"Mummy...when will my brain be ready to do jumping?"

[Lougle]

..said my 5 year old

Sometimes, I think children like her are the most 'disabled' children out there. In that awful place where they is 'disabled' enough for their lives to be different, but 'able' enough to know it

:( hugs x

Sorry but I dont really agree with your thinking! Yes it's sad that your DD is aware that she can't do something her peers can do but surely this in itself is motivation for her to keep trying her very best to achieve her goal.

You're implying that children who aren't aware they can't do something are somehow better off?! This isn't much comfort to the many who spend hours each week forcing their children into standing frames, tummy time, gait trainers, seated/kneeling/crawling positions, in an attempt to help them achieve that next stage when the child doesn't understand why they are being made to do something uncomfortable and unnatural!

:(

I don't think either situation is preferable to the other - just different. I view it now from my mother's perspective as she travelled through alzheimers. She was at her most angry and frustrated when she tried to do something and couldn't manage it. She appeared more resigned as those skills left her too.
I know it is different to have had skills and to lose them, but there was a crossover point with my DS where they both were at a similar stage.

yes, I would find my DD less "disabled" if she could speak and understand.

It is hard to see your DD being unhappy though :(

I think you need to see the positives in having such a young child who can already speak and communicate so effectively - jumping may well come in time too

How sad for your DD....i understand as my son has lots of problems sleeping which can distress him and recently said to me "mummy why was i born like this ,it is very upsetting.

"It's not about one being "better" than the other, different levels of disability bring different challenges I think."

but the op said that some forms of disabilty are the 'most' disabled which I am not so sure about for the reasons you state. I don't think my ds is better off being unaware of his disability but i do look on the positive side about what he can say and do - off to audition for Pollyanna

I agree, justabout. There's a particular kind of agony when your child is aware of their limits and question them; there's also another kind of agony to be told to look on the bright side when things feel like shit!

My DS2 is similar. He is at that in between stage where he is not obviously disabled but he can't walk far, struggles with stairs and falls over when somebody brushes past him. I don't know how he is going to manage at school with no extra help but I've been told he isn't disabled enough to get any.

I agree that we should all be allowed a moan when things are shit.

But I do think the implication of saying that - children aware of their disability are 'more disabled' - is that those unaware are 'less disabled' and that this is somehow 'better'. I can't agree with that!

I agree Justabout - different levels of disability bring different challenges.

I think 'disabled' was maybe not quite the right word. But its just all different kinds of hard in different ways imo, we are all going through it in different ways

I agree 2011 - disabilites are different with different challenges and everyone seems to agree on that. Probably the op was just badly phrased in using 'most' disabled as the way to describe the situation

Well said Fanjo :)

I meant 'disabled' in the social model rather than the medical model. I wasn't talking about skills, abilities, function, but rather the social aspect of disability, ie 'disabled - made unable'. If DD1 wasn't aware that other people could jump, she would just be getting on with her life, enjoying what she could do, rather than spending time thinking about whether her brain would ever jump.

Never mind, should have remembered that people can't express themselves here anymore. Don't know why I bothered.

I agree with the point that 2011 made and how the post portrayed. But the op was feeling low at the time of posting and so I read between the lines. It could perhaps have been better phrased yes. But when you are at a low point it is very easy to forget about tact and feel only for your family and yourself at that point in time.

And I agree with Justa that different levels of disability bring different challenges.

Hope the OP is feeling better today :)

Of course people can express themselves - but what you meant wasn't expressed very clearly.

I wish my DD could tell me that. It's all crap IMO having a child with special needs.

lougle - sorry for the direction this thread is taking.

Why can't your DD jump? I thought she had a speech disorder? Or is it your son who has a speech disorder? Or am I really confused?

It's very interesting that she attributes not being able to jump to her brain rather than her legs.......

I think we were just discussing rather than trying to be harsh to lougle, hope she is ok, am well aware how hard the combo of physical and mental difficulties is

Hi IndigoBell, DD1 has a brain malformation, which the doctors don't really know much about. They know she has it, ie. the MRI scan shows it IF you know what you are looking at. It isn't 'gross' enough to be like 'a black space where there should be x', but more 'this is a bit small, that is a bit narrow, the other is a bit asymmetric, the lining is a bit 'odd'' etc. So people who know what they are doing would say 'not right' but a more generalist doctor may not even recognise that it isn't right, IYSWIM.

What that means, is that we don't know what causes DD1's difficulties. She has global needs. Gross motor (gait issues, instability, etc), fine motor, S&L, behaviour, inattention, impulsivity, sleep issues, etc.

I think it is her brain that stops her being able to jump. She doesn't (according to the Physios) have structural issues with jumping, but she can only jump on a flat surface with both feet, about 5 cms off the floor. She can't jump off of a raised surface at all. She thinks she can, gets to the edge, then her body totters on the edge and she walks off of the edge!

Yes, I am grateful that she can speak, can walk, etc. It still doesn't make it any easier when I see her 2½ year old sister doing things so effortlessly, and have to tell my 5 year old DD that I don't know if she will jump. I always try and give her a fair answer: she's got learning disabilities, she's not stupid. So, all I can tell her is that I don't know when her brain will let her jump. It may be soon, it may take a long time, or her brain may decide that it just doesn't do jumping.

As I said, I was talking of 'disabled' - in ' ' marks. Not disabled in terms of physical or mental function. Actually, two people can have exactly the same level of physical function, but one can be more 'disabled' by it than another. There are lots of factors that contribute to the level of 'disability' a person has.

Global issues are really taxing. Do hold onto the fact she has impressive understanding though, she sounds bright.

And i say that in a well meaning way