How fun. Mr. C is back up watching YouTube, after he did something ridiculous to one elbow while straightening out the mattress pad before bed.

He was already up once a little while ago to put some of his go-to Tiger Balm on it, but that apparently didn’t do enough to let him get to sleep. Doesn’t want to take anything for it, still trying to figure out if it’s just more “bendy joints being obnoxious” or if there’s some actual structural damage. (He rarely will take so much as a Tylenol, but the reasoning this time got me a tad concerned.)

Knowing him, if he’s even mentioning it? It must be pretty bad.

Would basically just curse a lot if it were my elbow by now– as one more thing–but of course it’s different when it’s somebody else. Getting more of a taste again of really wishing there were more I could do to help.

Screening for Celiac Disease in the Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome Hypermobility Type (PDF Download Available)

clatterbane:

I was reminded by seeing that post from yet another person with both EDS and probable celiac, and yeah.

In particular, unexplained gastrointestinal symptoms, including recurrent
abdominal pain, bloating, nausea, reflux, vomiting, constipation,
and diarrhea, are found in 35–86% of JHS/EDS-HT patients
[Hakim and Grahame, 2004; Castori et al., 2010; Zarate et al.,
2010]…

These findings indicate that, in Italy, CD is 10–20 times more
common in JHS/EDS-HT compared to the general population. The
reason as to why an autoimmune disorder like CD is more common
in patients affected by a genetic condition apparently etiologically
unlinked to the immune system remains unknown…

JHS/EDS-HT is
thought to be caused by mutations in gene(s) coding for components of the connective tissue. Recently, increased Ab titers against
collagens I, III, V, and VI was demonstrated in CD [Dieterich et al.,
2006]. This evidence prompted the authors to speculate for an
increased risk for autoimmune connective tissue disorders among
patients previously diagnosed with CD. In fact, the cross-linking between gliadin peptides and interstitial collagen(s) may facilitate
anti-collagen Ab formation and consequent chronic inflammation
of the connective tissue. On the contrary, a constitutionally abnormal collagen (as expected in JHS/EDS-HT) might uncover an
autoimmune reaction mediated by anti-collagen Ab, which, by
virtue of the gliadin–collagen cross-linking, could facilitate the
onset of CD in genetically predisposed subjects…

This relative high rate of CD in JHS/EDS-HT
might contribute in explaining and, possibly, treating some disabling features, such as chronic constipation, chronic fatigue
(including the chronic fatigue syndrome), and osteopenia/porosis,
which are frequently encountered in JHS/EDS-HT. Further studies
in larger samples with different geographic origins are expected in
order to substantiate this evidence and translate it into the clinical
practice.

Reminded of this again, since almost every health problem I’ve run into seems to be associated with EDS.

(Ones that weren’t directly iatrogenic, at least. Been a couple of those.)

Screening for Celiac Disease in the Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome Hypermobility Type (PDF Download Available)

Connected to something else I’m trying to get the words together to write about some, it occurred to me that yes I did actually get some comments about sitting “wrong” as a kid.

Those had more to do with “you’re going to cut off circulation in your legs!” or “you’re going to ruin your knees!”, however.

Just a little difference in concerns and expectations, yeah.

slashmarks:

gingerautie:

slashmarks:

onewordtest:

gingerautie:

tygermama:

so it’s official, my eldest has been diagnosed with autism

there’s a lot of talk about different supports that I will be able to access, it’s all in the air at the moment, I’m still processing

basically I’m ‘well, now we know for sure and can direct our efforts appropriately’

part of me is worried about these ‘social skills classes’ though, I follow enough autistic people to know that these programs can be sketchy, I don’t want him to be abused

I’m trying to respect his sensory issues, which at this point are – needs something for noise as needed, doesn’t like how lotion feels on his hands but he’ll let me put it on him (dermatitis), he needs a new bed probably because the loft bed is squeaky and he doesn’t like it, doesn’t like hugs so when he does hug me, it definitely feels like he’s doing me a favor

he has dysgraphia, so we need to work on fine motor skills and his gross motor needs work too

baby steps, though

I need to get both my kids Alphasmart Neos, they really like the ones the program has

any one have any suggestions how to help him wash his hair better, I dunno, he’s 13 and touchy about the subject

Re dysgraphia: “working on” motor skills isn’t likely to do much. If the bit of his brain that does that doesn’t do that well, then practice won’t make much difference. 

