Respite care breakdown

[spader1987]

Hi everyone,
Ds is 8, he has severe autism and a severe learning disability.
He can be the most loving and sweet little boy most of the time but can become very aggressive mainly due to communication issues as he has no speech at all. At home he rarely has meltdowns but when he does they are truly awful. He requires constant attention/supervision and it is exhausting.
He has been attending a respite group for the last 6 months and it has just broken down. It was only for 4 hours a week but it made a massive difference especially during the school holidays.
I'm absolutely gutted and don't see any other options.
I couldn't love him anymore if I tried but I just don't have a life anymore. I think about the future and just end up crying. He was diagnosed at 2 and many people told me it would get easier as he gets older, it has been completely the opposite.

Anyone else in a similar situation, how do you cope?

[Lesley25]

Call social services and ask for an emergency respite care agency - and also for an increase in hours. Ss have access to care agencies that can offer respite v quickly - within a day or so and ask for 2:1
Ask the ss to update the child review with the new aggressive behaviours and for an increase in respite.
Coping? I struggle all the time but right now you need ss to get a tsoite solution quickly

[MumUnderTheMoon]

What about direct payments maybe you could pay a classroom assistant from school? They could come in so you could go out? This doesn't suit everyone but you guys might like it. I'm sure he must be frustrated if communication is an issue my dd has a wide ranging vocabulary now but as she doesn't actually understand all the words and can't say them clearly we often end up with mumbled word salad. This is probably a daft question but have you tried makaton it can be very helpful for some.

[spader1987]

Thankyou so much for your replies.

Lesley25 - Thankyou for such detailed information! I feel a lot more confident in calling ss now as I feel like I know what I'm asking for, it often feels like their running rings around me.
I feel like I should be able to cope but it is a constant struggle, thanks for understanding!

Mumunderthemoon - Thankyou. I did explore direct payments initially with little success and also felt the group would help to expose him to a more social environment. I will defiantly look into this again.

Communication wise we have tried everything. Makaton has never worked for him as he doesn't really pay much attention to people and has never waved, pointed, clapped etc. He doesn't understand you can use your hands in this way.

We use pecs and aac, this has improved his communication to a point but he would rather not use them. The main issue is i have such a good understanding with him at home that he expects to have this with everyone. Of course this is not the case, which leads to more behavioural issues when he is not with me. His receptive language is also poor so he needs visual aids to know what is going to happen. His group often didn't do this which led to much of the behaviour. If he is dealt with properly behaviour should be minimal but finding someone to understand his needs seems to be more difficult than I first thought.

Sorry that was so long!

[Lesley25]

spader you’ve coped all this time and you’re doing a remarkable job given the situation. Never ever forget that. He’s been home with you all this time and like my ds probably functioning at a 2 year old level (sorry I hate saying that out loud) but I’m trying to prove a point. His body is an 8 year old and that is very hard to cope with. My ds is 10 now and I struggle most days but ss will always hold back support unless you’re on your knees. You need to make a point of telling them this to get a solution. 4 hours respite a week is what I have been given and it’s a pitiful amount given our sons aggression And his severe learning disability, so it often feels like Groundhog Day for us too.
I just wanted you to know you’re not alone but start shouting loudly. You shouldn’t have to do this alone.

[spader1987]

Lesley25 - Your words have meant a great deal to me this morning!
I completely understand your point, it is like having a 4ft 8inch toddler who when he has meltdowns can do a lot of damage.
Your right regarding ss, I do need to be more direct and honest with them.
4 hours a week is totally pitiful and you deserve so much more!
I will start shouting louder, thankyou so much for your support.

Your ds is very lucky to have you and I hope you get more support soon also!

[LadysFingers]

This is not my area of experience, but it has been suggested by the speech therapy team that DD (an adult, but more like 3 - 4 years old in language) use an I pad with grid player as a communication aid to help her expressive language (profound problems there and with memory). There are 4 levels and they decided level 3 was right for her. I believe you can add more photos and grids to it, although I have not worked out how!

It’s free to download - if you have an I pad, have a look at it? It’s like pecs on a screen?

