im worn out fighting

[hev]

before i had steve i would have assumed that having a child with special needs you and the child would get help,now ive realised you have to fight so hard for everything.

 

as well as coping with the childs behavious and problems we have to fight to get a dx then fight to get help in school,fight to get statement,dla,respite,it seems there is a hurdle for everything we ask for.

 

im not feeling sorry for myself,i just do not understand how it all works,fair enough we have to fight for things in life but my god the way us and our kids are treated is a joke,then we have other people even our own family members,friends etc doubting what we say,giving their opinions which can be very hurtful.

 

i told every professional who works with me and steve 2 weeks ago that i wanted to admit myself to a psychiatric unit,i felt so low,what happened?absolutely nothing,they couldnt care less about me or steven,i would love to know how to change things bu ive no idea,how desperate do you get before you get help?i think it all stinks the lot of it,i will be fighting steves corner again tomorrow as we all will for our kids but i feel mentally exhausted tonight

[smiley]

<'> <'> Me too today <'> <'>

 

Feel the need for a 'throwing a strop' thread...

 

It's when you find your crying and you hadn't even realised..... just too much sometimes hey hun? <'>

 

I'm treating myself to a nice slice of of cheesecake scrummy

 

<'> <'>

[Greenman]

before i had steve i would have assumed that having a child with special needs you and the child would get help,now ive realised you have to fight so hard for everything.

 

as well as coping with the childs behavious and problems we have to fight to get a dx then fight to get help in school,fight to get statement,dla,respite,it seems there is a hurdle for everything we ask for.

 

im not feeling sorry for myself,i just do not understand how it all works,fair enough we have to fight for things in life but my god the way us and our kids are treated is a joke,then we have other people even our own family members,friends etc doubting what we say,giving their opinions which can be very hurtful.

 

i told every professional who works with me and steve 2 weeks ago that i wanted to admit myself to a psychiatric unit,i felt so low,what happened?absolutely nothing,they couldnt care less about me or steven,i would love to know how to change things bu ive no idea,how desperate do you get before you get help?i think it all stinks the lot of it,i will be fighting steves corner again tomorrow as we all will for our kids but i feel mentally exhausted tonight

 

Hey Hev,

 

We feel the same at present- it all seems as if your treadding water and not getting anywhere! My wife has been very upset the passed few days, if it's not our son's school it's him playing up! The whole house is nearly at breaking point. This is why I have been trying to find a support group in our area. Just so we can speak to someone who understands and cares, to help let off some of this pressure!

 

Be assured you and your family are in our throughts at this time.

 

Andy

Greenman

Middlesex.

[MichelleW]

I've just gone though a very large bag of chocolate eclairs! Sometimes it does get too much - sometimes I find myself close to tears driving into work after a battle to get J into school. It must be showing, because even my manager (male as well!) said to me today that I need to take some time for myself, and was asking me if my mum could help out (I did take yesterday off sick - more from exhaustion than anything!)

 

Sometimes I feel I can't do anything "normal" anymore! Try to get some time to yourself - I've booked my mum to babysit this saturday so I can go out - first time in over 5 months! What you need is a bit of fun which is what i plan to do at the weekend!

[Greenman]

I've just gone though a very large bag of chocolate eclairs! Sometimes it does get too much - sometimes I find myself close to tears driving into work after a battle to get J into school. It must be showing, because even my manager (male as well!) said to me today that I need to take some time for myself, and was asking me if my mum could help out (I did take yesterday off sick - more from exhaustion than anything!)

 

Sometimes I feel I can't do anything "normal" anymore! Try to get some time to yourself - I've booked my mum to babysit this saturday so I can go out - first time in over 5 months! What you need is a bit of fun which is what i plan to do at the weekend!

 

 

I think we all should meet up in London and all get blind drunk! God! That would't half let off some off the pressure! lol

 

Joking apart we all need some down time away from the kids for a few hours. What I'd give to be in a pub somewhere tonight!

 

Andy

Greenman

[peppa]

Ah hev, you don't deserve all this struggling, when you do your best for your children its desbicable that you have to fight all the way for everything. You have done everything you can for steve, its the proffs and services that need a kick up the behind.

Were finding already were having to chase everybody to get anything done, and thats only a couple of months after diagnosis, its frustrating me so i can only imagine how frustrated you must be feeling.

 

Maybe all us members on here should join forces and storm parliment! Try and get something posotive done.

 

I hope your feeling bit better now, i know how hard it is to grab a minite to yourself but its only doing that that keeps me sane, i never knew just sitting for five minites with a cup of tea would become such a luxury.

 

If i could send you a box of chocs and a bottle of wine to cheer you up i would, hope a cyber one will compensate take care hope things looking up in the morning x

[Flora]

hev you've had a rotten time of it, you all have <'> Hardly surprising you feel so down. It's hard enough dealing with the day to day trials but to be at the mercy of a LEA that is slow to act by any standards is a big problem for you. I so hope this school can help Steve. Don't worry about the travelling etc.... if he's getting the right support in the right environment the travelling will feel like chicken feed compared to what he's dealing with (and what you are all dealing with) at the moment.

