I'm broken, please help me

[PeapodBurgundy]

Buckle up, this is going to be a long one!

DD has just turned 6, she's on the assessment pathway for autism and pathological demand avoidance. For context, I'm a single parent with a DS, 8, diagnosed with autism already.

I am following every piece of advice on how to support DD to understand and regulate her emotions, but after several months of solid progress, the summer holidays have hit, cue a HUGE regression. She was still having emotional meltdowns before the holidays, but we had got past the point where she was lashing out. Due to the lashing out the first time around (for the want of a better way to describe it), the childminder said she was nolonger able to take her. She is the only childminder who picks up and drops off at that school. School has a breakfast club, but it doesn't start until 8.15, I start work at 8.30, there is no after school club. As a result of this, I've had to reduce my hours at work so that they fit within the school day.

The last two weeks of August, there is an embargo on annual leave, so I cannot take care of them myself for the end portion of the summer holidays. I sourced a place in a local holiday club which they attended for a week last summer when the childminder was on holiday.

They attended the holiday club from Tuesday this week (she was with her Dad on Monday as it was her birthday). There were no issues on Tuesday, a bit of a wobble on Wednesday, but nothing major. I got a call yesterday saying that I needed to pick her up as they were unable to manage her behaviour, I had to fetch her back to work with me for a few hours, which was far from ideal, but I had no other option. They said she could go back today. As I was on my way to collect her, I received another call saying her behaviour was unmanageable, and this time they have said she can't go back next week. That was my last available option for childcare, there are no accessible nurseries providing wraparound care that drop to their school, and despite several months of contacting nannies and advertising for them, I cannot find one who is both available and Ofsted registered. I cannot afford to pay childcare without the help I get with fees from Universal Credit.

I have no idea how I am going to cope going forwards. I'm at breaking point with her behaviour, and nothing recommended is making any great progress. While I hope she will settle once back in school, the teacher she will have from September is not very accommodating of children with additional needs, so I anticipate a rough year (it was when DS was in her class). It's not a feasible option to change schools, as (aside from that one teacher) the SEND provision at the school is amazing, and the support she gets despite not yet having a diagnosis is generally brilliant.

We have daily and bedtime routines, clear boundaries/expectations for behaviour, natural consequences for behavioural issues which are poor choices rather than as a result of emotional dysregulation, she gets choices where appropriate, and I simulate choice in other areas (e.g. are you going for a bath before supper or after? etc). She has space to go in our house, which is purely hers, which has the things in she uses to sooth/regulate her emotions, which is effective for her, but obviously only available when we are at home. She has PECS cards and a feelings chart which go everywhere with her, which she was using effectively the majority of the time up until the end of term, but this hasn't been much use at all since. She always has ear defenders, sunglasses, chewellery and fidgets available, so she has things that help her to regulate when we are away from home.

Despite everything, her behaviour is escalating, she is causing constant distress to DS, to the point where I've resorted to keeping them in separate rooms, and splitting my time between them. When she is being unkind to him, I use the techniques recommended by the ELSA with whom she has sessions at school, but to no avail. She either can't or won't acknowledge her behaviour, and how it impacts on her brother in the moment, despite being comparatively insightful to his feelings when away from him and calm.

There is an element of behaviour which I believe is within her capability to control, but managing that is so difficult when everything I try then triggers her from a PDA perspective. We cannot do anything without her ruining it. Every time I try to do something with her brother, she ends up kicking off, every time we go out, she kicks off, if we stay home, she kicks off. Nothing is good enough. When she is calm, she is kind, generous, funny and very creative. She swings from being such a genuine joy to be around to the point where my heart aches, to making me regret my very existence. Nobody involved in supporting her has yet been able to identify any consistent triggers or patterns in her behaviours.

I'm exhausted physically and emotionally, I'm skint due to the cut in hours, and I'm frankly at the end of my tether. I have no idea how to help her, and we cannot keep living like this. I try to stay calm when dealing with her behaviours, as I know how important this is, however I am human, and lately I'm not always managing to keep the calm front on. I'm crabby, short tempered and intolerant. That's not like me, and it's making the situation worse, but I genuinely have nothing left any more.

I co-parent with their Dad, it was a long time coming (several years post separation), but we're in a good place now that we are no longer a couple, and he helps where he can (he called his boss' boss regarding the childcare situation, and has been allowed to put a week of annual leave in to cover childcare next week, despite there already being the maximum number of people on leave). We are a pretty solid team, and he helps as much as he can, but he works full time, lives two towns away, and is responsible for the needs of his nephew (adult with ASD), they live together in the nephew's house, so no option for him to move closer without creating several new issues.

Can anyone with similar children offer any advice? Any strategies which worked for you/them? I will try literally ANYTHING to help our situation.

Speak to your local council about the "local offer" this is a list of services for children with send.

Sounds like mainstream provision is no longer suitable for her and you may need to also try SS for respite? Does she have a disability social worker?

Local offer:

cpdonline.co.uk/knowledge-base/safeguarding/what-is-the-local-offer/#:~:text=A%20Local%20Offer%20gives%20children,available%20for%20everyone%20to%20see.

There is no support available. We've had some short term support in terms of classes/groups etc for her and for me. We're on several waiting lists for other forms of support, but nothing much as yet.

She doesn't meet the threshold for an EHCP (applied twice, both rejected), so a lot of services won't even entertain us for any help.

We don't have a social worker.

