Mothers of mainstreamed “medical” kids- what’s the balance

amother

Wed, Mar 06 2024, 10:15 pm

Between pushing child to go to school when child has pain vs having child staying home. talking about days where pain/discomfort is more than usual- but not like child can’t function (which of course is no question that child stays home).

Today dc stayed home from school but was so bored. I think they could’ve gone to school (with some support, but school is not cooperative) and I’m just confused as how to figure out the balance of whats the right thing to do.

Any insight?

(I’m general I’d love to hear about others with an otherwise typical child with a physical or medical challenge on how to balance “spoiling” the child for all they go through but not actually spoiling them…)

amother

Wed, Mar 06 2024, 10:24 pm

amother Snapdragon wrote:

Sometimes it’s just really hard to know. I speak to my child about toughing it out if symptoms/pain/etc is mild. Nothing has really worked for me.

How old is your child?

I do feel my child toughens it out a LOT which makes it even more tricky, because if they’re saying I can’t go to school today because xyz, I guess that means it’s really bad? I never know and dc is still very young…

amother

Snapdragon

Wed, Mar 06 2024, 10:41 pm

Mine is a teenager. I used to really trust her. When she said she couldn’t go, I accepted that. Now I am having doubts. So if I send, she tells them she’s not well and she sits out. And then she comes home and lets me know what she did. If I don’t send, she misses more than a week of school. She hates school so any symptom and she won’t go.

TwinsMommy

Wed, Mar 06 2024, 10:43 pm

My daughter is 17 with an ostomy and her experience is different because she doesn't feel PAIN. But she does get EXHAUSTED from all of her medications. After each of her surgeries she missed one week (c tube surgery) and then two weeks (ileostomy) of school but by the end of each break she was READY and willing to go back. If she asks for a mental health day, I give it to her. It's very rare that she insists on a mental health day and that I don't agree that she deserves it---- she doesn't take advantage. And that's just for tired-ness and mental load. If she experienced any pain, I'd be even MORE willing to keep her home when necessary. She knows her own body. Even at a young age-- if she's not taking advantage and not begging to stay home all the time, I'd encourage the resting with the pain. And if she's bored, give her a treat depending on her age--- coloring book, game, magazine, lunch out with you if the pain isn't debilitating but she just can't handle school.....

How is the nurse at your child's school? Full time nurse's office with enough support when needed or no? You said school isn't cooperative--- how so?

I trained the main nurse and assistant nurse at my daughter's school in ostomy appliance changes and they help her when she leaks. After this most recent surgery she was able to get an elevator pass (huge school) for months so she wouldn't have to carry her backpack up and down stairs. And she has a bathroom pass for anytime she needs. My daughter is on an IEP because she also has autism and ADHD (aside from the ostomy) but if ALL your child has is medical and doesn't need a full IEP you can also have a 504 in place if in public school. (Private school can do whatever they want, including not even having full time nurses on staff--- so medical issues in a Jewish school are harder).