Am I indulging my ds?

(7 Posts)
elliejjtiny Thu 15-Aug-19 13:50:25

DS2 is 11. He has ehlers danlos syndrome and sensory processing disorder. He is academically very able but his body can't keep up which he finds very frustrating. He wants to do all the mainstream things that his friends do but he won't/can't pace himself and just carries on until he collapses on the floor. He has meltdowns due to tiredness and sensory overload. He can't cope with loud noises.

Mainstream activities like playschemes, sports clubs etc won't take him without a carer which is understandable but he's at the age where wheelchairs aren't cool, ear defenders aren't cool and having your mum stay with you for an activity definitely isn't cool.

My mum says I'm being too soft with him and he should be able to control himself by now. I'm trying to teach him to pace himself and sometimes it works but not very often. I carry snacks with me at all times which can sometimes help him when he is on the edge of a meltdown and in the holidays we make sure we only go out 3 times a week so he has plenty of resting time.

I've been taking him to lots of special needs activities this summer which has been great for him but then I've seen on facebook the photos of his school friends enjoying local playschemes and activity days together and it makes me feel sad for ds that he can't join in. I've got another child who has global development delay and in some ways it's easier with him because his cognitive and physical abilities match so he doesn't get frustrated.

Should I be doing more to try and make ds pace himself and manage his sensory overload better?

OP’s posts: |
Moonshake Thu 15-Aug-19 14:07:07

I don't see what you CAN do to make him pace himself and manage his sensory overload TBH. Children of this age usually have quite strong opinions and ideas, and tend to want to learn for themselves than be told what to do (or is that just mine?).

I think all you can do is be supportive, casually make suggestions without pushing anything on him, and pick up the pieces when they get it wrong again

And sympathies, I have a headstrong 12 year old who also needs to learn to manage her sensory difficulties, but also won't wear ear defenders or anything that will make her look "weird" - but then apparently has absolutely no shame when she's having a massive meltdown in public. Oviously she has no control over this, but I can't understand why she'd rather take the chance of that happening over a preventative measure. I think it's something that will come eventually, with age and experience, but for now they need to make mistakes...as that how they will learn, it's same for all teens/pre-teens.

elliejjtiny Thu 15-Aug-19 14:13:05

Thankyou so much. It's really good to hear that I'm doing the right things for him.

OP’s posts: |
LightTripper Thu 15-Aug-19 15:20:58

You probably already have, but there are plenty of blogs/vlogs about energy accounting (e.g. Purple Ella has one I think - she is autistic and has hypermobility syndrome though not full ED but it does mean she has to pace herself and talks about all those struggles about getting the balance right on her channel). Looking at YouTube to see if you can find any teen vloggers with ED might also be worth a try (I tend to follow more women because DD is autistic, but i'm sure there will be boys/men there too who your DS might identify more with).

BlackeyedGruesome Fri 16-Aug-19 15:08:51

Are you sure he is not autistic as well? 7 times likely for hypermobility syndrome disorders including hEDS.

Yes to the don't want to look weird by wearing sunspray then ending up bright red and panda like, or the public meltdown

Guiloak Fri 16-Aug-19 19:51:14

My DS has EDS, sensory issues and is now being assessed for ASD likely to be high functioning, he hides it well. He has enjoyed two coding camps this week, would highly recommend but they are expensive. He hated all other camps and hadn't tried any in years as he hated them so much.

Are you sure he isn't saying he is tired because he doesn't want to do activities. Lots of exercise is the best way to manage symptoms but it needs to be fun for them and not of long duration. 30 minutes every day was the rheumatologist advice.

Having EDS myself I know everybody is different and have different symptoms.

BlankTimes Fri 16-Aug-19 20:14:17

My mum says I'm being too soft with him and he should be able to control himself by now
And her medical qualifications and specialist knowledge of EDS and SPD and co-morbids are what, exactly?

My dd is adult but can still be in the situation where her interest in doing something just completely cancels out out her ability to pace herself.

I nag prompt and remind as much as I can, but a lot of the time she pushes herself too far, but doesn't realise until it's to late.

Nowadays, we don't go into town on a wet day because there's nowhere dry to sit when walking from the car to whichever shop she's interested in. Rests are essential when walking even a little way. We also do say 3 visits to a place on 3 different days instead of the usual one, so that helps with the pacing.

Right now, your son wants to do what his peers do - it's perfectly understandable, been through a lot of that and the acceptance that it was just not possible took a very, very long time to be realised. Especially because the amount of spoons to start the day varies, so again, that's something to be learned. One day things are possible, another day they're not. The variability of it is hard to understand.

On days where she has no spoons but I have to say pick up a prescription that can't wait, she'll sit in the car in her pyjamas with a coat over them, because that's as much as she can manage.
Not enough points for an EDS dx, very bendy in places they don't use for scores, so CFS dx given.

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