when my son was just born and in two legs casts constantly for his first five months of life, i found people could be pretty insensitive about it. the most common thing said to me in grocery stores and what not was "awww! two broken legs!" which made me want to say, "yeah, he fell down the stairs" or something to that effect. but then i would have some really cool people come up and tell me their stories about their children being in casts for clubfoot, and so on.
now that he's in the afo's questions are a little less likely, and people don't seem as shocked by them. i do get a few older people are restaurants with playgrounds outside give me dirty looks and tell me to take my son's shoes off... my mother has replied to such demands with things like "we can't... he was born without feet" or something along those lines.
i don't know the circumstances behind your disability, but i know that my son (who is nearly two now) i have never considered to be disabled, and i know it's something we may have to battle the rest of his life, but his clubfoot has NEVER slowed him down. i've been told by his doctor that he's more physically advanced than other toddlers his age. and i can't speak for everyone here, but i know the term of disabled is kind of a "bad sheep" label that i'm not really interested in having for my son.
thats exactly it! i have never ever felt like i have a disability but it seems like they're obsessed with the idea of getting me branded as such.
we keep being denied so hopefully they'll just accept it. i think its more for them then for me, because their the ones who have "struggled" with it. its like they want some kind of recognition or recompense for all those trips to the hospital.
i'm not sure if i'm making this very clear.
i'm a single mother. my son's father has pretty much been no part of his life since he was born, so yes, you make perfect sense. i can't tell you how many days i've had to take off because of post surgeries, or doctor's appointments for cast changings, resizings, etc. and i guess back when your parents did it, it was probably a little different than it is today. it's like my routine now.. but yes, it is hard.
Your son will run into jerks in his life who think its big to run someone down. Once he gets where he can fight back he will be fine. Me myself as a kid I had to flatten one or more bully that thought it was fun to try yank my brace off my leg and foot until I gave him a good swift kick with that steel brace and steel toe shoe. It was funny watching him do some limping around a couple of days where id kicked him. Like they say pay back is hell lol.
Information is difficult to come by because all the sites out there seem to be for parents, or doctors, nothing for teenagers or adults living with the condition.
I've noticed this, too. Sometimes it's frustrating.
Hi, and welcome!
Yes, there aren't too many of us here. Every once in a while, though, this comm does come in handy.
I work in a very physical job (medical assistant/nursing student), so for me, at least, my biggest challenge is managing the pain and stiffness at the end of my shifts. (And it usually carries over into the next day - sometimes, if I've done a lot of walking etc. one day, I'm reduced to crawling for the first few hours after I get up the following day! Thankfully I have understanding family and friends.) It really is tough to find much that isn't directed at parents - I wonder why more of us aren't out there talking about this!
My parents have often suggested that I try for disability as well. I don't think things are degenerative enough to make much of a claim yet (despite my body telling me otherwise!), but...yeah. It's the principle, as you said. Anyone who thinks living with two whacked-out feet and ankles is easy is out of their minds!
2008-07-02 10:22 pm (UTC)
I am a legally disabled college student. My primary merely wrote for the placard that I had "painful congenital birth defect in my lower extremities". If needed I could procure medical documentation to state that this has given my arthritis in my ankles and knees and just turned my knee cartilage into cottage cheese.
Ask your primary to write off the DMV paper work required for obtaining a handicap placard, after that try to get disability through the govn't.
2008-08-04 05:01 pm (UTC)
god bless shriners hospital
my son, who is now 2 1/2 years old, was born with Bilateral Club feet. he had 2 surgeries before he was 1 yr old. 32 sets of casts and one set of braces. People used to stare and point and gauk at us like i had beaten my son. i just looked at it as an opporatunity to let more people know about this condition. he does fine now....sore feet and really never find shoes that fit him or make him feel better. but, everyone is unique....everyone has a purpose....its God's plan and thats how i deal with it. im a25 yr old mother of 3 kids now and I plan on teaching them the respect of others....not to make fun of people for things they cannot help. i hope that you find this a little comforting. our son isnt entitled to disabilty either....because you can and will overcome lifes obsticles!
God Bless you and Yours!
2009-05-07 03:29 pm (UTC)
My daughter is 13 and has had a clubfoot since birth. It wasn't too bad and we believed the doctors when they said it would strighten on its own. Now at 13, she has broken this ankle 2x and now doctors agree that something can be done. WE are just starting all the procedures. I agree, there is all this info on babies. But what about teens( who had dumb doctors)? She used to do cheerleading and softball, but now can bearly walk. Hang in there.
2010-08-19 11:20 am (UTC)
doctor for treating older kids
I am adopting a ten year old girl from China who has untreated or relapsed clubfoot. I have researched and located the very few doctors who specialize in treating this condition in older kids in the US. Please let me know if you need any of this information. These doctors try to treat nonsurgically to the greatest extent possible.