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Nice People 13: Nice Save
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Happy Birthday HJD!
Not much to report here, youngest had his maths resits this week so is a bit stressed and utterly exhausted but apart from that, we have diddled along quite nicely without too much drama.
He's still avoiding going out apart from to college though.....We made it! All three boys have graduated, it's been hard work but it shows there is a possibility of a chance of normal (ish) life after a diagnosis (or two) of ASD. It's not been the easiest route but I am so glad I ignored everything and everyone and did my own therapies with them.
Eldests' EDS diagnosis 4.5.10, mine 13.1.11 eekk - now having fun and games as a wheelchair user.0 -
EDS, like most things, come in different ranges of severity. James is far more severe than I ever was at his age, I didn't dislocate like he does (save for my ankles) for example. James also has some crossover to Marfans as well, so that needs to be taken into account.
Josh has the incredibly bendy fingers and until recently, didn't really dislocate...now his hips come out. He has a slightly different crossover type of EDS to James as he also has the bleeding issues.
Youngest had loads of problems walking when younger because his ankles were so bendy, he is very bendy now but doesn't dislocate at all.
It wouldn't harm to get it checked out though, hand specialists are great if you can get referred to one as they can make up splints to help or even write to the school to suggest using a laptop/tablet during lessons and exams.
Thank you Sue.
At present, he has only two symptoms - he can bend his fingers further than normal people can, and he finds writing painful - although mostly painful in his forearm rather than in his fingers. He only gets 2/9 of the Beighton criteria (both little fingers bend back to more than 90 degrees) and he doesn't have any of the other symptoms you mentioned in your PM, unless his vision problems count. (I haven't yet tracked down what kind of vision problems are associated with EDS.) He has slight long-sightedness, a minor difficulty with aligning both eyes with each other vertically, and a tendency to find that white surfaces glare at him, for which he wears tinted glasses. Otherwise his eyes were healthy last time they were examined, which was by the specialist dyslexia optician. There is no family history that I'm aware of in either my family or LNE's of any hypermobility problems.
At present I have an open mind as to whether his writing pain is associated with his extra-bendy fingers, or with the serious break of that arm in "the accident" or something else. Tomorrow he is going to try writing with his left hand for several minutes to see whether it hurts. If it does, we can rule out the accident as the cause of the writing pain, because he only broke his right arm. OTOH, if it does turn out to be the accident that's caused this, then it will open up all sorts of avenues for faster and/or more intensive treatment, because the defendants will be liable to pay for any private medical treatment that is indicated.
Some time ago he reported that throwing overarm with his right arm was painful. I got him referred for physio, and he had several sessions with associated exercises to do at home, and progressed to the point where throwing overarm was only mildly uncomfortable. I would be thrilled if we could have a similar success in dealing with the writing pain. We shall have to wait and see, though.Do you know anyone who's bereaved? Point them to https://www.AtaLoss.org which does for bereavement support what MSE does for financial services, providing links to support organisations relevant to the circumstances of the loss & the local area. (Link permitted by forum team)
Tyre performance in the wet deteriorates rapidly below about 3mm tread - change yours when they get dangerous, not just when they are nearly illegal (1.6mm).
Oh, and wear your seatbelt. My kids are only alive because they were wearing theirs when somebody else was driving in wet weather with worn tyres.
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Re vision problems, one of my eyes focuses and refocuses all the time making it difficult for the optician to get the correct measure of my sight in that eye....she joked that along with the bendy body, I also had a bendy eye! Luckily, she is an EDS expert optician as there are certain types of EDS which can have an impact on vision. Same with dental problems, EDS patients are more likely to suffer increased bleeding and infection after treatments and suffer other dental problems. Both Josh and James have a problem with the numbing injections....they don't work at all on them, a common problem in EDS patients.We made it! All three boys have graduated, it's been hard work but it shows there is a possibility of a chance of normal (ish) life after a diagnosis (or two) of ASD. It's not been the easiest route but I am so glad I ignored everything and everyone and did my own therapies with them.
Eldests' EDS diagnosis 4.5.10, mine 13.1.11 eekk - now having fun and games as a wheelchair user.0 -
Dqwd..........“The great enemy of the truth is very often not the lie – deliberate, contrived, and dishonest – but the myth, persistent, persuasive, and unrealistic.
Belief in myths allows the comfort of opinion without the discomfort of thought.”
-- President John F. Kennedy”0 -
Good and bad news!
Bad news: there's a spider in the bath.
Good news: it's quite a bit smaller than me.No reliance should be placed on the above! Absolutely none, do you hear?0 -
Good and bad news!
Bad news: there's a spider in the bath.
Good news: it's quite a bit smaller than me.
You can't always say that about spiders in Aus!
I had an interesting afternoon. I was waiting at a pedestrian crossing and the cars stopped. I noticed that a couple were arguing in a car. The woman opened the door to get out after the man raised his fists.
I walked up to the car and told the man to stop at which point he drove off so I called the police. I hope they shove their tazer up his Aris.0 -
You can't always say that about spiders in Aus!
I had an interesting afternoon. I was waiting at a pedestrian crossing and the cars stopped. I noticed that a couple were arguing in a car. The woman opened the door to get out after the man raised his fists.
I walked up to the car and told the man to stop at which point he drove off so I called the police. I hope they shove their tazer up his Aris.
There are some good points in all this.
The woman was arguing back.
The woman got out of the car and walked away from the argument when things escalated.
The man did not actually hit her.
You showed that you, and other people, care.
The man did not hit you!
The bad point is that he may take it out on her later, when you are not around. I know the police find it very frustrating and difficult dealing with domestic situations.No reliance should be placed on the above! Absolutely none, do you hear?0 -
There are some good points in all this.
The woman was arguing back.
The woman got out of the car and walked away from the argument when things escalated.
The man did not actually hit her.
You showed that you, and other people, care.
The man did not hit you!
The bad point is that he may take it out on her later, when you are not around. I know the police find it very frustrating and difficult dealing with domestic situations.
Ah, I've not told the story very well. She opened the door and he restrained her. He drove away with her in the car.
TBH, I'm not that bothered about being hit. It doesn't hurt very much.0 -
Ah, I've not told the story very well. She opened the door and he restrained her. He drove away with her in the car.
TBH, I'm not that bothered about being hit. It doesn't hurt very much.
It's those superhero tendencies Everything that is supposed to be in heaven is already here on earth.
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Ah, I've not told the story very well. She opened the door and he restrained her. He drove away with her in the car.
TBH, I'm not that bothered about being hit. It doesn't hurt very much.
Oh dear! As you say, taser up the aris time.No reliance should be placed on the above! Absolutely none, do you hear?0
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