Hello, I just joined and by god, I didn’t think I was bad with tech but this place is hard to navigate! I have no idea if I’m posting in the right place/doing the right thing but here goes…
I’m a single mum to a son (6yo) with additional needs. I never thought of myself as a carer, I always thought carers were older people looking after their partners… but basically my son finds leaving the house really difficult (lots of meltdowns etc, prep required for even a simple journey - just going out to get milk can take all day) so I’ve started to accept the word “carer” without feeling like I’m taking the p*ss, if that makes sense.
The reason I’m posting here is that the school holidays are really hard. Everyone just disappears off with their families (and I get it - I would be the same, I’m sure). At least when it’s school time, I get that contact at pick-up and drop-off. But during the holidays, nothing. I contact people about meeting up and they’re just so busy. I feel really lonely and isolated. I’m staring down two weeks basically of me and my son, alone at home every day.
Not really sure what I’m looking for. Just understanding. It feels like one step forward, ten steps back 
Eg I tried to sign up for an autism drop-in zoom call to chat with other carers, but the link wouldn’t work. It just feels like I’m fighting every single day, you know?
I have family nearby but to be honest they’re pretty useless. My friends are my main support during term time (and they’re great! I am very lucky) but during the holidays they all go off with their families/partners and it’s just silence.
Can anyone relate? Any tips or ways to cope/get through it?
Thanks for reading. I really hope this works!
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hi @csj111 , welcome to the fourm but you are in the right place, no need to worry about the age of the person you are caring for. There are people on here that care for youngesters and you should be able to find them. Most are on the roll call where we chat and blow off steam.
I understand about people disappering during the holidays, it a nightmare if you need support. Depends where in the us you are there might be a local carers centre to help you out . you can always ask the carers helpline for further advice. Does your son like Thomas the tank engine? or any kids program? I know many kids with aurtisum love Thomas and you can use it as a distraction. Meltdowns are hard to deal with maybe you need to speak to the gp for some help with the melt downs as it could be meds or put you intouch with a support group. hope you find it useful here.
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Hi @csj111
Welcome to the forum. I totally agree that school holidays can be tough. Friends are busy with their own children and families and those who have NT children can be more spontaneous than us. Seeing pictures of other families on social media having fun out and about doesn’t help either.
Does your son attend any holiday clubs or play schemes? These might help you both.
I look after S he’s all grown up now but of course he was a little boy once! He has autism and related learning disability. We live as autism friendly life as possible as it makes life easier for both of us.
We have a holiday routine, each day has a similiar routine and I write a schedule if it’s going to be different. It includes an S friendly outing, exercise (walk/ gym), time spent doing his favourite activities and helping out at home. I’m not saying this would work for you, it’s just an example. We do struggle if we have too many days without seeing anyone else.
Pop onto Roll Call for an ‘over the garden fence’ chat if you need to chat. It is meant to be lighthearted and a break from caring but we don’t always achieve that.
Was it a Carers UK online event you had trouble with?
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My younger son was hyperactive, I was blamed, other parents didn’t want to mix with us. Horrible. Life changed when he went to a special needs class in a normal school.
Are you happy with his education?
Finally my son was diagnosed with brain damage at birth (long story).
I was involved with starting a charity for families with a special needs child, still going strong 30 years later.
Are you claiming all the benefits you are entitled to?
Getting support from the Family Fund?
I learned more from other parents with a special child than Social Services!
In later years a social worker said she liked visiting me as she learned so much!!!
Hi Melly, thanks for your reply. I know what you mean about the routine and schedule - that’s a good idea. No, it was an autism peer group drop-in I couldn’t access, run by my local council. I might try to find an email address for them and see if I can get on another session. No, holiday clubs etc are too much for my son right now. Thanks for being there so I don’t feel so alone!
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Thanks bowlingbun for your reply. I’m still getting the hang of how this forum works! I just looked into Family Fund but they have closed applications for England. Yes I’m getting other benefits (as many as I can find out about!) Thanks
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Thank you Michael, I appreciate your quick reply and to know I’m not alone! Apologies for all the replies, I’ve now figured out how to do reply all and tag people etc.
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Are you sure? There website is still advertising support.
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@bowlingbun - Can I apply? - Family Fund - about 3/4 of the way down, it says they’re closed for applications. I’ll keep an eye on it
I rang them, the website is pretty but not very clear.
Apparently they should have more money very soon, next month?
The website is unhelpful as the passage about being closed to new applications is hidden underneath I don’t know how many lines of text telling us that they’re accepting applications!! Not helpful.
I’ve made some enquiries. Apparently they closed for applications in February when the funding for the year ran out. They’re waiting to hear from the Department for Education at the moment, but have no idea when they’re going to. I’ve suggested they set up a way to sign up for updates about this, rather than keep parents stressed out. If I hear anything about that I’ll let you know.
In the meantime, I’m writing to my MP about this, and I suggest everyone else does, to point out that this is a much-needed source of help that parents cannot manage without. It really is time the government got it’s finger out.
Seems especially odd when McCain adverts says they are donating to the Family Fund.
You are 100% a carer. It doesn’t matter that you’re young or that it’s your child — the emotional, physical, and mental energy it takes to help your son through day-to-day life is huge. And yeah, you’re not “taking the p*ss” at all, you’re showing up for him in a way not everyone has to, and it’s hard. So hard.
School holidays can feel brutal when you’re already stretched thin and everyone else seems to vanish. That loss of routine and casual connection at drop-offs can leave such a hole. It’s not just about needing a break, it’s about feeling seen and having some thread of normal human contact.