Autistic ADHD teen holiday respite: Hi...my first... - Mencap

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Autistic ADHD teen holiday respite

2556 profile image
2556
20 Replies

Hi...my first time seeking help...my grandson is breaking up the family...no-one can cope or manage his behaviour anymore...we are all exhausted...just left mainstream school for a special needs school this morning, but need something residential... willing to pay, unable to find any information!!

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2556 profile image
2556
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20 Replies
Jofisher profile image
Jofisher

So sorry you are all struggling we have all been there and we appreciate how hard it is. Right have you contacted social services ? You shouldn’t have to pay. Speak to Carers U.K. association also autistic society should be able to advise you as. Family. I paid for an Independent consultant social worker worth her weight in gold. Good luck

2556 profile image
2556 in reply toJofisher

Thank you...that's a little gem... could I have his/her details please?

Jofisher profile image
Jofisher in reply to2556

07554 992560 Vanessa Evans

2556 profile image
2556 in reply toJofisher

Thank you so much 🙂

oakvill profile image
oakvill in reply toJofisher

Where is Vanessa based?

Jofisher profile image
Jofisher in reply tooakvill

West Sussex but she works all over but if she can’t help she will advise where else you can go

oakvill profile image
oakvill in reply toJofisher

Thanks for replying so quickly! We are in Dorset so not too far away.

Jofisher profile image
Jofisher in reply tooakvill

I love Dorset good luck

BenjiB profile image
BenjiB

I understand! We’ve been there too.

You shouldn’t have to pay. My son is at residential college, there is a school there too. It’s very expensive. Of course fees depend on need but my son’s fees are £170k per annum. We had to go to tribunal for funding too. It’s been amazing for him though .

For a list of residential schools look at. There are various options, full boarding, weekly etc.

specialneedsuk.org/findasch...

You can use the advanced search to find a residential placement.

2556 profile image
2556 in reply toBenjiB

Thank you so much....joining this yesterday has made a massive difference to the way I feel....I just felt so isolated...I appreciate the time you've taken to listen and advise 😊

BenjiB profile image
BenjiB in reply to2556

It’s really hard when there are challenging behaviours. It affects the whole family. I always feel for my younger children as their lives are 100% different to their friends. They’ve never enjoyed days out or holidays. Their problems have always come second. It’s made them very independent teens though! That’s why we went for residential college. My son is 38 weeks a year so is still home in the holidays but it’s been so nice for them. We had all sorts planned for his first year there, he was going on 3 holidays with college which meant we could go somewhere too but sure enough in March after he started covid hit and college closed for 9 weeks! He finishes there in July and will go to a permanent residential placement. We’ve hunted for over a year to find somewhere perfect for him. I’m excited for him and fingers crossed we can finally take the other kids somewhere. Of course we all love our children but sometimes I’ve had moments of not liking him at all. He’s 23 now and I’ve done my bit! He’ll still come home regularly of course, but no long 6 weeks holidays again!

SpeedyH profile image
SpeedyH

Your grandson sounds as though he is having a tough time of it and it sounds like his mainstream placement wasn’t meeting his needs. I hope he is happier and better supported in his new school. Generally, holiday respite is something that is funded and arranged by children’s social care services so if you haven’t already, I suggest you get in touch with them and ask for an urgent assessment of his social care needs and also a Carers needs assessment. Every local authority should publish on their website their ‘local offer’ and this should list any holiday clubs, respite facilities etc in your area. Perhaps phone the autistic society for advice and also get in touch with the family support worker or senco at your son’s new school and ask them if they know where the other children go for respite.Perhaps also look at strategies for helping children with a PDA profile as they can be useful for other children too. You might well find that your grandson’s distressed behaviours settle down over the holiday now that he has left MS and is hopefully happier in his new school.

2556 profile image
2556 in reply toSpeedyH

Thank you so much...so helpful....I've had 4 really helpful replies since joining yesterday, and it means so much to me!☺️

Eeviee profile image
Eeviee

Hi there. At puberty about the age of 13/14 our sons behaviour also started to become more challenging. Up until then he had been at special schools and was attending a residential school at the time but term time only. We needed help in the holidays like you do and it was social services that provided the funding for that support. You will need to approach them with all the details of his behaviour and the support you need. We asked for day time support 2:1 and got it but the social services do take you to the wire and you will be at your wits end until you get it. Make sure you paint the darkest day. Even though you love your grandson he will need more support than ever now as his body and mind adapt to adulthood. Look for any local charities that can help you. I’m in NW London and we have 2 only that I know if so these organisations are thin on the ground. Good luck

2556 profile image
2556 in reply toEeviee

Thank you so much for this advice, and for taking the time...I'm in tears now... relief that anyone can be bothered to be honest 😢☺️

Eeviee profile image
Eeviee in reply to2556

Hi. It is a hard road that we have to travel at times but there are others out there who experience the same things. I found a group called Bringing Us Together (Katy and Pippa) who are fantastic. I also found a group in Hertfordshire called supporting Together(Chris) who are great too. Check them out and if you can’t find them on the internet let me know and I’ll send you those details. Another group is Inclusion London and Social care warriors. The last two are campaigning groups mainly I think. My husband and I shed many tears and were on the verge of depression many times and did not have the support of our sons grandparents initially which made things worse for us. You are a great support to your children and grandchildren. Stay strong. 😀

catthecook profile image
catthecook

Hi if your grandson is under 18 you could also try contacting Action for Children who offer respite care for families of autistic children. Think you need to be referred by social services and get assessment then go to a panel for approval of a care package so a bit long winded but worth trying.

2556 profile image
2556 in reply tocatthecook

Thank you....there's a "child In need" meeting taking place on Tuesday.... feel the wheels are actually in motion now...but please keep throwing tips my way!!

2556 profile image
2556

Thanks everyone for this wonderful information ....my grandson appears to have settled into his new school ....in that there haven't been any complaints yet, and he hasn't been excluded.... however his behaviour at home is atrocious and we are desperate to sort something out for the summer holidays. if anyone can tell me ....is there such a thing as a paid support worker that could pick him up from home for a couple of days each week and take him for activities/bike riding and a meal to relieve the family..... because I feel its a little bit late to set the ball in motion to get something into place through the authorities within 3-weeks.... so if anyone knows a resource ....a list of qualified support workers for ADHD/ autism teens.....this family is on its knees....

49Twister profile image
49Twister in reply to2556

I have no idea really, have you tried googling personal assistants in your area. There maybe private companies who can offer this. I do know that if you advertised for a personal assistant yourselves you would need liability insurance plus also someone to deal with wages, tax etc. It can be complicated and expensive. Have you contacted social services yet at least for the future but I would stress you have an emergency situation happening now. Good luck

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