With stuff like handwriting, he probably already practices it lots, and any extra practice (even like an hour a day) isn’t going to make a significant difference if there’s already 3-4 hours of writing built into the school day. 

Even large improvements aren’t likely to bring his handwriting up to “typical” levels. The 3 requirements here are 1. speed, 2. legibility and 3. endurance. If you can’t write at a reasonable speed, readable to most people, for long periods, then you haven’t reached the minimum standard for handwriting.

My handwriting is either illegible, slow, or painful. I can choose one out of the 3 requirements. So I get a computer in exams, and I can take notes on a laptop. Being pulled out of lessons to practice handwriting for hours on end made no difference, accommodating me so that my handwriting didn’t affect my exam results did.

Re: hairwashing: It really depends what the issue is. If it’s sensory, depends what the specific sensory issue is. Could also be difficulty adjusting to how fast your hair gets greasy during puberty. Dry shampoo might be useful. Explicit instructions on how you’re supposed to do it (eg. lathering) might also be needed, we sometimes miss stuff.

Agreed on the dysgraphia. My handwriting is bad, but I have a note taker accommodation in college, and I get on fine.

Re: hairwashing, etc – it definitely depends what the issue is and in that regard, thirteen is probably old enough to start developing some good self-awareness and self-advocacy as an autistic person. So I would encourage him, even though it might take a while to emotionally adjust to being newly diagnosed, to explore his being autistic and take ownership of the experience. There were so many things I had difficulty with, that I really didn’t understand why, (showering being one of them), that once I was diagnosed and explored all the things about autism from other autistic people, I was able to figure out and change for myself. Plus, it is an embarrassing subject to talk about with your parent at that age, so even if you know you are having trouble, you are likely to want to figure it out on your own. So if he can become even more familiar with things like sensory issues and executive dysfunction, and ways other autistic people have dealt with these things, he can begin the lifelong process of navigating being autistic on his own self awareness and strength, and advocating what he needs.

This is going to sound silly, but I suggest you ask your kid if it hurts
when he writes, and if he says yes, how much writing it takes for his
hand to start hurting.

Handwriting problems in autistic people may be because of physical problems in the hand, not mental stuff. Hypermobility is really common in autistic people for reasons that aren’t well understood, and one of the things it can cause is loose finger joints that lead to poor control of the pencil and severe pain when you write – which autistic kids often think is normal, and which screws with your handwriting.

I never complained to an adult because I assumed writing hurt everyone and I didn’t want to whine, got marked down in grades for illegibility all through K-12, and was diagnosed with a physical disability in college. Now I get a laptop in all of my classes. Right after I was diagnosed, I told my sister – who was at the time almost thirty years old and in the hospital after delivering her second child – that handwriting isn’t supposed to hurt, and she was shocked. She has the same condition.

If this is the case with your son, practicing more may result in worse handwriting, because the problem is that the motions of handwriting put too much stress on fingers. There are braces that can help (I use Oval-8 splints when I have to do something like draw a diagram or write a check) but much of the time it may be better to avoid having to hand write in the first place.

Wait, writing might hurt because of a physical problem?

Like, I was aware that it wasn’t normal, but I just assumed it was a side effect of the motor control issues? I mean, I do write mostly from my elbow, which makes my writing kind of huge. Yeah, I do fine motor control from my elbow. Really good at it for short periods of time though, apparently elbows are better than fingers for that???

And yeah, this is a thing that needs to be established. Like, pulling a kid out of lessons to make them do a boring thing, and pulling them out of lessons to make them do something painful is a distinction teachers should be aware of. 

I get aches in my hand and spreading up my arm when I try to handwrite for more than 10 minutes or so.

