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'i don't like being disabled'...

(26 Posts)
madwomanintheattic Tue 07-Jul-09 09:22:46

i thought we had a few years before this came up tbh, but out it popped on the way to school. she's only 5. sad

trotted out a few niceisms as we were en route, but think i need to be prepared for a bit more. she's had a few episodes before where she wants to do something that her bro and sis do and hasn't been able to (normally we can rig a work-round - she's been ski-ing (yes) but wants to skateboard (er, no.))
so, where do i go? any age-appropriate books or stuff that will let her mull it over at her own pace? (she's a good reader so could be books for slightly older kids too) or any other ideas how to handle?

i suspect it was triggered by a chain of thought about something she would rather do instead of see the orthotist later, so easy enough to handle as a one-off, but think i need to be prepared for a deeper discussion...

how have you lot dealt with this...?

madwomanintheattic Tue 07-Jul-09 09:23:26

oh, she has cp btw - in case you aren't mindreaders lol...

madwomanintheattic Tue 07-Jul-09 09:24:18

...caused by birth hypoxia... and i guess it's only time before we get to 'why am i disabled?' sad

5inthebed Tue 07-Jul-09 09:30:27

sad

I dread this from DS2. DS1 has said a few times that he doesn't like his brother having autism, because he wants him to be a normal boy, and that broke my heart. We bought him a couple of books and also take both of them to the SN toy library where he mixes with children with a wide range of SN.

sarah293 Tue 07-Jul-09 10:15:50

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HairyMaclary Tue 07-Jul-09 10:50:44

Oh we had something like that this weekend, DS, also with CP said - next time I'm born I won't be damaged sad Leaving aside any reincarnation theory that he has picked up (!) I just could not cope with the damaged bit. Where did that come from??!

He hasn't yet said that he doesn't want to be disabled but it's obviously occurring to him and he's beginning to be aware of it, he's only 4 and like you I thought I had a bit longer. It's really hard.

Hangingbellyofbabylon Tue 07-Jul-09 11:00:36

I know we won't be far off this as well, when my dd started walking last month aged 3 she declared 'I haven't got cerebral palsy anymore mummy'.sad. I know as she gets older it will come up more. We've just started legal action for dd's birth hypoxia too, so I guess one day we'll be facing that conversation as well.

Madwoman, I'd be interested if you do find any books that are helpful. I've looked and looked and there doesn't seem to be a lot out there. Your dd might be a bit old for it but my dd's both love Toddworld on CBeebies and it is very matter of fact with disabilities. Last week they had a little boy in a wheelchair and the other children were worried they might catch his disability. They explained it all really well and talked about differences etc. In fact I might go to amazon now and see if they have any toddworld books or anything.

sarah293 Tue 07-Jul-09 12:10:02

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madwomanintheattic Tue 07-Jul-09 13:06:37

oh, i've heard of susan laughs i think! - i need to go and look it up. i've never heard of toddworld blush but we can't get cbeebies (the only family in the history of the world in a no-freeview area without sky - poor mites!)
'damaged'...sad sounds like it might be half-heard from a conversation about brain-damage causing cp maybe? v sad... although 'next time i'm born' made me smile smile

hangingbelly - dd2 went through a bit of that when she started walking too - she was quite confused i think, because she could take a few steps she would say 'when i can play football/ run as fast as dd1/ds1/ scooter...' etc. i still have a bit of trouble with expectation management, but she does know now that she is likely to have to do things slightly differently and will always have issues with mobility, so it has got a bit easier...

i just thought i would have longer to think about it. we're also still dealing with the legal stuff, which is just getting a bit messy as the 'official' version of events (and thus the independent report) bears no relation to what actually happened... i have another letter to write to decide if we want to carry on.

thanks, folks. i'll look up susan laughs and try and investigate toddworld - let me know if you come across anything else that might help smile

anonandlikeit Tue 07-Jul-09 16:37:40

Madwoman - we don't even get channel 5 let alone freeview!

I'm waiting for questions from ds2 (and his brother) at the moment ds2 doesn't really notice any differences (i assume) but i'm sure it will come.
I have no idea what I will say, I hope just to wing it on the day <<head in sand>>

LollipopViolet Tue 07-Jul-09 16:38:38

Hmm, you know, I'm trying to think when I realised I had additional needs, but I think I always knew. Whether that was because of all the hosp appointments or whatever, I don't know. I did hate having to go out of class for some woman to do stupid tests on me that were never explained and I still don't know to this day what that woman's job was...but I've always known I'm slightly different.

Still don't like it, but can sort of accept it. It does get easier as you age, but grr wish I could drive! Sorry, am rambling terribly, but like I said, I never had to have it explained, I don't think.

madwomanintheattic Tue 07-Jul-09 17:11:21

anon, no we don't get 5 either lol...

lollipop, how old were you when you wanted to know why? or have you always been fairly sanguine about it?

