Wednesday, 5 November 2008

Stress

Thinking over C’s life I have been most stressed when C is in pain either through self injury or when he has been ill and it has been difficult to diagnose as he wont let anyone near him, so sometimes the illness gets left untreated for long periods because of his self injury. And then when diagnosed it is difficult to get medication down him! It can be a vicious circle.

We all feel and show pain differently. We all tolerate different amounts of pain. Some of us even like inflicting pain on ourselves.
People look at C and assume because of his head banging he must have a high pain threshold. But when he is in pain he head bangs more. Others see it as this is just what C does. Not that he is trying to tell us something.

So I was very interested to read this summary of a local project that has recently been done.
The project involved talking to people with learning disabilities, residential and day service staff and carers.
The project found that;
14% of day staff,
33% of residential staff
and 66% of family carers
think that people with learning disabilities have a higher pain threshold than people with out learning disabilities.

There is no evidence that people with learning disabilities have a higher pain threshold than other people.

86% of day service staff said that they had taken medication for pain within the last 3 months. Only 4% of people with learning disabilities had been offered medication in the same period of time
79% of residential staff that they had taken medication for pain within the last 3 months.
Only 39% of people with learning disabilities had been offered medication in the same period of time.
We all need to know that;
People with learning disabilities feel pain as badly as other people. People should not have to be in pain.
People with a learning disability may not say they are in pain, but their behaviour might change. (doesn't every ones?!) We need to find out if people with a learning disability are in pain before saying they have "challenging behaviour".
Staff and carers can use
pain picture cards with people. However for some like C who is unable to use picture cards so pain signals and treatment should be identified in the person’s Health action plan.
Staff need training in pain recognition and management. Health screening needs to improve.
In July this year there was an
Independent inquiry into access to healthcare for people with learning disabilities. The inquiry was ordered in response to Mencap's ‘Death by indifference' report, which told the stories of six people with a learning disability who we believe died unnecessarily while in NHS care.

Did you know GPs are getting £100 bonuses for carrying out health checks on people with learning disabilities. Shouldn't they be doing this anyway?!



So in light of National stress awareness day, Ive had my say - now over to you - so what makes you stressed?

94 comments:

rainbowmummy said...

Egg! But I love him. Having no money and a house that is falling to bits that is actually not even my house, nor is it rented. That I eat to much but don't enjoy it. Dog mess! People! And about a million other things.

I didn't know about the £100 bonus. I feel a little sick actually now.

Egg will not say when he is ill. I know he scared of going to hospital, we have had three TRAUMATIC viits (might I add that that he only had to go to hospital becasuse of nursery and school). I know he also scared of the feeling, he struggles with anything more than happy.

I cannot medicate him, I cannot treat him, heneeds to go to the docs now, but I am putting it off. I hate this, I hate that I need to help him but I can't. I hate that he styill has a peice of plasticine in his ear (from school) as he was so scared that the docs couldn't get it out. I don't want to "just put him under" like the doc said. He could DIE, and I know there are parents that put their kids under all the time and I on't want to start that. Doctors are so removed sometimes. He cut his face at nursery. "Right we can put him under or we can wrap him in a blanket and pin him down and stitch him whilst he is awake" I have nearly slapped her. Turns out that we did neither and he is fine. Another doctor came in and said patronisingly "The best ppl to dress him is you" "He is not scared of you, he is scared of this" I said waving my hands about the blood filled room of Egg torture. "ok, then you best go home" translate"we cant deal with screaming autism here, you just go home and don't bother coming back to hospital, we are never going to be able to deal with you". Ugh, I am stressed!

virtual voyage said...

Thanks for throwing some light on this issue. It must be exhausting knowing you could help alleviate problems at times, but can't because of all the complexities of the situation.

Halo said...

It is very scarey not to know where the pain is coming from in my daughter. She cant tell me and she cant point. Im hoping, with help, that she will soon be able to give my a card to show where the pain is coming from. At the moment its all guesses and Calpol.

