Little things get you down

[lou33]

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.

[anniebear]

Arrrh.

So many things get me down and I think that to others it would seem such a small thing but I think when your child has SN most small things seem HUGE!

Ellie has a squint and I so wish she didnt. At the moment it is the least of her problems, but I think she has enough to deal with without a wonky eye!!!

[lou33]

ds2 has one as well, we had it operated on but it is still slightly there, we felt exactly the same. Its down to the muscle tone they said.

[MandM]

Absolutely.

Today is Dd's birthday, she was a little angel this morning, really enjoyed opening all of her presents and had a lovely time. Then we had to go to the pod. clinic at the local special school to collect her new (first ever) night AFO and shoes that have had a raise inserted and I just did not like the stupid shoe. I know it sounds daft and insignificant, but the raise just looked so much bigger and obvious than I had been expecting and she had a really girly 'birthday outfit' on and the shoes are heavy and black so the contrast between my pretty little girl and these 'special' shoes really hit me. The Pod. asked if I wanted to leave them on her, but I snapped 'No', stuck them in the bag and put her shiny lilac boots back on!
I'll be over it by tomorrow, and just get used to this like I've had to get used to everything else, but this morning it really got me down.

[lou33]

yes ManM, ikwym, dd1 who is 13 (yesterday) used to wear piedro boots and they looked so big and bulky. That's anoher thing, the pt said she may get him some piedros for when he uses his walking frame.

[Gwenick]

• I'm 26 and still can't stand on one leg to wash my feet properly - usually sit down to put my socks on too..

[heartinthecountry]

I think for me Lou these little things are the ones that hit home that my child is never going to reach 'normality'. Which is stupid because I KNOW she is disabled. And its not even that her being 'normal' is a major issue. But I think its that no matter how much she learns, how much progress she makes, how amazing she is - some things are always going to be beyond her. And that just seems so unfair.

[ThomCat]

Oh bless you Lou, and your little man. well have your moment of feeling down, take 2 momentsactually and have a good old cry.
And then I want you to say, 'but at least he has 2 feet, and the doctor only said unlikey, not impossible, and there is every chance that he will eventually stand unaided and last but not least, he'll wash his feet in the bath so he'll be siting down anyway!!!, '.

HTH!
Hugs to you and your smelly footed little man, xx

[heartinthecountry]

I know it is more obvious when they have to have inserts/rises etc but my dd's piedro's really are cool. They are purple with purple patent crocodile skin trimming. Honestly, everyone comments on how lovely they are without realising they are 'NHS specials'.

Ask to see the catalogue, there are now lots of different styles and colours - they don't have to be black or brown. Though I guess it may be more limited if they need to be customised. Don't know.

[lou33]

hitc i couldn't agree more. While ds2 is learning new things, the gap between him and his peers is widening faster, and it's heart breaking to see him watching from his wheelchair while others dash about, knowing he wont be able to run even as an adult.

[FastasleepTheInsomniac]

You guys those things might be 'little things' to you, but I'm not sure how I'd cope with a stack of little things like that! Hats off to you. Don't feel silly about having a good cry!

I can't stand on one leg either!

[Potty1]

Lou - hugs to you and little Lou.

MandM - Happy birthday to your dd. My dd wears a raise on her shoe and the first time I saw it I wept - it looked so big and ungainly. Now she's much bigger it doesn't seem so bad.........

[ThomCat]

I always get positive comments about lotties piedro boots and people ask where we get them and i say 'ohh we have them made'! LOL

[moderatorlou33]

Tc, thanks, didn't see your post initially. Tbh there is v little chance if him standing unaided ever, he will alway needa wheelchair for longer journeys, and we are hoping he might be able to use stikcs for walking about the house etc, but even that is not for sure. Too much to ask for independent unassisted walking.

[moderatorlou33]

sorry had to put mod hat on and havent taken it off yet

[Potty1]

Yes, you've been busy haven't you?

[MandM]

LOL TC and the 'handmade' shoes...I read it first as 'we make them' . Had visions of you and Lottie making boots with cardboard and pritt stick!!!!
HITC, there are some really pretty piedro boots about but these are just normal shoes that have ahd a raise put inbetween the shoe and the sole on one foot, like Potty1's dd.
The stupid thing is...I bought the shoes!!! I picked black, during a sensible moment(they are v. rare BTW!), as they would match the most things, but perhaps in hindsight, not a great move coming up to summer!
Anyway Lou33 this was a good thread to start, hope it's cheered you up as much as me! I'm off home in a minute (at work now) to pick Marley up so that we can cut into the fantastic (IMO!) barbie princess birthday cake that I spent my weekend lovingly creating for her birthday from sponge cake and fondant icing..lol! Got some friend's children coming for birthday tea and loads of visitors due so hopefully we will have a nice evening!

[heartinthecountry]

Happy Birthday Mini MandM - hey it sounds like there will be so much pink fluffiness that one little pair of black shoes will go completely unnoticed!

[Davros]

Those little things can surprise you can't they I still get upset every now and then seeing DS going off on the bus in the morning, although I'm delighted he does! Your DS is such a sweetie Lou but a twinge of sadness is inevitable now and then. Take off mod hat and have cuppa until the wine hour!

[Dingle]

Oh Lou, don't you think that it's because they may be such small things to other children, that's why it seems to hit you harder!

DD went into mainstream nursery today, proudly wearing a new little grey pinifore dress. She looked so, so cute. Hair in bunches, little nursery sweatshirt on....so grown up for 3.6!
But I am dreading the hotter months! What will she wear on her feet? We don't get Piedros anymore, not since she's been given the AFOs. I tend to let her wear her standard shoes/boot at mainstream nursery and put her in her AFOs for the afternoon so that I can monitor her and prevent her from taking them off!!
She's still in nappies, and tights seem to help cover this IYSWIM,she can't wear boots and tights all year though.

Like you say, siily little things that just seem to stick in your mind! I can't help, but I can say that you are definately not alone on here, are you!

hugs, Dingle.xx

[Blossomhill]

Lou. It is so natural to feel the way you do. You are his mum after all.
You know where I am if ever you need to talk.
Love and hugs Blossom xxxxxxxxxxxxxxxxxxxxxxx

[lou33]

thanks all, i knew you would all know what i was talking about. Another example, I just sat down to log on here and ds2 shouted toilet toilet! He can't sort his trousers to go, can't stand, can't get on his sn toilet chair, other kids his age could just whip it out and pee, then carry on what they were doing before, it's a whole rigmarole for us.

[ThomCat]

Ahhhh, mate.

[Gwenick]

Just re-read my post from earlier - didn't mean it to sound so callous

[lou33]

it's ok gwen i knew what you were trying to say

[Gwenick]

phew!!! [relieved emoticon]