To just accept it and stay in for the rest of summer?

[NoSummers]

Cut a long story short, my oldest is autistic and prone to aggression and lashing out. I’ve tried and tried to take her out, but it’s getting too much for me and I genuinely don’t feel I can cope with taking her out anymore.
The problem is that it can happen completely out of nowhere. There doesn’t necessarily have to be anything that sets her off.
For example, the last time we were on the bus, she was sitting in her seat and absolutely nothing had happened. She suddenly stood up and started screaming and shouting. I went over to her and told her to calm down and that we would get off at the next stop, but she then started jumping up and down, screaming and lashing out.
There was a woman with a pram nearby and I was really worried she was going to hurt someone. Obviously, the bus was moving, so we couldn’t just get off immediately. We had to wait until it stopped and then get off.
There was genuinely no build-up to it. Nothing had happened immediately beforehand. She can just become extremely dysregulated very suddenly, which makes taking her out incredibly difficult because I never know when it’s going to happen.
I’m now at the point where I don’t want to take her out for the rest of the summer. I’m honestly scared that one day something will happen in public and someone will call the police.
I have other children as well, and I can’t constantly be dealing with a situation where this keeps happening with little to no build up.
I feel awful saying it, but I genuinely don’t know what the alternative is anymore. If it means we all have to stay in for the rest of the summer because I can’t safely take her out, then I don’t know what else I’m supposed to do.
Should we just accept this is it now and stay in for the rest of the summer? Shes at an age now where someone will call the police and I don’t want to be dealing with that.

we dont qualify for a taxi card as ive just looked and we don’t get the HRM which is the only criteria she could fall into.
Today there was genuinely no triggers we walked to the shop and she got what she wanted then started screaming and crying to go home

As an autistic person myself I find both public transport and shops to be the most challenging environments for me. I can’t even tell you what it is, it’s more a vibe but it just makes me incredibly uncomfortable. Like it could be lots of little things that on their own I could cope with but all together it’s like nope get me out of here. Things as simple as the layout of the shop feels wrong, or I don’t like the colours, or the smell, or the music, too hot, too many people. I very rarely even go into shops or use public transport these days.

When is DD 16?

The example you gave does have at least one trigger. You may not think of it as a trigger, but it is.

She wanted to go in the shop to pick her snacks i can’t leave her out alone

Just because DD1 wants to do something doesn’t mean she doesn’t find it overwhelming though.

She’s not 16 till march

You could do a change of circumstances for DLA if you think DD meets the criteria for HRM.

I feel sorry for you. My neighbour has a 14 year old autistic boy and they rarely take him out. He screams a lot and can punch people and remove his clothes. My child was punched in the face because she was standing in between him and his teacher. He is very unpredictable and has aggressive outbursts. My friend is concerned what they’ll do with him after school ends. It’s such a shame for them.

shes only just started getting hrc on her last renewal so I don’t really want to risk that award as I know they look at that whole thing again, and she only ever used to get mrc, I think she would be entitled to it but I know it’s a very strict criteria and you have to evidence each point so I don’t want to risk her award going down to mrc.

I sat there last time thinking exactly this, like is this my life forever now. What am I going to do when she’s an adult. Am I just stuck forever like this now. Everyone said she would get easier as she got older but she hasn’t. I wish she was small again it was so much easier.

Dont worry. I am told it is easier once they are 18 because it is no longer your responsibility to be the main carer. That is done via a care assessment and you get to just be a parent again. Not sure how true this actually is yet but parents i know with older kids seem to be doing ok. I chatted to adult social care the other day and you can even ask for them to commision a house for them to live with their friends in a supported living environment. Obviously thats dependant on needs and there will be a wait but she wont need to live with you forever.

Does she attend a special school/provision? I have noticed a few near me have started doing summer sessions (some where they are staffed fully and others where it's an more of an ignition for sen children to attend with their families in a safe place).

Shes only just recently started a special school after being home for 4 years and having to go through the tribunal process, her school does have a summer holiday club but it’s £150 a DAY I was shocked when I saw the price and I would have no way of getting her there even if I could afford that which I can’t, her transport wouldnt be available during the holidays.

This is why you need to press children’s services. The summer holiday club is something social care can fund. They might tell you they can’t/don’t, but they can. They can fund transport too. Again, this is something they often say isn’t funded, but can be funded.

Not at her school they wouldn’t do it the last thing we had was 2 hours a day and whilst it was better than nothing it wasnt great as two hours meant we couldn’t really go anywhere or do much we would have to factor in the travel so whilst 2 hours was good im not knocking it it went by very quickly and wasnt enough to do anything much

Her school holiday club is 9-3 so would at least give us a chance to actually do things but im not sure how many parents can afford £150 a day.

They may tell you they wouldn’t fund it, but they can and since they are telling you there isn’t anything available at the moment, you could force their hand if you wanted to.

You call back LA and ask them to pay an agency who can manage your dc.
Or enough direct payments you can hire some people
Dont just accept this.
And start planning now for when she turns 18 and needs adult care

They will fund the school one? How do you know that out of interest as the letter mentioned nothing about any funding to help for it? I didn’t go anywhere when the last people took her out as I felt I had to be available if they couldn’t manage her or needing to bring her back which they did the last time and then cancelled further sessions so the school one would be much better for us but there was no mention of any funding to access it.

You call back LA and if club is able to take her you ask them to fund it. Might be too late this holiday butyou get sw to take it to panel to make funds available.
Your other dc are missing out. Tell your sw

Ss can fund many things under short breaks if there is a need. They may need to go to panel (will do) but you can make the case . You need to ask. You have written enough reasons here. Good for her as she cannot go on family days out in the community. good for you and other dc
Eg ask for 5 days a week
They may offer two.
Negotiate for three.
Is the school and club state funded or independent?

Because children’s services have statutory duties that they are currently failing to meet. They have told you there isn’t anything available. That isn’t a lawful excuse. So pushing them to fund something that is available, even if it is more costly, is possible. No, it won’t be quick. Yes, you will be fobbed off. But it is possible to force them to provide support.

I vaguely remember a previous thread of yours OP. I’m so glad you’ve got her into this school because I remember thinking your situation (at the time) sounded impossible to bear.

have you been able to call any young carers groups? I really think they might be able to offer something for the younger siblings. Which in turn will give you a little bit of one-to-one time with your eldest.

and your council are really letting you down. Is there a mencap near you who can help advocate how desperate you and DD’s needs are? How the family is at risk of breakdown unless they can organise regular and consistent appropriate support from a PA provider.

Write emsil to them and if they put in writing they are refusing take that to your local councillor.
Be polite and present your case.
For school holidays you need xxx funded because yyyy.
You could try for urgent assessment for this week this august as your family "at risk of breakdown " etc (is there space in the club the rest of august ?)
Call duty social worker say politely your family is at break point and you need xxxx

Thank you, yes I had lost all hope but they backed down 3 days before tribunal, they really dragged it out but 3 days before I got a call from the tribunal officer saying she had a place at the school and agreeing to all the amendments in the ehcp. So she has been there a few months now. I don’t know about mencap I haven’t heard of that so I will look into it. Thanks