Amy advice on respite care for SEN child

Ayda43

Not sure if anyone will be able to help but I’ve already been awarded 26 nights of respite for my son, he’s 10 years old, attends school, he has diagnosis’s of Autism, Sensory Processing Disorder, ADHD, non verbal, absence seizures, he has quite complex behaviours. We’ve been trying to get him respite for 5 years now, I’ve never had a night without him. Apparently there are no respite centres near where I live in [Removed by moderator], any advice?? I’ve recently lost my father and uncle within 2 weeks of each, I’m starting to feel completely burned out with everything,  I’d love to take up the opportunity of respite for my son but I’m told by my social worker there’s nothing available, any help would be appreciated thank you ❤️

Alex_Alumni

Hello @Ayda43 and welcome, thanks for reaching out last night. It does sound like you've got a lot to deal with at the moment, so it's good to hear from you. I hope we can help support you. 

Just for your safety online I've removed some of the details around your location, I hope that's okay. 

I'm very sorry to hear about the loss of your father and uncle within such a short space of time, that's devastating even without your son's needs on your mind, I'm not surprised you say you're feeling burnt out. 

If you're struggling to manage feelings of bereavement and grief, I'd like to share a few organisations which can help: 

• Cruse Bereavement Support
• The Good Grief Trust

In terms of respite care, you've mentioned you've already been awarded 26 nights, can I ask where from?  
Do you feel as though your own support network, i.e. family, friends, or loved ones, might be able to help, even if not with the care itself? 

It sounds as though you've spoken to your social worker, but have you spoken to your GP about how you're starting to feel burnt out? It might help to ask about a referral for a needs assessment, especially if you feel you could do with additional support in caring for your son.

Speaking with your social worker about reviewing levels of current support might also be worth doing. 

I know that Scope does provide support through it's family services, though this does depend on your location a lot of the time. Please do take a look to see if we can help. 

Please let us know if you feel we can support you further with anything, and take care this weekend.

L_Volunteer

Hey @Ayda. A warm welcome from me. It is great to see you have joined us. Thank you for already finding the courage to reach out to us.

Have you managed to contact your local authority? Sometimes, they can put ‘enabling’ support in place, which is a bit like respite. Though, it often focuses on daytime rather than nighttime. 

Similarly, are there any charities near you that specialise in SEND? Sometimes, they can also provide respite. It might be worth browsing what charity support is available in your local area. 

Other than that, it would seem the most suitable route is to approach childminders/ child sitters but be mindful of their SEND qualifications. 

You could recruit yourself if needed and specify criteria relating to SEND needs. Only if this is something you feel comfortable with though, of course. 

It sounds really difficult for you that you are also bereaving the loss of your father and uncle, especially so close to each other.

I can hear how this would mean you feel burned out. Other than respite care, is there anything else that might help things feel more manageable currently?

Sending you hugs. Please don’t hesitate to let us know if there’s anything else we can do to support you. We are all here for you and listening to you 

Ayda43

Thank you so much for your kind words.   

I have been in touch with my local authority and have been allocated a disability social worker, she has secured me funds for the 26 nights of respite,  However she’s been trying to get Callum somewhere for 5 years, with no luck.

I volunteer my admin skills to our local SEND Family Voice forum, so I feel like I’m in a more beneficial position than most to find a suitable place for Callum, but I feel it’s a bit of a postcode lottery where I live. In my local area I know of one over night respite centre for SEN kids and I have been told twice that Callum doesn’t fit their criteria because he doesn’t sleep and needs a SafeSpace bed. 

I do have a Direct Payment worker, he’s fab and Callum loves him but I only get him 2 hours twice a week because he’s so busy.  I have tried other people and child minders but they can’t cope with Callum’s behaviour, he can be a lot to handle sometimes. 

I’m sorry I do feel like I’m feeling sorry for myself a bit.  My family are lovely and supportive, but they all work full time and have families of their own and tbh they struggle to cope with Callum too.  It’s just been me and Callum on our own for so long, he’s getting older and stronger and I do worry about the future a lot and my ability to care for him as I need decompression surgery on my spine, which I have been putting off for 4 years as I have no respite in place for Callum. 

