Autistic brother makes it impossible for me

[IAmHereButNotHere]

As title says really.

He’s in a routine and will not break his routine, ever. So he lives with my mum, visits my dad Tuesdays, Thursday and Saturday.

He cannot cope with me being there too, I get in the way, not deliberately but I just talk when he wants quiet so we can’t be there at the same time. And he cannot cope at all with my 7 year old, who I’m a single parent to – just her being there upsets him. He says he likes her but can’t cope with being around her.

He can’t cope if mum goes out outside of his routine, so if she goes out at 10am instead of noon he can’t cope so I can’t go on daytrips with my mum as she also has to be back at a certain time. If she;s not there when he gets back from dads, he gets upset. If she’s there when she’s not supposed to it upsets her.

Mum got a new car the other day and he couldn’t cope with that either, keeps saying it’s not mums car.

I try to understand but it affects my life too. I can’t see my parents when I want to, I can’t ask them to care for my DD unexpectedly, I can’t just pop in when I’m walking passed, my mum can’t just get my DD from school or holiday club as a one off, everything to do with my parents and brother has to be organised down to a tee – my brother cannot cope with my DD being even in his house touching anything so any childcare is at my house and I can’t be a minute late because it upsets my brother.

Because of covid I haven’t seen my dad for over a year. Brother used to only go twice a week but he’s increased it to 3 times. I get weekends off but my dad has a hobby on Sundays with some friends of his who still work so I can’t see him then, I also get Tuesday off but can’t go then due to my brother. If I suggest he doesn’t go one week so I can I get told by my brother that upsetting his routine will upset his rhythm and he may never be the same again, my parents suggest it and get told that they need to consider him over me because of his autism – I sort of agree with that tbh he lives with my mum so should come before me and his AN mean he needs my dad more than me.

I am just moaning here. My whole life revolves around my brother. I love him but I am sick of having to consider him when I want to see either of my parents. I can’t go on holiday with either parent as it upsets my brother so much.

I am lucky I have supportive friends and good childcare options nearby, but I am mourning the relationship I thought I’d have with my parents. My DD barely recognises them.

I know I am VUR and prepared to be told so. Sorry for the rant and sorry if any of my wording is wrong or offensive, I don't mean to be.

@5zeds

He doesn’t struggle on the valproate but it did increase his appetite and it’s been a nightmare to lose the weight he initially gained. The epilepsy appeared suddenly, probably triggered by puberty. I just question if he still has it. They can’t do any tests as he won’t tolerate them. I’d like to try reducing it. Of course I don’t want him to have a seizure but think it’s worth looking into.

Deputyship for finance is straight forward. Deputyship for health is only given “in the most difficult cases” There was a case brought by Rosa Monkton and two other parents to challenge this. I’m not sure how much of a difference it’s made even though they were successful. The last family I know that applied (with children with severe autism and severe learning disabilities) were turned down.

www.irwinmitchell.com/news-and-insights/newsandmedia/2019/june/welfare-deputyship-parents-welcome-judgment-ruling-law-needs-revisiting

@Intercity225 - he’s not on one drug, he takes meds for other things too. I worry how it affects his health. Its not a bad thing to review them and reduce where possible. He has enough problems in his life already. The medication he takes caused him to gain lots of weight, very quickly. It’s taken 2 years of really hard work to get him 4st lighter. He has a complete obsession with food.

I won’t be thanking my lucky stars just because he doesn’t take a shed load of medication.

Did they refuse to try weaning?

I won’t be thanking my lucky stars just because he doesn’t take a shed load of medication.

I said I would if DD were on just one medication. She's been on sodium valproate since she was 14; and she also has Depo-Provera injections every 10 weeks - which increase the appetite even more. She's been on a diet for the last 7 years. If she didn't have the Depo-Provera injections she would be having 70 seizures a day, during her period and admitted to hospital every month on the first day. Having said that, we called 999 between one and three times a week anyway for 10 years; and that's not including the trips to A & E for the injuries from falling during a seizure.

