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Original poster

If you are a parent/carer for a SN child or children?

82 replies

YouaretooniceNOT · 13/04/2011 22:26

How many hours/days/nights respite do you have?

My son has 2 alternate Saturday mencap 19am to 3.30pm

4 weekdays respite care - every school holiday - 9am to 4pm

10 hours per month direct payments - £171.00

I need more - i would like a weekend to myself every 3 months - i am going to ask the SW tomorrow
Any tips what i can say to her?

I m a lone parent with NO support network or other family.

I have one son whom is blind, severly autistic, no speech, doubly incontinent and dependent for all cares.

Thanks x

OP posts:
colditz · 13/04/2011 22:31

I don't get respite but my children sleep at their father's one night a week, and my son doesn't require the same level of backbreaking care that yours does. i don't feel I need it - ds1 is very routiny and it would actually make life harder for me to settle him back in.

I would suggest ringing her every day and asking her when she is going to sort out some respite. The squeaky wheel gets the grease.

Triggles · 13/04/2011 22:34

None. At all. But to be fair, we haven't asked for any either. At this point, I would have to be clinging to my sanity by a thread before I would be comfortable turning over my DS2 to someone else out of school hours. And even then, I'm not sure I could do it. It was hard enough to let him be at school (he's a runner and has gotten out of the school once as it is) without a panic. But then, my DS2 has different difficulties than yours, so obviously our situation is different.

I'm curious though. Those of you that do get respite - do you get freaked out by having them somewhere else instead of home with you? I get edgy just at the thought of it. Perhaps it's because of the "no concept of danger" stuff and all, I worry that whoever was with him might not be a vigilant and he'll get out and get lost or hurt. Hell, I'm terrified WE might drop the ball (and we are super careful about stuff - probably to a OTT level!), much less someone else!

lisad123isasnuttyasaboxoffrogs · 14/04/2011 08:40

None with two Autistic girls here.

Bonkerz · 14/04/2011 08:47

We get 20 hours per term which roughly translates to 5 hours every fortnight for 8 weeks per term, this costs SS £50 and then in holidays we have to fight to get 20 hours worth of respite which would normall be 2 days of 5hour sessions over 2 weeks. costing SS £68.00

We did used to get an extra 10 hours a week with a childminder for the other 4 weeks of the holidays but SS withdrew this support.

Easter holidays start for me tomorrow and apart from 3 days i have organised to be with friends and family my 3 children (one with autism the other two have no issues apart form being girls and having normal attitude) we will be stuck indoors and going no where as i am too scared to take DS out for fear he will have a meltdown and need restraining (I am 36 weeks pregnant so would not be able to do this!)

purplerabbitofinle · 14/04/2011 08:53

Most people I know would say you've already got an awful lot!

MarioandLuigi · 14/04/2011 09:25

Does the 15 hours he is at pre-school count?

Marne · 14/04/2011 09:33

I have 2 dd's with sn's (one has AS and slight mobility issues, the other has Autism and severe language delay), we don't get any respite, i have tried but told i am coping well without it Hmm. Its getting harder to get respite (due to cuts) so if you can get any then your lucky (it shouldn't be like that). Sad

Original poster
YouaretooniceNOT · 14/04/2011 09:38

I have nobody, i do not go out after 4pm ever....My son is lucky that the places he goes to is safe, relaxing and caring.

I had nothing until he was 6 years old.

I am not married, no friends, no boyfriend, because i cant get out to meet people. I have tried support groups but find their children have driven the mums a bit errrr so it gets me down.

OP posts:
Marne · 14/04/2011 09:44

So sorry things are so tough, all i can suggest is talking to the SW and tell her/him 'you can not cope and need more respite' (you need to make sure they can see you are not coping), i hope they can suggest something or provide more respite but as you know from what others have posted 'its bloody hard to get respite'. Maybe they could find a club/group he could go to for a few hours at the weekend to give you a break.

Triggles · 14/04/2011 10:14

Is there anyone that could even come over and have a coffee and a chat with you at your home? For me, sometimes it is just the whole "be an adult and have a natter over coffee" that makes the difference between coping and completely stressed. It doesn't necessarily get me "out of the house" physically, but mentally it brings a bit of the world in to me, so there is outside contact. As a start anyway....

To be honest, we don't really go out after 4 or so either. As our two little ones go to bed at roughly 6pm, if we invite someone over to socialise (which admittedly doesn't happen often!), it's either in the morning (friend over for coffee) while DS3 is napping, so only DS2 to contend with or in the evening around 6:30 for a meal and drinks after the boys are asleep. We rarely go over to someone else's house for a meal or to socialise (other than MILs house). In looking back, I can only think of one occasion in the last 2 years that we've eaten a meal at someone else's house other than MIL or DD's house (and even that is rare - DS2 does much better sticking to a schedule - which means generally eating at home).

Lately, I've really made an effort to get out when I can. I've met a couple friends for coffee in town while DS2 was in school. I'm making more of an effort to go out with both boys on my own (stressful and difficult but I am forcing myself to get more comfortable with it).

