How do I explain arthritis pain to a toddler?

[StinkyWizleteets]

I have a connective tissue disease that affects the tendons and joins. It’s only started affecting my bones but the tendon inflammation is agony (Worse than breaking a bone and it never goes away) and I don’t know how to explain the pain to my extremely clingy and very tantrumy 2.5year old. He refuses to go to his dad, he still wakes 3 times a night and screams blue murder if anyone else goes to him. He refuses to let anyone else dress him, sometimes he refuses to let me dress him. Positive rewards don’t work, thinking time out doesn’t work. I can’t cope with this pain and him only wanting me. I can’t even lift him right now.

I’m due to start a biologic medicine next week but that adds a new layer of complexity because he’s always got bugs from nursery and him only wanting me means I’m always getting them too. This will disrupt my medication.

How do I get such a young child to understand and accept my limitations? How do I explain pain that limits what I can do to what’s essentially a toddler?

I don’t know how you convey that,
But I do know that a child who feels ‘pushed away’ will try harder / cling harder
They are hard wired to cling for survival and need to feel secure in their attachments to become independent

I think you and your DP are going to have to present a united front on this. You will both have to explain you're very poorly, and in particular your DP should tell him that they need to look after you. And not give into the tantrums - in this sort of situation your health and the efficacy of your meds need to take priority.

Re the 'pushing away' - that's true, you probably should give him lots of cuddles (especially when he's not demanding them!) this week as you and your DP start explaining about the special medicine you need.

@schmoozer a child cannot cling to their parents 24 hours a day and by 2.5 it would not be expected as normal in the same way a new born or young baby needs.

It’s not pushing them away to expect not to hold him while I pee, or to bathe, to make dinner, to have a cup of tea while juggling a slippery toddler on your knee and that’s when you are able bodied. I have a debilitating disability with pain levels most people couldn’t even imagine and yet I’m still managing (just) to parent an extremely cling from birth child, I’m asking for advice not criticism.

Its really fucking offensive for you to imply that he’s being pushed away. I’m asking about teaching a young child to understand disability and you’re guilting me for things my body is physically incapable of doing.

I hope your health stays perfect.

He gets cuddles on demand. What part of my post suggests he doesn’t?

That sounds awful OP. I think maybe your husband needs to really step up here - and deal with your child regardless of tantrums. Use the time out/naughty step. And if there is any way you can go elsewhere for a bit and leave him to it, it might help. I have a tantrumming grandson and he is far far worse with his poor mother than with anyone else - good luck 😘

I’m so sorry you’re in so much pain.
I expect your toddler is picking up on your stress levels, without understanding what is going on. This is frightening for him.
I think you have to pick your battles, up to a point. He’s very young for ‘thinking time’ and won’t be thinking about what he did wrong, I can promise you that. What he needs is reassurance.

You need to use very simple language. Mummy’s knees hurt. Poorly knee, poor Mummy.
No elaboration is necessary.
Does it matter if he doesn’t get dressed? Can he play at home in his pyjamas?
Hand in a bag of clothes at nursery. They’ll have him dressed in a twinkling. I’m a nursery nurse and I’ve done this many times ;)

You know it’s not ‘pushing away’ I know it’s not ‘pushing away’ it’s about you trying to cope
I’m suggesting to a very young child, that a parent not being available when they think they need you feels like being pushed away, abandoned, and that will be emotionally destabilising and their instinct to cling will present as stronger
I’m suggesting you work on ways to ensure he feels you and dad are there for him, even though you are restricted due to pain and Illness.
If you are rude again, OP to me, I will disengage from this discussion.

Gosh op this sounds really difficult.

I think the key is to get him used to his dad doing much more. I get this will be tricky if he wants you all the time but you have to persevere. If dad gives in and you step in, child will realise that if he cries you come and keep doing it.

Do you have the resources to send him to nursery or childminder for a few days a week if you are finding it hard to look after him? Plenty of 2 year olds go to nursery, mine had a great time there (after some initial crying on drop off!).

I suffer from rheumatoid arthritis so I know exactly how you are feeling. You and your family have to make some changes or you will become unable to function.
My DS was like your child when he was small and I used to have to say 'Mummy is sore today, please don't climb on me, but a gentle cuddle would make me happy'. He got used to it quickly, we just had to have less hard physical contact and more of the 'gentle hands' type. My DH had to support me with this by diverting him when I was really sore.
I'd try doing what another suggested and saying things like 'Mummy's bones/knees/hands etc are really sore today' and encourage your child to do 'big boy' things like sitting at the table on his own, not on you etc, lots of praise can work well. Try to do activities that are easy on you like drawing etc, or mine loved playing at soft play with other kids, better than sitting in the house when Mummy can't play.
The waking in the night and only wanting you needs to stop for everyone's sake. He is old enough now that it isn't because he needs anything, just that he wants you. My We did controlled crying (with our DS (controversial I know) and though it was awful at the time, it worked a treat. Within a week he slept through the night and has done ever since. If we hadn't done this I would have ended up becoming very unwell because my arthritis flares when I'm tired and stressed, and would not have been able to work, which would have been devastating to our family financially.
Regarding your biologic treatment, the best advice I can give is to keep as well as possible by eating healthily, doing gentle exercise when you can, and above all getting plenty of good quality rest, including uninterrupted sleep at night.
The key to all this is more support from your DH. You say your toddler won't tolerate his Dad seeing to him in the night, well both of them will just have to accept that is how it has to be sometimes, otherwise you will become too unwell to function and they will have to cope without you anyway. Your DH needs to back you up in diverting your DS and encouraging him to be more independent of you. You hqve to be strong and put yourself first. That will be hard but tell yourself that you have to be well for them if you feel yourself caving to the pressure of your toddler's wants (not needs).

