To ban my bullying sister from seeing my kids?

[PontinsBeach]

I’ve got 2 teenagers just a year apart, a DS15 with ASD and DD14 with anxiety and depression. Both are school refusers, I am trying my best and working with relevant authorities. DD often spends all day in bed (DS wakes up but will play video games) and I have to WFH but I make sure they come out at least once a day. As soon as I finish work at 2pm (I start early) both DC will come on a long dog walk at a country park and we’ll go to a cafe for cake/coffee afterwards.

My sister has a holier than thou attitude and is always giving me shit about my kids. Her adult DD and DS are ‘perfect’, both went to top RG uni’s, never had any kind of issue and now both live abroad with great jobs and she is constantly comparing them to my DC.

On Friday, I had to call in sick due to a cold. Around 1pm whilst feeling like shit, with DC still in bed, I get a text from Dsis announcing she was 2 minutes away. She does this often, I was fuming as house was a tip. When she arrived I told her I wasn’t well, and she just sort of pushed passed me and said “Oh well I’ll make you a cup of tea!!!!!”. She set off my 2 Alsatians who were barking for England and I had to settle them.

Then, as expected, the arsey comments about my kids started. “Little madam is in bed I take it? My daughter was always up by 6 on a weekend for her part-time job!” “What’s he doing? For goodness sake, you need to get him a proper hobby. He’ll wither away, no wonder he’s skin and bones!”. Her DH has ‘aspergers’ (yes I know it’s not called that but that’s the term she uses) and she thinks she’s the autism expert because of it, and implies my DS in non-verbal due to my failings. DS wears headphones when out for sensory reasons and once in a coffee shop she tried to bully him into removing them saying it was rude. Her husband who has a great job in finance is a completely different kettle of fish to my son FFS.

Her kids always had a very regimented routine, both with a long list of chores and several hobbies each, they never had ‘chill’ time. This is simply impossible for my kids due to their additional needs, they would not cope with me forcing things on them. As I say, we’ve come up with our own plans with authorities. DS is getting a grant so I can take him to places for enrichment (and is also slowing building a relationship with a key worker who will take him out) and DD may potentially be able to start a college course early at 15 at a small local animal care college, which is an environment I think she’ll thrive in as the rough, large local comp nearly killed her (horrific bullying). So it’s not like I’ve got nothing in place for them.

She just went on and on. Bla bla bla fucking bla. My kids cannot stand her as she always makes them uncomfortable, goes into DD’s room whilst she’s sleeping and lectures her. Dsis works part-time so is here a lot. Last Monday it was just before DD was going into the shower to get ready (and she was doing well that day, up at 12pm and expressing an interest in doing some baking), Dsis arrived, went up to her room and went on for half an hour about how DD should be up and ready before noon. DD was in tears afterwards and went back to bed for the rest of the day, it set her back.

Anyway, back to Friday, she gave me my drink then took herself upstairs. I could hear her. She tried to talk to non-verbal DS so I went up, and as usual, she looked shocked and appalled when he blanked her. She went into DD’s room with DD fast asleep started loudly clapping her hands (As usual. It’s also a huge sensory trigger for DS and in the midst of everything I heard him slamming his bedroom door repeatedly) shouting “Right you! Up now! You can’t live like this!!!! Your poor mum is ill and you need to pull your weight!!!! Come and make her some soup!!!”. In the end it was humiliating for DD as she had slept just in bottom underwear (her thermostat is broken and her room is boiling) so when Dsis pulled her duvet off she was exposed. DD then started crying and begging me to intervene. This is notable behaviour for DD as she usually doesn’t break down until Dsis leaves (Dsis is a huge anxiety trigger for her) but this time she started crying and having a panic attack in front of Dsis, DD finally ‘snapped’.

I lost my shit, this has been happening consistently for years and I was done. I grabbed her arm, pulled her into the hallway, told her she was a fucking disgrace for bullying my vulnerable kids and basically said “Fuck off and don’t ever talk to me again.” She continued lecturing me about my parenting so I threatened to call the police to get rid of her then she sheepishly left. I then sent her a message saying if she turns up again, she’s not being let in, and forceful attempts WILL result in me calling the police as I feel I have to safeguard my children from her. I also sent a text to my parents to inform them I am done with her. My parents are angry with me but I can’t have her around my kids anymore.

I think OP's sister and family have found this thread....

By that, I mean they're clearly posting on here.

@Thatsnotmycar how do you know? How do you know there are other safe, needs appropriate settings that they attend? How do you know those setting have places and not years ling waiting lists? How do you know if what is available is appropriate for the children's needs? And most importantly why do you assume this is OP giving up, rather than the best plan for her children as agreed by her , the LA and other professionals involved?

