Here some suggested organisations that offer expert advice on SN.
A short story by DS(35 Posts)
The Journey to Axe Island
the journey to Axe island was so tiring, yet Thom and Elenna Were buzzing with excitement not knowing what was to await them.
Whenever the friends were together they knew with their skills and courage, anything was possible. As they tiptoed to the thick, dark forest the deadly silence filled their ears. As they shivered around the corner the mysterious catbat beast known as scar was ready to pounce. Tom and tummy's were filled with butterflies
Out of the corner of their eyes, a black figure swooped in and out of the trees. Scar! The brave friends stood still with fear. Worried yet excitedly, they crouched. around the beasts neck hung the golden key. It was shining in the moonlight. Elenna used her wicked archery skills to shoot the arrow at scar to free the key. Their hearts were beating like drums. Suddenly, scars beady eye flickered, had scar seen the friends? They would have to go different ways for their devious plan to work.
Thought I would share it because I thought it was brill seeing as this is his first ever real story on paper instead of imagination and reality mix up
He still has major issues with writing but this was produced on clicker 6 that I mentioned before. Thanks to that he is now reading every day at school and has gone from spelling nothing to passing his 50 word target to 86 spelling words
All in 3 months!
I will bow out again now too much going on in RL so random postings at mo hence silly oclock replies
Hope you are all ok and hugs to those who are not xx
Really? oh! I will have a think about it as its quite a public thing. Could boost DS self esteem maybe seeing his story on the net
Although I am hoping they still have it in school as his laptop broke this morning so he wont be using clicker at home any time soon it really is one of those years! ahhhhhhh!
Hi Coff - I work at Crick Software, the makers of Clicker and would love to be able to share your Ds's writing in the success stories section of our website. It would be really great to share this with other parents who want to see how Clicker is being used.
Email email@example.com to let us know!
Gosh she does sound similar! Well her best friend is a year younger than her, very quiet, similar disposition and like DD who is cornish doesnt have the slightest touch of accent just very precise volcabulary and a "teacher like" tone lol Also mad on minecraft, likes swimming does not like going out and has to be pushed out the door but usually ends up here or portal or DD there yep on portal or minecraft. They even watch live stream at 6pm! madness!
DD is bright but its not just organising its also common sense there is none lol. She would walk all the way to school not realising that the weight of a bag of books isnt there because she has left it at home! and rather than ring from school she would walk ALL the way back!
She is great though and funny and good sense of humour just a tad of a worrier too x Your DS and DD would probably get on like a house on fire
Goodness Coff, she sounds just like ds2. He has traits, but not enough for a dx, is totally disorganised, currently obsessed with minecraft and loves maths and art!
He doesn't have a best friend, but is such a sweetie that all the other kids like him and are happy to include him in their games. There's a little group of boys with similar traits in his year that hang around together and he tends to be with them.
Interestingly at his OT appointment they asked him lots of questions about his organisational skills and seemed to be expecting him to be disorganised. They also asked about how easy/hard he found it to learn the time, days of the week, months and seasons and seemed to expect the answer that he still struggles with all of them, which he does. I thought at one point they were going to suggest dyspraxia/dcd, but they didn't mention it - though I suppose they might put it into their report. I came away wondering if poor organisational skills are a known factor in JHS.
Hope you manage to get hold of the good GP tomorrow.
oops crossposted with all of you as I forgot to press send!
Cant get appointment for today or just with the nurse anyway which would be more than useless and would have to still make a doc appointment.
Got to ring again tomorrow and see if any slots available. I got a particular GP in mind so it worth hanging on for x
Not sure about pushing for an assessment for an ASC though as she is so borderline. But if they keep on her at school then I will if that is what it takes to make them see.
She would be a hard one to spot. She has friends well 2 main ones. Has no crowd issues and quite happily went to camp and a school disco all by herself.
But she is also maths mad, art mad and great at it but its things like being so disorganised, mad on minecraft and portal. How many girls do you know that is craving to own the portal gun replica for her birthday only £200 and you cant do anything with it! but that is her desire. At 12 and starting her periods recently etc I would have thought the hormonal changes would have set in. She does hair and likes to look nice like her big sister but really that is as far as it goes.
Oh she is also the worst eater in history. Not a single vegetable or fruit.