I’m starting to think that I will have to look outside of my local authority area to be able to find somewhere. 

Ayda xx

L_Volunteer

That sounds really difficult @Ayda43, especially as the disability social worker has been trying for 5 years with no luck.

That pesky postcode lottery regarding available services! Not least when there’s one service but he doesn’t meet the criteria, unfortunately.

It is positive that you have a direct payment worker but I can hear how much additional hours and availability would be beneficial.

Please don’t apologise. This is a really difficult situation, you are doing so well and this is more of a reflection of the difficult situation than you as a person.

Please don’t hesitate to let us know if there’s anything else we can do to support you, even if that is just providing a listening ear. 

I really hope you have some better luck finding respite soon. However, I can hear that with your luck to date, you are not feeling completely hopeful  

durhamjaide2001

I have problems with the pesky postcode lottery I couldn't access a charity called Intergrating children when I'm  still in the country 

L_Volunteer

That sounds really frustrating @durhamjaide2001. What meant you couldn't access the charity, if you don't mind me asking? I just want to make sure we hear you as clearly as we can.

Also, can I ask what made you want to access the charity? I am just wondering if there might be similar charities you might be able to access or services outside of the charity sector.

You deserve access to support. Please feel free to let us know more information about this and, hopefully, we can help you with this 

durhamjaide2001

L_Volunteer said:

That sounds really frustrating @durhamjaide2001. What meant you couldn't access the charity, if you don't mind me asking? I just want to make sure we hear you as clearly as we can.

Also, can I ask what made you want to access the charity? I am just wondering if there might be similar charities you might be able to access or services outside of the charity sector.

You deserve access to support. Please feel free to let us know more information about this and, hopefully, we can help you with this 

It wasn't a charity it was run by the county council. It wasn't right for me.

L_Volunteer

durhamjaide2001 said:

"I couldn't access a charity called Intergrating children when I'm  still in the country" 

Apologies @durhamjaide2001, I got "charity" from this part of your message  Absolutely fine if it wasn't right for you, not everything is right for anyone.

Have you managed to access something that is more right for you since? Please don't hesitate to let us know if there's anything we can do to support you 

EWSELondon

I wonder if your social worker has explored respite care with a foster carer. I know of some foster carers that have children overnight once a month to give parents a break, to prevent situation getting too much and the child needing to be placed in foster care full time. Have you asked? Obviously the foster carer would already be trained in caring for children with SEN, but I think it could be an option to explore

forgoodnesssake

Does your area not have any sort of "Shared Lives" or "Shared Care" type scheme?  A bit like foster care but set up to give respite breaks.  I am assuming not as your SW would surely have known about it.  I really empathise with your situation as we too were awarded a weekend every 6 weeks of respite years ago when my son was a child but it was 5 years or more before we got any as there was a respite centre in our town but they had set the criteria in such a way that he didn't meet it!! (had to have LDs...)  In the end we got a few nights with a respite family, which was OK but as their house wasn't actually accessible and the husband worked off-shore (which they hadn't told the "Shared Care" co-ordinator) it didn't last long. 

After that and once my son was a little bit older (ie so that the carer in their own home didn't have to be registered with the LA as a foster carer; not sure of the regs now or the age cut off for this) we used our Direct Payments to pay one of his other helpers and he stayed at theirs overnight occasionally.

Ayda43

Thanks for the advice!! We’ve explored the overnight  with a foster carer situation, and after discussing it at length with some amazing foster carers in my local area we came to the conclusion that it wasn’t suitable.
Callum doesn’t sleep very well, even with melatonin he only has 3-4 hours a night, he also needs a SafeSpace bed. He can also become very destructive at night, he pulls off wall paper, pulls up carpet, he’ll smash up furniture, one night he even managed to break a fire escape window and was sat on the extension roof!!! I just don’t think he’ll settle in a strangers house without me. I’m trying to stay positive that we will find something but it’s not looking good x

L_Volunteer

How does it make you feel that the conclusion was that it wasn't suitable @Ayda43? It sounds like a trap for you at the moment. As you say, hopefully, you will be able to find something. In the meantime, please don't hesitate to let us know if there's anything we can do to help