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 you appear fortunate to live in a big close family, with everyone pitching in. Well, here’s some news: vast numbers of people have no help at all . Either they live far away from family, or family are not very involved and busy doing their own thing. It’s terrifically hard coping with ordinary family life with no support, but throw a disabled child into the mix and… poof! It is ferociously difficult to manage everyone’s needs.

Parents do their best but of course even the best of siblings will feel frustrated and short-changed every once in a while. It is entirely appropriate that they should be able to have an anonymous vent without people wagging their finger at them and talking about wonderful helpful extended family groups which many people can only dream of.

As does what your default starting position is.

[quote DottyHarmer]**@5zeds* you appear fortunate to live in a big close family, with everyone pitching in. Well, here’s some news: vast numbers of people have no help at all* . Either they live far away from family, or family are not very involved and busy doing their own thing. It’s terrifically hard coping with ordinary family life with no support, but throw a disabled child into the mix and… poof! It is ferociously difficult to manage everyone’s needs.

Parents do their best but of course even the best of siblings will feel frustrated and short-changed every once in a while. It is entirely appropriate that they should be able to have an anonymous vent without people wagging their finger at them and talking about wonderful helpful extended family groups which many people can only dream of.[/quote]
Read my latest post about my child's arm to see the reality of this.

We have NO help.

You’re right of course the woman dealing with the reality of her child’s disability probably doesn’t have a clue. . You would all do much better. Suggesting thinking about what you do want to contribute to your own family is a ridiculous idea. In fact it’s to make you feel guilty and not to help you find some control of your life. Sheltered living is the ideal for absolutely everyone (so long as they’re disabled) and everyone else will be subjugated for all time if they are part of any larger group.

It’s bollocks. Some people can make one model work and some can make another. It’s totally ok to be pissed off you didn’t get a family with everyone progressing to independence, it’s totally ok not to want to be part of supporting your sibling. It’s fucking awful to suggest people who do differently are irresponsible controlling short sighted or any of the other twaddle that’s been spouted here.

I hope you all find peace with the paths you choose and your families flourish.

Yes that must be hard for you but think how hard this is for him and your parents

@Marriedtothesilverfox

Yes that must be hard for you but think how hard this is for him and your parents

How is this comment useful to OP? I'm sure she knows it's hard for her family. Can we not just let the focus be on her rather than whataboutery-ing over how hard others have it?

@5zeds

For autistic people who also have learning disabilities and/of epilepsy life expectancy is about 40 (or so I was told a few years ago). I often wonder if it’s linked to the year their primary carer dies.

Could you perhaps see your Mum on Saturdays when your brother is with your Dad OP? Could your Dad commit to one Sunday a month?

40! My son has severe autism and severe learning disabilities. I really hope that’s not the case ☹️

@Cheeseplantboots mine too.

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.

I don’t know where in the country you are, but my brother is 27 (diagnosed at an early age) and currently lives in a supported living kind of place. It’s a self contained flat with carers there. It is possible. All funded by the LA, with contributions that he has to pay, of course.

If I were you, I would research it yourself, find a place, and then go to social services with all the info so that you can’t be fobbed off. I wonder if your brother is considered as having learning disability as well as his autism. Social services does have a specific sector for adults with learning disabilities, you may find them more useful.

I am assuming that social services don’t consider your brother’s needs significant enough to ‘meet criteria.’ They will keep saying this until something happens to prove otherwise unfortunately. I heard that old chest multiple times before my brother was sectioned and then they finally listened and placed him (only when I said he couldn’t come back to my house from the hospital, I love my brother to death, but knew this was the only way to get SS to act).

If they are saying his needs do not meet criteria, then they need to help you get him into social housing and then from there he can be assessed for any community help he may need. In my experience, this can only happen if your family say that he can no longer live with them and they can’t support him. Until this happens SS won’t budge. They will always leave it to the family to handle if they see no issues.

I don’t want to come across as anti SS, they are very stretched and under a lot of pressure, but this was my honest experience.

Good luck, wishing you the best.

