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Anyone have child with sensory sensitivities pls talk to me?!

(81 Posts)
Purplerainbow2 Sat 12-Mar-16 18:14:42

9 yr old ds1 has ASD (hf) with sensory sensitivities. The sensory issues have got worse with age. These last couple months has been hell. January he missed a lot of school saying clothes were irritating him. Mainly shoes, bought lots of shoes. Settled for a pair. School were good say he could wear what he wanted to get him in. Attendance board were involved ..... Sorry trying not to make this really long.... Anyway beg of feb I thought we were over the worse. Going to school every day. Then last week of term in February he was harder to get in. Then half term hit and he wouldn't leave the house for anything. Stayed in pjs and I was stuck in with him and ds2. Then managed to get a pair of joggers and only wearing them, slipper socks and a vest. He wouldn't go anywhere even in the car. School gave me a bit of work to do at home. Esbas have been round twice. This week gone for few days he has been coming with me to get ds2 from school (even tho we should walk) but in the car and he will sit in car whilst I get ds2.

Had meeting yesterday with school and esbas (school have done my head in but that's another thread I have on here!!) they have said on Monday tell him ASD co or donator will meet us at home and walk to school with us and that I'm going to work in foundation stage (their thinking he might feel safer/more willing to go if he knows I'm there) so he's all up for Monday, reckons he's going which is great but I know he won't. He is wearing the same clothes. I suggested we went to sports direct to get a size bigger trainer (as his slipper socks obv too thick to wear in trainer he has) he was up for that. We were sps go after dinner. He comes to the table starts yanking on his vest, crying saying it's irritating his armpits. Goes upstairs crying. Then decides he will come to shops.... Tries on various tops crying, shouting, ripping them off, saying they are irritating the crease of inside the elbow. I'm at my wits end. 4 weeks he's barely left the house. This means I can only leave the house when dh is home. I can't cope with it anymore it's so stressful. He was sps go to Camhs apt Friday but had same issues, spoke to her on pone instead. Next apt is after Easter!! Everyone keeps saying to me you've got to get him out of this cycle. I know!!!!! But I can't!! Has anyone been though this??

Tia sorry to rant

zzzzz Sat 12-Mar-16 19:19:37

Can't you just order what he will accept a size larger over the internet?

The armpit and inside of the elbows thing sounds like eczema? (That is how I feel when my eczema is bad) Would treating it like a physical thing be an option?

As far as shoes and socks go, just buy the size larger don't drag him to the shop and then let him wear them for good outings or around the house.

Reading your post it does seem that you are stacking difficulties so he has to overcome a mountain to succeed (eg clothing, going out, funny shoes, going into school/shops, separation anxiety, and changing behaviour). What you want to do is break it down a bit for him so it isn't SO hard to do well.

Purplerainbow2 Sat 12-Mar-16 19:29:46

Iv thought about ezcema as he had it as a baby but his skin is fine? As in no marks, not dry or rough. I think it's physiological as in all his vests are identical 100% cotton from next. One is fine..... Comes to changing it and he goes berserk. So at the moment I've left him in it! He was in said vest all day today, came to the table and was going crazy at how much is annoying and irritating him?

How can I break it down? I'm not putting any pressure on him, trying to be understanding etc...\\\\

Purplerainbow2 Sat 12-Mar-16 19:30:48

He won't wear any socks other than the same pair of slipper socks. Even at night so getting them washed is a nightmare. They don't make the trainers he wears anymore so can't buy the next size up, Iv tried that

zzzzz Sat 12-Mar-16 19:45:33

Have you tried crocs? I've noticed a lot of "our kids" (and adults) wear them. Are his arches falling (hypermobility in any other joints would make this more likely)? In which case he may find some shoes agony.

He may be reacting to his own sweat, so day old clothes DO get worse. Try giving him anti-histamine or using hydrocortisone on the problem areas if he can manage the greasy feel and oil in his bath. Many children find it easier to change clothes after they have soaked in warm water as it mutes the feeling.

Make sure his toenails are kept short so they don't press on the ends of the shoes and if possible oil his feet.

Purplerainbow2 Sat 12-Mar-16 20:23:23

Oh my goodness. Don't get me started on his toenails. His toes are 'clawed' for want of a better word. Saw a podiatrist few years ago who said not much could be done and gave us silly sort of putty toe separator things which of course were uncomfortable. Gp said it wS where he was holding tension, like you may clench your fists when anxious etc. can't cut the toe nails he goes beserk saying I'm hurting him, even after a bath. He goes nuts for days until they don't feel 'just cut'.

