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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

Longing....

20 replies

needmorecoffee · 12/10/2007 18:00

Do you ever get that tight feeling inside when you feel very low and wish with all your heart that your child wasn't disabled because the years of care just seem too much?

Got it now. Was watching 'normal' toddlers this morning. DD in her wheelchair. People on the bus looking at her and assuming because she is quadraplegic, drooling and making weird noises that she is 'retarded' too. Feeling hurt on her behalf and angry at their assumptions and just wishing to have a normal everyday boring day.

Had to get that out before I bursted.

OP posts:

wideload · 12/10/2007 18:14

Oh yes, I certainly do, about 6 months ago I went through a really horrid time of nightmares, where ds had died and I felt nothing, it scared me so badly because I love him so.
I look at some people with their 'normal' kids and I am amazed that they seem to care so little for their well being, emotional and physical, they leave them to rot on street corners and get knocked up at 13.

The worst is the future, my 13yr old girl said to me that she tried so hard at school so that she can earn as much as she can as an adult so her brother will always be looked after. My heart fell through the floor.

Pity Party Over now.

Original poster

needmorecoffee · 12/10/2007 18:50

I just wish I could shift this feeling. Its not like it helps!
Maybe it was reading the 2 page spread about the girl with CP in todays Mail. She is as physically impaired as dd and the mum was talking about the lifting, sleepless nights etc etc and I just felt like it was all too much. dd is 3 and a half and I'm exhausted. Then wishing people wouldn't stare at her. She doesn't notice now but she's bright and will notice later.
Guess I should take the prozac.

OP posts:

wideload · 12/10/2007 19:02

Try the bottle of wine instead. do you want to email.

missyhissey · 12/10/2007 19:04

Sorry to hear you're feeling like this. I read that article too and honestly don't know how she copes and stays sane. It left me feeling guilty at how much I moan and complain about trivial little things.

moondog · 12/10/2007 19:28

Hi Needmore

I know things are so tough for you.

Are you getting any respite care?

I have talked about Inclusive Technolgy with you before. Do you know that they do free seminars which are fab? Can link for you if you like.

dustystar · 12/10/2007 19:31

Its a different situation for me as ds not physically disabled but at the moment I really have had enough of the daily battles. I know its not his fault and it makes him unhappy too but it does feel like a long road.

So sorry you are feeling like this{{{hugs}}}

magsi · 12/10/2007 19:49

Hello Needmorecoffee

I think as a parent of a sn child you do have times of mourning for the 'normal' child you wished you had had and then feeling guilt for wishing their beautiful child was something different. I walk through Ds1's mainstream playground with him every morning and feel really 'exposed' and almost like we don't belong there, seeing some of the other mothers and their pittiful looks towards us.

You will never stop these feelings from creeping to the surface every now and again because you are human. I take comfort from writing on these boards and getting things off my chest and, more importantly, knowing that I am not alone in feeling like this.

Try to gather your strength from the fact that you are not the only parent having these feelings. Only you know how beautiful your DD is and what a special person she is inside. Be strong

Original poster

needmorecoffee · 12/10/2007 19:52

Thats my fear Missy. After 15 years I wont cope and stay sane. I'm barely coping now. And in 12 years that will be me. Thats my future and it ain't pretty.
We are getting 6 hours respite a week now thank goodness but its never enough. On non-respite days we care for dd 18 hours a day. We can never eat together as one must hold her while the other eats. She needs turning at night so I'm up at night.
sigh. I'm just moaning. I love dd more than anything but it feels like there's nothing to ever look forward too, you know.
Moondog, remind me what Inclusive technology is?
We're taking dd to Brainwave in January but even that freaks me out. Right now I don't want to do 'special' things or therapy or keep seeing stupid doctors or have EEG's every 8 weeks or anything SN at all! I just want normal but its the one thing I can't have.
I'm sure I'll be ok once this PMS is over but thanks for letting me moan on (and on and on and on)

OP posts:

Original poster

needmorecoffee · 12/10/2007 19:53

Thanks Magsi. Its just good to get it out. If I moan to 'norm' friends I'm told I'm being negative and if I just 'changed my attitude' everything would be rosy.
Fucking wouldn't, scuse my language.