A few months ago she woke one day and was unable to walk, she just collapsed on the floor. I guesse dit was her left leg nd took her to hospital, they done X-rays of the top of her leg, but i thought it was her ankle, the x-rays were fine. Three days later she still wasnt walking, so i took her back they done x-rays of the bottom of her leg, still nothing. The next day she started walking again.

Only two days ago she was moaning, which is a different kind of cry, i couldnt work out why she was upset. Later that day i was going to attempt to cut her nails when i noticed she has a big splinter in the end of her finger.

Halo said...

Just to add... i used to think she had a high pain threshold, but now i just see it as her not knowing how to communicate her pain.

Mrs. C said...

Oh, my goodness. If these doctors get bonuses for taking care of people with disabilities, they should be doing extra work, no?

Like, our state gives big money to school district for educating autistic people like my sons. Their answer to problems that come up? Lock 'em in a closet!! And it's even listed in the school procedure book as a "recovery room!" But how many parents are complaining? Yeah, it's a ZERO, because the other parents have neurotypical children who aren't "BAD."

Rainbow mummy, I am SO feeling for you this morning. What Egg is going through is totally unfair. What are they expecting from their patients... do they want them speaking in full sentences and making good eyecontact before treatment?? :[ Upsetting.

BenefitScroungingScum said...

I'm definitely stressed now I've read this and know how awful the situation is! It always confuses me that there is this assumption about higher pain thresholds, what I think that really means is that generally in society people think everything should be curable without any pain or impact. Those who know that is nonsense are usually those with 'high pain thresholds'.
Oh I'm cross now! I'm glad that things are settling a little with C though. Long may it continue, hugs BG x

bobbie said...

These are frightening statistics. Definitely an area that cries out for education of professionals as well as the rest of us.

I do have a high tolerance for pain, and it can be a problem, since I don't recognize need for treatment until the problem has progressed pretty far. If people with disabilities DO have a higher tolerance, it's all the more reason for closer attention.
Either way, more sensitivity to their needs is called for.

What causes my stress? Probably frustration when I learn of problems I can do nothing about.

Kit Courteney said...

"86% of day service staff... Only 4% of people with learning disabilities had been offered medication... 79% of residential staff... Only 39% of people with learning disabilities had been offered medication..."

These figures astound me. Truly, I am shocked. I fully appreciate how difficult it can be to communicate, but KNOWING that it is difficult to communicate, you'd think an extra bloody effort would be made!
-----

Stinky blue cheese stresses me :0)

Suburbia said...

Not having enough time stresses me. Also watching my kids go through the stresses that the school system inflicts.

StatMama said...

People are work. People with developmental disabilities are more work. And frankly, I don't think a lot of people are willing to put the time in. I've seen it in how my own children are treated by others, I've heard it in stories of how others are treated, and I've experienced it myself. Special needs annoy many people in a world where everything is moving so fast that we seem to no longer have time to help someone back up when they fall.

And it's sad.

Sarcasta-Mom said...

An interesting and insightful post, as always.

I think because many people with dissabilities communicate their pain differently, people don't interpret it correctly. Often times you have to investigate, and learn to be more preceptive of individuals particular pain "signals". Unfortunatly some staff are just not in tune enough with the people they work with.

As for my stresses? Don't even get me started. lol.

Perky Skeptic said...

Every time I volunteer in my son's class, it amazes me how many of the kids just want to be touched. Just having a friendly hand laid on their shoulder improves their whole mood! I think the de-stressing properties of human contact need to be emphasized in classes with autistic kids. One little girl (nonverbal) just starts crying during the day for no apparent reason-- but if you pick her up and hold her, she's laughing within seconds.

Certain frequencies of sound stress me, and I, too, like to be cuddled. :)

TOM FOOLERY said...

Ignorance and stuff you cannot change however hard to try TFx

Jeni said...