Yeah, if you’re autistic and handwriting hurts it’s very likely it’s because of hypermobility.

Hypermobility/EDS type III is a connective tissue disorder where, basically, your joints aren’t held together very well by your tendons and soft tissue, so they just kind of slide around and you have to exert a lot of extra effort moving around. It’s associated with joint and muscle pain that starts at some point in adolescence/early adulthood, fatigue and a variety of other more obscure problems that don’t affect everyone with it.

The diagnostic criteria for hypermobility are the Beighten criteria. It’s unclear whether hypermobility and EDS type III are actually different things, although I’m personally of the opinion that they aren’t; the major difference in who gets diagnosed with what is perceived severity and whether you have problems other than joint pain. Both are very, very commonly comorbid with autism, and nobody really knows why. In the US, both are generally diagnostic by geneticists; I’m not sure about other countries.

Finger joints that bend backwards further than straight, bend ninety degrees back from the hand, thumbs that can touch your wrist, etc, can be signs of hypermobile finger joints that would cause handwriting problems. If you lean very far into the paper or put your head down on your other arm while you write, that’s another sign some people display – it’s an attempt to seek more support.

Ring splints and Oval-8 splints can help (I use oval 8 because they’re what my OT specialist had and they’re cheaper) as can chunky pencil grips, slanted desks and adjusted grips, but honestly, if you have significant handwriting problems that don’t go away with splinting or other adjustments it’s probably better to just arrange your life so you can usually type. Repeatedly stressing hypermobile joints in ways that cause pain can cause worse damage over time.

slashmarks:

onewordtest:

gingerautie:

tygermama:

so it’s official, my eldest has been diagnosed with autism

there’s a lot of talk about different supports that I will be able to access, it’s all in the air at the moment, I’m still processing

basically I’m ‘well, now we know for sure and can direct our efforts appropriately’

part of me is worried about these ‘social skills classes’ though, I follow enough autistic people to know that these programs can be sketchy, I don’t want him to be abused

I’m trying to respect his sensory issues, which at this point are – needs something for noise as needed, doesn’t like how lotion feels on his hands but he’ll let me put it on him (dermatitis), he needs a new bed probably because the loft bed is squeaky and he doesn’t like it, doesn’t like hugs so when he does hug me, it definitely feels like he’s doing me a favor

he has dysgraphia, so we need to work on fine motor skills and his gross motor needs work too

baby steps, though

I need to get both my kids Alphasmart Neos, they really like the ones the program has

any one have any suggestions how to help him wash his hair better, I dunno, he’s 13 and touchy about the subject

Re dysgraphia: “working on” motor skills isn’t likely to do much. If the bit of his brain that does that doesn’t do that well, then practice won’t make much difference. 

With stuff like handwriting, he probably already practices it lots, and any extra practice (even like an hour a day) isn’t going to make a significant difference if there’s already 3-4 hours of writing built into the school day. 

Even large improvements aren’t likely to bring his handwriting up to “typical” levels. The 3 requirements here are 1. speed, 2. legibility and 3. endurance. If you can’t write at a reasonable speed, readable to most people, for long periods, then you haven’t reached the minimum standard for handwriting.

My handwriting is either illegible, slow, or painful. I can choose one out of the 3 requirements. So I get a computer in exams, and I can take notes on a laptop. Being pulled out of lessons to practice handwriting for hours on end made no difference, accommodating me so that my handwriting didn’t affect my exam results did.

Re: hairwashing: It really depends what the issue is. If it’s sensory, depends what the specific sensory issue is. Could also be difficulty adjusting to how fast your hair gets greasy during puberty. Dry shampoo might be useful. Explicit instructions on how you’re supposed to do it (eg. lathering) might also be needed, we sometimes miss stuff.

Agreed on the dysgraphia. My handwriting is bad, but I have a note taker accommodation in college, and I get on fine.

