Reality bites.

[lou33]

Must admit to feeling a bit swamped by everything atm, so sorry if I sould a but self indulgent.

Am surrounded by forms, reports,letters, and all sorts of crap relating to ds2, statementing, dla and whatever else. I have tons of equipment that has no space to be put, and today Ot paid a visit to see ds2 with regards to his statementing, but also to talk about his bath chair (it's rubbish for him). So we decided he needs a different, more supportive one, and then she says that she will get our shower looked at and lowered as well, as it will cause problems for him and us as he gets bigger (lifting him because is it up a step). Then she started talking about getting a hoist for him to get him in and out of the bath, as he is now over the recommended carrying weight.

Suddenly I feel like it's all getting too much. My beautiful little boy is always going to have problems, I can't get away from it any longer .

Sorry to moan.

Absolutely nothing constructive to say but I'll send you lots of supportive hugs instead. {{{}}}

Don't know what to say, hugs to you. Hope things feel a bit better tomorrow.

Oh Lou, sorry you are feeling down, not surprising though. Haven't really got anything helpful i can say as i have no experiance of this really.
My best friends brother had cp and i do remember his mum getting very upset when she couldn't carry him upstairs any longer.

Hope you are feeling better soon.

Oooh, Lou, that does all sound overwhelming, all in one go. It all sounds so horrible stated baldly by a 'professional', doesn't it? Even if you knew it all anyway. And it's horrible when you have to face those appointments alone, too.
Give yourself a big hug, give your beautiful boy a big hug...he's still the cuddly mite he was before all the practicalities were listed out for you.
Big hugs to you. You're not moaning, just feeling natural.

oh lou i'm so sorry to hear your feeling so low as the mo.

We all have up's and downs but i know you'll get through all of this your stronger than you think both of you.

I know all the forms can be a bit daunting can't your helath visitor help you fill them out???

Must be the day for it Lou- I've just finished horrible DLA form for renewal- and my nursery manager has just sent me her contribution. Horrible reading Friend has just phoned after coming back from a meeting at her dd's school which was fairly awful

Hate it hate it hate it.

They are still the same underneath it all. Have a look at him asleep tonight. I'm going to look at mine........

It must be so hard Lou. Don't apologise (and you're not moaning). Best wishes,

Dinosaur xx

agree with jimjams, really must be the day for it. I have been depressed all day! had my mum and gran round - got on my soap box and feel slightly better.

Lou I am sorry it is getting on top you, I really am. I feel with dd its one thing after another. especialy when dd was your ds's age - I always thought she was going to improve more quickly than she had done, things that were unspiralling really used to shock me. And make me feel sick. I cant say dont feel bad about it, because its normal, hes your baby and of course it will upset you. He IS doing well though and he does sound like a little darling. Statementing is a very grim time, we have our review soon and I am dreading it. Pushing for services and feeling sick and upset about what they write about your child, that you know much better. Just remember though they have to make our children sound worse for the right kind of help. Be happy they are giving you equiptment you need, even though you dont want it (?this doesnt make sense but I know what it means, ignore me if you like!) I really want to hug you xx

Lou, big hugs to you.

Lou - so sorry you're feeling down. I suppose I'm lucky as dd is fairly mobile and we don't need hoists and stuff.

Pleased to hear you've got an OT looking after YOUR needs! I know what you mean about realising the problems are always going to be there.

Message withdrawn

Lou, nothing useful to say but sending you hugs anyway.

Thank you for listening everyone. FD, the forms are done and sent, but I meant all the other paraphernalia relating to it, the acknowledgements etc. I'm pretty good at describing the worst possible scenario .

Forgot to mention that Ot is also referring us to the dreaded ss OT to try and get a grant to extend into the attic, so we can have a therapy room made. Just all so real iykwim.

Oh Lou, no wonder you are feeling grotty, you try so hard not to dwell or ignore for that matter. Hugs to you

lou, so sorry you're feeling bad. It's when someone comes round and talks practicalities and you just can't get away from it. It's really hard. Hugs {{}}

Lou - (((xxx)))

Missed this yesterday, lou. Hugs from me too. Hope you feel better today.

I think yesterday has sent me in a downward spiral. Feel rubbish today. But thanks for all your lovely posts.

lou, only just seen this, don't get on mn as much since little man arrived but wanted to pass on my love and say at least you are getting things for your ds, it's like getting blood out of a stone up here to get anything

Thanks chatee. I know I am getting great services, and feel very grateful for that, judging by some stories I hear. We are in the best place for ds2, but it just overwhelms me atm.

How is yout little man btw?

so sorry lou33

hi lou,
little man is great at feeding but not as good at sleeping!!!still breast feeding so he seems permanently attatched-managed to express my first lot yesterday in preparation for when the time comes....
we have dd's review next week for transition into school-
still waiting for an ot visit since last june, even nursery haven't had there call returned!!(so don't hold out much hope that ot will attend or even get any support before she leaves nursery)
keep your chin up honey, my dd has changed so much in a year-although still not walking unaided at least she can stand unaided for about 30 secs

Lou - thought about you last night. I was putting dd to bed (she's 12 next month) and she still wanted her cuddle. When I laid with her she cuddled me like a two year old (which is about her mental age).

That's the best part of the day when my big girl is still a little girl. But I've come to terms with the fact that she'll always be a little girl, even when she's adult IYKWIM. It does hurt, doesn't it?

I'm amazed you can get time to post to me in that case Chatee! Thanks even more .

Thanks for thiking of me Dottee, you are exactly right.

Anyway, slight update.

Just had a very long and sympathetic call from a member of Scope. I sent the only contact name I have a copy of my email, and she called me today. She called the press office to see ig they had heard anything regarding the use of the word, and they had. Apparently they contacted Mr Curtis when the film was first released, giving him advice of the appropriate use of language. She doesn't know if he responded though, but will find out. If he hasn't then SHAME ON HIM.

Anyway she was full of praise for my email, and has asked if she can send it to the press office, which obviously I said yes to. She has asked them to respond to me too, and let me know any outcomes.

Still haven't heard from RC though.