Talk to me about respite, how does it work? Who is eligible?

[MegaLegs]

I feel bad writing this but I'm sure it'll help me feel better.

I have four boys 8,6,4 and 2. Lovely, all of them but hard work and that's without adding the fact that DS4 is becoming much more demanding.

He has GDD, not walking but cruising for England and tall enough to reach top of units, turn taps on, kitchen table etc, a whole new world has appeared to him and I can't keep up, having to re baby proof but on a higher level!!

He spends his day undoing every thing I have done, travels in my wake emptying bookcases, washing baskets, unmaking beds.

His speech is delayed he has a few words and a few Makaton signs, I use Makaton with him but his basic means of communication is to say"mamamamamamamamamamama" in a whiney voice and point at me over and over and over all day long.

I get cuddles and kisses, I also get head butted , punched in the face and bitten quite regularly.

It's hard, the other three are suffering, I have been cow bitch mother from hell to them all this afternoon. DH is great does lots but I am starting to crack.

Oh, and did I mention that this all kicks off just after 5am most days.

How do you MNetters, in similar situations cope?>

[needmorecoffee]

If you want respite first get in more wine then call the child disability section of social services and ask for a socila worker and a carers assessment and tell them you want respite. You need time for yourself and time with your other kids.
Hopefully one will come at eventually and do an assessment.
You have to be a nuisance to get anything and ask them about Direct Payments tp pay for this (unless you want them to do it all)
I get 6 hours a week for dd (promised 12 but ho hum) and had to go through hideous Core Assessments then fight for it constantly. There's no absolute right to respite help but you have to keeppushing and walk that fine line between 'I can't cope and need help' and them taking your kids away cos you can't cope and need help!
My DH evetually gave up work cos I couldn't cope and the respite was so erratic.
Some places offer in-home respite, others have workers who take your child out or pay for a childminder. It varies.
Good luck.

[mamadadawahwah]

thanks for that.

[MegaLegs]

Thanks nmc - sounds like hard work but I will give it a try.

[Boco]

Have you thought about trying homestart? They have volunteers who can come and help out depending on what you really need. I had one who came when my dp was ill and i was caring for him plus babies, she was supposed to be helping me to get to shops, but that didn't quite work out, and sometimes i'd just go for a walk on my own which gave me much more patience when i came home. Once i went to bed and cried and she played with them in the garden. Was quite nice actually. I have a friend with 4 boys, her homestart person comes at teatime / bathtime bedtime twice a week and helps so she can do homework and stories with the older two.

The other thing that was helpful to me was to get a carers assessment from social services. There's help and funding available then for respite - they funded me some driving lessons.

Sounds tough, you should ask for some help.

[staryeyed]

Sorry to intrude your thread but I spoke to Social services the other day as my health visitor had put in an application for a funded nursery place for 1 day a week. When I asked about assessments she said If I get the nursery place, then that would be my respite- does that sound right?

[magic5]

to qaulify for respite,your child needs first of all to be disabled and then have severe learning disabilty.ie.statement.
I applied for this for my asd/adhd son with learning disabilties,language and communcation disorder and sleep disturbance.They came and assessed him and told me until he gets his statement he doesnt qualify.Your best bet is ask via hv for homestart referal.

[magic5]

I have five children altogether,my eldset son is also adhd and possibly also my youngest son,whilst my youngest daughter has been under the consultant since birth(she is six now) due to lack of growth and weight.So know how hard it is,plus im on my own and presently fighting for my sons statementing to go through.It never ends.

[needmorecoffee]

Magic, they don't need to be learning disabled. DD is very physically disabled but has normal intelligence. We still got respite.

[MegaLegs]

Boco and Magic5- I will investiaget homestart, sounds promising, it's the hours after school until DH gets home that are toughest. I wish my lovely HV would come back, she's been off having a hip op, new one is young and eager but not on the same wavelength.

Fiofio not seen Ed Psych, DS4 is due to start 2 mornings at local pre school after Xmas.

[magic5]

Another thought,you could also ask ur hv about collage students doing childcare courses.These students are always looking for pratical experiance and are available to help you out.Your hv should have a list.