@5zeds - my son is in his 20’s now. I keep him as healthy as possible. Epilepsy is well controlled but the sheer amount of meds he takes scares me witless 😥

@Cheeseplantboots I think all we can do is do our best. I no longer look for understanding from people who really on the whole have so little real understanding of our life. If I were you I’d ask your Dr about his life expectancy rather than google. Each case is different. As far as meds go, mine copes enormously better with plenty of exercise. Hard as I am now a bit creaky and he is a young man, but we try very hard to exercise many times a week.

@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.

The stats on it are horrific - communication difficulties also play a part in terms of understanding healthcare information (that generally is improving too fucking slowly - but more and more stuff is available in easy read format at least) and communicating when they're in pain, and the fact that everything tends to be viewed in the light of the ID diagnosis - "oh they're acting out again - must be X condition" rather than the fact they're acting out because they've got a funny feeling in their head that they can't articulate and it's really painful and it's all just a mess so they're banging their head to try to stop it because they've got a tooth abscess or something.

I'm an SLT student and I really want to go into ID/LD (our area's moved over to using the ID terminology) or mental health work.

@CoffeeWithCheese - my son has no understanding so relies on us and his care staff to figure stuff out. That’s not always easy. Even after more than 20 years I couldn’t tell you which behaviours mean pain or discomfort With kids with very complex needs at the more severe end of the spectrum 99% of stuff is guess work.

@CoffeeWithCheese What is ID terminology?

[quote 5zeds]@CoffeeWithCheese What is ID terminology?[/quote]
Just a move from referring to Learning Disabilities (which tends to get muddled up with Learning Difficulties - dyslexia etc) to Intellectual Disability. My area uses the latter now.

I see, that’s a more American terminology and more problematic when describing autistic people whose learning and access to it is impeded by their autism. Do your users prefer that?

[quote 5zeds]@CoffeeWithCheese What is ID terminology?[/quote]
@5zeds - sorry I don’t understand what you mean?

[quote 5zeds]@Cheeseplantboots I think all we can do is do our best. I no longer look for understanding from people who really on the whole have so little real understanding of our life. If I were you I’d ask your Dr about his life expectancy rather than google. Each case is different. As far as meds go, mine copes enormously better with plenty of exercise. Hard as I am now a bit creaky and he is a young man, but we try very hard to exercise many times a week. [/quote]
Yes excercise really helps. The medication he takes is for epilepsy and ocd. I don’t like the fact he takes meds and I’d like the doctors to try and reduce his epilepsy medication as he’s been seizure free for quite a few years now (first seizure was 15) but as he’s over 18 I dint get much say in these things anymore. I can’t make medical decisions for him like before.

I was asking the poster to explain what she meant. Here they use Learning Disability not Intellectual Disability and so I hadn’t heard ID except in the states (and honestly I thought it was old fashioned)

You can apply to make medical decisions (through the court it’s fairly straightforward but I haven’t done it myself) and epilepsy meds are often reviewed after 2 years seizure free. How many is he on? Some of them are very high side effect.

@5zeds - getting deputyship for health and welfare matters is really difficult, the courts are really reluctant to do it. The finance part is easy. We will do it when he moves out if the family home though.

He’s on 800mg of sodium valproate twice a day. He developed epilepsy at 15 but has only had about 11 grand mal seizures in the last 7/8 years . He’s been seizure free for at least 3 years now. It was discussed at the last epilepsy review and the consultant wouldn’t agree to reduce it.

Epilepsy is well controlled but the sheer amount of meds he takes scares me witless 😥

800 mg of sodium valproate twice a day? Is that all? Most of the people I've come across in the last 10 years, are on three or four AEDs a day, plus emergency medication. I'd be thanking my lucky stars if my DC was just on one drug!

If he’s well controlled on one AED that’s good, but I don’t understand why they don’t want to try without or something else if he is struggling on the valproate? Why are the courts reluctant to give you deputyship for health and welfare? It was presented to me as fairly straightforward.

Nice guidelines on withdrawal are here www.nice.org.uk/guidance/cg137/chapter/1-Guidance#pharmacological-treatment

This section seems to cover what should happen
section 1.9.18 Withdrawal of pharmacological treatment

They may have told you why and you missed it in the middle of a long appointment or it may just be it was safer during Covid than risking possible admission to hospital.

It sounds like communication isn’t working. Our epilepsy nurse is really good at finding ways to make things easier