Being asked to do too many things at once has lately got her in a state too. Its like its just appearing but I am thinking its all this senior school stress that is doing it.
Now I got two kids knuckle and finger cracking ahhhh! Only DS cracks his neck too
Me too Polter, local anaesthesia doesn't work on me (or ds2), no-one can ever get blood from me (or ds2) due to collapsing veins and I now suffer the painful consequences of all the clicks, locks and subluxes I had constantly as a child.
Having traced it back, we can go back 4, possibly 5 generations on my Mum's side of the family and clearly identify people who have/had JHS.
Cross-posted with moose
I too felt awful when ds was dx with it, he'd been complaining of pain and I'd been quite dismissive
I had never heard of it when ds was dx, but suddenly so much made sense. I went through years of tests as a child, numerous blood tests which were always problematic. Now I realise that this can be because of the hypermobility as can coordination problems and problems with anaesthesia... It was a real lightbulb moment.
"very flexible" "double-jointed" and joint pain screams hypermobility to me. My ds has a dx, I had years of unexplained joint pain as a child/teenager (unable to walk at times, constant sprained ankles and wrists) and realise now I have it too. There is a long thread/s about EDS/hypermobility, might be worth a read?
I had 'clicky hips' as well Coff and an unusal gait. Mum was told she was fussing by the GP back in the 70s, then in the 80s, as a teenager, I was constantly at the hospital for appointments relating to leg/hip pain and even supposed to have an op at one point (got it cancelled as a daft teenager, by telling them I didn't have pain anymore, because I was so scared of the op ). I now fit the criteria for joint hypermobility syndrome/EDS III but haven't bothered pursuing it, as I have enough medical appointments already between me and the dcs!
Hypermobile joints can indeed resolve as people grow older and not all people with hypermobile joints have pain, so wouldn't need or get a dx of joint hypermobility syndrome. BUT hypermobility can be exacerbated by puberty in many girls, due to the effect of hormones, so it's perfectly possible/understandable that your dd could have got worse recently. Growth spurts are another problem time and ds2 really struggles when he is shooting up.
All the extra walking, with books in tow, plus PE etc could well be putting too much strain on her joints. Moving in water is beneficial for many people with JHS, although for some super-lax people like ds2, swimming itself can be problematic (his hips, knees, ankles, shoulder and neck sub-lux as he tries to swim and he's in a lot of pain afterwards, but if he just messes about and moves around in the water he's fine).
Non-weight bearing, low impact exercise is great for strengthening the joints, so ds does pilates and moving in water every week. Running around, jumping, kicking a ball etc are not advised because they cause the joint to open and close too much.
Good luck at the GP appointment and pop into the EDS/Hypermobility thread if you need any advice or info as I am still very new to it all (and feeling really guilty that we never realised how bad things were for ds2 ) and the lovely people over there are really knowledgeable and helpful.
Hi Coff. Loved Ds's story. He is doing so well to have made such a lot of progress.
Glad older is still moving forward.
Sorry to hear about your other dd. Why are PE staff so insistent on thinking that everyone complaining of pain must be skiving. My dd's joints got considerably worse after a teacher insisted that she at least walked round the cross country course even though they had a letter from me saying, on the consultant's advice, that she be excused PE. And now that she can't do it at all and the physio has spoken to the PE dept, she says that the teacher is always grumpy with her. I hope you get to the bottom of things with your dd. It is hard watching them being in pain with nothing you can do about it.
Thanks guys x
No she has never had any OT. Eldest DD had "clicky hips" when she was born and had a strange gait but that was back in 1990 and nothing was done. It seemed to rectify itself the older she got but she was a late walker at 2 years.
Middle DD had similar issues and was x rayed and we were told all is fine she is just very flexible and "double jointed" and up to 10 years on she had no problems or complaints of pain. However this last 2 years she has kept falling funny on her ankle and complaining it hurts then last year she complained it hurt in the groin area. She had done sports day at the time and although lithe she was never a sporty person and always got upset for being last although participated. However she is a water baby when it comes to swimming and has no problems in the water?
But now she has further to walk to school and being senior school more walks to classes etc. Said she is useless at PE and the teacher doesnt understand that it hurts her to run, jump etc.
She had flu just before xmas and was off her feet with it due to being weak. First day she was up she was complaining of hip pain again.