Apply for DLA

I applied for both DC, both rejected.

Id get in touch with social services, as she has no diagnosis she wont be able to access a children's disability social worker yet but you may get some family support in the interim, are there no SEN children's groups/after school groups that she can attend- you can pay for these without a social worker or direct payments. I work with children with ASD and it sounds like you are doing everything possible to manage, I do think Dad needs to step up and prioritize his daughter, he is able to work full time so perhaps he could look at cutting his hours temporarily until she is Back to school?

My son was rejected for DLA the first time. We didn't appeal but I reapplied with more evidence about 9 mths later. With what you are describing, you should be eligible. Did you have evidence from school, GP and childminder? Sorry if I'm stating the obvious.

We've been to a few SEND social groups, she doesn't enjoy them, cries the whole time, they overwhelm DS, who then triggers further behaviours in DD. WE had early help out, who said I'm coping fine, didn't stay with us, or refer us on anywhere.

To be fair to their Dad, this is the last week before they go back to school, he's got the week off, and both DC have gone to his house until the weekend when they need to be back for school shoe fittings and optician appointments on Saturday.

I've applied for DLA for DS three times, and DD twice, all rejected. I included evidence from all involved agencies.

You need a lot of help to get the right suppport systems in place. Sounds like she should be eligible for DLA and EHCP but it takes a lot of time and expertise to get it sorted.

I was a single mum for one autisitc DS and realistically I had to stop work due to no suitable childcare and the appointments and time and effort I needed to put into DWP/LA appeals. It all came together in the end (he went to a specialist autism school) but we had to live on benefits for years. We didnt get any hassle for it (no work requirements as a carer) but without DLA you would struggle and the amount would be a lot lower too.

You may have to look for a term time only position as I never found any suitable
holiday childcare for my DS.

OP I’m so sorry I have no helpful advice as I’m not a SEND parent but I couldn’t read your post and not say that you seem like an incredible parent. It sounds like you’re doing everything you can in an impossible situation. I really hope it gets better for you, and someone is along with some more helpful advice than I have. But sending support. 💐

Have you thought about having just one child at home with you and the other at their DF.

I know that isn’t the ideal solution but the pressure of having to keep them separate isn’t either.

At the moment, youre a conduit for her emotions. The good and the bad. But there’s only so much one person can cope with.

You need to find ways of putting in barriers to protect you from the outbursts.

-make sure she had wireless headphones

-access to audio books and a speaker

-think about increasing snacks and reducing meals. Mealtimes can be huge flashpoints, sitting at a table, having to use manners etc. If you increase her snacking (balanced foods not rubbish) and use paper plates. That she can eat not just at the dinner table but in her room or in front of the tv. Have snack available for her so she can get them herself. Also the same for drinks. You can get drink plastic drink dispensers that you can put water/juice in that she can get herself.

-you too should invest in headphones. It helps feeling less triggered by the shouting and screaming. You may even want a soothing playlist for when she is having a meltdown.

-have background radio on in the house. Classical music is soothing.

-keep bedtime early, that she has quiet playtime in her room before bed. So if her bedtime is 7.30. Let her get ready for her bed and be in her room for 6, with supper snacks and let her play until bedtime.

-She may be able to spend time in the bath unsupervised now. So get bath crayons, bath disco lights etc. It will encourage her to spend time in a peaceful warm bath. This can also be introduced nightly as a way of her being quiet and peaceful on her own and getting her relaxed for bed.

Our bedtime routine starts an hour before sleep time, where we wind down with calming activities for a while before getting ready and actually going to bed. Bedtime is actually calm 99% of the time, it tends not to be when there's something worrying/unwanted happening the next day.

Neither of them really do meals, they prefer to graze, so food is usually snack plates/muffin tins filled with a mix of picky items put out for them to eat as they choose.

The majority of school holidays are fine, as between annual leave and TOIL I build up doing evening and weekend recruitment events I generally have enough to take the majority if not all of the summer holidays off. I also take them into work with me odd days in the holidays which they love. I teach childcare in an FE college, so we have loads of toys and sensory resources available, plus the interactive boards so I can put up Disney+ etc, so we sometimes go in for the day all together, armed with snacks, and I get a reasonable amount of work done while they play in either the same classroom or adjacent ones. The sticking point is the last two weeks of August. A TTO contract would be possible, but even TTO staff are contracted to be in for that time, so it would only lower my wages further, and not particularly help. I'm reluctant to change jobs, as I work part time but get around the same wage as full time at NMW so UC aren't putting pressure on me to work more hours. Also I have an incredibly understanding manager, who flexes things as much as he possibly can for me. For example when the childminder first pulled service, he immediately changed my timetable to allow me to leave for school pickups, and arranged short term cover for the start of each of my morning lessons so that my students were seen to until I made it into work. That got me through to the end of that academic year. He then worked with me to get me as many teaching hours as possible into the window I can physically be in work for, so I only needed to drop half a day from my contract. Not everywhere would be as supportive and flexible as that.

In terms of splitting the DC between houses, it's not possible, as their Dad lives two towns over, and doesn't drive, so wouldn't be able to get them to school. He also starts work at 8.30, but doesn't finish until 5.30. He's on NMW so can't afford to drop hours.

Sorry to sound so negative, I really do appreciate you all taking the time to reply.

I'm going to try some of the regulation techniques suggested though, DD loves music, so the background classical could be very soothing and helpful. Anything is worth a try.

*school holidays, not summer holidays