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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

Sensory Processing Disorder and pain.

20 replies

Al1son · 22/03/2011 15:45

My DD2 is 8 and is being assessed for SPD and ASD, possibly OCD too. She also probably has Juvenile Arthritis in her hips for which we are seeing a rheumatologist in April.

I'm struggling to get the school to believe when she's in pain because she doesn't consistently use appropriate body language. She will ask for painkillers and two minutes later be bouncing about or rolling on the floor. Even when I am pretty sure she's in severe pain she's been know to run and jump off walls. The OT says this is due to her SPD.

I just wondered if anyone else has a child who can say he or she is in pain and then move around as if in no pain at all. It would be reassuring to know that she's not the only one and that she genuinely is in pain when she says she is.

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Triggles · 22/03/2011 18:01

DS2 is like this as well. He is 4yo. He has had a number of head injuries, and we struggle with trying to gauge how badly his head is hurting, as (other than at the initial impact when he has fallen) he doesn't consistently indicate the pain, although if you watch him closely you can see small signs (slight rubbing the head, wincing, things like that). But you have to watch him verrrrrry closely, as he is still all over the place. I swear sometimes it's like he cannot slow down even long enough to acknowledge the pain sometimes.

Original poster

Al1son · 22/03/2011 19:51

Thanks Triggles. It's nice to know she's not the only one . I can see the same subtle indicators that you can. I just wish that her teachers could see it too!

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rebl · 22/03/2011 20:13

Yes. My ds broke his arm and the dr's said that normally a child would need morphine with a break as bad has his. He had calpol because we thought really he should have something. He also has been seriously ill with stomach ulcers and in hospital and been charging around the ward like nothing was wrong. Most people would be in agony. You are certainly not alone and my ds is being assessed for SPD at the moment as well.

Original poster

Al1son · 22/03/2011 20:22

Hi rebl. Does your DS show that he is in pain at other times?

This morning her hips were really bad and she couldn't get out of bed, she was crying and moving very stiffly like any other child, clearly in lots of pain At other times she says they are extremely painful but doesn't move as if they are. It really confuses me.

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rebl · 22/03/2011 20:27

Yes, he can lightly bump his head and scream like he's dying. But then he can cut his head open and not flinch at all. He can be grey and doubled over in pain and screaming with his ulcers as equally as not respond to them when they're in the same state. With his broken arm he screamed initially but 10mins later he was gripping (his arm looked like a banana) and using it. He confuses me with his pain responses as well, always has done. We've never understood the way he responds to pain.

Original poster

Al1son · 22/03/2011 20:34

Thank you so much. That sounds so familiar.

DD2's teacher told her off this afternoon for suddenly being doubled over in pain when she hadn't showed any sign of discomfort up until then. They rang me to give her pain relief (only because the gp wrote and told them they had to) and when I got there she was really upset because she couldn't understand what she'd done wrong.

I am really cross about it but don't know how to get them to understand.

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rebl · 22/03/2011 20:45

My ds does that, suddenly doubling over in pain but been fine just minutes later. My ds's teacher doesn't understand my ds and pain at all but then she's only had him for 3.5weeks. But I give her her dues, she's worked out he doesn't respond to pain normally by herself and has asked me if there are clues to when its not something to worry about when it is but tbh alot of it is intuition with ds.

I don't know how to get them to understand when we don't understand it ourselves. Its so difficult.

Triggles · 22/03/2011 20:50

I sometimes wonder if, because their brain is rather misfiring or firing differently, they are not getting correct pain feedback in their brain except an occasional bleedthrough, which is when they suddenly feel it and then it's gone again.

Original poster

Al1son · 22/03/2011 20:53

It sounds like your DS has a lovely teacher. My DD's has tried really hard to help her but has very set ideas about how she's willing to do it which don't always coincide with DD2's needs.

