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Original poster

Am sick of this life

35 replies

TheDMshouldbeRivened · 30/08/2009 20:02

major vent coming up. DD has been screaming all sodding day. Again. 6 years of screaming. I have never met a disabled child who yells as much as she does. DH is walking the streets right now as its the only thing that calms her. He said very sadly that he wishes we were like normal people with no responisbilities and he wants the 6 years of his life back.
Because it really is shit day in and day out.

OP posts:
Littlefish · 30/08/2009 20:07

You just vent away Riven. You've had a crappy day. When does term start? Will that give you some respite?

Original poster
TheDMshouldbeRivened · 30/08/2009 20:10

Its been a crappy 6 weeks. She hasn't stopped whining getting stiff or yelling for 6 bloody weeks. School wont take her like this.
And what if DH cant stand it anymore and leaves? Feel like leaving myself. I just want a normal day and a full nights sleep.
Why does she yell or the time? I've met many many quad CP's and not one yells like dd. Not one child at the disabled group yells like dd. I don't understand why she is always so fucking miserable.
We are going to have to sedate her agian tonight.
And dh's parents came, saw how shitty our life is, talked about thier ski-ing holiday and never offered to help in any way. Then fucked off to their easy life.

OP posts:
TotalChaos · 30/08/2009 20:14

sorry it's been a shit day. you've had a bad week with her too from your posts.

Original poster
TheDMshouldbeRivened · 30/08/2009 20:16

is this how the rest of my life will be?

OP posts:
Salleroo · 30/08/2009 20:25

Can you/Do you get any respite care? I think of you often (I've ready many of your posts, not a stalker ). Not much help thinking about you I know. Could you ask the ILs outright to babysit for a couple of hours while you and DH go for a walk/drink/sleep?

Original poster
TheDMshouldbeRivened · 30/08/2009 20:27

IL's will not babysit (and MIL thinks dd is better off dead)
We do get respite help 3 hours on a sat n sun but when the yelling and stiffening starts they cant cope

OP posts:
TotalChaos · 30/08/2009 20:38

I can't sit here promising you anything - but I think there will be happier times for you - there will be moments of joy and laughter, time when you can proudly think of her enjoying her school day. you have had a particularly bad week with DD with her being unwell with temps/rashes etc.

Phoenix4725 · 30/08/2009 20:42

sorry doe snot seem enough, fingers crossed Dd comes down so you can get her back to school and you can sleep everything is ten times harder when you not enough rest.

Im taking it mantraps not work next time tell me and I will boil up the flypapers for you

daisy5678 · 30/08/2009 21:16

Sorry you're having a crap time.

The sleep issue sounds difficult - have they agreed to fund the monitor thing yet so that you don't have to stay by her side all night - you might feel that you have more time for yourself then, some evening time etc.

You're seeing paed next week, aren't you? Hope he can give you some answers and some alternative to the sedating as I know that some people involved with dd are very resistant to you doing that (was it SW?) and have told you not to.

Your ILs sound vile in so so many ways. Surely MIL doesn't still think that? Did she just say it when dd was first born? Not that that makes it all OK, but hasn't her attitude changed as dd has got older?

School will have to cope at some point. The respite carers with have to cope at some point, cos you do need time away, and if dd knows that she can yell and then she gets you instead of school/ them, she presumably is bright enough to know that that's the way to achieve what she wants.

I get that you are totally devoted to her, but there comes a point where everyone needs some respite, and if school and respite carers know you're always there to bail them out, they'll use that escape route and not find their own ways to deal with it.

Hope that things get easier for you.

IUsedToBePeachy · 30/08/2009 21:21

If I could work teh gubbins she ahs around ehr I would gladly offer you a day away Riv, I hope you know that. maybe when bas is older you can teach me (I did used to Nurse, many millennia ago).

Your DH is a love, he loves your dd2, but we all need a break on days like this. Does he ever get away? I kmnow you try to and find you miss her, but what time does he get apart from work?

I wish I ahd the right things to make it better, I really do

5inthebed · 30/08/2009 21:55

So sorry you're having such a hard time Riven. Your Dh won't leave you, from what you have said about him in your posts, he sounds like an absolute darling.

I might be talking a load of crap, and please feel free to tell me so, but does she shout because of her CP or because of her ASD?

