What Gavin said that just about made my head explode

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. 

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Rob GorskiJimmy RockSonja L AndrusRebecca MagliozziAlison Rose Miller Recent comment authors

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Rebecca Magliozzi
Guest

My son forgets things after his autoimmune attacks. Like, major parts of what happened. It is so frustrating trying to get to the bottom of things.

paulinabisson5
Member

Rebecca, I can totally relate.

Kelly Lyons Schaffer
Guest

My son constantly tells us things almost happened! Very frustrating! ” I fell and almost hurt my wrist ” I almost had to poop” my favorite ” I was almost hungry at school today “. Another great favorite of mine is him screaming at the top of his lungs for me to shut up,stop talking to me. Then yells why won’t you answer I’m talking to you! It’s fun parenting isn’t it!

paulinabisson5
Member

I suppose that depends on one’s definition fun…. Lol

Alison Rose Miller
Guest

I guess I see this a ton because it seems about normal for my kids. Although my kids can usually express how they feel they struggle when it comes to expressing worry or seperating thought and reality. Ive been struggling with teaching the difference in being depressed and being bored or having no positive interactions with peers. Seems my teen uses depression as a blanket for a generalization.
Its so tough.

paulinabisson5
Member

Self awareness and expression are both very challenging for kids with Autism…

Jimmy Rock
Guest
Jimmy Rock

Exactly. I totally get this situation. But it’s frustrating not because of your background as an EMT, but rather as a parent of a child with serious medical issues who has an unfortunate combination of poor pragmatic language skills and an unawareness with respect to what his body is telling him. This whole chicken episode must have been incredibly stressful for you. But now that you thankfully seem to be in the clear, why not try to work on those expressive language skills with Gavin? Ask him about being “almost nauseous” – what did he feel in his body that… Read more »

paulinabisson5
Member

Thanks Jimmy. When I mentioned my background, it’s because it plays a role for me. I know that without information, assuring the right treatment is much more difficult. I don’t think he’s intentionally vague. I think he just doesn’t grasp the concept.

I’ve asked him to draw pictures before but that makes him upset because he feels he’s been very clear already.

Rebecca Magliozzi
Guest

My son forgets things after his autoimmune attacks. Like, major parts of what happened. It is so frustrating trying to get to the bottom of things.

Kelly Lyons Schaffer
Guest

My son constantly tells us things almost happened! Very frustrating! ” I fell and almost hurt my wrist ” I almost had to poop” my favorite ” I was almost hungry at school today “. Another great favorite of mine is him screaming at the top of his lungs for me to shut up,stop talking to me. Then yells why won’t you answer I’m talking to you! It’s fun parenting isn’t it!

Alison Rose Miller
Guest

I guess I see this a ton because it seems about normal for my kids. Although my kids can usually express how they feel they struggle when it comes to expressing worry or seperating thought and reality. Ive been struggling with teaching the difference in being depressed and being bored or having no positive interactions with peers. Seems my teen uses depression as a blanket for a generalization.
Its so tough.

Sonja L Andrus
Guest

I’ve totally been there. A range of sensations gets garbled, or stress and worry over something becomes “it almost happened, you know, but then it didn’t” — psychosomatic symptoms that never fully manifested. lol Hang in there!

Sonja L Andrus
Guest

I’ve totally been there. A range of sensations gets garbled, or stress and worry over something becomes “it almost happened, you know, but then it didn’t” — psychosomatic symptoms that never fully manifested. lol Hang in there!

paulinabisson5
Member

That’s something I hadn’t thought about.. That’s a really good point.. Thanks Sonja