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

[Purplerainbow2]

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

[Purplerainbow2]

I have read a lot about PDA over the last year and a half, as I said earlier I mentioned it to the paediatrician (waste of time) so I do understand what it is. This doesn't help me to help him though.

[Purplerainbow2]

He doesn't want to be HE he wants to go to school. That's what's making it so hard. He has no work from school anymore. They say it's giving him the choice of being at school and that it isn't a choice. The head emailed me back last night and said 'maybe I should make a referral for flexible home tutor' or something along those lines. No doubt it will take Months even if she does

[Purplerainbow2]

I haven't asked him to go to school for 2 weeks. So the 'demand' isn't there. Other than when esbas came Tuesday and she obv wAs trying to get him to go.

I tried that m&s range in the past. He didn't like it. Although it seemed to disappear for a whe, so perhaps it's changed. Thanks for the links, I shall have A read .

[NiceCupOfTeaAndASitDown]

He wants to go to school but he can't. Could this be because it is a demand? I don't mean a drill sergeant is shouting at him "you WILL go to school!" I mean he is expected to go, you're all asking him to go, he WANTS to go (an internal demand) and (possibly) because he feels such intense anxiety when he isn't in control he simply cannot do it ???

The more I'm reading the more I'm thinking the sensory stuff is a red herring, I don't mean that it's not an issue - it clearly is, just that perhaps it's not at the beginning of the vicious circle, maybe it's a domino affect of feeling so anxious.

I understand that you've tried some PDA techniques, giving choices for example but sometimes nothing works. My DD as I've mentioned very likely has PDA, sometimes the techniques work for her, sometimes she is simply too anxious to 'fall' for any of them. Right now she can't make decisions, she can't even answer a question. I'm pretty what you're describing is typical.

God I'm convinced he's got PDA now aren't I? I just feel there must be more to this than meets the eye. I feel like you're too caught up in the stress and confusion of it all to even know where to start...I feel like this with my DC a lot. It sometimes feels like whatever solution I try and come up with for things being wrong they find a reason it won't work (typical anxiety thinking errors I do it myself) but I just feel like there's either more to this than meets the eye or you're missing something simple.

M&S have a new range of clothing for special needs but I've been unable to find it anywhere. My kids live in H&M basics, next or Tu do lots of simple jersey stuff sometimes with no labels.

Have you seen this questionnaire?

Quite good articles here and here and most importantly here

I will drop it now and really hope things get better for you all soon

[Purplerainbow2]

I have emailed the head saying that as she told him he can't go on the trip tomorrow as he wasn't in all of the week that he won't be in school. Unless be specifically tells me he is happy to sit in a lower year class (I know full well he won't though )

[Purplerainbow2]

Zzzzz I read your post that it's directed not just to the school but me also? I hope that is not the case??

I know polter, I have also paid for the trip (minor amount but not the point) getting fed up with it. I'm not taking him out to take to a different school as he ain't cope. I don't want to take him out at the moment as he doesn't want to be home schooled he wants to be at school.

[Purplerainbow2]

Because he hasn't been on school all week. I knew there was a trip tomorrow and one Tuesday (as does ds1) no letters came home about them as head said he's not allowed on the trips if he wasn't in school. He went Monday. Didn't go yesterday or today so he doesn't get to go tomorrow

[Purplerainbow2]

Nothing on the high street!

[Purplerainbow2]

Another awful day was convinced he would go as he knows he can't go on the school trip tomorrow if he didn't go today.

Anyone tell me where I could buy clothes from? Uv tried ALL online shops, there is no lying on the high street for him. Went on sensory smart website and the lady was so lovely and helpful but they hardly have any clothes now, something to do with supplier. Everything online aimed at children with sensory problems with clothes are American. Anyone know of any English ones?

[Purplerainbow2]

Thanks nice cup, no demands at all. I had phone call half hour ago to collect ds2 from school with headache. I said to ds1 'ds2 is unwell and needs us to go and get him' he said ok, puts the same shoes on that we tried getting on this am and went, no questions asked.