I does help to know there are other children the same. Thanks

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rebl · 22/03/2011 21:03

He does . I'm so glad we moved schools at half term. This teacher gets him and really seems to care.

We certainly have found that some teachers haven't got a clue or don't want to be flexible. At his old school the teacher was awful. She certainly wouldn't do things differently to meet ds's needs.

Original poster

Al1son · 22/03/2011 21:24

Sadly I'm beginning to think moving schools may be what we have to do. will wait for the outcome of the diagnostic process first and then possibly apply for a stat assessment. That would get her into an autism base if there's a place when the time comes. How sad that our small village school can't meet her needs.

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rebl · 23/03/2011 10:01

We moved ds from the small village school as well. It is sad that they can't meet our childrens needs . It was so important to us for our ds to be part of the village community and part of that was to go to school in the village but it sadly wasn't possible even for a whole year. He managed just half a year and quite frankly we probably should have pulled him out after just 3 weeks. I do wonder if the small village schools just don't have the experience and staffing levels to cope. I would wait for the diagnosic process to finish 1st. We've moved ds mid process and its certainly slowed things down. But his safety was at risk and it was urgent to get him out.

amberlight · 23/03/2011 12:54

Yup, I have SPD and autism and arthritis and my pain responses are totally bizarre. Slight knocks or small cuts hurt like heck, but really big injuries aren't something I notice at all.

NorthernSky · 23/03/2011 15:20

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NorthernSky · 23/03/2011 15:21

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Original poster

Al1son · 23/03/2011 23:03

So when I ask if her hips hurt and she says she doesn't know she probably genuinely doesn't know! (It was my genuinely being a bit ahead of itself!)

I get what you mean about the slightest knock or scratch. She has the tiniest splinter on her hand and has made the most enormous fuss for the last 6 hours whilst refusing to let me touch it to take it out. She's currently sitting in bed reading and holding her hand to the side in the most dramatic fashion imaginable and I've walked away before I lose it.

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amberlight · 24/03/2011 08:14

trouble is, it really does hurt like hell to have a small splinter in my finger (to use me as an example). Far worse than a big injury. To treat one, wrap child in thick duvet to fool their brain into sensory complete overload, and get them to wriggle their toes a lot. Might mean they can cope with you touching the pain area.

Original poster

Al1son · 24/03/2011 09:26

amberlight you are a star! I had heard both of those tips before and forgotten about them. I can be really thick when I get wound up like that. I know it's not her fault and it clearly did hurt but she just couldn't accept that there were only two options, take it out or leave it in.

I will try it with the quilt and the toe wriggling this evening.

She's gone to school in a right state because her hips hurt, she's still got the splinter and they're off to spend the day at a large inner city junior school that she's never been to before. Her own school is a tiny village first school.

Good luck Mrs Teacher! You're going to need it

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amberlight · 24/03/2011 09:47

Hope they have given her a photo 'tour' of where she's going and a timetable of what will happen, otherwise that's scarier than a scary thing for her I'd reckon. Eeek!

Original poster

Al1son · 24/03/2011 10:17

I wish! They have done nothing. I've found the school website and we've looked at photos, talked about who will be there etc but the school don't see the need. She's is a typical AS girl in that she tries to keep everything under wraps in school so, although they can see how her AS affects her academic work, they don't/won't see her anxiety and think I'm the one with the problem.

When we arrived this morning, a few mins late because of her anxieties, the deputy was telling the children how they must stay together because the school is so big that even she gets lost in it. No reassurance for DD2, no special arrangements to keep her safe, no plan for her to let someone know if she's finding it hard.

It's amazing that you who have never met her can understand how she is likely to be feeling but the school staff who see her every day have no idea.

Hence the reason I'm hanging out for a diagnosis soon and a move to somewhere more appropriate .

I am going to try not to think too much about what's happening today because I have a really strong urge to go and pick her up and bring her home.

Sorry for the rant. I think I'd better go and walk the dog to work off some adrenalin!

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