Obviously, you know best what you need, but I'm wondering if perhaps you might need to get out and meet people to get more of a support network in place. Isn't there ANYONE that you know in passing that you'd like to be friends with and meet up with occasionally? I've found I can cope so much better when I know I have things to look forward to - such as meeting up with a friend, even if it's just for an hour. I find it helps put things in perspective for me. Otherwise I allow myself to get bogged down in tiny details and things that are not that horribly important in the scope of things. Maybe you can use the time he is at preschool to get out and meet someone. It's out of the comfort zone, I'll admit, but I've met some good friends by taking a chance that way. And not to be critical, as obviously your child has exhaustive needs, but you do get some respite (more than many others get) and with the cutbacks, you might find getting an entire weekend off a difficult fight.

asdx2 · 14/04/2011 10:40

No respite here a ds and a dd with moderate autism. Our SS don't consider autism a qualifying disability for respite. Sometimes sleep when they are at school because ds in particular doesn't sleep and I can't manage both of them out of the house by myself which means that during school holidays I am housebound whilst dh is at work.
I suspect I might be like the parents you describe at support groups but 16 years of no sleep and endless battles have taken their toll although I don't attend support groups as during the day when they are at school the last thing I want to talk about is autism and when they are home I need to be at home with them.

Original poster
YouaretooniceNOT · 14/04/2011 10:52

I can understand - wish i could type 'we' instead of I

I'm just so lonley - i might have no alternative but to give up

OP posts:
Marne · 14/04/2011 10:59

What area are you in Youaretoonice? thinking maybe one of us can help, or maybe there is a charity that can help in your area.

vjg13 · 14/04/2011 13:22

If your direct payments hasn't been reviewed for a while you may be able to get that increased especially if your child's needs has changed.

My experience in the current climate is that funding for support is being cut dramatically in this area.

Triggles · 14/04/2011 14:26

Okay. I'm sorry. I'm probably going to be blasted for this, but I did a bit of looking around. And I found this - OP starting a thread stating that she wanted to have another baby, asking if at age 37 she should get a sperm donor. And this post only yesterday by OP:

"I am already a single parent. I have never had a support network and i have coped brilliantly. i'm just naturally strong that way."

This is seriously conflicting information posted on same day. Perhaps I'm missing something here, but I think I'll be hiding this thread, as I don't feel the OP is being horribly straightforward. I have no problem offering advice and assistance to those who need it. But this seems a bit odd. Sorry.

Original poster
YouaretooniceNOT · 14/04/2011 16:09

what?

"I am already a single parent. I have never had a support network and i have coped brilliantly. i'm just naturally strong that way."

is true ..yes...

hide it then won't stop me asking for more help or having another baby

OP posts:
Original poster
YouaretooniceNOT · 14/04/2011 16:10

from what i have written in my post, tells you my whol;e life story does it?

no it doesn't, how ignorant of you...

OP posts:
Original poster
YouaretooniceNOT · 14/04/2011 16:16

i am lonley after 12 years of hardly any help i recieve drips of help when my son was 6 years old.

no wi owul like to attend college fullt ime and get a part time job so i can support us and a new baby.

triggles - that is very spiteful and i am really proud of myself for being totally alone and looking after my son

i never needed help until i had meningitus and was ina coma for 4 days, then ss becmae involved

ask me anything you want o ask

but do not accuse me of being a liar

OP posts:
Original poster
YouaretooniceNOT · 14/04/2011 16:17

i have been nothing but hionest about my life on these forums

what is wriong with that?

sn forum full of spitefullness?

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Original poster
YouaretooniceNOT · 14/04/2011 16:19

maybe i make you feel inferior then

i will not come back to this thread

OP posts:
purplerabbitofinle · 14/04/2011 17:05

YATNN

Please choose one thing or another to whinge about. You cannot reasonably expect to want a new baby without support when you are, at the same time, whining about how hard you are finding your life with your son.

Moaning about both would make you a two-faced hypocrite, and if you can't cope with the child you have, yet still have another, you will become a burden to the state and there will be no sympathy for you. You are also bringing a child into the world who is knowing s/he will have to become a Young Carer for their older sibling, with all the added stresses that entails.

You already get two Saturdays per month, school five days per week and holidays four days per week.

My best advice? Suck it up. Life's a bitch.

Mamazonhereggsclucking · 14/04/2011 17:09

it pains me to say this to a fellow parent of a child with SN (allegedly)
but you are full of shit and in the 5 minutes you have been here done nothing but stir up trouble and bad feeling.

do fuck off.

PeachyAndTheArghoNauts · 14/04/2011 17:11

Nothing here, been assessed as deserving and qualifying but too complex to fit structure

have ds1 (AS, very aggressive)

ds2- dyspraxia

ds3- autism, sevre by SSD scales

ds4 just referred for asd assessment

DH is here but nobody else and he has health issues himself, we're in Wales, they are in england and don't drive (we do but petrol + bridge = +++). Do pay for a Sunday every six weeks or so but can't afford for much longer.

Am exhausted but is way it is.

NorthernSky · 14/04/2011 17:19

This reply has been deleted

Message deleted

Original poster
YouaretooniceNOT · 14/04/2011 17:28

I really do not see how i have upset people. I believe ins elfg improvment. i am ready to go to college. i am having therapy, i will go to university and then i will have a child if i can. when i ahppier and self supporting

To the poster whom told me to fuck off - nice!!

gleaning bit of info froma few threads and then making harsh judgements is not very clever.

i am not ready for ababy yet, i didnt write that on my thread, i wanted opinions about sperm donoring.

that is all

so i am not whinging i am just lonley whislt i get going to a better future for my son and me

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