She used to have 350 seizures a week, whereas now its only 200 a month on three drugs, plus clobazam if she has 5 seizures in a day to break the cycle - otherwise, she builds up to 150 seizures in a day.

The consultant agreed to prescribe her medicinal cannabis yesterday.

Goodness, that sounds really difficult. I can see why you find this hard! It’s also also your mum I feel desperately sorry for-does she get any sort of respite?

I don’t have direct experience myself. I have a good friend who moved back to the U.K. with an autistic child when they were 5. When she started school they were very tough with her and told her that allowing routines and obsessions might seem to make her life easier, in the long term they wouldn’t. She had to challenge behaviour and still does. Obviously she still has these behaviours but she has some flexibility. I think a late diagnosis has been hard for OP.

I’ve another friend who for many years has told me she is determined to take on sibling with autism/DS. I’ve seen recently she is wavering. Siblings health is worse and some behaviour is worse. Friend has children and a career and I don’t understand how she thinks it would work. Her parents have no support or respite ever after they left school. Sibling has never ever been left with anyone else, there is zero planning for the future.

@PizzaPiePizzaPie I think knowing someone with a 5 year old probably means you don’t know better than OPs mum on how to help and support her child.

YANBU. Your parents aren’t treating you fairly and need to give time to you also.

I’d investigate again with your local social services department about help or respite care for your brother.

This thread scares and depresses me. I have an autistic son and a NT daughter. I don't ever want her to feel like this.

@ambereeree

This thread scares and depresses me. I have an autistic son and a NT daughter. I don't ever want her to feel like this.

Me too, but don't despair. We can raise our daughters to be advocates for their siblings AND give them freedom to live happy and full lives. Remember that this thread will be full of negative feelings because that is the nature of it. We have a chance to do it differently. And we can.

My children know that if something happened to them I would care for them. They would do the same for me. Ds already needs that care, and they will help if they can. I would never leave them to struggle with that if I could help it and if I couldn’t they would do their best. It’s not so different to any other family, we just already know we are together.

@Intercity225

Yes, I am afraid life expectancy is much lower for people with LD:

www.mencap.org.uk/learning-disability-explained/research-and-statistics/health/health-inequalities

Other factors are poor diet, lack of exercise and obvious linked health conditions like heart problems for people with Downs Syndrome.

These stats reflect mostly those who are locked in ATU's where the quality of life for these people are horrendous. The food they get is low quality, non nutritious. They are given dangerous medicines like antipsychotics which they don't need. They dont get any exercise and are abused: www.theguardian.com/commentisfree/2020/feb/17/national-scandal-nhs-local-authorities-vulnerable-people

I have been reading more on this and unfortunately there are very scarce places for those with severe autism in the community. The assistive living places are very limited and private hospitals are claiming there is no need for them and that these people should be locked up with them. Its a money making idea and nothing to do with care or quality of life. Then there's the ATU's which are also horrendous and worse again are so called "forensic services" where vulnerable people with severe autism and learning difficulties are housed with criminals so its basically prison. Here's the thing, if you push SS to help you, depending on who the SS is, your son or daughter could end up being put there. The story I hear over and over is an SS sayoing to the naive parent "lets put him in an ATU to get his needs assessed" and then you are told your child can't come out and they can be in there for as long as ten years. The health of the person in these places deteriorates rapidly.

Me too, but don't despair. We can raise our daughters to be advocates for their siblings AND give them freedom to live happy and full lives. Remember that this thread will be full of negative feelings because that is the nature of it. We have a chance to do it differently. And we can.

This sounds lovely but you have to understand that your daughter may not want to be the default advocate for her sibling @hocusspocuss

@AgnesNaismith

Me too, but don't despair. We can raise our daughters to be advocates for their siblings AND give them freedom to live happy and full lives. Remember that this thread will be full of negative feelings because that is the nature of it. We have a chance to do it differently. And we can.

