NRAS
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Messy kids + sick Mum = tired and grumpy! Help please...

So, the real reason I started to seek out a support network of folks dealing with arthritis was to get some advice or nuggets of experience from others who have dealt with the challenges of being a mum with an illness.

Due to marriage difficulties stemming from dealing with my illness, I am now a single Mum with two kids. I have had to get back to work 4 days to try and support us as much as possible.

My most unanswered issue lies though with how do I encourage the nurturing and responsible side of my eldest? She’s 10. She is a fiesty, funny and creative kid but also a total ditz, messy and at times careless and really challenging. I really want her to learn to see that the impact of her leaving everything behind her in a mess on the floor is utterly exhausting for me and leaves me with less energy and time to spend with her and her brother. Her little brother is naturally empathetic, sensitive and kind. And tidy (well for a 6 year old!) I barely need to ask him once to help.

I want to get the balance right of not making her feel put upon because I’m ill, but equally I would be wanting her to be more responsible at this stage anyways as she is 10 year old!

Another thing I wondered was has anyone seen anything out there to help kids deal or understand life with a sick parent? I know there is tons of great literature especially from NRAS about adult relationships but is there anything similar for children?

Anything helpful thoughts most appreciated!

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Call the NRAS helpline. They are amazing at this sort of thing. X

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Good idea Allanah. Never thought about that. Thank you 😊

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When I was young I came from a large family of 10. We all had jobs to do and was responsible to keep our bedroom tidy and change linen and making our beds every day otherwise they stayed untidy. So I don't think it's wrong to ask your daughter to be tidy and help around the home. It didn't do me or my siblings any harm. If anything it made us more independent.

I'm lucky or not that RA came in later life 55 and my children are now grown up. So it's just hubby and me at home with my youngest coming back and forth home from university.

I really do empathise with you as it can't be easy for you to hold a job and look after your little family.

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Been there tho. So hard! I think support from experts is the way to go. Although lots of others on here will have great ideas too.

I found the helpline unbelievably good. One day I called them twice lol. They were as good second time as first x

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That is so good to hear. I’ve never really thought about calling them for something like this. Only really thought about the helpline in terms of an accute issue.... this just always rumbles away in the background at the moment 🙈🙈😬

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Thank you Matilda! I am an only child and always remember having to do stuff too - It made me the independent person I’ve been for most of my adult life!!

I can find it hard to balance as I grew up in an immaculately tidy house with everything in its place, and although I cant possible operate to those same standards on my own I know our busy life runs smoother and with less stress on us all when it is as tidy as possible. Equally, I feel much more at peace and less stressed when the house is tidy!!

I have tried just shutting the door on her mess or letting her take responsibilities for just putting her own stuff away, but then the knock on effect is she (and I) both get totally overwhelmed when then trying to sort it out again when it inevitably all gets too much!!! Or there is the inevitable pre-teen tantrum when she can’t find the one essential item she needs!

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Apologies.... that became a bit of a rant 😂😂🙈🙈

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Rants are allowed here! Well I rant on all the time🤣

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Wow... that sounds like such an powerful thing to have done together. I know RA and bipolar are very different but finding a way to explain and explore some of the different behaviors is exactly what we need.... or even just a way to open up the conversation to see what she really notices and thinks about it all...

Do you mind me asking if you took a non-fiction kind of slant? Or was it written as a story?

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That’s brilliant. Really inspiring. Thanks so much. 😊

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That is a really good question, mine are adults now but used to use giving them a choice of 2 things to do, e.g.would you rather wash up or tidy your room, so it felt like their choice not mine lol. Must be some good literature somewhere, hopefully someone will post; i know how tiring being single working mum is & i didn't have this at the time x

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That’s a good approach. I really think there must be some literature out there!! Here’s hoping someone has had better success than I have finding it!!

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I would say Fi, there are pluses, my two can turn their hand to just about anything, they scoff at cousins who can't decorate, fix cars, cook, iron n sort finances ... List is endless, some we learnt together lol 😄

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I’m all for independent kids! I think as an infant teacher you see how much they can achieve in a classroom at a young age so I have always had expectations of them... it can be hard to translate at home though!!

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Hi Fi

As Allanah has suggested, you can always call our helpline next week to talk this through 0800 298 7650 (Currently Mon-Thu 9.30-4.30). It's a struggle to find good information on this, and one of the difficulties in putting something together to explain RA to children is that what you give to children to read will depend on their age, mental age and personality etc. The following is a good article, which you might find helpful: rheumatoidarthritisguy.com/... There is also a comic book available. We were given an early proof of this, to help ensure the accuracy of the product, though I'm not certain if we saw the finished product: amazon.co.uk/Eloise-Medikid...

