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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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.
Self awareness and expression are both very challenging for kids with Autism…
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 makes him say that? What part of the body felt that way? Has he ever felt like that before? When? Would drawing a picture help?
Maybe you’ll get nowhere, but trying to explain to him that what he’s telling you makes no sense, probably isn’t going to help him either – that will only frustrate both you and him. I’m not trying to give you a hard time, but since you referenced being an EMT, put those EMT skills to work. How do you think an EMT should approach a situation where he or she comes onto the scene to find someone like Gavin, who either has difficulty telling you what’s wrong or can only provide inaccurate, vague, or (unintentionally) misleading or irrelevant information? What strategies would you use to try to get that vital information that only he could tell you?
Best of luck – I know how frustrating this type of situation can be.
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.
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!
I suppose that depends on one’s definition fun…. Lol
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.
Rebecca, I can totally relate.
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!
That’s something I hadn’t thought about.. That’s a really good point.. Thanks Sonja
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.
Rebecca, I can totally relate.
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.
Self awareness and expression are both very challenging for kids with Autism…
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 makes him say that? What part of the body felt that way? Has he ever felt like that before? When? Would drawing a picture help?
Maybe you’ll get nowhere, but trying to explain to him that what he’s telling you makes no sense, probably isn’t going to help him either – that will only frustrate both you and him. I’m not trying to give you a hard time, but since you referenced being an EMT, put those EMT skills to work. How do you think an EMT should approach a situation where he or she comes onto the scene to find someone like Gavin, who either has difficulty telling you what’s wrong or can only provide inaccurate, vague, or (unintentionally) misleading or irrelevant information? What strategies would you use to try to get that vital information that only he could tell you?
Best of luck – I know how frustrating this type of situation can be.
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.
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!
I suppose that depends on one’s definition fun…. Lol
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!
That’s something I hadn’t thought about.. That’s a really good point.. Thanks Sonja