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Need advice from those who are chronically ill (long)
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<blockquote data-quote="gcvmom" data-source="post: 259510" data-attributes="member: 3444"><p>I have a son with Crohn's disease (difficult child 1), so we know a little bit about what it's like to live life in pain. You're right about adapting to levels of pain that most of us would find unacceptable. But it's a sad fact of life for anyone with a chronic illness. Some days are better than others, some worse. You learn different ways to cope.</p><p> </p><p>Although he is doing really well right now, when difficult child 1 was sicker, unless he had a fever, was vomiting, or had diarrhea and was totally incapacitated, I did push him to go to school. The deal was that he just had to try to go for a few hours, and if he found he just couldn't do it any longer, I would come pick him up early. He still had to do his homework, and I would monitor how he was doing each day and decide (with teacher approval) if an assignment needed to be shortened to accommodate his pain/fatigue/whatever symptom was holding him back that day. These kinds of accommodations are written into his Individualized Health Plan (IHP) which is sort of like a 504 plan for kids with medical issues.</p><p> </p><p>It's very likely your daughter's anxiety/Obsessive Compulsive Disorder (OCD) is compounding her problem with school. I would try in earnest to get her to go, if only for a few hours. Maybe the first week you have her try to go just until morning recess. If that goes well for a week or two, see if she can stretch it to lunchtime. Maybe even factor in some kind of reward for her success in getting through to her goal time. I think that breaking it down into smaller increments will help reduce the feelings of being overwhelmed. </p><p> </p><p>I understand the temptation to let them stay home and rest, but at some point, they have to figure out their own way of coping with the illness while continuing to be productive at some level. It doesn't have to be the same level as a totally healthy person, but they need to find a level that's do-able for them. Keeping engaged in the outside world will help their self esteem and ward off depression or a possible worsening anxiety if they are allowed to retreat and hide from the world.</p><p> </p><p>Just my 2 cents.</p></blockquote><p></p>
[QUOTE="gcvmom, post: 259510, member: 3444"] I have a son with Crohn's disease (difficult child 1), so we know a little bit about what it's like to live life in pain. You're right about adapting to levels of pain that most of us would find unacceptable. But it's a sad fact of life for anyone with a chronic illness. Some days are better than others, some worse. You learn different ways to cope. Although he is doing really well right now, when difficult child 1 was sicker, unless he had a fever, was vomiting, or had diarrhea and was totally incapacitated, I did push him to go to school. The deal was that he just had to try to go for a few hours, and if he found he just couldn't do it any longer, I would come pick him up early. He still had to do his homework, and I would monitor how he was doing each day and decide (with teacher approval) if an assignment needed to be shortened to accommodate his pain/fatigue/whatever symptom was holding him back that day. These kinds of accommodations are written into his Individualized Health Plan (IHP) which is sort of like a 504 plan for kids with medical issues. It's very likely your daughter's anxiety/Obsessive Compulsive Disorder (OCD) is compounding her problem with school. I would try in earnest to get her to go, if only for a few hours. Maybe the first week you have her try to go just until morning recess. If that goes well for a week or two, see if she can stretch it to lunchtime. Maybe even factor in some kind of reward for her success in getting through to her goal time. I think that breaking it down into smaller increments will help reduce the feelings of being overwhelmed. I understand the temptation to let them stay home and rest, but at some point, they have to figure out their own way of coping with the illness while continuing to be productive at some level. It doesn't have to be the same level as a totally healthy person, but they need to find a level that's do-able for them. Keeping engaged in the outside world will help their self esteem and ward off depression or a possible worsening anxiety if they are allowed to retreat and hide from the world. Just my 2 cents. [/QUOTE]
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Need advice from those who are chronically ill (long)
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