[Lesley25]

spader you’re welcome.
The reality for parents whose children are on the severe side of the spectrum is that school time starts to feel like more of a respite solution- Mine certainly does.
Not too long to go now till they do go back.
For me, It’s made me question everything about my dss placement, whilst school intially brings back the awful settling in periods I can’t help feel like it’s being seen as a respite solution especially by social services.
You’ll hear the usual crap about it being harder in the holidays for everyone and when your ds does go back to school you’ll feel
Like this life is cope’able again. But if we put in respite solutions for the holiday breaks and make sure school does their job of teaching rather then acting like a “holding bay” for 6 hours we can really see what we need for our children to progress and make decisions about respite, education and a life for us somewhere amongst it all.

There will always be people on this site to rant to who will “get it”.

The futures uncertain for everyone and life’s too short to sit there and worry. Come back on here and type out your worries, issues, or if you’re having a shit day and it got shitter, but don’t struggle on alone.

[LadysFingers]

Btw, I used to get a carer to help me look after DD 40 hours a week, and two carers 6.5 hours a week to give me and DH respite in school holidays. (DD has different problems to your DS, but everybody accepted it was too stressful for one person to look after her; and especially to go out with her)

[lorisparkle]

I teach children with severe learning difficulties and autism and have worked very hard with parents and other professionals to try and get the best respite for the family. It might be worth talking to the school to see if the can help. I have called and attended multi disciplinary meetings with parents, social care and health to discuss how the families can be better supported and I have worked with respite providers to ensure that what communication aids and behaviour strategies are in place are used consistently across all settings. I always really feel for the families as they seem to be having to work at least twice as hard to get through the day and then have to work hard to get the things they need.

Our school has a family support worker who is amazing and works throughout the year. It might be worth seeing if your school has someone similar. Ours knows the best people to talk to and is a good listening ear herself.

Our area has CYPS nurses who are also great at supporting families. Have you got anything similar?

[spader1987]

Ladysfingers - Thankyou for your reply! We currently use proloquo2go on ds's ipad. He needs a lot of prompts and encouragement to use it. It's something we are working on with school.


Lesley25 - I totally agree it does feel like that. Our social worker certainly seems to see it that way.
I dread the start of the school year as I know full well what is going to happen! New staff that don't know him or how to communicate with him, the frustration will come home as it always does. I'm sure that sounds very familiar!
The whole system seems to be designed to make life as difficult as possible.

I'm glad I posted last night as I defiantly needed to vent and defiantly feel less alone now. I'm used to bottling it all up, not a healthy way to live.

Thanks for taking so much time to make my day much better.


Lorisparkle - Thankyou so much for your reply!
The information you have given will be very helpful. I will defiantly talk to school to see if there is anything they can do to help. Trying to get everyone on the same page with communication and behavioural strategies is defiantly a major issue. As you know consistency is incredibly important and this is clearly why his respite hasn't worked.
His teacher last year was excellent in the way she worked with me so we could give him a consistent approach.

I'm not sure if they do have a support worker but I will defiantly ask.
I'm not aware of a cyps nurse but I will ask ds's social worker. What is it that they do?

You sound like an amazing teacher who goes above and beyond to help the families of the children you teach.

Thanks everyone!

[spader1987]

Sorry that last post is so hard to read. My phone doesn't seem to work very well with the app.

[lorisparkle]

Not sure how to paste a link but here it is I hope!...

cayp.2gether.nhs.uk/parents-and-carers

The children I work with are often really struggling with particularly challenging behaviours so not sure if your dc would meet the criteria. In our area there is a shocking 18month waiting list.

[lorisparkle]

Thank you for your kind words, I do get very attached to the children I work with and worry about them and their families terribly over the holidays. I would love to offer respite myself but just not possible currently.

[EggysMom]

Relevant link popped up on my FB feed a couple of days ago - Cerebra factsheet for if your child isn't getting the social care support s/he needs

www.cerebra.org.uk/help-and-information/guides-for-parents/factsheet-child-isnt-getting-social-care-support-needs/

[spader1987]

Lorisparkle - Thankyou for the link! Waiting lists for everything these days are insane but have become the norm unfortunately.

Eggysmom - Thankyou for the link I will have a good read of it.