I need to go back to gp about it but can't get him out house to get him there!

He's worse when clothes are fresh on, prefers them 'worn' hence the skanky vest! He has it on in bed and in the day. Changed it I think 3 days ago.

He has fallen arches yes.

Purplerainbow2 Sat 12-Mar-16 20:23:42

Tried crocs and he hates them more than anything!

PolterGoose Sat 12-Mar-16 20:41:45

He sounds incredibly uncomfortable. It's a horrible feeling.

Have you tried Sensory Smart for their SmartKnit socks? They do clothing too. Ds will only wear those or socks I knit him myself (no seams and made to fit). Clothing designed for people with eczema is another option, I like Pure Cotton Comfort's range.

Any chance you are using too much detergent or fabric softener (leaving a residue) or that they are too perfumed (have you tried unscenter products?)? How are you drying clothes.

Does he have orthotics for his flat feet?

Have you tried warming his clothes before he gets dressed?

Doing some proprioceptive heavy work and/or deep pressure before dressing might help. A bath and a firm drying with a big towel?

I also wonder if he is unable to voice his anxiety and the clothes irritation is his way of expressing it. That doesn't mean he's faking it, just had anxiety has to come out some how and sometimes it's through physical discomfort and pain.

PolterGoose Sat 12-Mar-16 20:42:44

...just that anxiety has to come out...

zzzzz Sat 12-Mar-16 21:02:04

he should have inserts for his arches and the toenails too long WILL hurt and get infected. I think I'd work on that every day but in sneaky ways. Would he for example walk on sand? roll a massage stick under his feet (sounds barmy but is very good for relaxing and flattening tense feet)? would he let you give him a foot rub or do it himself?

I have enormously painful feet and have since my teens. I can't tell you what a difference lots of little accommodations can make. Once they have been better you will know how to get there and he won't be so stressed.

You could try a mild anti-inflammatory and see if there is improvement (nb long term use of anti-inflammatory is problematic so try it overnight and then use other things to alleviate inflammation). So I would do a dose of calprofen at bed time and another in the morning and just see if the following day is easier.

Purplerainbow2 Sat 12-Mar-16 21:04:33

You've hit the nail on the head. The OT said his sensitivities are heightened due to his anxiety. No one will help with the anxiety. Iv asked for meds to try but neither Camhs nor paediatrician will. I'm thinking of going private but can't really afford it but also if I can't get him to leave he house to go it will be a waste of the money.

Iv done deep pressure that the OT showed, helps a small amount. I warm his clothes with a hair dryer which helps, he likes that. He saying everything is irritating. Have the most gentle non bio and pure fabric cond, I tumble dry all his clothes, always have as otherwise they are too hard.

I had an order delivered today from them polter, the lady said they weren't getting any more of the clothes in for boys, something to do with the manufacturer. A long sleeve top was too tight around sleeves, he hated the feel of the knitted type ones and the other seamless one I managed to cock up the sizing so have re orderd bigger ones.

I just don't know what else to do. He literally won't wear anything other than what he has on. He doesn't care about smelling. It's not about me, he doesn't care if I take ds2 out without him or if I go to the shop in the eve when dh is home. He is fine until he has any transition, so tiny ones such as just going to the table. He has been fine whilst ds2 is at school. Between when ds2 has been picked up from when he comes home, There's no kids TV, no computer etc, he does he house work with me when I ask him to and he just plods around doing his own thing, mainly Lego or playing with his science kits.

Purplerainbow2 Sat 12-Mar-16 21:06:54

So give him ibuprofen each night? I'm not sure how I feel about that, ibuprofen gave me a stomach ulcer and I was v poorly and I'm not allowed to ever take it again or aspirin.... I would certainly try short term p try to get him through this.

Podiatrists weren't concerned about his arches enough to keep trying with inserts (he did have them when younger)

PolterGoose Sat 12-Mar-16 21:11:16

Have you considered home ed? It sounds like you need to remove all demands and give him some time to de-stress? zzzzz knows much more about it than me...

Purplerainbow2 Sat 12-Mar-16 21:11:34

He loves a foot masaGe, I have a special oil just for him. It relaxes him and when he's clawing at his skin it helps to distract him. His toes are clawed permanently even when his feet are relaxed.

zzzzz Sat 12-Mar-16 21:14:19

NO! I thought I was clear, give him ibuprofen once and see if it impacts, if it does he is in pain. Then you use other methods to alleviate inflammatory pain. It should be taken after food.

