finding it hard to cope at the moment

[kreamkrackers]

we went to the wackey warehouse, first time we've ever been. a girl there was asking about dd1. so i told her how old she was and her name. she then asked what's wrong with her? why can't she walk? why can't she talk?

what do i say to that? i didn't know. i can explain it all to an adult but another child i just simple answered because she can't.

it really made me realise yet again how much she stands out as being different.

also, she does this thing where she sits on her bum but lifts her legs about an inch or two off the floor and balances waving her arms and fingers. she looks up at a ceiling whilst she does this and appears to be in a world of her own. she does it throughout the day, more when she's tired. her breathing becomes noisy. nobody can tell me why she does this. the girl spotted dd1 doing this and asked what she was doing. i said she's just having fun. it's hard, i don't know myself what she's doing.

i feel all over the place again at the moment. she's coming on so well in herself, but compared to other children her age she stands out more and more. i'm so happy that she's been accepted in the sen nursery, but then i'm getting so fustrated with waiting for other things to be done with her.

i'm finding it really hard to take her out again. we've got her in a side by side buggy with dd2. dd1 keeps rubbing herself down below and again we're not getting help to deal with this. we've been adviced to not tell her no as she won't yet understand why. we've been told to distract her, but again she goes into a world of her own and her breathing becomes so heavy. i don't want to take her out in the buggy as this is one of the main areas she does this in. we're also about to move house because she does this in bed and she shares her bedroom with dd2 and we now want to seperate them as this isn't going away.

i try to pretend i'm coping, but i'm not. i've never got over how we almost lost dd1 when she was 3 days old as nobody realised how ill she was and she ended up in multiple organ failure.

i really wanted another baby when dd1 was still a baby herself. i now have dd2 and if it wasn't for her i think i'd be much worse off then i am now.

i should be so happy that dd1 has survived and is getting better in herself but at points i'm finding it so hard to deal with whats going on and constantly fighting to get her the help she needs.

i know i'm just having a bad day again and finally letting off some built up steam but will i ever come to terms fully that she is different? i love her so much but sometimes i really struggle to. i hate feeling like this.

Sorry you are feeling so exhausted kreamkrackers.

With my son if a child asks a question like why doesn't he talk I tend to reply that DS finds it really difficult to talk but he is trying hard to learn which is why he sometimes makes odd noises.

I have also said that his brain works differently but thats ok.

It depends on the circumstances. I actually find children very matter of fact and sometimes more honest in their questions - especially at a young age.

Have to say I am out of my depth with some of your other problems. My son will put his hands down his pants and expose himself, we have always used a matter of fact - "put it away" which he now understands. He goes through phases of this.

Just wanted to offer some support

take carex

Can really relate to the way that you're feeling KK. I have felt absolutely dreadful for
months now and wonder how I'll ever pull myself up when ds's difficulties are lifelong and increasingly hard to cope with. You're not alone.

I've had the same problem with near constant 'fiddling' as I call it and it does become really hard in public - quite a shock when I'm reaching for the peas in Tescos and turn around to find ds with willy out for all to see! With him I think it's just a way of getting strong sensory feedback. It upsets me though that alot of the time he's simply bored and yet its often so difficult to engage him in anything more appropriate (he has dx of ASD and SLD). What can you do?

We were given similar advice that isn't of much use with ds.....Oh and social stories that are way beyond his understanding currently.

Sorry can't be more help, but just wanted to say - again - you're not alone

thanks for your support.

our portage workers just been and is going to try to get me some help again. dd1 can't go into respite care again at the moment as she keeps getting ill (has a low immune system).

we've been waiting since october for social services to help us like they said they would. dd1 has been in our local cdc nursery on an assessment placement, because we don't live close by i have to stay in the same building the whole time so social services said they'd get somebody else to do this for us and also have somebody come and take her out for a few hours a week. they know we don't get any help from family or friends. we've had team around the child meeting and at the meeting they say they'll provide us help starting from the next week. again we never hear from them and we always get an answer machine that goes unanswered.

i'd love to start a full time college course. i want to do something else with my life but i don't think i ever will get to do this now we have a sn child.

My DS is 6 now and yr 1 of school and it has got easier.

I always expected by this point in my life I would be back working (DS is my youngest) That hasn't happened but I did take a 12 week course and am now doing voluntary work in the SN education area. I attend meetings, write reports and help get parent views for statementing together but around the times my children are at school. Occasionally can not work it round and hubby will take the kids to school. Eventually I would love to be able to take up a paid position.

A year ago I would have never thought I would be working in any form...... I sat waiting for the phone to ring regarding DS.

Things do move on; sometimes for the better.