No longer managing public outings with my autistic child

[OhMyCherryPies]

What do you do if you can no longer manage to take your autistic child out anymore? My child is 15 but she’s always been hard work but she has got harder as she’s got older, she is aggressive, runs off, no danger awareness, but a new thing shes started doing is just screaming at the top of her voice, doesn’t matter where we are. She will just start screaming.

Yesterday we had to get off the train as she was running up and down a packed carriage screaming her head off. Shes too fast for me now and I struggle to stop her or keep up with her, I have two teenage sons (though younger) who help me with her but it’s not fair on them either and they both get very upset when she’s acting like that (one is autistic himself so he gets very upset at the unwanted attention) we had to get off the train in an area I didn’t even know and wait till she had calmed down before we could get on the next one in the pouring rain (nothing had happened to cause the outbursts), it was horrible as she kept attempting to run off. I just feel like I’m not able to manage her outside on my own anymore and dont know what to do, is there medication to help her to be more calm? Someone suggested reins for her but I don’t think that would be suitable for a 15 year old and I think we’d probably attract a lot of negative attention walking a 15 year old on reins. Theres got to be medication to help her? I went to the drs but they didnt help much.

Could you tell us why she's not in school? Is it because there's no appropriate school place available?

If she were in school this would be the best way to access help, as well as have a few hours of daily respite during her school day.

Are you strongly opposed to a residential setting or have you tried to access this and been told there is no appropriate availability?

It's not fair on your other children not to find help in some way, whether carers or a residential placement, but I understand that you're in a very difficult situation and probably getting through the day is hard enough without starting extensive research, paperwork and potentially a battle to access what she needs.

Oh and having worked in a special setting for young adults with autism plus co-occurring intellectual disabilities, most of whom had a shopping list of additional diagnoses and were on a lot of medication - I'm afraid there isn't a medication which will totally prevent this behaviour.

What medical team does she have? Is it just your GP or does she see a psychiatrist or neurologist? Does she have a social worker?

As you are a carer, services should reach out to you but sadly that’s not the case. Crossroads was a local service that did actually reach out to me…. They basically come to your home when you have appointments/ have to be somewhere and look after your child. Does she have noise cancelling headphones to limit the outside noise and overwhelm? Bach flower remedies did help my daughter in stressful situations but she is more high functioning. Also EOTAS tutors came into the home via the council. They taught English, maths and science and was a game changer for her. She was finally able to look adults in the eye ever and trust and feel comfortable with them. You need to apply yourself again. It also gives a routine and some rest-bite and reassurance for you.
There’s also other organisations that do rest bite for other children at home. Dont know the names I’m afraid but it’s generally a weekend away so they have a break. Your local carers centre should have given you this info already but as I said sadly, it doesnt happen and you need to do the leg work.
Best of luck with everything, sounds super stressful and draining on a day to day level. Just try and remember you aren’t alone in this although it feels so isolating. Keep us updated ❤️

No as they said she isn’t safe in the community

Yes I am but the LA won’t provide it and say mainstream appropriate. So I have to appeal it.

She's simultaneously not safe in the community and suited to mainstream school?

There's a special needs board on MN (you've posted under parenting generally) - the special needs board might be a good place to find support and practical tips, both for your school appeal and carers appeal.

It's exhausting and unfair that when you're dealing with so much you have to do more in order to access any help, but it sounds as though every member of your family - you, your daughter, your autistic son and your neurotypical son, will all be much better off when your daughter is in an appropriate school (a special needs school school be able to help her learn coping and communication strategies, offer suggestions for simple tools and aids and generally improve her quality of life) and you have carers back in place if at all possible.

It's too much to think about all at once, but it may be that she'll need a suppoted living group as an adult especially as she's already too much for you to keep safe outside the house. You need a bit of time where she's safe at school or with carers to start looking into that.

There is no medication "for" autism to help her cope, though a lot of Autistic people (especially those with co-occurring conditions) are on lots of medication for those co-occurring conditions. In my experience even people on very high dosage of quite hard core medication still have episodes of behaving as your daughter does, if that's been normal for them previously.

Medications can help with anxiety, depression, psychosis where relevant, other co-occurring psychiatric disorders, and obviously is necessary for epilepsy which is a massively common co-occurring condition in the Autism with learning disabilities population - and short term can help somewhat with overwhelm, but they won't stop her running around screaming if that's a maladaptive strategy she's developed to cope with overwhelm/ frustration/ other triggers.

Have you ruled out pain or digestive distress and any pattern of behaviour around her menstrual cycle? Those can all be triggers which can be addressed to a degree.

Do you have a social worker? I would ask for a needs assessment from your council's learning disability team - this should include SALT, OT, Psychology and possibly a psychiatrist who can prescribe anti-anxiety medication if necessary. Our adult son has autism and LD and since taking sertraline there's been a big drop in challenging behaviours that were due to anxiety. You could also be eligible for direct payments to facilitate hiring a PA who could support your daughter at home while you take your sons out. Good luck OP, I have been there and it's extremely difficult - you need help and support 💐

Ah OP - I'm so sorry you are going through this, and of course you need to find a way to access the world with her. Life can become so limited when you're trying to manage the needs of of a child with SEN.

