Not huge in the grand scheme of things...

[Galena]

...but can I have a bit of a moan?

So DD is doing fantastically, and I know I should be grateful. I AM grateful. She has CP and, whilst she is an independent walker, is a bit wobbly. She doesn't let it stop her and will do her best to do everything her friends do. She's also very bright academically (I know, all parents think this of their child, but she's not 4 yet and has been reading for over a year already...) However, some days you just get a sharp reminder of how different they are, don't you?

She was invited to a softplay party on Monday evening. She enjoyed it to start with - got very tired about halfway through - however, it really did bring home to me just how much her peers can do physically that she can't. They charge about, climbing over and under things without thinking, they cope with a bit of argy-bargy,etc. She has to really concentrate to climb up things - and at one point got stuck and needed help to climb up a particular bit. If anyone runs past her, gently knocking into her, she goes flying which, at the top of a softplay structure, can be a little hair-raising for me and is also very scary for her!

I tried to explain to my friends on FB when I got home how sad I was feeling for her, and they just really didn't 'get it'. Most of them said 'Yes, but, she can read!'. Like that makes a whole heap of difference when you've just had your nose rubbed in how different she is. I would willingly have traded her reading ability for just one day of being able to run and jump and climb like all the others.

I could cry! :( Sorry, will stop wallowing in self-pity...

I know, Galena. I can remember being crushed one day when I saw a school family all out on their bikes. Even when DS2 learnt to ride his there would be no way we could all go on the roads for a cycle ride, too blinking dangerous and DS2 would hate it and tantrum. So we don't do bike rides.

It's such a tiny little thing in the grand scheme of things, but sometimes they hurt more than others, and you can't always predict when that will be. (((Hugs)))

Yeah, exactly that - it's a small thing but it hurts...

Thank you for understanding. :)

It is hard for your friends not to try to minimise your dd's difficulties in a misguided attempt to make you feel better. It is bloody annoying though.

Funnily enough I've had that bike thing feeling exactly like EllenJane - I've felt really sad about it and I don't even own a bike of my own!!

Have a unmnet hug. My dd doesnt have cp but ASD and I get what you mean about the small things. I had a similar experience in a soft play. Dd is very forward physically so was running round like normal then two girls over a year younger came up to play with dd2 and they had near perfect speech and dd was still non verbal. It really brought home how different dd was.

Worse yet dd tried to play with them but was unable to work out how to connect. I left in tears sometimes its the small things that bring home the problems and I get exactly how you must of felt.

Its sometimes hard to watch normal children and realise how much your child struggels to do things they take for granted.

TBH, they aren't small things, either. Not being able to move around physically, or socialise with friends or play appropriately like all the other DC. They are worth a few tears.

tiny struggles, and small differnces (well, not small, but ykwim) are often the ones which really bring home how different life is/will be.

the bigger things in life are the ones we face up to - meet head on and tackle.

the smaller ones are the ones which make me want to sit and sob.

we are running a fundraiser for dd1's school. a lot of effort has gone into it, and we will be having a lunch at a restaurant. there have been many , and knowing s at just how chaotic it is going to be - d1's school is a highly specialised school for severe ASD. many families are coming, knowing that they may only be able to stay for 10 minutes.

me? I am of the fact that during those 10 minutes their dc will be able ot eat what they want. they won't have to bring a packed lunch/flask. they don't have ot plan their days out around what and where they can eat (well, they do, but in a very different way!)

a really small niggle, but one that is really cheesing me off in the planning stakes.

I've had the bike ride envy too (we take dd1 out in a family bike, or a SN trailer), and I've stopped taking her to softplay because I was of the mums who get to sit and natter - dd1 is physically ok, but needs me to talk her through everything and prompt her, otherwise she just sits down with me. again, a small niggle, but one which makes me feel on the outside.

a ((hug)) and a cup and a nod of understanding x

bit like that today with DS trivial thing like a pair of shoes has stopped him in his tracks. He refused to go swimming. He can run and jump and he is very fortunate to be able to do this. He has no fear and loves water and will walk accross the bottom lol.

I took him for lessons over the summer, taught him easiest . way to dry and change, took him when it was quiet though as sensory plays havoc in noise.

Today the first hic up of school. No way is he going, wont go school (did in the end) if he has to go swimming.

Issue? his bloody shoes. He has to have the same pair thin and battered, they have to be tight. They laugh at him because they are done up bow after bow then small loops need hooking on the hooks and eyes so they stay tight till his feet are blue due to anxiety the worse he is the tighter they are and he has this fear of falling and people laughing at him.

No way will he take them off without me there for anything, no one can do them tight enough. Kids were laughing at him this morning as he is honest and open about his concern. Its serious to him. They walked away from him and left him in the hallway and I felt :(

A pair of shoes and sensory anxiety stops him mixing, involving him in sports if they have to come off, if they get muddy the kids laugh as they have to be cleaned with them on his feet.

Trivial things are what causes the most hurt sometimes I think x

But none of it is small for our dcs is it? These are the 'small' things that are stopping them from doing what they want, that stop them enjoy life in the same way that nt children do.
I see my ds wanting to have friends and not knowing how to engage with them. Of course it makes me sad. The fact he can walk and think isn't going to make him less isolated.

All these small things are symptoms of the big issue and very much the reasons why life is harder for our dcs.

See, DD doesn't really notice that she is different. And the children at preschool don't notice either. I know she will become more aware as she gets older, but at the moment, she doesn't care, but I do!

Galena it isn't small, it's huge.

We have similar issues here. The girls next door knock for our girls to play. Except that they want to play out the front, and there are 6 of them, ranging in age. The older ones keep an eye on the younger ones, so the Mum doesn't have to be out with them.

If it's just DD2 and DD3, I can let them play. Once DD1's there, I have to be there. Now, call me selfish, but it is cold and I don't want to be stood on a pavement for hours at a time. So, I have to weigh up a little bit of doing what they want, then I say 'actually now I'm too cold.'

The older girls say 'we'll look after DD1' but of course, I can't allow a 10 year old to take supervision of a highly impulsive 7 year old with limited functional sense of danger.

Then, there's the scooter. DD1 tried to use it and went crashing into the kerb. I heard the older girl say 'she was doing quite well, but she lost concentration then she crashed.'

I felt warm and fuzzy that she was seeing DD1 in such a positive way. I also felt that she was so different.

See, I knew none of you would say 'But she can read!'

Thank you all.