HELP!!! - Need some advise re respite

[ASue67]

I am at my wits end at the moment coping with my boys. Since M was dx (19th July 07) things seem to be going from bad to worse at home. The holidays have been a nightmare with meltdowns practically everyday. To make things worse my eldest boy (NT) is having major strops as well and causing even more problems for me to cope with. I really think I need to have time with him without M being around but being on my own this is impossible to do. CAMHS have been a complete waste of time since I got the dx.......... should have had another appt arranged and have had nothing sorted since they told me about the dx.

A couple of friend's have said I could do with some respite or help from someone who could come to the house and help out with M.

I need something.................. have spent most of today in tears and I am absolutely exhausted. I can't carry on like this.

 

Does anyone know who I should talk to or contact or what help might be available (if there is anything)??? I don't know where to start..............

 

Sorry for rambling on!!!!!

 

Thanks

[Kathryn]

Hi Sue,

 

Holidays are especially tough aren't they. <'>

 

The National Autistic Society provide "befrienders" who provide the kind of practical support you want. You could try contacting them to see if there's anyone available.

 

Just checked the site info for your area and found this.

 

If they can't help they may be able to refer you to someone who can.

 

K x

Edited August 16, 2007 by Kathryn

[ASue67]

Hi Sue,

 

Holidays are especially tough aren't they. <'>

 

The National Autistic Society provide "befrienders" who provide the kind of practical support you want. You could try contacting them to see if there's anyone available.

 

Just checked the site info for your area and found this.

 

If they can't help they may be able to refer you to someone who can.

 

K x

 

 

Thanks for that Kathryn! Have sent an email with all my details and explaining my situation to see if they can help.

I appreciate your help. Will let you know how I get on!

 

<'>

[brooke]

hi

i have a befriender and she is really nice. It took a while for me to trust someone else with O but she is a lovely girl. I have also decided to let our pead write to social services as apparently they have a social worker attached to a disabilitys team who she said, can tell us what they could do to help. Hopefully playschemes for the summer etc. So you could maybe try them?

Brooke

[Bagpuss]

We managed to arrange respite via our social services. This was when youngest dd was at nursery age, and we felt we had no quality time with our eldest two children. The social worker suggested youngest dd attended the nursery she was already at, but also for a couple of days during the school hols. It worked perfectly. Once she started school we decided we didn't need it anymore. We were also told we could apply for direct payments, and employ someone ourselves to offer respite, including family members. Good luck, the holidays have previously been so difficult for us too, and even now we spend them doing things completely seperately with our 3 children.

[soraya]

I get direct payments for Nick, it is great as you can employ someone yourself, even family. I pay my nephew to take Nick fishing which works really well as he would not go with anyone he did not know. Your social worker should know about this scheme, you just have to beg and say you cant cope!!. Good luck.

[pearl]

Hi Sue

Kathryn is right, thats the main source available in our area. JP had family link for a while but they are short of volunteer families so you may have to wait, however if you get in the system at least they'll know about you. Ours only lasted a few months as his family moved away (was it something he said ) but it was good while it lasted.

 

He also got tapped in to a social group there, they went bowling, to the cinema etc. He loved it. Started off with just Asperger boys which I preferred but then included different disablities.

[ASue67]

Thanks for all your replies. Have sent off a couple of emails re befriending schemes so will see what response I get.

Fingers crossed I have a better day today!!!!

[Cariad]

I was in your position, my DS was driving me to tears with the meltdowns and violence. We have a social worker and now we have a helper who takes DS out 5 times a week 3 hourly sessions or double sessions of 6 hours. I can now breathe for 6 hours and spend time with my other children doing things the DS doesn't like.

 

 

So my advice is get onto the SW and say, DO NOT play it down as I did and got no help. Also look into playschemes for next year for your son through social services. I missed out this year but have got respite (thank god )

[ASue67]

I was in your position, my DS was driving me to tears with the meltdowns and violence. We have a social worker and now we have a helper who takes DS out 5 times a week 3 hourly sessions or double sessions of 6 hours. I can now breathe for 6 hours and spend time with my other children doing things the DS doesn't like.

 

 

So my advice is get onto the SW and say, DO NOT play it down as I did and got no help. Also look into playschemes for next year for your son through social services. I missed out this year but have got respite (thank god )

 

 

Thanks, will have a look into this.

Do I need someone to refer to to social services or to get a social worker or do I just ring them myself??

[Cariad]

Thanks, will have a look into this.

Do I need someone to refer to to social services or to get a social worker or do I just ring them myself??

 

I'd get the number in your area for social services and call them, don't hold back say how desperate you are and go from there. I got refered from my special needs health visitor as the DS is too old to have a SNHV. Don't hide it, don't pretend you are coping tell them, if you don't keep on you don't get. Believe me I've had almost 12 years finding out if you don't shout loud enough you don't get heard.

[Juney]

As Cariad has said contact your local social services and ask for an assessment for respite, as Cariad has also said you do really need to stress how desparate you are for help.

 

juney

[allie]

Hi Sue

Thanks for this post, with all the replies I've had loads of my own questions answered. I tried to get some respite for the summer holidays but nobody seemed to help, kept getting told to phone another agency etc. I knew the holidays were going to be hard and of course now in the 5th week, I've got no more hair to pull out, its been so stressful . I was really unsure about phoning social services but listening to everyone else I'm definitly going to give them a call!

 

Good luck, only 1 week to go

Allie

[ASue67]

I am going to do some ringing round once the boys are back to school I think! I don't seem to be functioning that well at the moment so I need to do it when we are back in routines again.

Have tried to find out about befriending schemes but there doesn't seem to be anything available in Lancashire at the moment...................... just get put on a list if anything comes up.

 

Good luck!

[stressedmumto2]

Yes, definatly keep on to s/s.

 

For a year now we have had arespite worker for 3 sessions at 3 hours, we have had up's and down's with the worker as he's not really asd aware but when it's ok it's gd for my son, they do activities like fishing/swimming etc.

 

S/S increased the sessions to 12 hours through the summer holidays as I kept on to them, you really do need to let them know how important it is that you have some time with your other children as it turns out we have been so busy doing other things we've not used the 12 hours each week, probably about 6 at the most and because the worker is so busy we haven't been able to use them much at other times.

 

Really I would keep onto social services they may say he can't go on child and disability team but if they see their is a need for their service then you should get it. Have a look at the national autistic society website for getting help from social services it's very informative.

 

Hope you get some respite soon <'>