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SN children

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Original poster

Little things get you down

88 replies

lou33 · 12/04/2005 14:10

Are you like that? Today the physio said it was unlikely ds2 would ever be able to stand on one foot to do something like wash his feet, as he will be unlikely to have the balance and strength, if he ever gets standing independently. I found that utterly depressing. It's only a small thing, so I don't know whay it has affected me like it has.

OP posts:

hub2dee · 13/04/2005 16:18

Hi Lou, I noticed you didn't seem to be your usual self the last few days... just on posts here and there.... sounds like busy stuff in your head, and, as always, so much going on around you.

No experience in this area, so can't really suggest anything useful, but perhaps when all is quiet tonight you can have a long soak and throw in an extra capful of bubble bath ? I had a soak yesterday and dw put in too much.... bubbles came up about one foot above the rim of the bath... she took a snap on her mobile so I was going to post 'hub2dee naked in bath' (was quite safe shot I think) but then thought better of it.

LOL.

I have tinkered in the past with Smarthomes - integration of electronic building control of lights / music / security / blinds etc... I know there are people developing solutions to do all sorts of things... reference door opening: is it the handle that is difficult ? Getting to the door ? Pivot from closed to 90 degree open ? (or all of this ?) I wonder if I might be able to find a little electronic gadget that might be useful ?

Davros · 13/04/2005 16:36

Lou, sorry to hear you've had another thing added to the load today My usual prescription of Heat, tea and extremely chocolatey biccies just won't do it I'm afraid.

Original poster

lou33 · 13/04/2005 17:01

thanks for letting me whinge everyone.

Hub2dee, we live in a bungalow because it is best for ds2. When we moved in dh took the handles off and changed them to ballcatches instead. so he can push a dorr open as he crawls along, but of course he cannot stand, so he can't get out if a door is accidentally closed behind him. We are toying with just putting a simple knob at the bottom of the door for him, if the crappy paper thin hollow doors allow it.

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Merlot · 13/04/2005 17:21

Oh Lou It never rains, but it p1sses down, to revise a phrase!!

hub2dee · 13/04/2005 17:35

Hi Lou. It can obviously affect heat flow through a house, but I've taken plenty of doors off rooms to open up spaces etc... don't know if that could be feasible...

your low-level handle sounds like it would do the trick. You can get fixings for plasterboard which open up as you tighten them (thus grasping the fragile inside face of a hollow door, spreading the load)... and I imagine that would be fine.

Maybe the door has some solid wood framing around the edge you could screw into (obviously, you don't need the twisting action of a fully functional handle if you've got the ball catches... maybe something as simple as a drawer knob would do the trick ?)

Oh, and one last thing, would one of those baby anti-trap foam blocker bits prevent the door closing all the way allowing an easier tug from the inside ?

SleepyJess · 13/04/2005 17:48

(((Lou)))) He can wash them in the bath, then he doesn't need to stand on either leg!

I'm not being flippant.. just wanted to share with you my philosophy I have adopted to the effect that whatever DS can't manage alone or in the normal way, we will find another way for him to do it.. or help him do it. (Not that there is anything unusual about washing your feet in the bath! )

My philosophy has so far only failed once.. and that is with ice skating. He can't stand up.. so that remains no-go!

Recently in the park, he was pointing at a huge pyramid style flexible climbing frame thing.. and firmly expressing a wish to climb on it with his sister! I was at the park with my best mate.. who holds the philosophy even more firmly than I do! (she has more energy.. she doesn't live with DS!).. and I said 'oh sweetheart, you can't go on that' and my friend said 'oh yes he can come on!' and up we went.. with DS! It was pretty scary.. he kept wanting to go higher.. and he can actually climb (he is a mystery to his physio.. can't stand unaided or walk.. but climbs like a rat up a drain pipe! Sadly, his version of coming back down from the places he climbs to, is falling!).. and we got rather near the top, the three of us all, my friend above DS, me below, him, and DS grinning all over his face, making excited sqeaks, and saying 'Up! up!' .. then we felt it best to start making our way back down again! But suffice to say DS went up there.. whether it was a good idea or not!

Sorry for going on.. I of course know completely how you feel and feel a lot like you often. I just try not to dwell on it.. but I know it's hard.

SJ x

Original poster

lou33 · 13/04/2005 17:49

yeh i know about the plasterboard thingies, thanks. Won't take the doors off, being on one level the draft would whistle everywhere, and we are not double glazed. A normal drawer handle will probably be fine. i feel a visit to b & coming on, oh joy.

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Original poster

lou33 · 13/04/2005 17:52

no he cant sleepyjess, he cant sit in the bath either, he has to be strapped into a sn chair so he cant reach them. But thanks for posting, i know what you are getting at.

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SleepyJess · 13/04/2005 17:57

Sorry Lou.. What is his diagnosis? We are supposed to use bath seats too.. but DS won't tolerate them. The last monstrosity they brought round was like a deck chair with loads of straps! All well and good.. but you couldn't acutally access hardly any skin to wash!! They are always unwilling to accept that I prefer to put him in the bath with DD (age 6, 18 months older than DS) and she supports him. He sits there fine then.. and she knows she has to hold him tight. He used to arch backwards against the corner-type-bath seat we first had.. it was making him hate the bath!