I am not ignorant, uneducated or offensive. Functioning labels are harmful, as you are demonstrating. I didn’t speak for all but your “we prefer” and ”we feel” certainly come across that way.

High functioning is to do with IQ - link 1, link 2. All high functioning means is someone’s IQ is over 70.

AS is not the same as HFA. The difference is to with language. This is one of the first links on google explaining the difference, I am sure there are more if you look. AS is not still diagnosed. It is now all encompassed under the umbrella ASD.

ASD is not a linear spectrum from mild to severe. You may find this and this link helpful. In order to get a diagnosis one must have persistent difficulties that “limit and impair everyday functioning”. Nothing that limits and impairs everyday functioning is mild. When people say mild autism they mean it affects others mildly, not the autistic person.

My god this thread is a thread of tell me you don't understand depression/anxiety/ASD without telling me you don't understand depression/anxiety/ASD.

OP it sounds to me like you are doing the best you can for your children in difficult circumstances. Your DD needs to know you support and understand her, which you are doing. You were right to kick your sister out, you will probably find your DD's metal health will improve if she knows your sister isn't going to be coming around and bullying her.

Just because OP is liaising with the LA doesn’t mean she has got all the support she and her DC are entitled to. LAs are well known for rationing support unless they are forced to provide it. That isn’t a judgement of her, but of the LA.

There is other support OP could be accessing now. Her DC are entitled to a full time education, including SEN provision, under s.19 of the Education Act 1996. That should have begun once it became clear her DC would miss 15 days of school. That obviously isn’t in place, and it should be. That doesn’t necessarily mean formal learning if that isn’t appropriate for their needs, and it doesn’t necessarily mean attending another setting.

DS obviously has an EHCP if he has previously attended SS so should have provision in place via that, and if it isn’t already she needs to ask for an early review. The EHCP should include therapies.

And support she could be applying for. For example, if DD hasn’t got an EHCP she needs apply for an EHCNA now. OP needs to ask for social care assessments for both DC and herself if she hasn’t already or if she has ask for an urgent review.

No, I am not speaking from a place of ignorance or privilege. And I haven’t judged her. I am speaking from a place of experience of disabled DC and knowledge of the law and SEN system.

Please quote where I said the OP was “giving up”? You can’t, because I didn’t.

OP’s DC don’t have to attend anywhere if that’s not appropriate. Provision can be made at home.

With EHCPs which the OP’s DS at least must have if he has attended a SS waiting lists are irrelevant. If the provision is in the EHCP as it should be the LA must provide the provision. If the NHS can’t or won’t provide it the LA must. If the LA refuse the OP can force them to. If the therapies and other provision aren’t in the EHCP she needs to request an early review as they should be.

How do you know if what is available is appropriate for the children's needs?

SEN provision doesn’t work like this. Provision must be made to meet DC’s needs regardless of what is available or normally provided. DC shouldn’t be forced into provision just because that is what is available.

Just because OP is working with the LA and professionals doesn’t mean they are receiving all the support they are entitled to. I have yet to meet any LA who tell the parents everything that is available and don’t make up their own policies.

Thanks Thatsnotmycar. I was more curious as to how you know she hasn't been requesting/accessing this support and what specifically you thought was missing. From the OPs posts and the things you suggested, it's still not clear to me that she hasn't been engaging the LA for these measures and used what is available in return.

It's not always that easy though. DS is suspected ASD, school refusing.

We have involvement from the Engagement Team, we're meeting with the Inclusion Team soon, he's had a CAMH's appointment, recently started seeing a therapist. I've spent many, many hours on the phone trying to get him help. He's on the waiting list for assessment for ASD. He's on a bunch of other waiting lists for things that might help.

I also have to work. My husband has to work.

Yes, DS plays videogames for a lot of the day. Her uses them to regulate. Taking that away from him world mean more meltdowns. His meltdowns are violent.

What are we supposed to do? Homeschool him? We need to work and frankly during lockdown it was a disaster and damaged his relationship with us. We know the current situation can't continue, but we need help that we're just not getting. The only advice we've had with regards to the meltdowns is to avoid triggers...

@Thatsnotmycar Yes you are being ignorant and offensive. HF labels are helpful, they are not harmful. Many of us prefer it, DON'T tell us how we should identify ourselves. We find the 'autism' blanket label to be offensive, and something that sets us back, that is our right. Many of us prefer the term Aspergers, that is our right. And you have no right to say we are wrong in how we feel. If you posted your ignorance on the online "Aspie" support forum I'm a member of, you'd be left in no doubt, and in no uncertain terms, just how offensive and ignorant you are coming across as. You would not leave that forum with any doubt, that's for sure.