Think about this for a moment - how many times when feeling upset, stressed out or even sick, in pain, do we say "I just feel like banging my head against the wall" -probably thinking it would work to relieve whatever is bothering us because it does feel much better then when you stop doing that. Poor analogy maybe, but then again, maybe it makes more sense than I originally thought. Just as we may become really frustrated in dealing with some fixations here and there -minor or major as they may be -and we say then "It's like hitting my head against the wall" or a brick wall at times too -so too, don't you think, our kids may feel just the same way but taking things literally, not figuratively. All frustrating events never the less.

Debs said...

I can't believe doctors are being paid bonuses for something that they should surely do automatically. Ridiculous.

No one should suffer pain unnecessarily, I'm relieved carers and staff are having training that they should have surely been having all along.

My job causes me stress. The never-ending cycle of not knowing what's going to happen next. I shall have to learn to switch off to it more.

Traceytreasure said...

The easier question to answer would be "what doesn't stress you out?" That list has fewer things on it.
Oh Casdok, I can only imagine how you must have felt at times. And, as for "C" I wish I could take all of his pain away, and yours.....

Also, I have to ditto what Tom Foolery said.....

Big hugs and love, T

Tanya @ Teenautism said...

Much to ponder with this post. In watching Nigel, sometimes I think when he is experiencing the most emotional pain, it causes him to start hitting himself perhaps as a distraction to the emotional pain. Even though he is now verbal it is still a mystery.

As for myself, what caused me the most stress over the years were dealing with problems with the schools Nigel attended. I would cringe every time the phone rang because it would be them telling me that he was having an "episode" and I would have to leave work to pick him up. Usually these "episodes" were his reaction to someone bullying him. I am so glad now with homeschooling that those phone calls are behind us.

Holly Nappi Collins said...

This was eye opening and interesting, thanks for shedding some light.

Green Girl in Wisconsin said...

The picture cards are a huge help, but I agree, health care providers should be trained and frankly, know with experience, how to recognize pain. Those stats were shocking.

Chris H said...

My stressors are rather trivial compared to most people I think! Noise gets to me... I can't stand a lot of conflicting noises.... like kids yelling, the tv up loud and someone trying to talk to me all at the same time! And mess... I can't stand a messy house! Told you it was trivial.

alan said...

Knowing that stress made me physically ill last night as I awaited the birth or death of hope, I can't imagine being unable to express it...

For episodes like Rainbowmummy speaks of above, and so many others, there will come a day when health care providers will be looked on as aghast for these actions as the doctors and surgeons of 150 years ago are for theirs!

alan

Mima said...

I get stressed when I am dealing with the people that make decisions about my life, in case it doesn't go my way. However much we fight there is only so much I am able to do, so I am always scared that I will not be able to cope with it, or that they will judge and decide that a mistake has been made and the help of one sort or another will stop.

Although I deal with quite a lot of pain, it tends to be the brain fog that I find very difficult to deal with. That very definitely is because I have the painkillers that are able to help. It shows how little I know about autism and dealing with it, to think of C hurting and not able to tell you is awful. I am so glad that you are able to recognise the signs, but if he has difficulty taking medication, what do you do to help? Every time you write about your life together, my admiration for you and how you help him increases.

Cathy said...

As son 2 often can;t express pain, especially of the more generalised kind, I take any change of behaviour seriously and often give Calpol, just in case.

menopausaloldbag (MOB) said...

Loss of control over the things in my life makes me stressed. Mostly stress comes from situations that we have no control over. Pain is an extreme creator of stress especially when you are unable to ask for pain relief. My God, that must be a terrible form of torture. Those of us that are able to get pain relief are indeed very fortunate. I had never thought of this kind of situation Casdoc where an individual would be unable to explain the pain or ask for help. Very sad and certainly made me think quite a bit about the situation.

Trixie said...

What makes me stressed? Trying to raise two children as best as I can on what little I have. But hey, that's the majority of the world. We just keep on keeping on!

Marla said...

