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SN children

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

Original poster

really need some one to listen

28 replies

anniebear · 03/12/2007 11:26

sorry

am so fed up today, cant talk to any friends as they dont really understand do they?

Have had an awful weekend, just not coping really

Feel like dd just chips away at me slowly till I feel at breaking point

Ended up walking out yesterday and sobbing at my Mums

Text my friend this morning to see how her weekend has been

she replys with a big moany text. Her little one (NT)has been full of cold, she hasnt had much sleep all weekend, been to the docs but just viral etc etc

Then "How are you"

what on earth can I reply "Hiya, awful weekend here also, fed up of DD hurting herself and screaming so loudly at me, fed up at 6yrs lack of sleep, fed up of just being unhappy, want a 'normal' family like yours"

How bad would I make my poor friend feel. So I cant even answer her question

I 100% understand that its not nice when your little one is full of cold and you dont get much sleep for the weekend. I really do

Sorry, no point to this really, just needed to let some of it out

My friend is really lovely !!!

sorry!

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Original poster
anniebear · 03/12/2007 11:31

sorry (again)

sounds a bit pathetic reasding it back

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dustystar · 03/12/2007 11:31

Sorry you're having such a tough time anniebear I often feel the same about being able to talk to my friends - they'd want to help I'm sure but don't really understand. Thank God for MN and the chance to rant.

dustystar · 03/12/2007 11:34

Don't say sorry. We all feel like that sometimes. I had a horrible weekend with ds last week and felt really fed up and tearful afterward. I think its just that I get worn down when dealing with it all day every day.
{{{hugs}}}

Original poster
anniebear · 03/12/2007 11:37

thanks for listening

some one said to me the other day that having kids knocks you sideways

I feel like like mine have knocked me flat and I havent yet got back up!!

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Dinosaur · 03/12/2007 11:38

anniebear, you don't sound pathetic at all!

It's good to come on mumsnet and let it all out though, isn't it ? It's a lifeline for me, I know.

aquariusmum · 03/12/2007 12:13

anniebear, I know exactly what you mean about friends with "normal" problems and you want to sympathise with them, but part of your brain (or part of mine) is thinking "you actually don't know you're born, thinking this row with boyfriend/tricky memo you've received at work/row with mother etc is really a problem". I think the worst is one friend of mine who believes that with positive thinking or "affirmations" you can ask the universe for anything, even a cure for autism, and it will come. You feel like screaming, but then you come on mumsnet and meet mums who actually understand exactly what you are going thru! Big hugs to you!

Original poster
anniebear · 03/12/2007 13:02

do you know what I miss...the SN toy library I went to

we went there when the girls were 1, just after Ellie was ill, till they were 4 and started school

Loved it, got to meet and chat with other Mums who had Children with SN

Now I dont really know anyone else as you dont get to meet them at SN school, then at Mainstream you feel the only one

Im not of course, but Ellies probs seem to be more severe than the other children who have got SN.

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Original poster
anniebear · 03/12/2007 13:15

doesnt seem to be anywhere for people with school age children

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dustystar · 03/12/2007 13:21

Are there no support groups near you anniebear?

deeeja · 03/12/2007 13:24

Hi, Anniebear. I feel like this alot of the time. Feel really sorry for you.
But I think your friend has got it easier than you.
In our house all the kids have bunged up colds, including the baby, and asd ds, and me who has to look after them all. On top of all that I have to fill in the dla form by tomorrow.
Feel really miserable. I don't know how I am supposed to get better if I never sleep, have to continually breastfeed baby and asd ds can't cope with illness, it sends him doolally. DH is being next to useless. And now older ds's school is hinting that he has social-communication problems and may need assessing for ad.
Feel really down today too.
HUGS to you hun!

deeeja · 03/12/2007 13:27

Compared with me you don't sound moany atall!
ANd I have it easier than alot of mums on here.

yurt1 · 03/12/2007 13:31

I know exactly what you mean. And that feeling of not being able to tell people about your reality is very isolating. You really really need people who you can talk about your reality to. Online can help, but I'd really try and seek out a special SN friend as well I once hosted a coffee morning at home for parents of kids with ASD, put a little piece in my local paper and was inundated- you could try something like that- having one or even 2 friends who get it because they live it it makes a huge difference.

Peachy · 03/12/2007 13:34

Anniew [hugs]- I would send that text, why not? She's your friend and if you don't let her know how you feel she cn't be expected to know can she?