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wideload · 12/10/2007 20:26

No it wouldn't be fucking normal, how very dare they ... sorry my pet hate is people who don't live in my shoes telling me how to feel.

Can I say 2/3 things which are quite contraversial.

Things will seem easier when your dd is at school, 6 hours a day aren't long but your brain needs space.
Did you now that you can get PND up to 3 years after the birth of your child. I think that when I get down it is a cross between PND/Post Traumatic Stress, because lets face it is and PMS
shit I forgot what 3 was, and I had it in my brian a min ago.

Original poster

needmorecoffee · 12/10/2007 20:39

I feel guilty about looking forward to school cos my others are home educated. But I am.
I've been trying to get counselling since dd was born but there's a waiting list. Got given prozac a few weeks back but haven't taken it yet.

OP posts:

wideload · 12/10/2007 20:47

how old are your others, and do they have acess to young carers, and before you say they aren't young carers can you honestly say they have never done a thing out of the sibling remit for their darling sister (is it darling or dear? I never know)

lourobert · 12/10/2007 21:03

The future scares the shit of out of me if Im honest.

I love ds so much but would love to know what 'normal'is like just for a second. Im starting to feel it now that ds is two and very tall and heavy...im wondering just how long I will need ot carry him for......!!

missyhissey · 12/10/2007 22:03

NMC - I remember reading your posts before and feeling shocked at what you have to deal with in your everyday life. For what it's worth I take prozac and can honestly say that it has changed my life, not in a dramatic way but just enough to help me to be more positive, and cope with everyday things. It might be worth a try.

2shoescreepingthroughblood · 12/10/2007 22:20

omg reading this has brought back so many memories.
I found the years before dd went to school so hard. I mean how do you fill the day when your child can't do the simplist thing.
It does get easier when they go to school. you have that time and the support.
DD is 12 now and yes it is hard(we are lucky as she doesn't need turning) I can't even think of the adult years. But it is better, we have respite(very hard to get when dc's are small)
I still get so angry by the attitudes of the so called normal people. to the extent wher I don't speak to quite a few people in my street. but you learn to glare at them.

I wish you lived near me. I never did counselling as I had a freind in the same boat so we counselled each other.

can you get more respite?
would a lying board help with night times.
and can I send you a cyber

moondog · 13/10/2007 00:21

Inclusive Technolgy

E mail me if you need guidance through this.
My professional life (as an s/lt) is spent dealing with children with similar needs.
I am willing to help

[email protected]

There is so much out there to help you.Just a question of finding your way through the maze.

Original poster

needmorecoffee · 13/10/2007 12:00

Part of it is the bundle of crap that coems with your child. Who hasn't spent countless hours on the phone to various people trying to get what your child is entitled too and come up with petty wankers who can't make any decision?
We were promised an extra respite session back in July. I'm am so tired of phoning bastard social services about it. Its exhausting. It shouldn't have to be part of my life which is crap enough as it is.
Then a wellmeaning friend suggested applying to charities for equipmen.t More phone calls and forms and time which I don't have.

OP posts:

moondog · 13/10/2007 12:48

A useful tip is to write instead of ring and to cc all their superiors. Add the name of your MP and a powerful solicitor to the cc list (even if yuo don't send them.)

Also send the odd thing by registered post.
Scares the crap out of them.

These measures guarantee that yuo will be taken more seriously.

moondog · 13/10/2007 12:49

Remember also that Freedom of Information act lets you have access to nearly anything.
Google for guidelines.
So sorry you are being drained like this.It is a fight, no doubt about it.

AeFondKiss · 14/10/2007 21:03

needmore, I am glad you can say how you feel, it sounds so hard what you are dealing with.

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