Great post. Pain is a difficult thing to judge for M. She certainly can feel it but expressing it has been difficult and it has only been recently that she voiced it. The chart you show does help.

JoyMama said...

Election stress! Glad Nov. 4 is over.

I would NEVER generalize about pain-tolerance to anyone else's kid on the basis of disability, didn't know that people DID that on this issue, to be honest -- but it has always looked to me as if my daughter in particular has a high pain tolerance. She is incredibly quick to bounce back from bumps and falls and the like. Often she'll seem not even to notice, though other times she'll cry for a few seconds (where her sister would carry on for half an hour given the same injury!)

Surely high pain-tolerances do exist, don't they?

Hammie said...

Excellent point Cas. One of the reasons I wanted Bratty to learn to "show me": Ears, Mouth, nose, and tummy was to hopefully begin to teach her to show me where it hurts. I agree that a lot of "behaviour" is actually just an expression of pain which would make all of us react.
I heard the "pain threshold" thing shortly after Boo was diagnosed. It was used to explain how he could get out of seat belts and pram harnesses and why he wouldnt react "normally" to a sore throat or ear infection. Turns out he does have some body numbness and clumsyness; and over sensitivities in other areas; but he didnt have the "social code" of how to behave when you are hurting. The break through was teaching him to describe his pain. I do this by making a big deal of any visible pain such as if he trips over or bumps himself (easy as it happens 20 times per day) and then teach him to extrapolate that to internal pain. It makes him sound like a hypochondriac "My ear is sore", "The nostrils are sore" and my favourite: to be used in crowded areas
"The bottom is itchy",
but it tells me when something that is quite treatable is hurting.

He had a cold and sore glands recently and I was able to phone the gp and describe exactly where he was hurting so she could reassure me over the phone that it was normal and what to give him. (paracetamol) That saved me the stress of the doctors visit.

I always say to anyone who underestimates our kids "Just because they cannot talk, doesnt mean they cannot complain"
it is just that the complaint will take a different format.

Very good post Cas,
Thanks for sharing it.
xx

Merlin's Wizard said...

Jesus! I had no idea that people could be so- well bloody awfull. Imagine not realising that the person in your care was in pain or not?! Surely you must know that something is wrong when someones behaviour changes! Im appauled at learning this. Although it is not on the same level we had the same ill treatment from the NHS with my grandfather. It seems that GP's were being paid not to send him to hospital (although it is the other way around, its still terrible). I trully hope that C doesnt have to endure pain because of someone elses ignorance.

Take care
MW
XXX

Jayne said...

Stress is battling with school teachers who use my son's fully-funded classroom aide to help other kids (who aren't funded) while he struggles with the work.
Stress is coping with the meltdowns of frustration, aggressive behaviour and defiance triggered from a local cricket club kicking him out due to his autism not helping them win a premiership.
Stress is not having enough hours in the day to cram everything great in that you want your child to experience before the next sunrise coz tomorrow might be another day-long meltdown.

lynnes said...

I get stressed when I'm trying to do the best for G in a loud, chaotic situation. Chaos causes me to melt down (and I'm supposedly neurotypical) and when I add trying to help G deal with the situation, it becomes incredibly stressful!

Thank you for posting this today. I needed the reminder that chellenging behaviors mean something, and I have to try harder to understand.

Goldie said...

wow, casdok, that was very informative! thank you. it reminds of those horribel days where they performed surgery on babies w/out anesthesia b/c they thought they could not feel it (or something... I SWEAR I read that once a long time ago!)

Keeping too fast a pace, not being able to keep up and get adequate down time makes me stressed. So just last night I started a little help of the medicinal kind. Prolonged stress can cause depression. It is ok to ask for help when we know we have reached our limits. That is wonderful that they are finding ways to give this same voice to others who may not be as verbal.

Flea said...

Everything stresses me, I think. :) And how about you, mum? How do you deal with stress?

Bettina said...

