Help with dd (autism)

[SpinningFloppa]

I feel like dds behaviour is very difficult, she’s always had challenging behaviour but it’s getting much harder now she’s getting older. She’s getting bigger, stronger and faster. I don’t know why people always say it gets easier when they get older as that just isn’t true for us. Dd still runs off or runs into the road, she lies on the floor, refuses to walk, screams, she can be aggressive during a melt down. I’m finding it hard to avoid her triggers as her triggers are everything. Road works are a trigger she won’t walk down the road if there are road works even if there is no other way to go. The bus being on diversion she won’t get on the bus, the bus local to us is currently on a diversion but it’s after the stop we get off at so she doesn’t know but now she’s seen signs up she is refusing to get on it 😥 she won’t walk past certain houses, one because it has a poppy in the window. So I cannot avoid her triggers it’s everything. A skip in the street she won’t pass it. If we are on the bus or out and anything unpredictable happens she will scream the place down and kick off and jump up and down, this happened the other day because the driver missed someone’s stop so she just started screaming the bus down, it wasn’t even our stop. How can I manage this as it’s getting impossible I’ve posted on an autism Facebook group but all I get told is to not take her out. I’m a lone parent so that isn’t possible or realistic advice. Any help with this?

Yvonne Newbold’s resources are helpful for VCB.

Have you had social care assessments? A carer’s assessment for you and an assessment via the disabled children’s team for DD.

Have you considered a wheelchair or SN buggy? Can you drive?

If DD doesn’t already have an EHCP you should request an EHCNA. If she does have an EHCP request an early review.

Does she have anny understanding or way of expressing why she doesnt like roadworks? Is it the noise, the fact the road looks different ? Do they frighten her or make her anxious?

How old is she?

Is she verbal?

She’s 11. She just doesn’t like them, she doesn’t like things being there that shouldn’t things out of the ordinary or what she’s use to, with the bus she was able to tell me she didn’t like that the road names weren’t coming up (London buses) and it was a * on the screen. She said she doesn’t like the ‘star’. She is verbal but it’s very very limited she can’t really hold a conversation she mainly just uses echolalia though she can answer some basic questions. I don’t drive and sadly that’s not an option. We’ve just had another issue on the bus today and the driver started shouting and swearing. She has an ehcp.

She wouldn’t fit into a buggy she’s taller than me and a wheelchair would make things extremely difficult with regards to getting on the bus 😔

Does she have anything that works as a distraction at the moment? That she could use when you are out on transport? Anything that would hold her attention or she could use to help calm herself?
Like music on headphones, audiobooks, games on a phone or handheld game like a ds, anything that you do with her that occupy her, like counting games etc ?

Have you tried social stories?

Maybe laminated pictures of familiar landmarks of your bus journey on a keyring ring she can flip over instead of looking for the road name.

On the TV show A Typical the mum had made the son a boardgames called Sam's walk where the obstacles in the game were things that they might encounter around their local area. Although it's a TV show something like that might be worth doing.

DD would fit in a SN buggy. There are ones for adults. DS1 uses a SN buggy as he prefers it to his wheelchair. A SN buggy or wheelchair might make catching buses logistically more difficult but it could make life easier for DD and therefore you all.

You need to ask for an EHCP review.

She sounds very similar to my dd. My dd is now almost 17 and although some things have got easier, other things have got worse. It’s much harder when they are bigger (dd is bigger than me now) and doing it alone is extra tough. Dd has had a day of meltdowns today due to her phone needing to do a update, the phone is a new thing I am trying to get her used to using for safety and it’s just back fired on me and caused meltdowns. I am lucky that I drive and we have a car through PIP, though the car also causes meltdowns due to the fact it has sensors and beeps when ever I drive too close to somethings or if the tire needs pumping up (which it did today).

Preparation is key before going anywhere, using pictures to explain where we are going and what we are doing works a treat as do social stories but I don’t always have the time or patience to do this and of course sometimes things don’t go to plan.

You have my sympathy, it’s very hard at times and going anywhere is stressful.

Is using a taxi possibility? If DD is eligible a London taxicard can help with the cost.

Thanks all. It is so hard I dread taking her anywhere but I can’t keep her locked in the house either! There’s not really a day that goes by that she doesn’t have a meltdown over something and now she’s getting older they are getting harder.