[MABS]

Megalegs, you know where I am if you ever need a coffee and laugh hun x

[Pages]

Fio, have you looked into direct payments at all? Just wondered because I seem to remember you thought my DS1 was similar to your DD...

I have recently been looking into it, and was told that although DS1 has a statement that in itself is not enough, ad that only if DS1 was assessed as having severe learning disabilities that impacted sufficiently on our lives would he get funding. I don't know whether to bother with the assessment as the SW made it sound as if there have to be profound physical and/or learning difficulties.

Basically, DS1 is 5 and has GDD. He is fairly mobile but has no language and his self-care skills are non-existent. We use our DLA to pay for respite at weekends, we just pay a very reliable babysitter to take him swimming and to the library, park etc at weekends for a few hours. It is not that he has any behavioural problems or is even particularly demanding but he gets bored indoors as his learning and motor skills are not good enough to play with age appropriate toys or play unassisted with toys for periods as a child his age would normally do.

Does it sound to anyone as if he ought to qualify for DPs?

[Littlefish]

Are you anywhere near a SureStart children's Centre? Some of them may offer a childminder respite scheme. The one I'm aware of definitely offers respite to parents of children with additional needs. Sometimes the respite is for the child with additional needs, sometimes it's for the siblings, to give them some time while the parent attends groups with their child.

Worth investigating?

[needmorecoffee]

Pges, friend of mine gets DP for her son who is like yours. It pays for 5 hours of respite a week as tats what she was assessed as needing.

[onlyjoking9329]

pages you should get DPs. we get them for all three kids they all have autism and have a statement SW said that ds couldn't have them when he was at mainstream school
due to our difficult family circumstances we get 28 hours per month per child plus two day time respite care days per month

[Pages]

Thanks, will pursue it

[Davros]

Although DPs are great (we get 10hours a week), they are not always the answer. We now have one weekend respite per month when DS goes to an appropriate centre. DPs take quite a bit of admin and it usually means someone coming TO you rather than your DC going somwhere suitable. When DS was younger, that was fine, but now he is older it is much better for him to go somewhere that is all set up for his needs with good staff, premises and facilities. We wanted a break AT HOME, not having someone strange coming into our home and not for us to have to GO somewhere. Surprisingly we still get our DPs and you can use these to buy services rather than pay someone so I bank them up and get extra nights of respite. HTH

[PeachyFleshCrawlingWithBugs]

Hiya megalegs- gosh your LO sounds an awful lot like ds3 atm! Currently emptying washing absket all over kitchen floor for the umpteenth time today.... at least when baby comes i'll be guaranteed baby proof LOL (cable ties on the windows excellent when you cant fit window locks for landlord / condervation area reasons....)

I dont get respite (was offfered for ds1 but didnt want at that point), so canta dvise there, but if you need Homestarta dvice feel free to CAT or TTR me, as I used to be an organiser (sort of co-ordinator for a geographical area), for them (you know,,in those pre-disability days...remember them??), so can answer any questions you might have etc.


Lots of hugs X

[2shoescreepingthroughblood]

megalegs can you email me at [email protected] so I can tell you about ttr(and anyone else who is interested)

[Pages]

Thanks, but isn't it the case that if you get DPs you can get your own carer to take your DD/DS out? Why does it have ot be at home? DS already goes out, we pay one of the girls from his old nursery who knows him well, he gets taken swimming, to teh park, out for the day, etc and it is great - it's just atm we have to pay for it that's teh issue.

[ManxMum]

NeedMoreCoffee - do you have other dc's?

My son is a catagory 4+ and I am struggling to cope, eveb though he is at school.

My husband has gone abroad to university and keeps telling me to keep sane and 'it win't be long'

He is away for nine months in toal and I want him to come home and help before I lose my mind and do something silly

Am I being unreasonable?

[needmorecoffee]

I have 2 other kids at home Manx. DD1 ran away cos of her sister. I had to really push for a proper assessment of needs and really fight for respite.
I even made DH give up work cos I couldn't cope then had to fight to keep the bloody respite. Pointed out that dd2 is held 120 hours a week (she doesn't sleep much) and even at 60 hours each it was still way more than 2 full time jobs.
It really is being the squeeky wheel and pushing and pushing. Contact a family might be useful to help. Can't think of anything else off the top of my head.