That picture just freaks me out *shudder*

I always felt that my Lou had a higher pain threshold than the other two kids......... then we figured out that she expressed pain differently. Catches you out when you don't know what you are seeing.

leira said...

what makes me stress is that when things seems to be not going my way. I hate that and when Joshwa is having his tantrums specially in a public place.

Crystal Jigsaw said...

Marvellous post, Casdok. It is often hard to determine Amy's pain because she doesn't seem to understand the question.

I suspect this is the case for most people with autism.

CJ xx

Noddy said...

I have some shots of Taipussam in Malaysia from the seventies even more gruesome that yours!

I thought you might like to look at my latest post. One to watch - well two actually.

Frances said...

I would like to thank you for yet another extremely informative post. I always learn so much from you!

Sometimes, I feel as if I absorb stress from people around me, and so, I continue to try to find ways to dilute that effect.

Best wishes as always.

Patty O. said...

What a great post. This is something I haven't given much thought about, but now that you mention it, I can clearly see how this might be a problem. I have always assumed my son (who has SPD) has a higher threshold for pain, because he used to not really respond (at least in a way recognizable to me) to pain. Lately, though, now that he is talking more and managing his SPD better, he has shown a lot more response to pain. I have wondered if his threshold had changed, but duh! he can actually now respond more normally. I don't know why I didn't see that connection. Thanks for enlightening me.

rhemashope said...

Definitely one of the most troubling things for me is trying to figure out if and where my daughter hurts. she doesn't seem to have the receptive or expressive language to tell me. a friend suggested trying to teach her to use a band-aid. if i give her a band-aid, she can put it on her belly if she has a stomach ache. i don't know if she "gets" it yet (and she doesn't care for band-aids in general), but we're working on it.

Akelamalu said...

A very informative post, thank you for sharing.

Maggie May said...

What causes me stress?
Things going wrong either electronic, electrical, illness........ things out of my control.

Today my eldest Grandson was diagnosed with Autistic Spectrum Disorder (higher levels) aged 12.
I was relieved, funnily enough. Now something can be done to help him socialize & to get to the root of his fear of homework and other school problems.

Dianne said...

people need to learn new ways to communicate with each other - no one is typical.

I'm stressed right now with fights with my insurance co over care for my messed up leg/knee

would you believe - they asked if I could walk and the Dr. told them no, not without a cane and pain. they asked if I could stand!! the Dr's response was - what is the point of the standing without the walking? all this to try to deny me PT

Tanya Brown said...

I've had similar concerns about newborns getting their foreskins removed. Turns out that there was, and perhaps still is, a misconception among many doctors that newborns don't feel pain the same way adults do, and some of the procedures are ghastly. @#$%@#$%.

My heart goes out to all who are unable to speak for themselves and whose needs aren't taken seriously. Thank you for doing your part to educate the populace.

Rosie said...

good post cas...
at our school the educators are constantly on the alert for behavioral cues which may indicate pain, but with nonverbal students it is difficult.
especially during the winter when everyone has colds all the time, and I wonder about headaches...

DJ Kirkby said...

Oh, I don't even know where to start...so many pertinent points in this post made me cross and stressed all over again. There is so much inequlaity, health care should be equitable for all but the skills that are needed to provide this are not readily available or accessible for those healthcare professionals who need it most. I think N3S and I do have a very high pain threshold though but sometimes things that would tickle others set us off so who knows? xo

Honeysuckle said...

We've had lots of signs that Buster has a higher than normal pain threshold but I've never assumed that was because he was learning disabled - it was just how he was. But frustratingly, alongside that, he has a lower than normal fear threshold, so small procedures that wouldn't bother most people terrify him. We usually fail to convince him that they won't be as bad as he's expecting and sometimes medical appointments are abandoned as he won't tolerate needles, etc. (But then, would any of us if we couldn't see/understand the long-term benefit?)

blogthatmama said...

Money, my children's present and future, traffic...so many things but I was shocked at the lack of medication for pain. How insensitive!

