nauseous?
Gavin: You know, they almost happened but they didn't..
Me: Gavin I don't understand because there is no almost when it comes to these things and you needed to tell us because it could mean you were getting very sick.
Gavin: (Hits himself in the head repestedly, effectively ending the conversation.)
I fucking hate when he says things like this and I swear to God I just about had a stroke. How do you almost have diarrhea or almost get nauseous? Lizze and I just sorta looked at each like, *what the fuck do we do with this? *
We tried to explain to him that his answer doesn't really make any sense.
We told him that if nothing happened, and he felt well, than nothing had actually happened or even almost happened. At the same time, if something almost happened, maybe he had a tummy ache or diarrhea and it went away? I don't know but there was absolutely nothing useful or reliable in the words that came out of his mouth.
OMG... This is so frustrating because he's the only one who can really tell us how he's actually feeling and unfortunately, it's not within his capacity to do so.
When he gives these kinds of answers and he does this all the time, we have to decide how to proceed based on the information we're given.
For him to use the word *almost, *something must have been wrong, right? Not necessarily because it could have just been a poor choice of words..
I guess the bottom line is that we haven't seen any signs of him experiencing any of these things and we'll have to run with that, if or until things change.
Can anyone out there relate to this? Does your child struggle to express how they feel? Do you find it frustrating?
