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SN children

Any one wan't to join me in feeling fed up and low?

15 replies

Marne · 04/11/2009 10:08

Just feeling sorry for myself (again).

Fed up with being fobbed or reg dd2's education.

Fed up with DH for not helping me with the dd's but is happy to sit and watch as i struggle with dd1's behaviour.

Fed up with people thinking they know best for my dd's when they have no experience of ASD.

Fed up with having no social life, being a SAHM and carer.

Fed up with not being able to take the girls away for a few days because dh doesn't want to go anywhere.

I feel like bundling the girls in the car and driving far far away , i know i can't run away from things but at the moment i don't feel strong enough to fight any more .

Sorry for the rant but this is the only place i can do it, i have no one in RL who i can talk to, my mum doesn't listen and seems to think the girls don't have any problems, my husband seems to think there are no problems but spends most of his time moaning about the dd's being to noisy, to messy etc but doesn't show willing in helping me handle their behaviour.

Dd1 is pushing me to the limit with the continues talking, answering back, not going to sleep and only wanting mummy.

Dd2 is talking more and more which makes me happy as 6 months ago she was non-verbal but dh just moans as dd2 spends hours (at night) singing nursery rhymes and mimicking things from the TV.

Yesterday i spoke to the head of dd2's school (for next sept)_only to be told they may not have the money to fund a 1:1 for her next september (i am trying to get her statemented).

I just feel like i am doing all this fighting for the dd's by myself and dh thinks because he works he hasn't got time to support us at home, i know he supports us with money and he works hard but i need support at home.

Thanks for listening, i could write more but i don't want to bore you , i'm sure a lot of you are going through the ame if not worse.

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magso · 04/11/2009 10:48

Oh Marne- it usually helps to offload the feelings to someone! Have been there too but am further along the bumpy sn trail so feel less ignored by everyone at present - although I am still battling on the home front - espected to be perfect mum/organisor/advocate/therapist/researcher/wife and bring in some funds and of course fail on all fronts. I feel like I am wearing a forced on invisability cloak sometimes ( ds is in the harry potter phase at present).
No practical advice but (Hugs)
You are doing a great job!

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sarah293 · 04/11/2009 11:08

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Jo5677 · 04/11/2009 11:25

Hi Marne,could identify with how you're feeling.
I'm pig sick atm with just about everything and everyone.
Sick of spending my days trying to chase up orthotics,O.T's,various pieces of equipment and running from one appointment to the next,only for it to result in yet another round of fonecalls and appointments.
Sick of being told i should be used to it all by now and to keep my chin up.
Seriously if one more person says chin up to me then i might just chin them lol.
'cos on top of it all i've got all the kids behaviour to 'manage/cope' with, have a srtoppy toddler,a moody 5 year old,an autistic 8 year old,a flouncy 10 year old and a quad CP 12 year old.
To top it all of we're of on holiday on Friday and are having to take a scruffy old far to small wheelchair with us for our daughter because wheelchair service have still not repaired my daughters proper wheelchair that they've had 2 weeks to fix .
Everyone keeps saying at least you've got a week away but i just don't feel very cheery knowing as soon as i get back i'll be straight back to rounds of appointments and days of wasted fonecalls .
Running away often appeals to me though obv i never would.

Like Riven says must be a month for it.

And like Magso said it sounds like you're doing a great job.
Husbands and friends and fam oftn don't understand how draining doing all the battles yourself,statementing etc can be but at least other Mums who have been there/are there get it.
Take care xx

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5inthehousesofparliament · 04/11/2009 11:31

Is there room on the bench for another?
DS2 is being so hard to deal with, and DH moaning about his behaviour being all my fault. Also like your DH Marne, I'm expected to sort everything out for ds2 re school/hospitals/dla/SW.

Do you have a social worker Marne? Would you be able to get some sort of respite? I've been given 6 hours a week during the holidays, where DS2 goes to someones house (shared care it is called) and I get to do stuff with the other 2 DC. If you don't, contact your HV and ask for a CAF to be one.

I think you're fab Marne, always admired your strength when dealing with your DDs.

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magso · 04/11/2009 11:57

Ah I fantisize about running away but ofcourse none of us ever could - or would!!

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Marne · 04/11/2009 12:31

Thank you all so much and yes there's plenty of room on the bench .

I think dd1 is being hard work because she was ill 2 weeks ago and got a lot of attention from me (extra cuddles, time spent playing board games ect) and i just havn't got the time to spend as much time with her now, i try to make time for her when she gets home from school but it always ends with dd1 taking thing to far and answering me back, i find myself constantly arguing with her and she always seems to get the last word ( as most AS children seem too ), dh just sits there and doesn't back me up and blames me for her behaviour.

I would love to run away but the problem is i would one day have to come back.

Dd2 has portage coming at 2pm so at least i can relax when dd2 gets some attention .

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BriocheDoree · 04/11/2009 13:27

Can I join in, too, at least just temporarily. Got some kind of virus - sore throat, fever. Sort of thing that just makes you want to wrap yourself up in bed with a good book and a cup of tea. Instead, it's half term and both kids are rampaging. DD is in sensory seeking overdrive after a week's lack of routine. Usually I just take her out / do something physical but today I just want her to go away and amuse herself which she is really BAD at.
DS is being adorable toddler but the last thing I want right now is an adorable toddler IYSWIM. Oh, and I know that DH isn't going to be home until 9 p.m. tonight so no chance of help with baths and bed

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bubblagirl · 04/11/2009 13:48

big hugs to everyone sorry haven't been on here for a long time now

marne it can feel like the loneliness job in the world my dp works long hrs and all the battles have been down to me and me only i know how your feeling but you must remind yourself although its a struggle your doing good

if you ever want to talk my email is sylv _ 25 at hotmail dot co dot uk no spaces

that applies to anyone

also im so happy to hear your dd is talking more that is fab

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bubblagirl · 04/11/2009 13:49

if you live near me we could always get together or even take kids away id help you

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bubblagirl · 04/11/2009 13:50

oh just checked not near me but my dp mum lives in plymouth so maybe next time were around that way we could do something im sure your not that far from plymouth are you?

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mysonben · 04/11/2009 14:41

Marne, it is so difficult to manage everything, children, appointments, battle for everything, the home,... and with no or little support from family or friends, it does get us down.

I sometimes wish i could just curl up somewhere and sleep whislt someone else it sorting things out.
I'm totally fed up to be told one thing by someone then another by someone else.
I don't know who i can fully trust, listen to, when it comes to DS's dx and schooling.
The only ones that i can rely on for advice and impartial opinions are right here....you ladies on MN.

I hope it gets better and easier to manage for all of us very soon. Sending you hugs.
xx

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sarah293 · 04/11/2009 14:44

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bubblagirl · 04/11/2009 14:56

they have to prove you used wrong charger riven and broke it didnt think chargers broke things it would just blow the charger not the item

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WetAugust · 04/11/2009 21:10

Riven - that's what insurance is for. My son's equipment is supplied by your LA and the LA also pays for the insurance policy premiums he has taken out on theat equipment. I don't know who 'owns' your DD's equipment - you or school - but whoever does shold have it insured and if it's you then you can claim the premiums back.

Best wishes

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sarah293 · 05/11/2009 07:20

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