parenting issues with medical needs kid

[mybug]

I haven't been here in forever but I thought of it when parenting became hard-- last night :) My ds (7years old) has lots of medical issues and I am always questioning myself about how to parent and gain compliance on certain things when I know his medical life has affected both of us. He freaked out about a hair cut last night. Was it that he wants long hair? doesn't want to draw attention to himself at school? Something he wants to be able to take control of? Who knows, they never bothered him before. 

So many times, I feel like all I do with him is require compliance with meds/treatments, homework, chores, behaving, etc. We don't seem to have as much fun as either of us would like. Unfortunately, I do work four days a week (180 days a year) so our routine in the evening is very scheduled. I hate that but cannot change it.

Anyway, do any of you find yourselves giving in more because your kid goes through so much more than other kids? Do you ever feel guilty making your kid do homework/chores/haircuts on top of medical routines? I always ask myself if it is a "normal" kid thing or if this behavior is because he is mad at the path he has been given and it comes out in other ways (it's easier to refuse a haircut than getting his chest physiotherapy, for example). I just want him to have fun and let loose when he is not either getting treatment or at school. I know we have to balance his responsibilities with his medical needs with being just a plain kid but I cannot find my groove with this lately. I would love to hear ideas that have worked for you.

[anj_rn]

My special needs child is only 2, so I have not had to deal with the balance for her yet.  But I often feel that way about my DS.  He is 4.5 yrs old, and has to del with a special needs sis who requires a LOT of mommy & daddy's time.  I sometimes feel like I have to balance giving in to him since he has to deal with so much, with what I need him/us to do to keep the household running.  I do not have any advice, I just wanted you to know that you are not alone.

[philomom]

My dd, a teen now ,has had JIA her whole life. I've spent more time in hospitals and doctor's offices than I'd care to total up. It is hard to watch her deal with the pain and when she was little I did have to hold her down for treatments/tests.. etc. No fun.

But no, I don't spoil her other than getting her a treat when she's having her long and tedious IV treatments once a month. She does her homework. She doesn't skip school unless she's very ill or she has doctor's visits. She didn't get extra toys and stuff because she was ill. She has a couple of chores assigned to her around the house.. little ones she can do with achy bones. She had to be reasonably well behaved as a kid or got time out just like her healthy sibling.

For me the worst part is not being able to cure her pain. And her personality is pretty serous for a teen girl.. partly I think from the stuff she's had to endure.

[mybug]

Thanks for the replies! I am glad to hear I am not alone!
I wouldn't say I spoil my son. There was a time when he couldn't eat by mouth at all so he got a toy or two when he had a rough time in the hospital since food treats were off limits. My issue is more like deciding when he is relieving his stress from constant medical issues or when he is being a typical kid learning boundaries etc. I wonder how people balance the time you require them to comply with treatments and when you demand chores, etc. Or when you let them throw a fit over a hair cut knowing it is really that they know their life is hard. I
suppose it depends on the circumstances and the kid though and there is no easy answer. Maybe when he is older he will get better at identifying his feelings. Certainly if he's mad just because I make him stop playing to take a shower, that's just too bad, it's shower time. But if he's mad he has to spend two hours a day getting tube fed and lung treatments, I am down with that, I would be mad too. I am mad too!
Luckily my son is a sweetie and overall does well. It just nags at me when something comes up and I find the balance is off. Oh, and I hear the often unspoken issues of the sibs. My dd will tell me she is coughing and needs CPT. I think she just sees it as special time with mom. Oy!

[BeautyforAshes]

Someone posted a similar question a little while ago.  It was more geared towards younger children, but maybe some of the information may be helpful.  Here's the link: http://www.mothering.com/community/forum/thread/1296804/i-feel-bad-about-all-the-medical-procedures-that-are-forced-on-dd