Talk to me about respite care please

[RespiteAdvice]

We feel like we may need to take this step, and really wanted some advice, and just to get my feelings out about it all.

One of our DC2 has autism, and things came to a bit of head today, after a bit of a meltdown.

My other DC spoke to DH and me, and said that they feel DC2 is getting away with behaviour (meltdowns) and that DC2 is treated like a king here etc etc. They got pretty vocal about it all really, which surprised us as they all usually get on very well.

We are now wondering if it's an option to look at respite, however I feel very mixed about it all.
I don't want to ship DC2 off every now and again, yet I want everyone to be happy and maybe we could do with spending a bit more time doing things with other DC, that DC2 wouldn't enjoy.

I have a little search, and one of the respite centres seemed perfect for DC2, it is about 1.5 hours away though. Nearer ones (at a glance) seem less fitting.

It all feels a bit overwhelming, and I did have a bit of a cry about it all in private.

Please tell me about respite.
Is it easy to access? Is it expensive? Which types are there? What are the benefits for DC2?

Just wanted to add that this is a duplicate post - I did post elsewhere, however on a quieter board, and I really wanted some advice.

Hi, respite care can be in the form of them staying in with your child and you get to go out. Or they can take him to a local park.

Hi OP. How old is your DC2? If under 18, do they have a referral to the Children’s Disability Social
Work team? They can assess and offer some Short Break hours and will also advise on respite. Some local authorities have their own respite centres.

My ds sent nights away from age 10.
For him
Chance to goon sleepover as he had no other opportunity with family and no friends
To do activities he would not try at home
To be more independent of his family
To get used to being away
To form new relationships
To learn new things experience new things
Be in a place with trained enthusiastic people
Access to equipment like tricycles Nd music
Try new foods

Fir dds, For all the reasons you said

I don’t know about respite but just wanted to say well done to your other DC for speaking up with their experiences / opinions, and to you for being approachable enough for them to feel able to do so.

Hope you’ve all had a good Christmas.

My ds who is 9 gets respite via his disability SW. However in reality its extremely hard to find a PA which seems to be the standard offer.

Ds has one nightva week boarding in his SEN school and that's the perfect balance. Ideally I could use my respite funding on that but it's never that simple

I'm a sibling of a child with multiple issues. We did/do get on, but it had a significant toll on my life. I really wish my parents had looked at respite, so that even once a year what I needed was prioritised. I was never brave enough to vocalise this but looking back I wish I had. I'm sorry I can't help with practical advice but thank you for listening to your other dc and remember you are not shipping them off, rather you are carving time for those that need it.

Go thru children with disabilities team
A 24 hour slot might be 150
If you can afford privately sure
Build up he would do short visits first like one hour then two then four
So factor in travel too

Good on you for listening to your other DC, it must have been hard for them to share and hard for you to hear.

One of my DCs is autistic and one unexpected benefit - a sad one but probably a benefit overall - of their father moving out was the realisation that actually spending more of the time with our autistic DC with one parent and the other two with the other made everyone's life so much happier.

Each of us still absolutely have 'family time' with all 3 DCs and other family, but the reality is that even though dc2 is coping fine in mainstream school, she finds compromise hard and stressful and doesn't have the skills or desire to join in with group activities, so they don't get to experience the same sibling benefits. It's been better all round for her to have more calm time, and the others to have time when their parent can be totally focussed on them. It's also helped me have some proper down time, as they're with me most nights.

I appreciate this situation isn't exactly the same, but it is another 'least worst'. I'd never have wanted to intentionally split my kids up for contact (or split up at all for that matter), but have a child who is neurodivergent makes you have to parent very differently. Some respite, whether at home or outside, might actually end up bringing big benefits all round.

Thank you so much for all the supportive replies. It's good to read others experiences.

It feels like I just can't manage to make everyone happy.

@SlowBoiledFrog - if you don't mind me asking, what would have helped make all the difference for you? Thanks for sharing, it is helpful to read a siblings take on it all.

@Shallysally - no referral to anywhere, I'm not sure how this would happen.

@Embracelife - thank you so much for sharing all of the positives. That really is what I need to read about right now.