Trish @ Another Piece of the Puzzle said...

It's sad/frustrating/enraging how easy it is to not recognize the needs of those in your care and to offer them the same considerations you give yourself.

Thanks for shining the light on this - you say it so well.

LceeL said...

Dear Person-I-Think-Should-Be-Queen-Of-The-Internet,

I am so glad that things are slowly rounding into shape for C. I just wish it wasn't 'slowly'. And, then, of course, there's the other 800 pound gorilla in the room - how are YOU doing?

Ali said...

Stress is constant at times isn't it. Ollie has it constantly too. Shame on the British government for paying £100 to GPs to check our children - this is totally disgraceful and feel sick now reading about that. Although saying that Ollie has never had a full yearly medical with our GP, its usually been his paediatrician.

With Ollie self injury started age 6, he is now 12 and into the teenage years, spots and all, bless...he does have a very high pain threshold, well mostly when he was under 11 I feel but now he is getting more aware that he damn well hurts himself, especially when hitting his body.

Seeing him self injure has always pained me so much, but I tried to learn to shut off from it and I go numb, its the only way to cope. Ali xx

~Mama Skates~ said...

thx 4 visiting my blog & leaving a comment!

i've been skimming ur's some & WOW - what an inspiration u are!! an amazing advocate for C & an oh so caring mother!

i will definitely b back to visit again & again!

sharon

~Mama Skates~ said...

oh, and i LOVE "i believe in a thing called love" too! great fav song pic C!!! ;0)

sharon

Maddy said...

Very interesting and thought provoking [as always!]

We used the 'happy happy' scale early on, it proved very useful.

I certainly think that my boys have differing experiences with pain - one immediate one delayed, although that possibly is a delay in the ability to communicate the pain that he's experiencing.

We need more studies!

Additionally, I think there should be studies conducted about analgesics. I'm convinced that either they have 'less effect/ no effect/ a delayed effect' which has a significant impact upon how a patient should be treated e.g. waiting considerably longer for the pain medication to take effect before starting any 'stitches' etc.
Best wishes

Sass E-mum said...

Jeni got it right. I HAVE actually hit my desk with my head when taking a phone call from an especially boring and repetitive work colleague. So for once, I think I can appreciate the desire to bang my head.

Fortunately it doesn't happen often. More likely I get stressed when someone talks across the end of my sentences - gaaah that drives me nuts with anxiety that I'll never get to end the conversation satisfactorily.

Jade said...

In my line of work I have followed up on such studies as you have posted. It blows me away to see that people assume that just because someone has a learning disability, physical disability, or on the spectrum that they have a higher tolerance for pain, emotional or physical...

I can only imagine the stress you've gone through in your life. In fact when I think about it, and think about the stress I see my clients mothers going through it makes me wish that I could reach out and give you a hug like I often do for them.
I think you are amazing... I really do.

As for me...well... A lot of things stress me out. Hehe in fact you just replied to my "stress blog" but outside of my personal issues the topics of child abuse, lack of appropriate funding for a variety of issues, and the lack of disrespect shown all across the world...those are topics that often bring stress to my life.

Keep on keepin on, I think you're doing a wonderful job, and do it with grace with I admire.

buffalodick said...

I retired(quit!) my job... I'm so stress free I starting to remember what boredom feels like!

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Honeysuckle said...

Just thinking again about the £100 for GPs to check people with learning disabilities...I agree that it's disgraceful on one level that it's felt to be appropriate. but on the other hand, knowing about it saurely gives parents more leverage? Is it that different from schools receiving extra cash for educating our children and young people - again, exactly what they're paid for in the first place?
I know if I had uncoperative or unsympathetic GP (we actually had a lovely one) I'd feel stronger about demanding my child's rights to proper medical care. I might even be mentioning it pretty early on in the conversation so she/he knew that I knew.

Jorgo said...

That was a really well written post Casdok - as usual very thought provoking.