Also get dad to do the physical stuff like dressing, baths while you remain available for cuddling and non physical stuff like reading stories.

I'm also on a biologic. Hand washing is very important as it should be. So if not already teaching him about handwashing everytime he gets in from nursery, everytime he goes to the bathroom etc etc. You would be wise to carry antiseptic gel around with you (i do)

His dad needs to do more. It will be tough at first but its going to be even tougher to do it when you have headaches and tiredness from the biologics (i have both)

I've got issues with hypermobility have had chronic pain issues (though thankfully they have less severe periods)
What I found useful was teaching my toddler to safely use a step to climb, into the sofa, chair, car for a hug rather than lifting from the floor, using slings and a hip seat to distribute the weight when I did have to carry. Using language like 'gently, softly' like you would teaching them to stroke a pet! Something visual like a tubigrip on a body part might help remind them you're hurting.

Little ones like to maintain the status quo, but they will adapt to different carers/routines (after letting you know their disapproval!) If for example, you had to be taken into hospital for 2 weeks, they would have to adjust to changes, and they would.

If you have any support network, please make the most of it. Your long term health is important, hope the treatment helps .

Thanks - his dad does help a lot when he’s around. If my son doesn’t want his dads help though it turns into a two hour meltdown which makes doing things like leaving the house near impossible (he screams and thrashes about and hits and kicks and this might just be trying to put shoes on him) . My OH works long nhs shifts so those days I’m on my own from waking until bed. My son does go to nursery those days and he loves it but getting him there can be a nightmare. I’ll ask if they’ll dress him on difficult days but there’s still the issue of getting him into the car. I love the step idea @tatyr but he’s fearless and would be using it to jump and climb on everything and reach things he shouldn’t. My mum says she’s never met such a stubborn child before which is a trait I love in him until I don’t...

I’ve been on biologics a few years ago when my eldest was small. She helps as much as she can but I can’t give her the responsibility of her brother when I’m flaring as she needs her childhood too and I need to ensure neither child has too negative an experience of me as their mother or grows up to resent the other.

My dd is basically the same age and age is also very clingy to only me at the moment. I don't think you can explain to them at this age, too young to understand or have empathy really. Are you on decent pain relief? Can you increase it?

Oh it's so hard and I really understand. I've missed out on giving my DS lots of 'me' because I physically couldn't. I didn't get on the floor and teach him to crawl and I didn't do much to help him walk. It's so horrible whenever he fell and got himself back up and I could only pat his head and not swoop him up for a cuddle.
It's not ideal but he's seen me cry in pain many times and is very good at giving me a little stroke on my arm and he's turned into a right little joker to make me laugh.
I've had to rely on him to be more independent from a very young age. He picks up all of his toys (me falling has always been a concern), gets his clothes from his bedroom and dresses himself and passes me things I need. He does get a kick out of the praise of doing these jobs and when he struggled early on getting dressed, I saw the determination in him to learn it (he wouldn't let me try and help).
From memory, I think it started simply with asking him to pass me things and then we built up the independence from there (he's 3 and a half now).
We often talk about mummy being a bit sore so he knows to go careful and I let him know when I'm going to the doctors/hospital but keep it quite upbeat (eg going so the doctor can take a picture of my back and then we are coming home).
I'm not saying I've got it right but I am so proud of how my son has turned out and how he's adapted. If I could be 'normal' I would play with him more and take him to places (and probably would've done everything for him) but I feel he's so switched on and happy that I can't be doing too much wrong!

Sorry, there were paragraphs!

Could you stay with your parents for a few days. Gives you a break and enables dh to build a better relationship with ds. If he's been so clingy from birth your dh has been pushed aside in ds eyes possibly.

I like the visual prompt of tubi grip. V good idea. Links in with Mummy's Baddy Arm (or whatever) verbal prompt.

Hi OP,
I’m on Biologic and we use this book. It is very ‘American’ but we change the words a little to suit us.

You can see I have actually covered the front myself accordingly to use my condition.

Hi OP, Im the one that posted about the book.

Just thinking about getting him dressed in the mornings as this is my hardest part of the day and I use a walking frame. Could be worth turning it into a ‘competition’ so to speak and see if he can get dressed either before you or before you count down from 20 to zero? By making it a game he may do it a bit more enthusiastically. I know it’s hard to get motivated to even try to turn it into fun when you’re hurting and you have the whole day ahead but this helped us at that age. (My child is now 5)
Put a nursery rhyme on and he can dance at the same time perhaps?

I had a wonderful Social Services lady that came to help me because I had a breakdown at DD’s 2 year assessment. She got them to call me and from then on, someone came to put my child in the car because I couldn’t do it and if a neighbour wasn’t around to help - it’s well worth enquiring. They were so kind and there was no stigma, this was before I started in the biologic.

I find the hardest part of these debilitating hidden diseases are the naivety of people who simply don’t want or need to learn about how we exist. That’s the biggest battle most of the time.

Once the meds start to work, it will become easier.

But yes to tubigrip as a visual clue for sore places. And firmly shutting the bathroom door whilst he screeches outside. The only beings that ever got to intrude on my peeing time were cats, and not if I needed a moment to breathe unmolested - sometimes I'd sit there and watch assorted paws, accompanied by a little hand, all trying to pull the door open.

Same issue. Quite possibly the same disease from your description. - I can't really explain it to my toddler 🙈

If there’s an organisation for your condition do they provide books or a FB page where they can advise on this?

Bloody hell, that sounds so hard for you.

This might be a shite idea, I don't know, but could you but him a teddy who will give him all your hugs when you're too poorly? You could get him involved in choosing and naming it, and do activities with the teddy so it feels like more of a real person. Tell him the red carries your hugs to him, and then gives all his hugs back to you.