OP you clearly love your children and are listening to their needs. Well done, Pushing and bullying someone with anxiety or ASD can make their ability to cope in the wider world. It sounds like you are doing a great job, hopefully some people’s advice will be helpful and please don’t let the others, who have negative get to you. No one knows your children like you do. All the very best

If people prefer Autism or ASD, great.

But please understand there are those of us who don't feel the word Autism represents us, we feel it's as detrimental and negative label that holds us back, it doesn't represent us and we prefer the term Aspergers. Lets us define ourselves how we want, thank you very much. So if someone says they prefer the term Aspergers, then leave them alone, don't force your opinion on them. Let us be and define and describe ourselves how we wish.

@Thatsnotmycar firstly, I want to apologise. There were several posters, including you that were posting in the same vein at once. The other two did imply OP was doing nothing and shrugging her shoulders. You didn't. Sod's law that I picked you.

Reading your reply to me now it seems that you're saying the LA can and should be doing more, which is actually quite likely and different from what the other posters were saying. Signposting OP to what further steps she can take and what help/support to ask for and how to navigate the kafkaesque bureaucracy is not actually a bad thing. So once again, I apologise.

No, I’m not being ignorant. Neither have I said you as an individual are wrong to feel as you do. There you go again with the “we find”. Yes, it is your individual right to prefer Asperger Syndrome. No, it is not your right to tell others “we prefer” as though we are one collective group.

BTW, both the ICD-11 and the DSM-5 removed Asperger Syndrome as a stand alone diagnosis, it is now all under the umbrella of ASD. This NAS page explains the move away from diagnosing AS separately, although the page hasn’t been updated since the ICD-11 was released so it still says it is “likely to closely align with the” DSM-5, but if you search the ICD-11 here you will see it is no longer a separate diagnosis.

I didn’t say OP wasn’t engaging.

OP mentioned getting a grant and key worker for DS, but hasn’t mentioned therapies which would significantly help. She also mentioned it being a waiting game until DD started college next year, which implied there isn’t provision currently being made, nor therapies.

Yes, that is exactly what I am saying. Support is very rarely forthcoming unless parents force the matter. Sadly DC whose parents know the system, understand the law, can advocate and enforce their DC’s rights get better support. It shouldn’t be like that but it is. Many parents don’t realise initially what can be provided and how to go about advocating for their DC and enforcing rights. That isn’t a judgement on the parents, but it is the current system.

@Thatsnotmycar We prefer and we find means those of us who PREFER THE WORD ASPERGERS. Not everyone who has ASD. But those of us who define ourselves as Aspergers, and who, btw, are working hard to reverse the changes with DSM-5. So much so, that Drs in my country are listening to us and still diagnose as Aspergers, at the same time as ASD. If you took the time to read my post properly, that should have been obvious what I meant. And yes, you are being ignorant. And very offensive and goady.

@PontinsBeach "I grabbed her arm, pulled her into the hallway, told her she was a fucking disgrace for bullying my vulnerable kids and basically said “Fuck off and don’t ever talk to me again.”

The moment you put hands on another person you are immediately onto a loser. Nobody should EVER touch another person.

That said, why haven't you raised this with her calmly before now? Lay down the boundaries, be explicit on what is expected and if she doesn't comply then put in the consequence. It sounds like this could have all been managed much calmer than it ended up being. Now you will have to either 1. live with not seeing/being civil with each other 2. put in work to fix the whole mess.

Sounds like your sister is a lunatic and at the same time maybe there is something you could have done to limit the impact of this to start with.

Its a horrible situation all round. Lesson: Be assertive

@JennyNotFromTheBlock "define ourselves as Aspergers"

You define yourself as a condition? Wow.

Thanks again Thatsnotmycar. When you said there was support OP could be applying for now, I read that as there being something in particular you felt she could apply for but clearly hadn't.

Your subsequent replies have provided more clarity.

No, it wasn’t obvious. No, I am not being offensive or goady. I am autistic and would have been diagnosed with Asperger Syndrome prior to the change. DD2 has AS. Your posts make it sound as though “we” included everyone with Asperger Syndrome and it certainly doesn’t.

@Burgoo Yes it's called Aspergers Syndrome. Aspergers is shorter.

Well you might not mean to be but you are coming across as offensive and goady to me.

I come say the same about you..

*could