Your son is complaining of discomfort in his shoulders, elbows and feet, which are classic areas for joint pain to manifest. The elbows and armpits are also standard eczema irritant sites so it is prudent to keep an eye on that. (nb do you NEED fabric softener? I can't tolerate it at all)

PolterGoose Sat 12-Mar-16 21:20:34

The plantar reflex might be worth exploring. I don't know much at all about retained reflexes - it might be snake oil, I'll leave you to decide, some parents have claimed it to be of great benefit.

Purplerainbow2 Sat 12-Mar-16 21:33:37

I see what you are saying regarding the ibuprofen zzzzz. I use the pure fabric conditioner as he hates fabric without it, says its scratchy.

Polter, it sounds interesting although I wonder why there is only one practitioner listed in the whole of UK!?

PolterGoose Sat 12-Mar-16 21:46:14

Fabric softener essential here too, I mostly use Ecover.

There's loads of retained reflex practitioners.

PolterGoose Sat 12-Mar-16 21:47:14

... but it's not something I've used or can recommend, just something you could look into.

Purplerainbow2 Sat 12-Mar-16 21:53:52

Oh ok I only looked at the link you sent and that only lists one person in the UK. I shall look some more.

Purplerainbow2 Sun 13-Mar-16 08:28:44

Sorry polter I see I missed a post from you, I have considered home ed but I don't think it's necessarily for the best for him emotionally. We have discussed it and he says he will miss his friends. I also was think that he needs the stimulation of school. When Iv done work with him over the last few weeks I can tell his brain isn't stimulated enough. I don't think I would be good enough to home ed as he's so intelligent, much more so than me.

Ineedmorepatience Sun 13-Mar-16 10:53:48

Hi , I have no idea if any of these things will help but these are things we have tried or do.

Only soft clothing, so joggers, tshirts, hoodies all over sized. Converse for feet or walking boots but not hard leather ones, cheap ones are usually softer, Dd3 needs the sole to be firm due to walking/feet issues!

Deep pressure and brushing had some good results but we arent doing them at the moment.

Brushing is worth a try because it helps switch on the pain/light touch receptors and can help to sort out the confusion between them.

New clothes and shoes are hard to accept but washing a few times can help, not a problem for us now because we dont do school anymore so no uniform.

Newly washed clothes are also wrong especially bras for Dd3, used to be vests, they feel wrong too for a while.I have to just remove the dirty one or it will never get changed.

Be mindful of your smells, eg perfume or strong deoderant! Both Dd3 and I struggle to get in a car with someone who is wearing perfume!

Personally I disagree that you wouldnt be able to stimulate his brain at home! I dont know how or if he is managing to learn at school if he is so stressed! There is tons and tons of stuff you can do at home but mostly for us reducing anxiety has had the biggest impact on everything!

Good luck flowers

Purplerainbow2 Sun 13-Mar-16 13:44:48

Thanks ineed trouble is he doesn't want to be home schooled yet I can't get him to school! I'm so so sick of it. He has only left the house twice in the last week and that was sitting in the car waiting for ds2 after school. I'm so so fed up its unbelievable. It's really affecting my mood. I'm starting to feel resentful, like a prisoner in my own house. He is dictating everything that happens and it just isn't fair. He has never been like this. I have tried everything spent money I don't have on him. How can clothing he lived in suddenly be excruciating and unwearable?! Iv just gone out and bought next size up in his trainers so he can wear slipper socks but that's not good enough for him.

GlassJar Sun 13-Mar-16 14:25:32

It sounds like (as you have already identified) he's too stressed to cope with anything very much, and it's setting up a vicious cycle with his sensitivities.

Obviously and understandably you are very stressed too sad Might it be worth considering getting him signed off sick till next term so that there's a few weeks where he knows he won't have to go to school, and see if that helps to break the cycle? It may also help you as it removes the pressure of trying to get him there.

Ineedmorepatience Sun 13-Mar-16 14:30:07

Something has clearly caused him to be significantly stressed!
I firmly believe that sensory issues are made much worse by stress!

I think the whole situation is a spiral, and I have been caught in such a spiral myself in the past.

My advice would be to try to reduce demands and stress to an absolute minimum and see if that helps!

We dont do "home school" because that would stress Dd3 to the max, home is her safe place! We have been de schooling for ages and have slipped into autonomous learning which is working for us!

This week, the child who couldnt bear to be in school and couldnt attend any of her extra curricular stuff has taken part in a group learning activity in a place she has only briefly been in without me present for 2 hrs!!

This has taken months of work but her interest in the world around her has returned and she is learning all the time!

Work on the stress levels and other stuff will improve!

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