 

Once Steve's school placement is sorted out and you've got him settled you need to give yourself a proper break from everything.

 

You're a strong woman hev, even though you don't feel it sometimes believe me you are.

 

Meanwhile, try to get early nights and look after your health, if you feel strong physically then you can cope better mentally.

 

Love Flora <'>

[Bagpuss]

Hev, you have been through so much......no wonder you are feeling as you do. Try to take good care of yourself, am thinking of you, and hope it all goes ok for you tomorrow hun x <'> <'> <'>

[zaman]

Maybe all us members on here should join forces and storm parliment! Try and get something posotive done.

 

Do you know what, I think that is exactly what is needed! Because so many of us here tend to suffer in silence (more or less), and be fairly isolated from each other, we tend to get most of our support from virtual friendships such as these, bourne out of necessity. But when you see the occassional warrior parents tackling the politicans, I think - way to go - but then reach for the biscuit tin. My life, like so many others on here, feels like one round of struggle after another, for the most basic things like a decent education for our kids. And then dealing with and trying to understand the autistic behaviour, let alone the NT kids, the husband, etc, I feel like I'm wrung out most of the time.

 

So Bastille day is our meet up in London - anyone for building the barricades then , or shall we just have a beer this time around?

[Greenman]

So Bastille day is our meet up in London - anyone for building the barricades then , or shall we just have a beer this time around?

 

I'm in is it your round Zaman?

 

 

Andy

Greenman

[peppa]

Do you know what, I think that is exactly what is needed! Because so many of us here tend to suffer in silence (more or less), and be fairly isolated from each other, we tend to get most of our support from virtual friendships such as these, bourne out of necessity. But when you see the occassional warrior parents tackling the politicans, I think - way to go - but then reach for the biscuit tin. My life, like so many others on here, feels like one round of struggle after another, for the most basic things like a decent education for our kids. And then dealing with and trying to understand the autistic behaviour, let alone the NT kids, the husband, etc, I feel like I'm wrung out most of the time.

 

So Bastille day is our meet up in London - anyone for building the barricades then , or shall we just have a beer this time around?

 

OO Im up for it Bastille Day is my birthday!

[Kathryn]

<'> <'> <'> <'> <'> <'> for everyone who's feeling ground down at the moment.

 

Look forward to seeing you all on Bastille day - bring back the guillotine, I say.

 

K x

[curra]

Hev <'> <'> <'>

I'm on the same boat , it was such a struggle to get a statement for M and move him to a new school, but he's still depressed, feeling miserable and suicidal while the school say he's "manipulative". It comes to the point where you don't know what else to do to get the right support for your child.

Have fun in London! Wish I could go but I had already booked a break in London for the 25th July and I can't afford going twice.

 

Curra

[Annea]

Big Hugs Hev,

 

It can be so very tough can't it....

 

All the people making decisions about our lives, about what is and isn't important to us, about how things affect us, and most of them not having a bloomin clue about living with the difficulties we face day in, day out.

 

I too am fighting for a statement, fighting for diagnosis for child 2, fighting for recognition that my daughter has been ignored for the past 12 yrs, fighting the school so that they are aware of her special needs... fighting to remian sane ( or should that be to refind my sanity)

 

Fighting, fighting fighting......

 

All I can say is that you are not alone, and at least we can come here and vent, and ask for and offer support....

 

and keep on fighting!

 

Anne

[pumpkinpie]

But your family and people do care, look at your Mum posting cos she wants to help! We are always here Hev.

 

Today I had a really stressful meeting with the lea about littel p.

My anwser afterwards to go to a nice cafe (at the garden centre- must be getting old) eat a big cappaccino. mousaka follwed by a guwy chc cake and icecream.

Ok so my diet is out of the window , Im waddling and the house looks like a bombs hit it - not even tidied up at all.

I dont care.

 

Sometimes we just need to say what the hell and eat cake

[hev]

But your family and people do care, look at your Mum posting cos she wants to help! We are always here Hev.

 

Today I had a really stressful meeting with the lea about littel p.

My anwser afterwards to go to a nice cafe (at the garden centre- must be getting old) eat a big cappaccino. mousaka follwed by a guwy chc cake and icecream.

Ok so my diet is out of the window , Im waddling and the house looks like a bombs hit it - not even tidied up at all.

I dont care.

 

Sometimes we just need to say what the hell and eat cake

feeling so much stronger today,i feel like ive got control back by telling the lea what i want and looking into things myself,im in a fighting mood,im better when im like this!!

[Clare63]

Hev, Good to hear your back in fighting mode, I too am better in this frame of mind. I am also so frustrated at all the fighting "we" have to do and just wish I could come up with an idea to get "our" plights truly recognised, it seems that only when things get really really bad does anyone actually do anything about it and here I mean SS, EA, medic's etc and then its just the promise of a meeting or assessment....all words and no action !

Clare x

[pearl]

You go girl, you tell them! <'>