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.

nk solutions, but in regards to giving up seats on a bus, I absolutely would not in your circumstances. If someone asks for your seat, tell them your DD is disabled and can only safely access the transport with you sat next to them. Wearing a sunflower lanyard yourself, and your DD if she will, might help stop people asking.

Thank you, I will do this today, I would really like her to go to the school club that would be amazing im going to push for this today and try to get somewhere even if it isn’t this holidays just for the future

I bought her a badge to wear as older people keep asking for her seat and think she is being rude not giving it up when she can’t stand on the bus she’d be running up and down. I will get something for myself to wear as well thanks.

Your description of the episode on the bus sounds quite awful. You need support really. You have a six year old in a fifteen year olds body. Autism is just one aspect only of her difficulties.
I would have hoped your GP would have given you information to support organisations who can help with her intellectual delays.
Go and ask them for help. You need it. Try Mencap. If they are not the right people they probably know who would be.

If children’s service refuse to provide support, including by continuing to say there is nothing available, you can complain, then ask for an independent review (that’s not so independent but is a stepping stone), then complain to the LGO. Depending on the specifics of your case, JR may be possible.

When you appealed the education side of things related to the EHCP, did you ask SENDIST to also look at social care needs and social care provision?

Contact has some helpful information about social care and the role of children’s services on their website.

You should request a carers assessment for respite and/or short breaks. Is dd at a special school? I am so surprised when children at special schools do not have a social care package. If this is her level of distress outdoors and impact on your family, you really should be supported to understand how to access services.

Ther may be certain autism friendly activities eg, at museums. Autism in museums is a good resource. Perhaps going out when it is very early may mean public transport is less busy and it’s all more manageable. Museums open for these sessions usually 8am.

if there is something she likes doing (eg park or activity) can you build up with a social story so that it may help to attend.

Do you have some service like targeted youth support or health support in your borough - they may have some specialist groups over summer.

are there activities she may enjoy at home that may helpbMake everyone more relaxed? Slime? Den building?

I have three autistic dds, no LDS but severe MH issues and I used to have a rest day after every day out day. An activity may just be going shopping or the cinema (lots of autistic sessions). But lots of time at home which was more manageable if we could manage going out every now and then.

Do you get respite funding or short breaks? She needs to be taken out safely at least weekly and you deserve some respite. Sending love. Its so hard.

If they are not agreeing to assess (and legally they have to assess when requested) pls do as someone mentioned and contact your local councillor. You could contact your local SENDIASS to see if they can support also. Sorry, my comment above was a bit off the mark and most had been suggested.

That sounds really hard and I don't blame you for wanting to avoid the bus.

I'm not sure if I've missed this is your previous replies, but do you have a partner that could take some time off? Divide and conquer would be the easiest way. Failing that, are there any holiday clubs your other children would be interested in? At least that way they get a break doing something fun and you're not trying to manage everyone's needs all day. Do you know any of their friend's parents? I'd absolutely take kids for play dates if I knew their family was struggling in this way.

Otherwise, park first thing when it's super quiet. Instead of the shop, let them all choose a snack to bring on the weekly shop.

Been to the GP was referred to camhs but they discharged her saying they aren’t able to offer any help.

OP I was thinking of help for you too. From organisations that focus on learning disability and who have a good deal of experience in advice, support and help. Or who know who may well do.
Talk to them about the Camhs too for advice.

My heart goes out to you. You are such a wonderful Mum, obviously on your knees and are being constantly let down by all the services that are supposed to be helping you. My only advice is to try your local MP and maybe use headphones for yourself for short periods to listen to your favourite music and have some you space, when things are calm at home. You are incredibly strong and doing everything you can for your families wellbeing 💎
I also really think someone should be advocating on your behalf as all these services take up a lot of time to reach out to and keep contacting. There are specific autistic charities that will help with this. I do hope some positive shift will happen for you all very soon

Sorry I've not read everything on the thread, but it really sounds like she should have higher rate mobility and a blue bage also.
I know kids much higher functioning that do

My friend's autistic daughter was constantly chasing and hitting her father.

Her doctor prescribed some medication for her that has calmed her and stopped the aggression. Good luck.

Mental health support can be included in the EHCP, was it part of your appeal?

Be careful with SENDIASS, while some are good too many repeat the LA’s unlawful policies.

You could try asking for referral to learning disability camhs. Its different from regular camhs. Less waiting. They support parents to support the kids but you can access medication through them. There was a thread recently on here where some parents said that antipsychotics were very helpful.

That depends on the area. In some places the wait for LD CAMHS is even longer.

I went to the dr, they said they won’t give medication due to her age and said it needed to go through camhs, camhs refused us help I waited 6 months to hear back and they said she doesn’t meet their criteria

I can’t risk her hrc award she needs to meet every point of the criteria with evidence

It’s another day in the house because I just couldn’t face trying to take her out again, my other kids are mad at her and it’s causing tension at home. I need to find something to keep me busy to pass the time as it’s getting to me stuck in the house for days on end

We have similar mines 14 but not delayed.
she didnt want to go to the beach - dp forced it. And she was stood around, wouldnt sit, wouldnt put sun screen on, wouldnt go in sea!
i did tell him!
anyway as leaving she kicked her sister in the leg so then the 10yo was crying.

So for us there were signs but the sister had done nothing. And we were leaving!

Thats the same for my daughter gosh the last time I took her to the beach it was hell, she screamed and cried the whole time, took us 2 hours to get there only to go straight home. Shes always been fine until then and I know people will insist there was a trigger but there isn’t. sometimes she just does it for no reason.

Tried again today, again the same thing, got as far as the pharmacy as she said she would come out if we got some medicine, as soon as she got it she screamed the entire street down, hysterically, to the point everyone was staring at us and someone im a car tried to follow us, im guessing assuming she was being hurt because it’s not normal for a child her age to scream the street down, nothing happened, it didnt, she plans it and im Certain of it, now we are all back home, I have been in the house a week and the furthest I’ve travelled is there in a week because I cannot leave my own home.

And btw on journey to the shop I asked her repeatedly if she wanted to go home and even before we left if she wanted to stay in and she repeatedly insisted she wanted to go out she didn’t she just tricked us this is planned. I wanted to take my kids to the park i can’t even do that. She said the park is fine if we go pharmacy first. Shes now at home and perfectly fine! Not ill at all only ill when we go outside 🤦‍♀️

Is there not a special kind of wheelchair / stroller for her age?
Someone i follow on tiktok has one for her daughter. She is 16 i believe. She has straps on for her legs as she is prone to kicking etc. She has a 12 & 6yr old so sometimes she needs to go out.

If not could your other two not be put into summer camps so they at least get to go out and do something but I also understand you'd need to take them and she would have to come to. Is a car at all an option for you OP? It must be so stressful as you're bound by what you have to do for her but also feel guilty for your other children 💐💐