To just not take her out on my own?

[LittleCatClaw]

I have an autistic child with very high care needs. She’s also suspected ADHD but we’re really struggling to get a diagnosis. She has endless energy and is constantly on the go.

When we go out, she runs up and down, spins, shouts things out and stims constantly. This was manageable when she was younger, but she’s now 14 and it’s becoming much harder. We attract a lot of attention and, increasingly, negative comments. On Friday we had some particularly nasty remarks made about her stimming when we were out, and honestly it really knocked me. I try to ignore it, but it’s getting harder and it’s making me dread taking her out alone.

She never stands still. If I try to stop her running or calm her, she gets louder or goes faster. She’s now too fast and strong for me. I genuinely can’t keep up. She often runs off and I can’t catch her, and she won’t hold my hand. If I try to take her hand, she rips it away.

I’ve thought about using a wheelchair for safety, but I don’t drive and the idea of using a wheelchair on busy London buses makes me extremely anxious. Even though wheelchair users have priority, buses are always packed with prams and people, and the thought of dealing with that fills me with dread. I’ve also looked into using taxis so I could take her out more safely, but the cost would be far too much to do regularly.

I’m at the point where I don’t feel I can safely manage her on my own anymore. She does still go out during the week, she’s starting mentoring and they’ll be taking her out every weekday for around 2 hours, so she won’t be stuck at home. But I can’t cope with taking her out alone anymore. Realistically, she needs two adults when out, and she was 2:1 for school trips.

WIBU if I just stopped taking her out on my own because it’s too much for me to manage safely?
But It will mean her staying in on weekends and holidays. If I needed to do anything I could leave her with my teenage son as she is fine at home (but can’t be left by herself)

I think there was a very similar thread on here recently that may have some useful advice if you can find it.

It’s not unreasonable. You have to do what’s right for both of you.
She’s going out with the mentors (2:1?).

Re the comments. We had this and it’s fucking hard.

That may have been me about the wheelchair but as mentioned I just feel too anxious doing that. Buses are way too crowded here. Whilst I know wheelchair users have priority in theory thats rarely followed and a folding one would probably leave me with nowhere to store it. You are lucky if you get space to stand as usually we end up having to stand between the doors etc.

It’s awful, I overheard two people at the bus stop talking about her and one of them said (amongst other awful comments) “I’d hate to be going home with THAT” talking about my daughter.

Stimming?

Has she had any support for her behaviors? Learning Disability nurses, psychologists and OTs can help with things like this. Does she have an EHCP or Child in Need Plan?
I think you're right to not take her out if it's unsafe and 2 hours every week day will provide her with a good amount of time out, but I'd still want professionals involved to work on making it safer for her to go out.

That’s just appalling. Please remember there are many decent people who will never say this kind of thing. I would definitely challenge somebody if I heard them saying that. Some people are just disgusting.

And to answer your post, of course it sounds fine to stay home if you don’t feel safe to take her out. It is such a shame you don’t have somebody to go out with you though, for your sake too.

She’s allowed an opinion apparently 🙄 thats what I got when I confronted her.

She has a ehcp the only professional involved is the speech and language therapist. The others would need to be paid for privately and I don’t have the funds for that unfortunately. We are waiting camhs but I’ve been told that could be a long wait.

I know that it hurts but honestly they sound vile.

The shortage of services of awful :( There's a freeze on recruitment in the LD services in my area despite them being down from 4 nurses to 1. Have you tried requesting a child in need plan? That might lead to some extra support. Maybe some advice from SENDIAS too about requesting an EHCP review and requesting that an OT assessment/intervention is included in the EHCP.

https://letmegooglethat.com/?q=stimming

We’ve had an annual review but typically they are not a standard part of the review and do not need to be included. The LA refused to make amendments to her ehcp anyway. Im not a fan of sendiass they told me to send her to a pupil referral unit which I absolutely will not be doing.

I think safety is key and like you say she will be going out in the week so not totally housebound .

Clefable. What a very unpleasant response to my question!! I have a disabled child and like OP face certain problems. Stimming is not a word that has been mentioned to me. I thought that the word had been changed by Autocorrect. I hope that you are not always so disagreeable to those who face challenges in life!!

I found it helpful for my daughter to wear a sunflower lanyard. She's younger than your daughter but I feel your pain!

It wasn't so much a question as a single word, and came across as rude. I agree that Google is your friend. I'm sure as a parent of another disabled child you're also tired of explaining things over and over.

Hi OP - my son is also a stimmer (vocal, hand movements and running).

I’ve found that indoor trampoline parks are very inclusive, Oxygen in Croydon for example have a lot of visibly autistic children and teens who stim. I feel quite at home there!

Hi OP - my son is also a stimmer (vocal, hand movements and running).
I’ve found that indoor trampoline parks are very inclusive, Oxygen in Croydon for example have a lot of visibly autistic children and teens who stim. I feel quite at home there

does she go to special school? How do they keep her behaving safely in school trips? If you talk to them they might have aome
ideas for rewards that work for her

Having a ND child we were told at their early age the way forward was to join activies and groups which cater for additional needs. We're lucky there are some fabulous places in our region, they and us as parents can feel safe and not judged as We're all there for the same reason.

'Normal' events, I predicted unpredictability and would be prepared to cut them short, also tried to limit them to those who knew and understood.

Yes, I'm the one who has taken them on my own most of the time and still do, but as I said, more with people who know us. Xx

No She does not go to a special school. She has a tutor.

Does she get DLA?
My daughter did (she's 17 so it's PIP now). A lot of it goes on taxi fares.

I have heard of them but I heard most people think they are a covid thing regarding face masks? I could try to see if it makes a difference thanks

Thank you, I will look into it.