You know you have a hypermobile child when...

[BlackeyedSusan]

... you say:

"Dd take your toes out of your armpit; they do not belong there."

Laughing with is great, it was the language I felt uncomfortable with. Been trying to avoid saying it but I keep thinking if my children having my ehlor danlos as well as everything else I wouldn't use those words because it would hurt. I know no one's meaning that, & laughing at the weird bendy stuff I can do (often unintentionally) is normal but maybe kids need to hear more positive language so that if other kids call them gross or cringy or stomach churning they don't think it's OK.

& I am sorry to spoil light hearted fun but i just can't shake the feeling uncomfortable with the word choice

Sure polter but if you said those words about any other disability on here it wouldn't be ok would it? Substitute ds/asd/schizophrenia for hypermobility & gross/cringy/stomach churning wouldn't be ok to say here either would it?

& you maybe sure you wouldn't let slip sonething like that in rl but how do you know that of others your discussing it with? Making it OK to use somewhat disparaging language about any disability just doesn't sit right with me, sorry I know the thread isnt out to offend just doesn't seem ok not to call it out

No, to the whole thead. & weird is positive in our house also. But weird would never be stomach churning or gross.

"DD1 get your foot out of your mouth please!" She can get half of her foot in her mouth comfortably.

It's the worms I dread!

PermenantLurker do you think we're talking about different weirdness/grossness though?

I admit to feeling 'gross/weird when DD1 flexes her fingers (double jointed) or shoves her feet in her mouth, or her legs behind her head....but it's not because I dislike it. It's because I couldn't do those things without extreme distortion and pain. It isn't painful or unnatural to her, but I can't stop my brain processing it as a painful/unnatural movement.

What if the school bully used those terms with that same explanation?

& would it be ok for anyone to admit to feeling grossed out by the effects of a child's ds?

Well intent does come into it, doesn't it? I'll admit to feeling a bit grossed out when my patients vomit. Perfectly natural and useful physiological process. I would never acknowledge my feeling to them. But I'm quite comfortable with admitting that it isn't my favourite part of nursing away from the bedside.

I wouldn't actively sit and say DD1, you're gross. But if she deliberately contorts herself into extraordinary positions for effect (which she does with glee) then I'll tell her to pack it in and I don't feel bad about it (and neither does she!!).

PermanentLurker I have the same disability and, as a teen, used to love freaking people out with my hand gymnastics, including the thumb trick, above.

Hands are completely knackered now and my only party trick is a full percussion section whenever i attempt to stand still and my feet and knees creak and click.

I have to confess that I don't even know if DD1 is officially classed as hypermobile. She couldn't pull to stand until quite late on because her ankles gave way, didn't walk until she was 2, her sisters are fascinated with the way she can move her fingers (they try to Copy & fail) & she can do all sorts of funny things with her legs though, so I assume she must go some way towards it even if not properly HMS qualifying. So I'm probably in no way qualified to have an opinion. But in our house DD1 has a wonky brain (used to be 'poorly' but we had to change it recently because it didn't give enough of a nod to her awesome features) and DD2 is 'just a bunch of randoms' (her phrasing)....so we try to take things lightly.

talking of weird... (sorry perm) I occasionally make ex show us his "weird" non bendy fingers, because everyone elses' round here bend back.

It is not weird/cringy/gross etc, but it can be disconcerting to see one of your children doing something that seems like it is going to do some serious damage. (consultant had a bit of a wobble at dd's bendy back)

dd gets toes in same side armpit.

and I posted because it is weird disconcerting to see her contorting her hip joints so much and it is worrying that she is doing damage. sharing experiences is helpful.

and given that my hip bloody hurts sometimes due to the w sitting and generally buggering about with joints when I was younger...

I am hyper mobile - not diagnosed officially and not JHS as not that bad. However when DS saw physio they discussed hyper mobility and I said about my hands - but DS is not hyper mobile.

I am also dyslexic. Quite severe visual dyslexia. It can have a affect daily but I laugh about the things I do because of it rather than at the actual dyslexia.
My colleagues who've I've known for a decade or so and friends I've known for longer will laugh with me about it.

But I don't consider my hypermobility or dyslexia to be a disability - it doesn't have an affect on all my daily activities or require extra planning to a big extent in all aspects of my daily life.
I just note where the car is in a car park on my phone so I can find it again

I see threads like these, including the ones we've done before about ASD and knowing you have a child with ASD when you say ...... And they literally do..... In the same vein as to programmes such as the last leg. It's not taking the piss but rather a lighthearted look.

Isn't part of the issue that hypermobility can be just part of who you are for some people and a hideously debilitating disability for others?

I see what zzzz is saying about epilepsy, and of course she is absolutely right about attitude being crucial. At the same time, there is something about severe chronic pain (which is what some people get with hypermobility) that is extremely wearing.

Not least because if people see others coping cheerfully with the same condition, they assume you are just putting it on. If little X can bend even further than your child and skips around the playground happily, then surely your child has no right to claim she is in so much pain she cannot walk? And if your child seems to be in more difficulty than her condition warrants, then isn't that likely to be due to an attitude instilled by her mother...

I am happy to say that dd has now got to the stage where she can laugh about her body not functioning very well. She is tough and resilient and does not give up. We joke about all sorts of things. But while she was still at school, I had to be wary about what I said to whom. There were plenty of people ready to pounce on any suggestion that her disability wasn't real or didn't impact on her life.

It's like when you've got a child with ASD: people assume they know exactly what they are going to be like, because they have seen Rainman, or known a child with moderate Aspergers.

Light-hearted is fine. But realistic is also good.

I am hyper mobile and have been that child finding weird positions more comfortable, reading a book while slung upside down over a swing and propelling myself forward and back, putting my legs behind my head at parties etc.

Even so I still get slightly 'grossed out' watching contortionists, and even seeing my own joints popping at strange angles, the horrific crunching sounds my knees make when I walk down stairs, the clicky finger joints. I do celebrate the bendy-ness while being perturbed by it! I don't think of hyper-mobility as so much of a disability - it is a source of joint pain and many many twisted ankles, it probably will get worse now I am fat and over forty - but I am, still the only one in my family that can put their hands flat on the floor while keeping my legs straight. So it is fun sometimes, weird sometimes and debilitating - all at the same time! So is ASD (which both my olders kids have) in a very different manner.

I would never seek to give offence but I also have my own perspective on things that personally affect me and my family, so with the right audience (here/ my siblings etc.) I will be open about my mixed feelings.