I am in a similar position, although my DS is younger. We have reached absolute crisis point, we can't get respite & honestly, his behaviour means we can't use a PA either. He's now struggling to access school.

We are now exploring medication for him - he's still awaiting an ADHD assessment, but the psychiatrist he is under through CAHMs has suggested we may be approved to try Risperidone or Aripiprazole. I'm afraid I can't yet attest to whether these medications will work, these are what have been mentioned to me.

I think that you need to get her back into the education system as soon as possible, even if she doesn't go in much. You really need it to not just be you who's responsible.

ok well tribunal is a years wait

Shes under assessment for adhd as well i should have said so medication would hopefully be an option when she’s diagnosed, the LA dont care as it’s saving them money me having her at home

People who are ignorant might laugh.
My DS16 takes Tercian every evening to wind him down. It's mildly sedating so it will keep her calm. What kind of help do you get OP?

I’m so sorry OP, there isn’t any support for people that are ‘coping.’ Please know that you have my empathy and compassion although that feels really weak and insignificant. What I can say is anyone that’s judging you isn’t walking in your shoes and certainly doesn’t understand so who gives a shit what they’re thinking anyway

I would ask social services for some additional support, a work colleague has a primary age child with autism and they get respite care so they can do things with their other child. They've had a lot of support through social services because Mum wasn't (and still isn't) coping with being in sole charge when colleague is at work, who referred them to some local charities/support groups.

If you're appealing the EHCP make sure you appeal the social care section too.

Have you requested an expedited hearing on the basis DD is out of education? If you are the poster I think you are, you had already submitted an appeal, hadn’t you? In which case it won’t be a year from now.

Have you pursued alternative provision? It isn’t acceptable for the LA to say DD’s needs can’t be met, and you don’t have to accept them saying that.

I would try a wheelchair, SN buggy &/or harness. Yes, accessibility can be an issue, but it is for you already just in a different way.

I understand it is hard managing with other DC too, but I think careful thought needs to be put into where, when and how you take DD to places. Public transport can be incredibly overwhelming, especially on a busy Saturday. Have you looked at a taxicard?

Request social care assessments. A carer’s assessment for you and an assessment by the children with disabilities team for DD. On their website, Contact has model letters you can use.

Is DD under paeds &/or CAMHS?

It’s not been a quick process i have been waiting almost a year, i didnt ask for expedited because she needed new reports from professionals and I couldn’t afford to pay for those privately so I had to ask the LA but they really dragged their feet on conducting new reports. Her reports were 8 years old. Im in London not heard of a taxi card but having looked into it it says she needs HRM which she does not get. I asked dr to refer to camhs as I wanted anxiety meds, he didn’t, he referred her for counselling at a place I cannot get to.

Unless your hearing is imminent, request an expedited hearing now.

Do you now have good reports? If not and you can’t afford independent assessments, check if you are eligible for legal aid and if not look at charity funding.

Unless DD is 16 soon, I would look at a DLA change of circumstances. If DD is 16 soon it is probably not worth it, but start collating evidence ready for PIP.

I would go back to the GP to request a referral to CAMHS. If they won’t, you could ask the school nursing service (sometimes called 0-19 nursing service. DD does not need to be in a school for them to help) if they will refer.

Im not risking her award as she currently gets HRC which she never did before she only ever got MRC . She got HRC on her last award 2 years ago and im not risking them changing it. If I do a change of circumstances they can take her award away entirely. She turned 15 end of march.

What can you do about learning to drive op? Just as a long term solution?

I would buy a buggy. You need one, thats what theyre for, have you looked into this?

I know you must feel so stuck and helpless. But youre doing amazingly! You've stayed and persevered!

Whats the social services support like? I know you said that someone came and quit, can you look at that again?

Can you get respite care to give you a break? Can she attend a care facility during the days?

My heart goes out to your two boys. Your oldest likely has no idea of the stress of it all!

Do your boys have dad's at all? No worries if not, was just thinking about childcare solutions

Youre not alone, op, there are loads of women living like this, although it must not feel like it!

People are going to judge. End of. The best way to deal with that, easier said than done, is to remain calm and in control, ensuring your boys are safe.

We have a sen parents chat, https://www.mumsnet.com/talk/_chat/5493437-sen-parents-support-group-thread-1

But I just wanted to say that youre doing your best and thats enough.

❤️

As a very desperate measure, what about going to the social services and saying you cant cope anymore? Saying you have to give her up?

Thats not what you want to do, I imagine, but being that shes 15, it might be your best chance to force them to act?

❤️

Thanks for the link i will have a look. no their father is not in contact and hasn’t had contact for 3 years (entirely his choice) i am not planning to drive, I do not work because of her needs and I can’t afford lessons or a car so no plans for that. Father has disappeared off the face of the earth so no maintenance and dla only stretches so far. She had two workers from the LA they said she isn’t safe even with 2 members of staff and that won’t change. They weren’t able to provide 3:1.

I don’t want her taken away or my other children

Of course not, op, you clearly love her too much

But i'm sure ive read about parents who've resorted to drastic measures to get the LA to listen? Could be worth looking into, before she turns 16? x

Something has to be done here, how can you continue like this 💐😞 - how old are your boys? x