((hugs))

SJ x

Potty1 · 13/04/2005 18:11

Lou - sorry that you've had some more depressing news today

I hope a smiley moment comes along soon.

chonky · 13/04/2005 18:41

Sorry to hear your news

Original poster

lou33 · 13/04/2005 18:52

he has spastic diplegia cerebral palsy, high muscle tone on his lower half, low muscle tone on his trunk. He cant sit stable enough without one of those strappy chairs, he slumps down and sideways, and his legs are v stiff, they take a long time to relax even in warm water. We have a motorised one that raises and lowers which saves a bit of backache.

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hub2dee · 13/04/2005 20:27

That's a mouthful, Lou. Must be pretty darn hard at times. I'm sure today's news and the spammer added up to a most unpleasant afternoon.

Hope the evening's telly brings your blood pressure down and a smile to your face.

Pages · 13/04/2005 20:30

Hi Lou, I know exactly what you mean. But don't forget what they told you about your DD1 when she was small, and she has defied all the odds.

I can't stand on one leg either, by the way, I was the only one in my aerobics class (now a lapsed member!)who had to prop myself against the wall. I also had a squint until age 30 but had it corrected (they couldn't do the op when I was a child)and now you wouldn't know it was ever there.

Davros · 13/04/2005 20:45

Hi Lou, don't want to teach me grandmother to suck eggs (if you were my gm that WOULD be funny!) but have you thought about trying horse riding with him, if its available that is? Its just that some of the other mums at our session have often talked about how it has helped their children with trunk strength and control. Two of these children have CP, one very severe and the other much less so, and the other is deaf but seems to have some growth issues. I know its easy to make wild suggestions but just thought I'd mention it.

Thomcat · 13/04/2005 20:51

Oh sweetheart. So sorry mate. xxx

Thomcat · 13/04/2005 20:53

Lou, the horseriding idea Davros reccomends is a fab idea, although you may well have been there with that idea for ages. You could come and spend the day with me and come to the local place I take Lottie to.

heartinthecountry · 13/04/2005 21:12

Lou - just what you needed. Sometimes it really is shit isn't it?

I suppose if you wanted to scrabble around for silver linings you could tell yourself that with so many bad/sad things coming to light now, a good patch has got to be on its way. Hmm, that really is scrabbling isn't it?

SleepyJess · 13/04/2005 21:23

Hi again Lou. Just to reiterate what the others have said, my DS benefited enormously from Riding For The Disabled. It was strange.. he could sit on a horse long before he could sit unaided on the floor! He used to go up North when we lived up there.. and now we are waiting for a place here down South. My DS does have a different type of CP though (dystonic type, affecting his whole body but his muscle tone changes daily... sometimes he's stiff.. sometimes floppy) There were some children who used to attend RDA with spastic diplegia though as I used to chat to the parents.

Sorry if this has been mentioned before but could your DS be a candidate for Botox treatment as I know this is becoming a more and more common treatment for this type of CP.

SJ x

Original poster

lou33 · 13/04/2005 21:53

He is on the list for RDA, has been since he was 18m old, but they have a huge shortage of people to help, and they had their riding equipment stolen by a bunch of arses, so we are still waiting.

He has already had one op on his squint, it's turning again.

Dd1 was v different in as much as her things were not physical as such, more developmental, a permanent physical disability is just that. He will always have problems walking, at the very best he is expected to walk with sticks. Obviously we would be over the moon if he did more than that, but realistically it is unlikely.

As for Botox, he could possibly be in the future, but not now, they want him to be walking before they try it.

Anyway he went to bed like a little sweetie as usual, clutching a couple of his toys. I asked him if i could keep him and he said yes

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SleepyJess · 13/04/2005 22:01

He sounds like a gorgeous little man, Lou. How old is he?

Sorry you're feeling down about everything.. I know the feeling.. it never rains but it pours. My DS seemed to have a new diagnosis every couple of months for a while! And not changed dxs but additional ones! And never a proper dx for main condition.. dystonic cp is just a description. I think he has some unamed syndrome tbh.

(((hugs))) Be kind/patient with yourself for a bit.. and find a bit of time (even if only very little) to do something entirely for you... if you can.

SJ x

heartinthecountry · 13/04/2005 22:12

Aww Lou he does sound such a sweetheart!

I remember just after I first started posting on MN there was a thread called something like 'my blond angel got his wheels' with pics of your little ds2 and the whole thing totally made me cry cos he looked so pleased and you seemed so proud and it just really touched me. didn't know you then though so don't think I said anything.

You are allowed to not always be trying to look on the bright side of things. Some things cannot be wished away, however much we would desire it.

Original poster

lou33 · 13/04/2005 22:15

He is 4, and he really is a sweetheart, he melts the heart of anyone who meets him. I wish I could bottle some of what he has

I am really proud of him, and he is perfect to me and the rest of the lou family,but sometimes it just hurts, you know, on his behalf about the future?

I'll be feeling better tomorrow hopefully, if he isn't feeling depressed why should i?

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Thomcat · 13/04/2005 22:20

Of course it hurts sometimes babes, like hell huh, but he's a happy, bright, great kid and he's doing so well, and he does it with a smile. And I think you are great btw.

SleepyJess · 13/04/2005 22:21

Exactly Lou. My special ittle man (also 4 )..is the happiest little soul I know, litrally.. he enjoys the vast majority of every single day! I don't tend to stay feeling down for very long, because there he is, bursting with life and joy and demanding that I share in it!

Hope tomorrow is a better day

SJ xx

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