Am sick of this life

[TheDMshouldbeRivened]

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.

awww thanks Pipin. I'm not strong or courageous or I wouldn't have had a meltdowny weekend.
dd is better today. Only 2 hours of shrieking because she really needed to sleep and wouldn't. Its the sheer never ending relentlessness of it that grinds me down. I know she is highly strung because she is so bright. Her paed, bless his cotton socks, tells me its a 'good' sign!

Riven,
Not much to add, but unmumsnetty hugs and a cup of tea / slice of cake. Know it ain't much, sorry.
Perhaps your DD is just really really really frustrated 'cause she has a brain in there and can't speak. Wish they could find you a communication device for her, but other than sending virtual kick up the @@@@ to your SW no idea how it would be done.
Hope going back to school gives her some stimulation and you and DH a break.
Brio
x

P.S. Vent all you like!

Hi Riven, So sorry that you're having such a shit time at the moment. I've often read your posts and felt for you for what life can be like for you and you have your other kids too, but I have also felt how strong and level headed ( and funny and fiesty too! ) you appear to be and your strength will hopefully return when you've had a chance to re-charge your batteries a bit when school starts. Sleep deprivation makes it impossible to keep going and not become totally demented at some point. For me it often comes out in anger and shouting too.. But you know that you all need some rest and space. It's so claustrophobic being with your child all the time isn't it? I agree that the relentlessnes of having a sn kid is so overwhelming at times. Especially if they also seem unhappy.
Your post resonated with me. Our ds1(NT) is now in school and so we've had a long holiday with him and dd2 (sn) around together.. We've tried to do stuff as a family lots but I've had an overwhelming feeling that dd2 spoils everything we do. She has screamed and cried so much this last 6 weeks and because she has no real communication I never know exactly why. She seems so angry and sad and I feel so helpless, and at times angry too. This week she's had a tummy bug so that's understandable but everything we try and do just makes her miserable. The only time the family is relaxed is when she is asleep. I adore her but it's so hard being her Mum a lot of the time. No one wants to look after her and in fact both sets of grandparents keep suggesting sending her away for respite but we wouldn't want to do that. It would break my heart. My mum said to me this week when I was describing how fil keeps suggesting respite care and she said she agreed with him " Look - your children are not my responsibility!!"
It's a very lonely place to be at times but at least we all know we are not alone in feeling like this. Hang in there. I hope you have a better week.. Sorry for long whingy reply.. Take care of yourself..

I'm so sorry you're having such a bad time atm.
I've read many of your posts and i realise it must be very hard for you and your family.
You must love your dd so much, and i can only imagine your heartbreak some days when things are very bad.
I hope things start to improve , and that you get some help...and some sleep.
Sending you virtual hugs.
Take care.

have you seen a dan doctor if you child is screaming it could be a rib full fo faeces
colitis is common have you had a comprehensive stool analysis test dome to check his gut?
places that do this are genova dianostics and breakspear hospital funding is available for this if your child is asd
fom caudwell funding.com

I used to work with a girl who screamed and cried the majority of the time. She had cp & ld but cried because of some problems in her brain ( not sure exactly) but they were described as major migraines. Assuming the amount of scans she has had that that would have shown up. Anyway just trying to show you there are others out there.

I think I am right in thinking she is at ms school? Not sure if it would be possible to consider a sn school cos at least they wouldn't turn her away for being that wound up ( or at least the 2 I worked in wouldn't !)

Otherwise come up here and I cab recommend schools and very patient carers, though not sure about the health care!