She has an iPad and that helps to distract her when she’s out but that comes with it’s own issues, she likes to listen to music on it but won’t wear headphones/earphones (believe me I’ve tried) so that’s something I don’t like her taking out as people will be rude about the music. She has an ehcp but it doesn’t need updating she is home educated it’s not of any benefit to us now. I can’t afford taxis that would be 4 a day as she comes with me on the school run to collect my other children from school (this is when we get the bus) that’s why using a wheelchair would make life extremely hard as you can imagine the bus is crazy busy in the mornings which doesn’t help as she finds that stressful as well. Thanks for the other suggestions I’m taking them all on board.

If you are struggling to home educate why not stop and put the responsibility back on to the LA? If attending a school is inappropriate there is EOTAS. That way you can get OT, SALT and MH input, which sound desperately needed.

How far is the school? Could you walk? Or try to move your other DC to a closer school you can walk to.

You could get a SN buggy that you could fold if there is already a wheelchair or SN buggy in the wheelchair space.

No she would never walk, she doesn’t walk very far and when she attended the school she wouldn’t walk either, getting the bus is the only way to get her there as she doesn’t enjoy doing the school run daily (when she doesn’t attend) but can’t be left home alone. The school wasn’t our closest one but we didn’t really have a choice as we moved half way through the school year.

In regards to school they said she was fine in mainstream and didn’t need a special school so I chose to take her out as there was no chance I was sending her to mainstream. Her behaviour was just as difficult in school she use to attack the teachers and children and even escaped the school despite having a full time 1:1 but mainstream is fine for her apparently!

If you can avoid her triggers it would be great for her but I imagine it is difficult to do that. I wasn’t diagnosed with autism until I was 25 as pregnant with ds but I used to really struggle with going a different way. There were two ways to get to TESCO one way I liked and one way my mum liked. When my mum convinced me to go her way (which was rare) I felt really weird and just wanted it to be over the entire time. But we obviously didn’t know why and she probably just thought I was being silly 🤷‍♀️

I didn’t mean DD walk, I meant you walk to solve the logistical problems of using a wheelchair or SN buggy.

Did you go to Tribunal? The vast majority of appeals are upheld.

We had this issue with the library opposite our house, my daughter tried to go in there one day and they told her to go away, after that she wouldn’t pass the library and insisted we walked all the way round the entire estate if we needed to go anywhere, my other kids would get annoyed with her as it meant a much longer walk, it was about 6 months before she would pass it again!

Oh I get it now that makes sense. No unfortunately not I decided to home educate her so missed the deadline for tribunal.

You should request an early review of the EHCP to try to get the right of appeal.

Its so difficult to juggle everything when you have other kids as well.

Firstly If your DD has limited speech, echolalia then she absolutely would not be the fit for a mainstream education. Who told you that? Have you visited any special schools and discussed your daughters support needs and working levels? I think she would fit the profile of a special school and she would get more support and then you would not need to HE her.

Sounds like she is highly anxious having to do the school run with you so everything is a trigger for her. While she is so anxious everything will set her off, my son is the same. Its an impossible situation. I think you need more help and maybe get help with an EHCP review and requesting a special school and transport.

Her senco, autism outreach, ed psychologist, sen officer for the LA. It was said in her annual review all professionals said mainstream, it’s listed on her ehcp. I said I wanted sen school for secondary but they all told me she was better suited to mainstream so she was given a place at a mainstream secondary school.

Anxiety meds. Dd started taking them at 12. Totally different child. Still autistic but she copes with life far better.

How old are your other DCs? Do you have a social worker? Wondering if you might be able to get some respite hours and use them to cover drop offs and pick ups so DD wouldn't need to do the school run?

LAs and schools often say MS is suitable but parents successfully appeal for SS, so don’t let that put you off.

Floating bean is spot on, that LA's say mainstream as its a cheaper option. Doesn't mean that you can't fight it. Have you had any independent advice on fighting this and requesting a special school and going to tribunal?

Have you visited any special schools or independent schools if your daughter is cognitively working at higher levels?
It may be worth considering fighting this and getting some advice. LA's always go for the cheaper option.