The holidays are far too long for children with SN! I really do think they should make them shorter, or have some sort of day scheme for our DC. A friend of a friend called me last week to have a chat, as she had heard how hard I was finding it, and said the same thing.

donkeyderby · 30/08/2009 23:03

Riven, sorry you've had a shit holiday (should I say 'holiday'?) I can only say that we have had dreadful summers, resulting in crisis and the feeling that we can't go on. Respite and a recent local playscheme has been our salvation. The respite is only available for kids aged 10 and above so we had to bide our time. Will you get any help at a later stage? What you currently have sounds so inadequate.

I have spent the last two weeks caring for a mentally ill friend, culminating in a very traumatic sectioning and admission to psychiatric ward. As I told a fellow parent-carer, it has been a piece of piss compared to caring for ds1 round the clock back in the dark days. I can walk away from this situation an have time out but i can't walk away from ds1. No-one would believe what we have to go through.

Phoenix4725 · 31/08/2009 06:45

Hope your feeling bit better today Riven and got some sleep

Original poster
TheDMshouldbeRivened · 31/08/2009 07:09

just waiting for dd to wake and see if she is still a monster.

OP posts:
ChopsTheDuck · 31/08/2009 07:39

Morning Riven, hope dd is calmer this morning.

Maybe you should drop her to school next week, and turn your phone off for the day.

PheasantPlucker · 31/08/2009 08:38

Morning Riven, hope you have a calmer day with dd. Thinking of you.

phlebas · 31/08/2009 09:10

I hope today is okay & your dd is calm

troutpout · 31/08/2009 09:28

Hope today is easier riven

2shoes · 31/08/2009 10:16

hope things are better today.
do you think she is frustrated? must be hard for her not to be able to do the stuff she wants to, also have you had her checked to make sure she hasn't got an ear infection or something like that?

nikos · 31/08/2009 11:36

Screaming is so so hard to try and find your way through. She might just be vocalising her frustration and letting everyone know she is there. It might not necessarily mean she is miserable all the time, hard to knowand hard to bear.
In all seriousness would ear plugs be an option? It sounds like it would be nigh impossible to stop the screaming and you have to keep your sanity to cope with everything. No sleep and that type of constant noise would drive anyone over the edge. Please take care
xxx

Original poster
TheDMshouldbeRivened · 31/08/2009 11:53

many doctors have checked every orifice to try and locate the source of her discomfort before falling back on 'well she is brain damaged, it makes the brain irritable'. But no other child I know with CP yells like dd does.
If she isn't screaming she's whining and whinging.
Roll on thursday!
But the long term is so scary. Being tired for ever and never going out and never being 'carefree'. And then I feel guilty because the only way I will get it is if she dies and I don't want her to die despite doctors saying she will.

OP posts:
2shoes · 31/08/2009 13:03

the only answer I can think of is a school like dd's where you get respite on site, they have doctors and nurses on site as well, so somthing like this would not stop her going to school.
has she been like it all the holiday?

Original poster
TheDMshouldbeRivened · 31/08/2009 14:23

pretty much. Been a looooooooooooooong 6 weeks.
Thing is, she's too young to send away, and I wouldn't want too. The SN schools here only cater for LD's so while dd's physical impairment is as severe as you can get, they cant cater for her mind, IYSWIM
She's fallen asleep now after 2 hours of tired screaming and limbs so stiff they were vibrating.
I just want her to be happy and smiley.

OP posts:
2shoes · 31/08/2009 15:23

it is so bloody hard. I feel for you.

saggyjuju · 31/08/2009 18:59

i have the biggest sympathies for you and sadly dont have any answers,the family thing i think from my experiences is they dont know how to cope and as long as its them not doing the coping then thats fine and time to bury their heads in their latest ski holiday,anyway you cant possibly be not coping because i got a tongue lashing from one of the above mentioned relatives with the perfect life,telling me just how crap i am with my disabled child and how fantastic someone is at school who has a disabled child and they are improving that childs life unlike me who is making my childs worse i too wish i had been given the gift of analysing a situation in seconds like my relative,because shes never actually spoken to the parent and only passes the disabled child enroute to school and a child with dissabilities is excempt from ever given their parents a bad time aren't they? take care of yourself x