Re: hairwashing, etc – it definitely depends what the issue is and in that regard, thirteen is probably old enough to start developing some good self-awareness and self-advocacy as an autistic person. So I would encourage him, even though it might take a while to emotionally adjust to being newly diagnosed, to explore his being autistic and take ownership of the experience. There were so many things I had difficulty with, that I really didn’t understand why, (showering being one of them), that once I was diagnosed and explored all the things about autism from other autistic people, I was able to figure out and change for myself. Plus, it is an embarrassing subject to talk about with your parent at that age, so even if you know you are having trouble, you are likely to want to figure it out on your own. So if he can become even more familiar with things like sensory issues and executive dysfunction, and ways other autistic people have dealt with these things, he can begin the lifelong process of navigating being autistic on his own self awareness and strength, and advocating what he needs.

This is going to sound silly, but I suggest you ask your kid if it hurts
when he writes, and if he says yes, how much writing it takes for his
hand to start hurting.

Handwriting problems in autistic people may be because of physical problems in the hand, not mental stuff. Hypermobility is really common in autistic people for reasons that aren’t well understood, and one of the things it can cause is loose finger joints that lead to poor control of the pencil and severe pain when you write – which autistic kids often think is normal, and which screws with your handwriting.

I never complained to an adult because I assumed writing hurt everyone and I didn’t want to whine, got marked down in grades for illegibility all through K-12, and was diagnosed with a physical disability in college. Now I get a laptop in all of my classes. Right after I was diagnosed, I told my sister – who was at the time almost thirty years old and in the hospital after delivering her second child – that handwriting isn’t supposed to hurt, and she was shocked. She has the same condition.

If this is the case with your son, practicing more may result in worse handwriting, because the problem is that the motions of handwriting put too much stress on fingers. There are braces that can help (I use Oval-8 splints when I have to do something like draw a diagram or write a check) but much of the time it may be better to avoid having to hand write in the first place.

Excellent addition. I have the same hypermobility issues with handwriting, with nobody recognizing these things might be connected until I was over 30. When it is a fairly common problem. I was amazed when a friend was urged to try ring splints, and learned that writing isn’t supposed to hurt. I didn’t know it could not be painful, either.

(Which also extends to some other tasks which involve repetitive careful control of tools, like prepping and cutting vegetables. Even though a lot of those would be less relevant yet for a kid.)

Growing up, practicing more did just cause more pain and make the results less legible. It was probably frustrating for everyone involved, not knowing what was causing the problem. It definitely did not help the situation at all.

Good suggestions there, if this might be relevant to your son’s dysgraphia. I still haven’t tried ring splints personally, and mostly just use some type of keyboard whenever possible. I’ve found that a touchscreen keypad tends to cause less strain on the joints than a physical keyboard, though of course that may be different for someone else.

The best of luck figuring out what’s behind the dysgraphia and how best to address that, regardless!

Besides getting the HMS diagnosis (fitting hEDS criteria) when I was 14 and then not having it get treated as relevant to even other joint problems? One reblog reminded me of more fun when I was younger.

Unlike that writer, I really did develop a restrictive ED. Especially on top of the unrecognized celiac, that was not great for the general state of my health for a while. To put it rather mildly. (And yeah, I think some damage done then has been continuing to catch up with me, which is a slightly different story.)

The ED did get diagnosed. But, besides basically getting some kind of recovery going eventually in spite of the treatment? The classic health problems from starvation got put off on depression and anxiety. Not even kidding. They knew I was dealing with an ED, and obvious complications from that were still all in my head. Because silly teen girl.

It just didn’t get treated like a physically dangerous problem at all. Presumably because my BMI never dipped under 20 or so, but who the hell knows. ETA: That also still looks pretty scary with my frame, which was what got my family flipping out.

(Basically the same thing also happened later, after I finally got the celiac dx at around 30. With the guaranteed malnutrition complications to go along with that. I’ve had literally zero followup under the NHS, and consistently got predictable complications brushed off. Some of them pretty alarming and, yes, dangerous as hell.)

But yeah, that’s just one of the reasons I do not feel safe even mentioning the ED in medical settings. Not even to try to get them to back the fuck off with triggering it. I have been shown plenty of reason not to trust them around any perceived mental health problems. And I know good and well that I’m far from the only person with experiences like that.