I'm in the middle of reading explosive child at the moment Actually, after recommendations on here. He does have some PDA signs, so sometimes the strategies work I.e do you want to brush your teeth or do you want me to? Getting to school or leaving for anything else, nothing at all works.

[NiceCupOfTeaAndASitDown]

So sorry to hear you're having such a rough time at the moment. I find things so crazy sometimes I don't know which end is up. The thing you said about 0-crazy struck me as similar to my DD, she's only 3 but does the same. We suspect PDA. I don't think it does come from nowhere though - I think she is feeling anxious and the feeling builds and builds and then she snaps.

You say your DS doesn't have any demands on him. Have you read much about PDA? It might help to if you get any time (I understand this is impossibly hard right now) - a demand isn't just "you must do x,y,z" - children who feel anxious when demands are placed on them are affected by lots of things others might not consider demands: expectations, suggestions, even their own body expressing a need. DD has been unwell lately and got so anxious she couldn't dress, eat, drink or go to the toilet. At all. At times she is battling with her own needs/desire to do something but the anxiety of being expected to do it even if that is her own expectation is just too great.

I second (third) the theory that sensory issues get worse when people are anxious. Mine sure do, so do both my DS and DDs. It's just hard to know which came first.

I have no advice regarding school as mine have only just begun to enter the education system (hating it but still new) but in general I think the first thing you need to do is look after yourself. Get to bed early, make sure you get a wash even a 5 minute bath, prepare food the night before, whatever it takes to make sure your basic needs are met.

I really hope you get some answers soon, it can feel so desperate sometimes, even with a diagnosis we still have to graft away to understand our children's difficulties which is even harder when they cannot articulate them. You're not on your own though, we are here.

Have you read The Explosive Child? Some of the techniques in there or on the website may help. Take the walking tour for parents if you can, it's been a big eye-opener for us

[Purplerainbow2]

Sorry rant over !

[Purplerainbow2]

Feel like giving up. So he went to school yesterday (not u inform) apparently had a great day, teacher said his friends told him how much they missed him etc. said he was going to school today. Esbas were here 830 to walk into school with us etc.... He was dressed, fine. Then comes to putting shoes on and he was moaning saying they were irritating. Shoes off, socks got thrown. I tried more deep pressure massage. Tried again. This went on for a while . She spoke to him etc etc. I kept saying just leave it as he will just get cross, when he's like that hoy can't talk him out of it. So then we were just talking and in the front room and ds2 was playing Lego, ds1 gets annoyed and just starts irritating ds2 for no reason, starts gently throwing Lego at him. I said to stop, he keeps going and was getting harder and harder. Ended up throwjng at me. Tried to get him out the room to cool off but wouldn't so I had to take ds2 out the room to keep him from harm. Ds1 stayed in the room with esbas woman. She was here 1.5 hours and couldn't get him to school.

She just said well he needs the right support. I said who's left?!! There's no one there to help!!

She said he just goes zero to crazy with a click of fingers. I said yes welcome to my world and that was nothing compared to what I normally have. She's speaking to her senior and arranging a meeting although that obv won't be for a month as we have Easter soon. I rang school and head said she could come get ds2 but not until lunchtime. Just before they got to my house poor ds2 fell over taking quite a bump to forehead. I sorted him out, he said he was happy to go but it's just not fair on him either

Yet again I'm stuck in. Fed up of the houses

[Purplerainbow2]

I'll have a look at that later then on the laptop.

[Ineedmorepatience]

You can book it online! I found it difficult on my mobile gadgets, easier on a laptop.

[Purplerainbow2]

Ds2 teachers haven't said he isn't going to meet the expected level tho so I don't see how it's just because of the curriculum. Yes it's going to have an impact.

How do you arrange a call back from ipsea?

[Ineedmorepatience]

Thats because the curriculum has changed though! I have heard lots of parents have been told the same!

You can book a call back with IPSEA its a much better way to get hold of them.