Why do us SN Mums & Dads have to sort EVERYTHING out?

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well rang the school today to tell them we are moving and ask for adivice on what to do next. The headmistress has left a message on my answerphone saying I have got to sort it out myself. I will have to ring around and find out where is suitable, if they have places, if her statement makes her elidgable for places etc. etc. etc.

Why, why, why, why??????Is it up to me ???

I just feel like making out I am some kind of thicko and they will have to sort it out for me. I hate having to do this all the time Why does everything have to be so complicated when you have an sn child?

Thanks Doormat. It isn't like he hasn't had a general before, but you still worry don't you? He should be out the same day if everything goes to plan.

It's even more worrying when something like that happens to a family member lou, but you are right they are alot better at eye surgery nowadays.

Sorry I was lurking. Ive just rang one of those numbers you put and have got the ball rolling. They were actually very helpful, even telling me of PD units in the area we are moving to. Hopefully it wont be as stressful as I though it would be. Well you can always live in hope!

Ooh well that sounds like good news. Hopefully you won't have to sort out too much yourself after all. I should go and do stuff really, but seem to be glued to the chair. Did the dentist with 2 kids this morning and have parents consultation x2 this afternoon, oh joy. Need to put the toys back into the boys room too, after sanding the floor, but it looks lovely all empty and clean, I can't bring myself to, lol.

Do any of you find that having a child with SN totally consumes your life. You worry all the time about their health,catching virus' and germs, going out for an evening.
But a smile and a hug makes it all worthwhile

so true doormat

My dh thinks Im a bore, talking and worrying about dd all the time!

Definitely. In fact I find it hard at times not to see him through his disability, and just see him as one of my children. Especially with all the new equipment he is getting atm. It just adds another reminder of it all.

Just had Portage on the phone, they want to start him on 4th December.

Does anyone else ever feel that people you know don't quite believe the problems your sn child has? Like they make you feel as though you are exaggerating, or that he/she are just "biding their time"? I hardly talk to anyone now about ds because of this, including family.

Certainly lou. Or you get "well all children do that." Except they don't. I've given up trying to get my in-laws to understand.

I'll be thinking about your ds next week lou.

Nice one Lou with the portage, ours was lovely, hope you get an even nicer portage teacher

Yes but how can we exaggerate their problems especially when they are compounded and affect every way of life IYKWIM (I think you all do)

The wheelchair was the killer for me, I cried like a baby when I seen it, even though I was told he would never walk.
It just stared me in the face as it was reality.

Lou & Jimjams: I also think it's because people can't bear to take on the full implications and don't know how to deal with it, or are misguidedly trying to cheer you up by being 're-assuring'.

In answer to the question? Cos we're all saints, innit!

me too dinosaur I hate all this, theres nothing wrong, you havent got much to worry about business

Ikwym Dinosaur. I find that the only people I discuss ds with now, are mumsnetters, the professionals involved with him, and my best mate, who loves him as much as I do, and has seen him struggling to achieve things with her own eyes (plus she believes everything I say, lol). Other friends,relatives etc, I don't even bother to try anymore.

It's a necessity dinosaur! I'm always banging on about needing friend's in the same position as you.

Same here, lou. I'm constantly hearing "she'll get there in her own time" - well, she might not! Trouble is, I find myself playing it down too, for some reason, don't want to make a fuss etc and so in the end no one thinks there's much to worry about. Much easier to talk to health professionals and others in the same boat.

Will be thinking of you next Wed for the op, lou.

Maybe we should all move to the same village, so we have a huge support network. What would we call it?

Thanks everyone for the good vibes about ds's op next week. I'll update you on it when it's all done and dusted probably.

LOL Dinosaur!

Lou: oooh, thinking of you for next Wed. Which hospital? No, don't think you ever get blase about the worry. DS had 4 ops in 5 weeks last year, and we cried every single time as soon as we left him unconscious. Very hard on you (tho' they seem to sail through it).

Royal Surrey County Hospital Blu. I like the place and have faith in the staff, so that helps (unlike the last place he had a general).

Lou: OMG! (last place). I nearly picked DS up and ran cos I had an argument with the aneasthetist who was preparing to put in an IV canula before knocking him out with gas first. I could see him mentally totting up the cost of the fully staffed operating theatre the other side of the doors before agreeing to fetch another aneasthetist so that he could do the gas first. Hope your DS gets looked after as a day patient and doesn't have to stay in.

Blu was this at the Royal Surrey?

They say it's a day case, but it all depends on how he recovers I spose. He was ok with his last one though. It would cause him a lot of stress having to stay in, he isn't good with strangers/strange places.

No, Lou, it was King's. Sorry, I probably freaked you out there, I meant OMG how horrible your experience must have been in the last place, if you weren't happy with the staff etc! King's were good, on the whole. I'm sure the Royal Surrey are excellent. Has your DS stayed in before? They will let you stay in with him, won't they, if he has to stay in? Anyway, sounds unlikely, and we'll keep our fingers crossed.

Phew! I must admit to being a bit worried, but thought you wouldn't have been quite so honest at the same time, lol. Ds hasn't stayed in before, but they would let me. Trouble is he finds it hard to settle anywhere but home, he gets really quite distraught, especially if they try and make him spend the night in a cot where he wouldn't be able to reach out and touch me. I doubt he will stay in anyway, so I shouldn't worry about what hasn't happened should I?

Just another thank you lou. I received a letter off the pre school sen co-ordinator (in Kent) on friday who wanted to chat about dd options. I rang her this morning and they have already put her name down for the sn playgroup for 2 sessions and are looking for a mainstream placement for her for the other 3 sessions (with support worker, hopefully) They are very organised. They have already got copies of her records off the Staffs office and as soon as I have a move address dd will be discussed in the first panel meeting after. Phew! Just seems to be going a bit too smoothly!!

Just got to find a house to move to now!