LollipopViolet Tue 07-Jul-09 18:06:54

I honestly don't think I've ever asked "why" per se, I've always lived with nurses so had it explained properly iyswim. I did once ask, on hearing my optic nerves are finer than most people's "Mum, will my optic nerves get thinner, and thinner and thinner and make me go blind?". They won't btw . I think the way I had it explained was that everyone's eyes are different, and mine are just worse than most people's.

2shoes Tue 07-Jul-09 18:10:27

I had to google

sarah293 Tue 07-Jul-09 19:37:59

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cory Wed 08-Jul-09 09:12:02

It's heartbreaking, isn't it? I think you have to accept that they have a right to be angry about it, it is unfair, and from time to time they may need to express that. The only important thing is that the feeling of injustice doesn't take over their lives.

Another thing is, they may well feel resentment towards a non-disabled parent or sibling. Again, I think, you have to take it on the chin. It is unfair that I, at 45, am far fitter than my 12yo dd and that even her 77yo granny can do far more than she can or will ever be able to.

I do find it hard, but at the same time I am reassured to see that as dd is growing up, she is not actually spending most of her time mulling over the injustice of life. Most of the time she is having fun, discovering new books or music, socialising with her friends, talking to her family, amking jokes, enjoying herself. It's just that she needs to be allowed to express the other negative side when it bubbles up, which is only very occasionally.

My response is, 'yes, I know, it is hard, I feel the same about you'. But I try to say it calmly, so as not to add my emotions. Very occasionally I have reminded her gently that other people have a hard time too (her best friend recently lost her mum), but I take care not to use that argument to shut her up in order to make things less painful for me iyswim.

Ds is much more secretive about his feelings, so he doesn't really say how he feels about just having been diagnosed with the same disorder.

Neither of mine knew they were going to be disabled at the age of 5, but there were other hard things going on- ds's beloved swimming instructor was murdered and he found out sad. I used the same approach then; let him talk, let him know that there are things in life that even Mummy can't explain, things that everybody has to feel are unjust.

sarah293 Wed 08-Jul-09 09:21:20

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cory Wed 08-Jul-09 09:23:33

Yes, that must be really really hard, Riven, for both of you.

madwomanintheattic Wed 08-Jul-09 09:47:52

thanks cory - i think you're right.

riven - i hadn't realised that dd was managing a head switch now, that's really cool! - might open up a few more possibilities for you both? have you ended up paying out yourself or have the system coughed up in the end?

PeachyTheRiverParrettHarlot Wed 08-Jul-09 09:55:01

We had similar madwoman

I've read all the stuff about AS / HFA being personality, 'dont change me' etc from actiovits froups and thought I would discuss with ds1 who is now pushging ten and culd debate a bit

Bollox, said he- he'd give a leg for a friend sad (Discalimer: his turn of phrase not mine, not coparing disabilitires)

At least ds3 doesn't understand (I did do a chat alst week about 'do you know what autism is?' and he threw iggle piggle at me, showed me his bum and fell over- which I think is a NO lol)

madwomanintheattic Wed 08-Jul-09 10:06:14

aw peachy. does ds1 go to any nas stuff? there are quite a few youth clubs round here, and we have a 'gaming zone' for as kids and siblings which seems to be popular. are school on the case?

lol at ds3 though. much easier to deal with when they are unaware smile (at least until the next meltdown)

i suspect dd2 will end up teaching me a thing or two in years to come tbh - it's just enabling her to get to that point by dealing with the first shows of frustration about the randomness of life. she's a strong little cookie in a lot of ways, so just need to make sure that doesn't get eroded along the way... i kinda thought 7 or 8 for the meaning of life... ho hum.

cory Wed 08-Jul-09 10:09:42

Both mine went through a meaning of life phase about 5 or 6; I think that's when they're developmentally ready for it. It was hardest for ds because he wasn't allowed to speak about his trauma (younger cousins had to be protected from knowing) so we had a special password for when he just needed to get away and talk to me.

sarah293 Wed 08-Jul-09 13:34:06

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madwomanintheattic Wed 08-Jul-09 14:08:23

no, none of it makes sense - that's what makes it so difficult. how can we explain stuff that makes no sense? sad

that's great news on the switches, though, can you get charity funding for the second? she must have really come on in the last year, it's great news, really it is! it'll open up so many more options for communication smile and with other technological advances, having mastered that intentional movement is just brilliant. is it totally reliable now?

i'm chuffed for her - is she very pleased with herself? grin

sarah293 Wed 08-Jul-09 14:20:17

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