Possible situation with my mum around DD’s autism

[JimnJoyce]

Hi all I’m not entirely sure of what im looking for here, maybe similar situations/ helpful advice/ outcomes.This will probably be long though. sorry.
DD14 is. currently going through ASD assessment process and we expect to receive the report from the psychiatrist and ADOS assessor next week. During the first assessment where I was with the psychiatrist I did ask her if she thought DD was autistic and she said yes definitely. We had only done the first 50 questions and she was already scoring as on the spectrum. But no official diagnosis yet.
Bit of background to my thread title- my parents in their late 70’s live abroad and have done since before I was pregnant with DD.
Since she was a few months old we have visited every year and usually had a great time. DD loves them and loves when we go for a holiday.
I’m a lone parent since DD was 3 and these visits have often been the only time during the year that i get any time to myself and to chill a bit. DD has been unable to cope with school for the last 12 months also so been at home the entire time.
Our visits last year and the year before when DD was 12 and 13 have ended up very fraught. we didnt go in 2020 as Covid and in 2019 I took 2 of DD’s cousins with us so a very different dynamic.
2021 we stayed for 2 weeks, last year I cut it down to 9 days.
Last year and the year before started off great but within 5 or so days of being there my mum has started to go off about DD saying she feels like DD hates them and doesnt want to be there because she ignores them and doesnt talk to them. She often drinks too much in the evening which is when these rants tend to start so theres no reasoning with her and she goes on and on about this for days. This means I’m caught between my mum going on and trying to shield DD from it all. It causes me terrible upset and i end up walking on eggshells the rest of the time we are there. Last year it was so bad I ended up bursting into tears as I couldnt cope with the things she was saying at all. Im usually a really strong person and rarely cry.
I just thought DD was being a fairly typical teen, wanting to spend time texting her friend or playing online games, spending time in her room etc. I always felt DD was comfortable enough there to be herself. She joined in at meal times when we all ate together, and with board games in the evenings after dinner, in the pool during the day with me and GP’s.
My mum also has form for falling out with various family members over the years.
The psychiatrist suggesting she was autistic initially came as a shock to me but in hindsight it explains quite a lot, shes an only child so I’ve never had any comparison.
My problem now is whether we should go to visit my parents this year and going forwards. I honestly couldnt cope with mum behaving the same way again and dont want DD to realise if she does. My parents know about DD’s assessment and seem interested. I love them both, DD loves them and I know they love us. They are elderly and we dont get to see them often although we text quite a lot ( i’ve pulled back on the amount of info I share about DD now though )
Also if we dont go over we wont get a holiday at all as I cant afford it. Due partly to DD’s issues and my own health issues I am cutting down my work hours from next month which will impact my finances a lot.
I doubt my mum is going to change, DD is just at the start of this process and has to be my focus but I cant not see my parents. What do i do?

If DD is eating with you/DM, playing games of an evening and spending time during the day around the pool that’s plenty of time spent with DM. I would have a frank conversation with DM and if she can’t keep her opinions to herself you won’t be visiting/will cut your visit short.

Until you mentioned lack of finances I was going to suggest getting accommodation close by but not with DM so you weren’t together 24/7. If it’s not too far can you cut the time down further, limit it to e.g. a week maximum?

Can DM visit you? So DD is still within her own environment?

Separate to the issue with DM, has DD got an EHCP? Just because DD is at home doesn’t mean you are the one responsible for providing education and supervision during that time.

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

Have you applied for DLA for DD? And potentially PIP for you depending on your health issues. Also UC. There are also grants that you can apply for that can fund holidays e.g. Family Fund.

Can DM visit you? So DD is still within her own environment?

Separate to the issue with DM, has DD got an EHCP? Just because DD is at home doesn’t mean you are the one responsible for providing education and supervision during that time.

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

Have you applied for DLA for DD? And potentially PIP for you depending on your health issues. Also UC. There are also grants that you can apply for that can fund holidays e.g. Family Fund

Hi no EHCP yet but im sure we will be going down that road, the Psychiatrist said DD is entitled to DLA but reading up on it i dont think its an entitlement.
No social care assessments ( what are they? ) Or carers assessment ( i work full time currently anyway) im not sure what assessment I'd need.