The squeaky wheel gets the oil!

In this case, a lot of wheels may get oiled that need it!

Ali said...

Thanks C - I hope I win too! hugs Ali x

Paulene Angela said...

Excellent Post Casdok, I had no idea about the extra bonus for GP’s who carry out yearly health checks on people with learning difficulties.

I am pleased there is some positive action, however I am asking myself where has the doctors code of ethics gone?. Why does everything in this selfish world have to always come down to money! I am probably missing something here and I apologise on my ignorance, but my intuition is telling me that we are advancing on some fronts and going backing on others.

I tend to suffer more from anxiety than stress, the usual worries of parents, our children’s future, if I get sick. I try as much as possible, to focus on the now (Book: The Power of Now).

When I do get stressed I have noticed that my son immediately absorbs my vibrations, it’s not good for either of us.

david mcmahon said...

I didn't know about the 100-quid bonuses.

Cheryl said...

Oh, this post is wonderful. Such an important issue, that is not dealt with properly. All professionals who work with children need to look closer, learn to identify and understand when there is pain, that can't be expressed verbally. Excellent points, thank you for making me more aware of this issue.
XXXXXXXX

The Dotterel said...

Too much, and I don't try hard enough not to get stressed by it. Interesting stuff on pain, though. It's like the assumption unborn babies don't feel pain, or animals. It has everything to do with communication.

Mia said...

I try to pay special attention to whether or not my Alex is feeling pain or in discomfort. It's so hard to know when he doesn't verbalize very well...but he's getting better.

As for stress...disorganization!

Ellee Seymour said...

I can understand stressed you must feel Casdok, and I consider you to be saintly.I had no idea about the GPs extra payments either, they should be doing this anyway.

deb said...

I often wonder about Katie and whether she has pain or not. Sometimes it's obvious like if she's cut herself or had a tooth pulled but I wonder about pain with her periods and whether or not she gets headaches. I usually have a headache every day and take something everyday. My other two kids don't get headaches but I do worry about her. I think it's something I need to work on with her, getting her to understand what pain is and how to let us know she is having it. Thanks for the reminder. Take care.

Palm Springs Savant said...

Oh my goodness casdok- that photo is disgusting.

I gte stressed out when I have so many e-mails at work that i can't get to them and I know people are waiting for me to respond with direction. Its silly that something intangible makes me so stressed, but its the culture we've created.

Grit said...

stress - yes - i'm sure now i can take a donkey load of it with a couple of extra buckets on top ... but your post makes me think more carefully about others around me.

Jocelyn said...

You always make me think. It's breathtaking to think of pain uncommunicated, pain unresponded to. And what agony for the families that love those who are locked in pain.

At this very moment, that is what stresses me out.

Seen This Scene That said...

We do not have such a National Stress Awareness Day over here, but I guess even without it, we know how stressful modern daily living can be.

E said...

Loved loved the zebra.
Stress....let me count the ways. I need a massage just thinking about the stress. Stress awareness week is very stressful...

Mama Zen said...

Right this second, I'm stressed just thinking that such a substantial number of caregivers are foolish enough to think that people with learning disabilities have a higher pain threshold! Good grief!

Samantha said...

In a word, everything! A job I hate, lack of sleep, leaving at 8am and getting home at 9pm, pretty much every part of my life! But hopefully, one day, it will all be worth it.

Kahless said...

Dont get me started on GP's. Our local GP surgery is wheelchair inaccessible. Drives me and Mrs K nuts.

They are so greedy to offer this add-on service and that, to generate more income, but what about spending some bloody money on simple accessibilty measures.

Urgh!

Kahless said...

Oh yes, that is what gets me stressed!

lime said...

what makes me stressed? well that first picture is a good start. yeeeouch! otherwise i'd say when i have too many demands placed upon me at once i begin to get stresed. and pain, back pain and migraines make me really unpleasant to live with when they are occurring.

this is so important for folks working with people like C to understand. when someone can't tell you with words or even picture cards how badly they feel caregivers need to be tuned in to signs of distress that may indicate pain.

rainbowmummy said...

