Last post Sat, Mar 29 2008 12:26 AM by angelrose. 8 replies.
I see Kate has posted a topic on disabled parenting. This is something I'm very familiar with as both my wife and I are disabled and have raised two children. I never spoke with my mom or Linda's about their experiences raising a disabled child. We have our perspectives but not their's. Why not post here about it? Or write a blog about it. I, for one would like to know.
Bruce
To see my blog click DISALIFE
To find out how to write a blog click A Guide to Navigating Disaboom
Why is Blogging in the Disability Community Important?
Claybay posted on New to Disaboom? Welcome! the following.
Hello! My name is Claire and I am a proud Mommy to a FANTASTIC 3 year old boy with Spina Bifida (mylomeningocele). He is L5-S1, but functions at the S1 level. He has hydrocephalus but no shunt. he walks with and without his AFO's. He is quite incredible and his personality attracts everyone he meets. People are constantly stopping us wherever we go saying he is so cute! (MOST peole out in public have no idea he has SB because you cannot tell if you cannot see his AFO's).
Anyhow, my journey has been tough but so incredibly rewarding. I found Disaboom because of my googling on the mitrofinoff...something our URO has mentioned. I decided last April to start cathing Van (my son) for social reasons. I knew it was inevitable anyway, so why not start now, right? Poop....well the poops stuff is another post all together....wow.
Anyhow, back to the mitrofinoff............cathing has NOT been going well. Van says it hurts and battles us every time we try to cath him. We have tried all sorts of caths and reward systems...he keeps saying it hurts....so the URO suggests the mitrofinoff. I am part of a wonderful support group for Mom's of kids with SB, but I thought if I could talk to actual people with SB that have had this surgery, I could get more helpful info. i always thought Iwould wait until Van was old enough to understand and make the decisin for himself about the mitrofinoff.
So, anyway......I am excited about this community and am glad Ihave found all of you!
Claire
Hi Claire! My name is Rachelle and my 4 year old son Kai also has spina bifida. Where are you located? We are in NC. Kai is cathed 3x per day but he doesn't feel it thank goodness and only takes fiber supplements for the poop. He cannot walk, nor will he ever due to his hip being permanately dislocated and he can't use the leg that is dislocated either. His other leg he does have some use of. We just ordered him some new wheels and they should be in within the next 30 days or so. He goes to a typically developing daycare, but still wears diapers. We have an appointment soon with the URO so we will see where that goes.
It's truley amazing how people are drawn to Kai as well. It seems as though they hang on every word he says and are just mesmerized by him. Maybe it's a SB trait? I look forward to chatting with you more! Talk to you soon! Rachelle
Claire, I can't help you in regards to the mitrofinoff since I've never used it. I've been self-cathing since I was eight years old, and what you said about him saying it hurts got me thinking. Is the catheter you are using too big for his urethra? Since the day I started cathing I've never had pain. When I was sitting in labor & delivery triage for pre-labor contractions with my son, I had to have the nurses cath me and they used a bigger size than I was used to and boy, did that hurt! I wonder if that might help - getting a smaller size. Also, if you're not using lubricant, like KY jelly, that might help also. I would talk to your URO about it. I don't want to assume anything. Just throwing stuff out there.
i myself have 4 children three with disabilites. one has severe adhd, one with cerebral palsy, one with a rare spinal disease. right now my life is very stressfull. i cant go any where with the kids alone. grocery shopping ect.. i feel stuck i feel on the verge of a nervous breakdown. i just hope as they get older it gets easier.
To the Overwhelmed... You need some mental support. I suggest start looking at blogs of parents with similar issues. Sometimes just knowing you're not alone can help you cope mentally speaking.
Is anyone helping you (ie: family/friends?) Respite care?
Try the ARCH National Respite Network. They might be able to serve you... and then you could get things done, or some much needed mental recharging.
Hi my name is Kat I have a 13 yr old with lots of disabilities.She has ODD.mood disorder,adhd,split,anxiety,depression,etc I am also new here.I would liketo hear from anyone and all of you goodppl out there abt how to deal with some stuff and if you need a friend just write to methanks. sincerely Kat
Hi! I'm new here too. I'm a single mom of twins (boy and girl) 12yr olds....... my son has spastic quad CP , daughter is ADD, so life is hectic here too. No family or anyone to lessen the load when it gets hairy. Shoot, dont even have a car. We take the bus everywhere. Enough whining, other than that, we do very well. This post I'll keep it short. My life is a soap opera. really. But I'd love to make friends here if anyone is up to it. Thanks.