As you can see Im a bit clueless as we are just at the beginning of this so my current knowledge is very low. And until my hours reduce in March I wont have the concentration or focus to research properly to be honest.

Sorry didnt realise id copied your post!

I do get a small UC top up already

You need to apply for an EHCNA, IPSEA have a model letter you can use. You should also email the Director of Children’s Services requesting provision under s.19 of the Education Act 1996. If you are ignored or they refuse post on here and you’ll receive advice on how to force the LA.

You should apply for DLA, the psychiatrist is right DD would meet the criteria. The Cerebra guide is helpful when completing the form. If DD then receives DLA you will get extra UC with the carer element and disabled child element/severely disabled child element. And if you earn below the threshold you can apply for carer’s allowance.

Social care assessments are to look at what help and support you and DD need due to DD’s disability and you being her carer. You can have a carer’s assessment and work full time. Depending on what your health needs are you may also benefit from an assessment for your own needs.

@JustKeepBuilding thank you so much thats really helpful

Definitely apply for DLA you can get Dd more help with it. She sounds lovely and your mum sound quite hard work. Just go for shorter visits to maintain the relationship but maybe more of them? Ultimately you need to find people who are going to love you both as you are but grandparents are special even when they don’t really get it.

Just wanted to update on this as thought I had it sorted but now its all kicked off again.

DD got her ASD diagnosis at the end of February.
I also had a talk on text with my mum as she kept asking when DD and I were going to go over and visit. I said can we please have no more nonsense about DD not loving you or not joining in now we have the ASD diagnosis and she said Absolutely.

So I booked our flights for July, spending 9 days with my parents.

We were having a conversation a couple of weeks ago and she was asking how DD's sleep was going now. I explained it was pretty upside down still and was proving difficult to change much but we are trying.
She immediately said
'well if you will let her sleep all day and be awake all night, what do you expect'? (i try really hard to not let this happen but it sometimes does). She then carried on with 'you're the only one who can help her with this, you're her mum, its up to you to do it' and then she said 'but I'll say no more on it'.
Given that when I told her DD had been diagnosed with ASD she said 'oh I'm so sorry to hear that' I think I just lost it a bit and finally snapped.

I really had a go at her and told her how bad her words make me feel and again makes me think she thinks Im a bad mum.

She now hasn't spoken to me in 2 weeks and I found out last week she has fallen out with my sister again and hasnt spoken to her in 6 weeks.

Im so sick of all this but still feel terrible for finally getting it off my chest.

I have no advice but I do really, really feel for you. My DD is a year older and in the Pathway. We have difficulty with sleep too although she's tried Melatonin and it's helping a little.

I strongly suspect my M is autistic too and is also very judgemental.

I've come to realise that she will not change. She thinks she's right over everything and finds it bizarre if we ask her not to behave in a certain way or not to criticise, she simply doesn't see why she should.

What have you decided to do about the holiday?

honestly still not sure, havent heard from DM in 2 weeks though.

So I have decided to go ahead with the holiday (mostly because DD really wants to).
I sent my parents a very clear message before deciding though.

' so before we come in July theres a few things you need to know.
DD will probably have social and less social days in Spain.
She’s so desperate to come over and see you ( thats the truth ) but its still a big change from home for her. Shes not always coping well with noise, lots of people, the heat and change in general. She might say the odd inappropriate thing but no malice intended.
She will probably spend a fair bit of time in the bedroom but also with us. She needs time away to decompress if things feel a bit overwhelming for her.
None of this means anything other than shes autistic and being herself and not having to mask or pretend.
She still has a sense of humour, she still eats well, she still loves the pool and she loves both of you. She just may not show it in normal ways.'

Mum sent back a thumbs up...

I hope that they can manage to behave themselves. I’m currently away with my DD and I've just spent an hour in another room so that she can decompress alone.

hi @SiouxsieSiouxStiletto I hope you and your DD are enjoying being away.