Casdok I have put up a little thank you post :0) thanks x

Merelyme said...

ouch! that image is...something!

this was excellent information you give. i think for my son, the information processing is sometimes slow...to register that he has hurt himself but when it does...he let's you know that he is in pain. glad to see you still blogging. you are doing a wonderful job at promoting awareness as always.

Andrea said...

Apologies for posting off topic here -- I'm mostly leaving this comment because I wasn't able to find an email address to contact you directly.

I wanted to get in contact with you to see if you might be willing to copy/paste the following item from my blog into yours? I'm trying to encourage more people with disabilities, our loved ones, colleagues, and other allies to write emails to Obama to increase the visibility of disability issues among his staff. Letters are wanted not only from across the United States but also from around the world. The following Call to Action explains more about how and why:

http://wecando.wordpress.com/2008/11/07/disabilities-email-obama/

Dave Coulter said...

A very interesting post, indeed. What stresses me out? A computer that crashed, that's what!

:O

motherx said...

I never knew that! Stress is my middle name.......Everything is stressful to me at the moment!! This is so interesting and I never knew about the bonus that G.Ps get.

wrongshoes said...

Trying to navigate a busy grocery mega-store makes me very stressed. To much sensory input!

Angela said...

very interesting.

Right now stress from morning sickness potty training and isolation

Meredith said...

Currently I have two stress sources: 1. Assignment deadlines (gahh!), 2. and the student hostel director's little project what involves me being homeless in less than a month now. He doesn't like cutters for more stupid NT reason and doesn't care that I'm poor and live so far away that I can't finish university if he kicks me out.

Help?

She said...

Wow! This information is so necessary for everyone. I think that when someone can't communicate the pain, people forget to look for signs of it.

And I agree. Everyone experiences pain! And we all respond to it in some way. That's why it's so important to KNOW each other.

You always make me think more deeply. I appreciate that about you.

Oh, and I get stressed about money and grading papers.

Michael said...

I was in hospital for 13 weeks after getting badly burned, now that was painful, baths in salt water were the worst, thankfully that is now nearly 20 years ago

J said...

This is a very good post that gives us all something to think about. I agree that seeing your child suffer and feeling quite helpless is indeed stressful.

At my house it's the transitions that causes the most stress. I'm home from Ireland now after twelve days and we all have to adjust. My older one had a little meltdown on the way home from the airport but fortunately it didn't last long.

Jim said...

Pain is part of my life and pain often teaches me the reality of life. Pain matures me.

Thanks for sharing.

Kari said...

This was a great post. I should make a copy of this to carry in my purse in case it is needed in the future.
My son had His Tonsils and Adenoids out and his palette shaved. The nurse tried to tell me since he Had Down Syndrome and had a higher tolerance for pain I didn't have to give him the Codeine that is prescribed for everyone else. UGH

nitebyrd said...

I'm wondering why so many, especially those involved with treatment and care of those with disabilities, would think that they have a higher pain tolerance? It doesn't seem right. Obviously, that was your point and I hope that caregivers will be given more enlightenment in the future.

Meredith said...

In some cases, I DO have high pain tolerance. (Hence my cutting stim.) Unfortunately that does not include lemonjuice+salt+vaseline treatment of scarificated areas (had a skin-removal one this morning and the artist told me to treat it like this for a month to get a nice even scar... but OUCH!!)
Actually, the person working with our kind has to know who has higher or lower pain tolerance and for what kinds of pain, as it can be VERY different in certain body areas, or with different types of injury or whatever. Even mood can influence pain tolerance.

Cyndi said...

Wow, thanks for shaing that info. I often wondered if Matthew had a higher pain tolerance. Lately he's been dropping to his knees/falling down a lot (on purpose) on the hard wood floors..that's gotta hurt!