Getting your child to read something about your condition can be useful, because then the information is not coming from you, they can read it in their own time, and it won't seem like being told off. I think the Medikidz comic-style book would be good, so long as you don't feel she'd find it baby-ish, as it does look at things from the kids viewpoint, and looks at the reasons why the parent's RA affects them in certain ways and how that can impact both parent and child.

I hope that helps.

Victoria

(NRAS Helpline Manager)

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Brilliant Victoria. Thanks so much. Just the kind of thing I was looking for to get the conversation started at least! 😊

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My pleasure. Good luck! x

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There's also stuff around to help your kids understand, here's an example of one kids book. There are others. Sometimes it helps to have someone else explain stuff to them.

amazon.com/Why-Does-Mommy-H...

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Hi. I have no experience of young family and RA but I do have of bringing up a family. My daughter is 3 years younger than my son. He was easy going and fairly tidy and very helpful, however she was not. Two of the major things we did, that they as adults say at the time as children they didnt like, but when they look back on their childhood worked, and they see the point of, are firstly.... I would say to them we are a team there are 4 of us so we all need to pitch in. Firstly be responsible for our own things ie bring washing down, ill do your washing and ironing but you need to bring it down. Secondly we would chat over a meal and I would go over their jobs and mine and ask them if they think it was working ie am I doing my jobs (which I was) but theirs had slipped. So basically we would rediscuss why they were not and what could I do to help them get back on track as it had to be done. Generally this was nothing as they didnt want to do jobs.. My children said they didnt like that at the time but it gave them some responsibility of choice and as said above there were jobs they could choose and at these chats could swap but they always had to be responsible for their own things ie taking down washing. As I explained did they want to handle my dirty knickers...no...so why do I want to handle theirs. We didnt argue about this, it was all under the heading of fareness. Dont know if any of that is helpful in your situation. My children are now 32 and 29 and I see my son of 32 starting this with his 5 year old saying its your plate so you take it in the kitchen and I will take mine, mummy did all the cooking so we will take hers. Good luck

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You sound like such a nice mum and I can’t imagine how you’re dealing with this horrible disease whilst your children are young.

I don’t think there’s anything wrong with talking to you daughter about it, explaining how hard it is on you to be constantly picking up after someone. Also a little bit of independence and consideration for others will do no harm at all. I look after my very young grandchildren one day a week and often tell them I can’t do certain things because of my sore hands/legs and they are very sweet about it.

I do think children these days are let off with an awful lot and not made aware of the consequences of their actions. I do worry about what kind of generation we’re bringing up. My eldest grandson has dreadful toddler style outbursts if he doesn’t get what he wants and he’s almost 6! It makes for a tricky situation with my daughter.

Sorry that was a bit I rant/ramble! I’m sure you’ll find a way and I take my hat off to you 😊

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Hi there Fi23,

Being a single parent is hard enough, being a single parent with RA is the pits. I have walked in your shoes. My daughter was 10 when I was diagnosed and about 13 when I was struggling with really bad flares before finding the right drug combo. Yours sounds very like my daughter was, and my son too was younger and much more 'biddable'.

My daughter went through an awful period of being angry, rebellious, bunking off school etc and anything else guaranteed to give me stress and demand my attention. My son meanwhile learnt not to rock the boat or stress me, to keep his head down and get on with it.

Fast forward many years and conversations (they are 30 and 23 now) and they can talk openly about how this was the way they each dealt with my illness. My daughter had seen me go from being a dynamic career woman she admired, to someone who could no longer work and was constantly in pain and she just couldn't handle it. So it could just be that your daughter is really struggling to adjust. They get angry and sad that they have to think about and deal with things that their friends don't have to. Maybe they don't feel they can talk to you about how they feel, for fear of upsetting you. Maybe they blame your illness for losing their dad. She could even be wondering "is this going to happen to me when I get older, am I going to get ill?".

I'm assuming you're in the UK, so if you put Young Carers into google you will see a whole list of support groups who are there to help children dealing with a parent suffering from a chronic illness. They will hopefully get to meet other kids in the same situation who are dealing with their own version of 'life's not fair' and support workers who can talk them through the complex issues they deal with. Mine got picked up once a week for a kind of youth club for young carers so they got a break away from home and met some really great youth workers.

Another option is to ask your GP for a referral for Family Therapy. This isn't for everyone, some kids hate talking about 'private' things, but input from your local CAMHS (Child & Adult Mental Health Services) might just help. I know for sure (at least where I live) that children as young as 10 can be referred for say 6 sessions of CBT, but due to cuts etc there is usually quite a waiting list. Your recent change in circumstances may well mean you'll be given priority.

You might also find something useful here:

amazon.co.uk/Helping-Childr...

or here:

amazon.co.uk/Raising-Emotio...

All the best to you and yours X

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Amazing. Thank you!! Will read in depth and follow up later on but that is such grounded and wisdom filled advice. Thank you!

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My pleasure X

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