This sounds lovely but you have to understand that your daughter may not want to be the default advocate for her sibling @hocusspocuss

I do understand that. I actually think it is everybody's responsibility to advocate for those who cannot fully represent themselves. We all as a society should be advocating more. That's the ethos I live by and if my DD chooses not to adopt that it will be up to her.

I am in a network of families who all positively advocate, and everyone gets involved. If you think my DD will resent me for being a part of that you do not credit me with any sensitivity or emotional intelligence at all.

I knew when I was pregnant with DD that she would have a sibling with ASD. It has been written into every parental decision we make for her, to accommodate her AND her brother, we sometimes have to parent them slightly differently but it's only ever for their benefit.

This is the stuff that keeps parents like me awake all night, constantly trying to make everything work, so don't insult me by saying I haven't considered things. That's all I do.

Interesting to hear the different stories and perspectives of both parents of children with LDs and also siblings like me.

I’m really not trying to insult you at all, I’m sorry if it felt like an insult - completely not intentional. It is lovely that you have a network of families who all advocate for those with disabilities.

What do you expect your daughter will do to advocate for her brother?

Also just to add to the above - my dsib has epilepsy and severe learning difficulties and is way over 40, as are many of their friends

@AgnesNaismith

I’m really not trying to insult you at all, I’m sorry if it felt like an insult - completely not intentional. It is lovely that you have a network of families who all advocate for those with disabilities.

What do you expect your daughter will do to advocate for her brother?

I don't have any specific expectations, because she is 3 years old right now. I generally find having rigid expectations to be unhelpful.

I hope she will love her brother, despite his negative behaviours. She does already, she told me this morning. That will be challenged at times I'm sure, but I will access as much help for her as possible, as a 'young carer'. (That's the term given to siblings of disabled children)

I hope one day she would defend him or children like him if she ever heard anyone ridiculing or teasing children with his disability.

I would hope one day she would make some effort to communicate with him on his level, as he is unable to do the same for her ie by using symbols or repeating things.

If she does none of these things she is still my child and I will still love her. I don't expect any of this from her.

I think any expectations are unhelpful tbf. This is completely unwarranted advice I am aware. But in my situation I am the daughter, the best thing you can do for her is to make sure her brother is taken care of in the future.

@hocusspocuss I’m sure she will, I still see mine weekly and my best childhood memories are with my dsib. I will always stand up for people with disabilities and have frequently given people lectures over words they use or cheap shots. I think when you’re a sibling it’s just in the blood.

You sound like a wonderful mum and they’re lucky to have you!

When one of my children was about ten a classmate of hers was “managed out” of school. On that child’s last day their parent stopped me in the car park to tell me that my child was the child in the class who had always been a friend and support for theirs. My child is an exceptionally high flier and I can honestly say that moment has beaten all the accolades since. I hope to raise ALL my children to be advocates and friends to those who don’t have such easy paths. If they don’t want to that’s their choice. As parents surely our job is to offer good choices?

Offering good choices is right. It's when siblings aren't offered choices that's the problem. My mother chose to keep her son living at home with her with no support from social services until her late eighties (when her bowel ruptured and she was in hospital for 6 weeks, so I was able to step in and get emergency help). She made the choices for herself and my brother. Unfortunately she also made choices for my life, to become his default carer.

As the sibling of an adult with serious mental health problems (so not exactly the same situation, but quite similar), I think it's all very well and good for your brother to stick to his routine, but he can't dictate the routines of everyone else in the family.

Kindly, if he cannot cope with "normal family life" (your mum leaving the house whenever she wants, you popping in when you're passing, you visiting your dad with your daughter) then the solution is not for the rest of you to suspend normal family activities, it is for him to move into a supported living facility (precisely because he cannot cope in the family home).

It sounds as though your parents may have (understandably) pandered to him somewhat (especially as he was diagnosed so late and they had such little support) but now the chickens are coming home to roost as it were and it's becoming clear that the consequences of doing that mean it's not sustainable.