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 do get dla, we take taxis occasionally like if really necessary but I couldn’t use them all the time as it just wouldn’t be practical financially taxis are very expensive here. We are currently waiting for respite but been told there is nothing available at the moment.

We use something called Positive Behaviour Support which has been a godsend for my son. Basically you track when behaviours happen, what they look like and what the consequence is. After a while you might start to see a pattern. Then you can try to interrupt the behaviour before it escalates by doing things that you know help to calm her.
The cause of a meltdown is rarely something that happens at that moment- it could be a succession of things that build up, like a pressure cooker.

When she turns 16 she should get pip and will probably be able to get a car on motability so this is potentially a short term issue. Not that that helps for this summer though. I think you just need to walk places/ taxi and not go out too much

I agree, especially regarding young carers. Please see about having your other children registered as carers as most groups run school holidays activities and breaks. Also if your daughter is getting violent she may start lashing out physically at her siblings, they need help to cope too.

is she learnign disabled?
do you have a social worker
any respite?

She won’t be able to get a car she wouldn’t be safe

You can drive her motability car or a pa can (you can put up to three people on the insurance for free) . We have one for our son. They count significant learning disabilities as a mobility issue. We even have a blue badge now which is so useful for when we have to make a rapid exit due to a violent meltdown. Could you ask ypur council for direct payments and employ a pa through a private company to give you a break?

She had a PA I mentioned it further back. She needed 2 as one couldn’t manage, then both said they couldn’t manage and cancelled. Nothing has been found since. She did not meet the criteria for hrm on dla she gets lrm so I imagine that will be the same when it’s pip but not sure exactly how that works.

You need to get some kind of respite carer either through social services or by using some DLA money to pay for one privately for an hour or so. I know it's not easy but you need to really push for it for the sake of your other kids. Also if anyone on a bus challenges you to move you need to just politely explain that your dd needs you next to her. There much surely be other adults more able to stand or move. EDIT : cross post with what you have explained a;ready.

I think the poster means you could drive the motorbility car if she was awarded enhanced mobility PIP ?

I asked on another group for autistic children and the people on there felt I should not be sitting next to my daughter if an elderly or disabled person needed the seat, even when I explained she becomes aggressive they felt that an elderly or disabled person should have my seat and I should move if anyone needs it so that’s what I’ve been doing (I get asked for the seat because I’m “young”) and they often ask for DDs seat as well but I put my foot down on that one as she does need a seat.

She gets lrm on dla so is that different on pip?

Although there is technically always a reason, sometimes psychiatric issues begin in adolescence, and sometimes the trigger is interoceptive - yes, pain is definitely the first thing to rule out and treat, but it can also be digestive issues including a different experience of normal digestion, processing needing the toilet differently etc.

There are definitely individuals whose triggers cannot be identified definitely especially where they are non speaking or have limited use of language and can't use their alternative communication methods to reflect with a communication partner but only to request or comment whilst regulated.

I have worked with two people with limited speech whose triggers ended up assessed as psychosis with adolescent onset, but it takes years and an inpatient assessment to decide that after ruling out everything else as far as possible. Sometimes you really can't see a trigger, also where it's sensory it can be very difficult to anticipate sometimes, depending what it is and whether it's outside your control.

I know this may well be easier said than done but try to travel at times when it's a little quieter and if possible go to places with a short travel time. Maybe they are finding public transport too overwhelming/intense right now especially as it's busy summertime. I remember an autistic lad having a meltdown on a very crowded train via a city centre at Christmas time bless him & I remember thinking that kind of crowding causes intense stress for most of us, but even more so with ASD. Not blaming you at all & just wondering if there would be ways of finding more quiet, peaceful spaces nearby for you all.

Tracking and evidence gathering to try to identify potential medium term triggers is a good idea, but might be very challenging for a parent carer who is alone with younger children too, to actually do accurately.

As she's 15 her menstrual cycle is definitely something to take into account if you do manage to start gathering evidence of what happens through the day and week and where incidents occur in relation to that.

Really it's best if you can record her cycle, state of health, weather, who she is with, bowel movements, eating and drinking as well as where she is and what happens immediately before and after any incident. It's a lot for a parent also actively supervising multiple children moving around the community outside the house.

Where will live it is never quiet unfortunately

Its very different on pip. Mobility is either based on physical need or ability to go out safely without any support. My son was on middle rate care and lrm for dla but we now get high rate care and high rate mobility because there is no way he could go out by himself. He was given 2:1 care with a pa for going out and about but there was a dangerous incident so we stopped. He now has a specialist pa who is very experienced and can manage his challenging behaviour in a safe way. He goes out three nights a week and we get one night a fortnight respite care.

If your council are saying that she isnt safe to go out with two carers then they should be looking at employing a specialist carer through a private company. They are not allowed to just not give you any support because she is too difficult! Tbh the only reason we get as much help as we do is because i had a breakdown and wasnt very well for a few years as a result.

Oh thanks that’s really helpful I will go back to them and ask for some more support. That would really make a massive difference for us.

If you need to then i found using the words "crisis" and "family breakdown" were quite good at explaining how bad things had got for us.

I really need to push more for some help as I can’t go on like this so I will be calling them on Monday. She has also just been diagnosed with adhd (they said moderate to severe) so I’ve requested medication. I’m wondering if that would make a difference on her outbursts?

No idea. We are just about to start trying adhd meds. I am realy hoping they help. The complete randomness of the meltdowns is so exhausting. We have tried all the diary keeping etc but the psycologists have decided that at least some of the triggers are internal thought process based, i.e he is worrying about stuff, so we cant do a lot about that because he cant talk much.

For the people that said stay local or there is always a trigger I just don’t believe it, we tried today, again I tried to take her to a local park, as I’ve been fed up of sitting in the house for days on end, I explained clearly what was going to happen, that we would go to the shop, the park and then get ice cream, she agreed and was excited to go, as soon as we got to the shop she started, kicking off and crying and screaming saying she wants to go home, nothing happened it just didn’t, sometimes it’s planned she wanted food from the shop I suspect so when she got that she wanted a way to not go to the park anymore, so back home it is for all of us and my other
kids are angry and upset, it’s causing massive resentment from them, it took a long time to get everyone dressed and ready to go straight back home. I don’t think anything triggered her I believe she planned that she just wanted the shop.

Could you use that? So next time you’re going to the park, then ice cream, then the shop? So she has to get through the others before she gets what she wants

we was going to the shop first for snacks, bribes dont work I tried them before we need to pass the shop to get to the park so it would be a problem
where she would start.

Public transport can be incredibly stressful for some disabled people. DD may cope with going out better if she didn’t also have to cope with public transport. Have you checked if your area has a taxicard and if so if DD is eligible?

If DD needs you say next to her to keep her and others safe, then you would be within your rights to refuse. There will be others on the bus who could stand.

Have you tried a wheelchair or SN buggy? For some, this enables them to cope better with leaving the house.

You mention DD won’t wear ear defenders, have you tried noise cancelling earphones and headphones?

Some find sunglasses helpful.

It isn’t acceptable for social care to say there is nothing available. They can fund more specialist staff, they can fund a higher ratio, they can provide a higher rate of pay. When did you last have social care assessments? A carer’s assessment for you and an assessment by the children with disabilities team for DD?

You say there are no triggers, but then go on to give an example describing a trigger. The triggers may not always be obvious or immediately before the event, but there will be one.