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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:
KarenThirl · 13/04/2005 07:40

Sorry, haven't time to read all of this. yes, the little things get you down but I'm finding that it's the little things - that parents of NT children take for granted - that can brighten your day as well. Swings and roundabouts, I think.

Original poster
lou33 · 13/04/2005 09:12

i guess atm I am a glass half empty person, because those things that ds2 achieves are always bittersweet. On the one hand I am so very proud of him for doing it, and so very sad he has struggled to do it so much longer after he should have been. Ds2 can't get out of a room if the door is shut , for example, and he is 4. He has to sit like a little puppy shouting for one of us to come and let him out.

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ggglimpopo · 13/04/2005 09:32

Message withdrawn

Original poster
lou33 · 13/04/2005 09:39

thanks ggg, am not usually so down about it, just the last few days. Ds2 is treated at rsch, chelsea and westminster, and jarvis centre. I know the experts can only give me an educated guess, dd1 was sn when she was born and they gave us all sorts of terrible prognosis', and she is your run of the mill stroppy teen now, but with ds2 i just know they are right. Their educated guess was off this time as well, they reckoned he would be walking by 3. Our physio is wonderful and v honest about these things, so i tend to take her word more seriously, as she seems him weekly.

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Davros · 13/04/2005 10:21

Sorry you are sad and down Lou. It is part of the accepting, adapting and moving on process but that doesn't make it any easier.

Original poster
lou33 · 13/04/2005 10:23

i am sure i will be fine tomorrow, am feeling sorry for myself that's all. Ds is a really happy and smart kid, but it breaks my heart when he asks why he is disabled.

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eidsvold · 13/04/2005 10:42

sorry you are feeling down... it seems funny - I seem to cope okay with the big picture but it is the little things that get to me.

My thoughts were that he would have some gorgeous girlfriend who would treat is as a pleasure to wash and massage his feet ( oops probably my needs showing through here - could do with a good footrub!!)

Original poster
lou33 · 13/04/2005 10:44
Grin
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Original poster
lou33 · 13/04/2005 10:44

I just had a late breakfast of chocolate birthday cake to try and cheer me

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Merlot · 13/04/2005 10:47

The little (and unexpected) things that tug at your heart. I think its because we tend to focus on our little ones as individuals and then something happens that makes you think OMG we're in this situation - and I just cant wave a magic wand and make it alright for him IYSWIM'. Hope you're feeling up' soon

RnB · 13/04/2005 10:51

Message withdrawn

Original poster
lou33 · 13/04/2005 10:56

he is eating birthday cake with me now.

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MandM · 13/04/2005 11:04

Lou33

I thought about your ds last night.

I've got one of those foot whirlpool thingies and I was sat there relaxing with my feet in it when the birthday rabble had left our house (also had B'day cake for brekkie BTW, it works wonders!) and was thinking Lou's ds might not be able to stand on one leg to wash his feet, but who the hell wants to stand on one leg when thay can sit down with one of these anyway...bliss...lol!

Hope you're feeling better soon

anniebear · 13/04/2005 11:05

Wish I was eating Birthday Cake!!!!!!

MandM · 13/04/2005 11:08

Anniebear - I don't think you're too far away from us, I'll invite you and Ellie and Grace over for a slice next time!

Original poster
lou33 · 13/04/2005 14:52

well i was feeling a bit better, dh took ds2 to his eye clinic appt while I went and got some bits for the kids in town (just boring school stuff).

When he picked me up he told me the doc said ds2 now has something called Brown Syndrome, which basically means his right eye cannot look up properly, so he has limited vision there. On top of the squint he has and the glasses he needs. We have to go back in 2 weeks for a thorough check over with eye drops.

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fairyfly · 13/04/2005 14:54

Oh dear lou, hope it gets sorted, mre stress though i know, sorry hon

MandM · 13/04/2005 14:55

Oh Lou , you and your little ds are really having a time of it at the moment.
I've never heard of Brown Syndrome before. How is ds at having his eyes examined? Is he brave or does he not like it?

Original poster
lou33 · 13/04/2005 14:58

It's pretty much to do with the muscle that allows that movement being too tight, or inelastic. They say there is a chance as he gets older it could loosen, and having done a quick whizz about google, it does say surgery is sometimes possible, but i don't know at what age. MAybe they can combine it with more squint surgery, they said that is turning more as well.

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NomDePlume · 13/04/2005 14:59

x x x x x x x x x sorry hon x x x x x x x x x

Original poster
lou33 · 13/04/2005 14:59

sorry mandm, he is used to the drop thing, they do it every six months or so, but it stings.

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RnB · 13/04/2005 15:46

Message withdrawn

coppertop · 13/04/2005 16:08

Sorry you're having to deal with so much, Lou.

maddiemo · 13/04/2005 16:12

Oh Lou

Marina · 13/04/2005 16:14

Lou
Dingle, French children's clothes manufacturers seem to be quite big on pretty cotton "big pants" or bloomers, sometimes with frills on etc. We are off for a short break soon to Northern France, would you like me to see if they have any pretty pants that your dd could wear over her nappies? If so, CAT me and we will check on sizes/preferred colours etc. I'm sure I could come up with something.