Have you noticed how many mini-breakdowns the Sn crowd are having atm? (I freely admit to the forst one), do you think Chrsitmas is the cause? Its just that bit extra pressure isn't it, when you need it most because much as the NT kids for those of us who have them need to celebrate, we still feel grief for the ones who cant or never will understand .

Are there any SN clubs runby any leisure people that DD could go to? DS1 goes to SN rugby on a Saturday and I ahven't been for a few weeks for varying reasons, and I miss it a lot as its my time to chat to other people in the same position. It keeps me sane.

Make yourself a large cup of tea, raid any chocolate you might have ready for chrsitmas (if its expensive and already wrapped for someone else you get extra points ) and have a bit of you time. We DO have a lot on our plate, and poeple don't always get it. It isn't their fault of course- but its going to mean we feel really low sometimes nonetheless.

Original poster
anniebear · 03/12/2007 14:02

I do have a good friend whos child has SN

Not the same as Ellie or as severe as Ellie, but does have the same worries as me!! ...but havent heard from her much lately

cant win....she is lovely but before I ahve even got a sentence out about Ellie, she starts saying all about her child

Of course I dont mind listening to her also! But I would like to get my sentence out!!!! lol

I ahvent heard of anything for parents, no support groups

Ellies SN school did have a parents group that met every now and again, but not many went

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Original poster
anniebear · 03/12/2007 14:05

and my other friend is so lovely, but she doesnt understand, she tries to! But its not her fault

I couldnt tell her how Im feeling as she would end up feeling crap that she had moaned about 2 sleepness nights (wish she woudl learn to kick her DH out of the bed to go and see to her DD!!!) and DD having a cold

she would feel bad and I would feel bad

Thanks Peachy....but have no chocolate in the house!!!!!! am dieting lol lol

If I did, I would choose a huge bar of galaxy mmmmmmmmmmmmmmm

thanks everyone

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dustystar · 03/12/2007 14:06

Whereabputs are you annie? I am in poole and we have a group here.

Peachy · 03/12/2007 14:07

Telephone SS and ask about clubs and activities, ours keeps a register but are shit at letting you know whats going on.

Worth e-mailing the various national groups as well as they often know what's going on locally- the NAS have a group near me and I only know because of the NAS website, teh SW doesn't have a clue.

Original poster
anniebear · 03/12/2007 14:13

Im on the wirral, merseyside

Im sure there is a support group for parents with children with Autism

But Ellie hasnt really got a diagnosis, suffered brain damges after having Meningitis

has hydrocephalus and is behind with everything

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dustystar · 03/12/2007 14:19

From previous posts though it sounds as if you have to deal with some similar problems to those of us who have a child on the autisitc spectrum. Our group is aimed at those whose children have ADHD or any autistic spectrum disorder but I'm sure we would welcome anyone who needed support.

Why not contact the leader of the group and explain your situation. Even if that group is not suitable they may well be able to point you in the right direction

yurt1 · 03/12/2007 14:21

Is there anything run through the SN school. DS1's problems are more similar to children with general LD's - eg from meningitis damage- than say children with AS, & I've found the school support group helpful.

Peachy · 03/12/2007 14:23

Annie- I was wondering more if someone like MInd ran something (sorry for confusing you by stating NAS- default for us- was meant as an example)

Mind used to tun a few back home once upon a time

Original poster
anniebear · 03/12/2007 14:47

No , no worries about NAS, I knew what you meant

I am sure there is something to do with brain injuries, I cant think of the name of it. Some kind of organisation (going to annoy me now!!) Head? somehting?!

its so hard as I was going to contact them once, but kind of worried a bit that a lot of the children may have severe damage, whereas with Ellie, if she ran into a room, you wouldnt know she had any problems

Then I feel embarrassed mentioning my worries when other people have more difficulty than us

I also struggle with the fact that Ellie is a twin. Is great in one way as she has been brought on so much by her twin sister, but then I have a (lovely!) constant daily reminder of the things that Ellie should be doing

sorry, going in another direction now lol

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Original poster
anniebear · 03/12/2007 14:49

could be these I meant

www.headway.org.uk/

not sure

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AttilaTheMeerkat · 03/12/2007 14:49

Think you mean Headway

Original poster
anniebear · 03/12/2007 14:55

Great minds eh...!!!

thanks

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