The night before respite

[Lesley25]

The visits over 4 month's are done.
Bags packed in car.
Hotel around the corner for me booked.
Tomorrow I drop off my severely learning

disabled 12 year old off. He’s familiar with staff and place but never slept over anywhere before without me.

Any words of advice from fellow mums who’ve been here?

I’m fully expecting behaviour afterwards. Will he feel abandoned? Hate us for it?

Our son loved it, he had different people to twist round his little finger Seriously, you are doing the right thing by starting the slow road to giving him a more independent life. He will get used to the different location having a different routine, honest.

Thank you.
Love the user name, one of my favourite songs.

From my experience you won't find the first few nights as respite as such. I constantly worried and wondered how it was going. I was unable switch off or sleep.

Don't be disheartened if the backlash from the first few visits leave you thinking "is this worth it?" It absolutely is long term. Persevere. DS1 has attachment issues and extreme separation anxiety related to complex MH problems and no matter how much preparation we did it was a long time before he accepted I wasn't leaving him forever. Even now I'm not sure he 100% believes me. DS1 didn't sleep at all that first night.

Equally don't be hurt if DS doesn't miss you at all!

Good luck.

I’ve given myself a target of about a year of monthly and term time sleeps before I believe he’ll actually enjoy it. We had the same experience with carers and that took a year.

It’s such a long road but I take heart that I started it now- well 2 years in paperwork first. If we get to him being at home till 18 and then adjusting to supported living I’ll take that. Planning years in advance is what gets me. I know there’s a bigger picture but f me this is hard always pushing, preparing.

We plan years ahead too - we battled to get respite for our son from age 9 years, so that he could start getting used to sleeping away from us and being fed/changed by other people. He took to it faster than we expected

How did it go @Lesley25?

Everybody keeps saying beginners luck but really well.
We said “see you tomorrow”
When we left and he knew after seeing the bags so I fully expected a meltdown but nothing.
They had an activity out, all fine , slight behaviour but that’s been the case the last 5 visits so I wasn’t worried.
Dinner was thrown but a new one plated up (pasta bake) and he ate it. Requested using device a pudding. All foods were exactly the same as home.
Then he requested Bath a lot earlier they went with it and concluded he’s making his own routines here. So bedtime was iPad in bed and the at lights out he happily gave it back and went to sleep! Woke a few times but just put the light on and went back to bed. Woke up normal time.
Got ready and I went to get him at 8am.
He did get straight In the car but we were all
flabbergasted.

I really hope now he really enjoys it not just tolerates it but just goes to show at 12 years old, he was ready for this.
Next one is at the end of September.

I can’t quite believe we are here and it hasn’t been worse.

I kept reassuring him I loved him and I missed him but what a big boy he was.
In a strange way he’s also less aggressive with me, but I don’t want him to think that’s why he went to respite. So I’m reassuring him in the same way.

How did the second one go for you? We were supposed to start this at 11 but Covid scuppered it and I’m he’s nearly 13 now so it is the right time. I need to keep telling my head that!
Thank you for asking.

I was going to update the thread with things I did to make it easier. I will do that today.

This will change my sons life and mine. I can’t believe I’ll get a night to spend with my other son. That’s why I did it. And that’s what also spurs me on.

Awww, I'm really pleased it went well for him and for you

We had one issue after a couple of visits. Our son would go from respite directly to school the next morning; but we'd then be asked to collect him around lunchtime because he was unwell/"out of sorts". That happened a few times and we started to question the benefit. But there was never anything wrong with him, and we came to the conclusion that it was just behavioural (maybe he missed us!). It resolved after a visit during the summer holidays where we did the collection ourselves rather than a school/taxi escort, it's as though it broke the thought process; and we've had no issues since.

Our son now goes for one night every month, generally a school night so that we can maximise our respite (8:30am one day to 4pm the next). He's learnt to recognise that one particular case (his Trunki) means that it's respite or a trip away

That's lovely to hear, Lesley. Fingers crossed it's not first time lucky.

It's not unusual to have different routines at respite, it's a way of distinguishing different settings and putting each one into its own box. A bit like school is school and home is home. Or for DC with separated parents, mum's house is mum's and dad's is dad's.

One second night was similar of the first, it took us several nights to start making inroads. Drop off was difficult as DS1 realised what was coming, but it also allowed me to point out I returned last time and would do the same this time.

We had to wait an extra year for a Saturday respite because I knew he wouldn’t handle the school the next day. For us though this means I can finally go to my other son’s activities so we opted for that and do the pick up. Plus I’m hoping we also get a day in the half term holidays., but I think that’s a while off.

I’ve noticed a bit of aggression and behaviour towards me today but I think I’m reading too much into it!
Eventually I also hope to do the bag by the pecs cards so he knows he’s away that night but now I think respite will always mean that to him.

Things I did do, which I think helped:

Visits beforehand and increasing the time each visit. In hindsight I think 5 was too many, but I’ll never know the answer to that!

Food even down to specific cookie was exactly the same.

A structured activity the first few visits and a wave off on the bus. He is familiar with the bus for school so this was a lot easier emotionally for him to see us wave him off the first visit to an activity then leave him there in a strange place. We actually did that twice on the first 2 visits.

His room was always set up from the first visit with photos everywhere of family

Invested in iPads set up with favourite thing- x2 so if one runs out he doesn’t have to wait

CBeebies on in the background like home

Ive found with most things the second time harder, because he knows what is coming.
But like you said, reassuring him I came back last time I’m hoping is enough.
….I might manage a few hours sleep if I’m lucky. I couldn’t sleep, waiting for the phone to ring. I couldn’t settle at all. But the hardest part was getting to this point so I’m hoping now, whilst difficult, I must persevere.

One thing I am getting pissed off by is family saying “great now make him more independent”. As if this isn’t enough!!!