@RespiteAdvice, I’m not sure if you can self refer. If not, either GP, school or other involved professional such as CAMHS/school nurse.

My DD is an only child but severely autistic and non verbal. We get respite supposed to be 3 nights a month, which gives DD a chance to experience different things and different people. She will need care for life so in my mind it helps her (and us too) get used to being away from home. It is also essential for DH and i to have some time to recharge.
We also get direct payments for her which pays for someone to take her for an evening after school.
You need a referral to your Children’s Disability Team, which though a long time ago think was done through school. Not 100% sure tho. You could do it in reverse and contact them (through your council) and ask how you get referred in your area?
I feel I should warn you though that you may not get to choose where he goes. It may depend on where they have space? And I know our local one has a long waiting list. Again though, these things may be different in your area. It’s a scary thing to do but picture the long term benefits, especially for your other DS.

We get direct payments but as PP suggests, the tricky thing is to find a PA who is happy to work for minimum wage. We also get two overnights a month but my son will not attend unfortunately.

We have found it is easier to get respite for the non-disabled child, if that would work better for you? The carer could take the non-disabled child to activities/shopping etc to give them a break.

Not at all. For me it would be being able to do what I wanted, with my parents completely involved with me not always thinking about what my sibling needed. I know that my sibling didn't mean it/can't help it but it felt like whenever they didn't want to do something they kicked off so everyone had to change plans, or we didn't say what we wanted to do as we were always trying to avoid a meltdown.

This is just one tiny example -there was a little cafe on the seafront which did massive hot chocolates, my friends always talked about them and my parents finally agreed to take us, sounds silly now but I was really excited, we get there and the tables are sandy and the floor is sandy, my sibling starts getting upset/shouting and my parents say 'frog you don't mind getting a hot chocolate from McDonald's do you' and so we leave, and go to McDonald's which my sibling loves.
To just have the chance to go there with one of my parents, to have a day where we weren't having to preempt my siblings behaviour, or where there bad behaviour didn't result in them getting what they wanted would have made such a difference.

Even then I understood they needed more time and input from my parents and I did not begrudge them that, but I also needed time which I couldn't get when they were around.

As a pp said, if like my sibling they will need lifelong care, accepting respite is helping them develop as you won't be able to care for them forever.

@jclm

We get direct payments but as PP suggests, the tricky thing is to find a PA who is happy to work for minimum wage. We also get two overnights a month but my son will not attend unfortunately.

We have found it is easier to get respite for the non-disabled child, if that would work better for you? The carer could take the non-disabled child to activities/shopping etc to give them a break.

My non disabled dc didn't want respite they wanted time with oarent But there are sibing groups Where are you op?

Social services disabled children team ard gatekeepers to respite call Nd ask for assessment
There are also other things you can Vess like KEEn london and Oxford
PHAB
Things you can do you can go as family like calvert trust

I’m in my 50s now, but I agree with everything @SlowBoiledFrog says. I remember once my school was closed for voting and my sibling’s special school wasn’t. I still remember how it felt to do something ‘normal’ with my mum for the day, without having to take my sibling’s needs into consideration. You sound like a great mum. And my mum tried her best, but there wasn’t the same access to respite in the 70s.

Look on your Local Authority website and find the number for Children's Services and give them a call asking for a Needs Assessment for DC. They will have information and advice on support for your family as a whole.

Thank you @SlowBoiledFrog.

Where are you op?
In the South East.

Social services disabled children team ard gatekeepers to respite call Nd ask for assessment
There are also other things you can Vess like KEEn london and Oxford
PHAB
Are these different organisations to local areas? I'm going to search Calvert Trust too, thank you.

PHAB is a great resource, call or email etc. Years ago there used to be one in my area (I live in the SE too).

Local organisations might run groups for children or teens.
KEEN does weekly sessions
Get on parent groups in your county
Ask
Social services shoukd haVe a local offer website with links to what can be accessed
Ask about the local offer but look near by as well

To get the overnight respite centre paid for you need to ask and be assessed
If you can self fund you can approach direct

Placesxlije action for kids
Barnardo
Depends where you are