It settled but this week she keeps saying she has done something to her leg and then yesterday said in the knee has a "tingly" funny feeling and then she has pain shooting down her leg to her foot? But said sometimes it shoots upwards also.
a) I am wondering if its a tendon issue as in when she had flu not using her legs it kind of ceased things up a bit?
b) there is something more sinister going on.
I am making a GP appointment today and using a bit of Mum Power
Oh Coff, poor dd.
I know you have loads on, but she does sound like my ds2 with her hips and fingers and he now has a dx of joint hypermobility syndrome. We had a similar response from the GP, but I insisted on a referral and the paed said ds has the most flexible joints he'd ever come across, then the physio said he's the bendiest child she's ever met. Can you see a different GP and insist on a referral?
Not a lot happened for ds at first, physio were crap, but suggested school nurse for school issues, who then referred to OT and he's just had an awesome OT assessment resulting in proper seating, a specialist PE teacher going in to 'teach' his teachers how to differentiate for him and lots of other stuff.
Great news about ds and dd. Ds is doing so well holding himself together with the extra work and asking for a break rather than bolting - please tell him how proud we all are of him. He has a huge fan-club here y'know.
As Ellen said, at least your dcs are taking it in turns, although sometimes I think that can be more exhausting than all three at once, because there's never any let up.
((hugs)) hang in there.
Blimey, coff33, you aren't half being put through the wringer, lately. (((Hugs))) At least they seem to be causing you heartache one at a time. At least you are getting really good at fighting these battles, shame you have to.
Oh coff, poor dd are you going to push for assessment for her? At the very least, a physio appointment might be a good idea for her joints? Have you looked at hypermobility?
Very very good news about big dd and ds
Aww thank you all Yes I am very very proud of him as its not just the school but the effort he is putting in himself too. He is struggling this week as they have inched a bit more work in his direction and its only 5 mins more but that is like a year I think to DS. He is doing it but the strain is on his face at the end of the day. Tics are worse but still he is holding it together at school.
It needs to be done of course otherwise he will stay stalemate and I am glad they only altered one thing and they have noticed the change as he is asking for extra chill time but they allow it as he is asking and not running but he understands this "little extra" thing is still there to be done. They are doing good
I am fine thanks for those who asked. RL is more down than up. DD is on the up and still away and has applied for an extension. I miss her.
Middle dd I am watching like a hawk as its her I am worried about at the moment. She is finding it tough in senior school and although not dx with anything she is on a thin line of either or so to speak. She is querky but outgoing and wanting to fit in but how many girls do you know that find their THERMAL fleece leggings the only thing comfortable. Brain box yes, common sense and organisation awful. Writing detests but does it but forever getting grief for it. I know she is suffering as her squint is back when she is talking to me and she is cracking her fingers more. (these silly things you notice now you know what to look for )
Stupid detentions for being last into the classroom are dished out etc and now some homework she had to hand in beginning of term via email which she completed and emailed first week of hols a MONTH ago she suddenly gets a email??? from this teacher saying thanks but not what she had asked for and how disappointed she was with her effort that she may have to give her a homework not done slip..........which means detention. DD explained to me what she had to do and as far as I can see she has done it. It was a map and she had to pen through every continent. So she found a map on net, saved and copied it to Paint and after 3 grilling attempts used paint to draw through every continent. She put a picture of santa to the side of it and I have a feeling the teacher doesnt like her immaturity as obviously santa wasnt needed but it did look like a santa watch type of map! DDs homework does look like a spiral going from centre out so I am assuming the teacher thinks she has just swirled a pen round but I have grilled it with my eyes and it goes through all continents regardless!
Now this teachers email was dated 18th Jan!! she has taught dd since then. They obviously dont TALK to pupils anymore <sigh> I have had this before with eldest dd and being bullied at this school and I know ds will never survive there but there is nowhere else for DD to go and its early days but I do want to kill the teacher LOL as my little girl.
Also she is complaining of pain in her hips and legs. She is "double jointed" in the hips and fingers etc but PE is causing havoc with pain for some reason now and of course she is getting raked over the coals for being rubbish at it. She is tiny and slim and I think the PE teacher expects more from her because of this.
Doc said she had a lot of play in her hips still but to leave it and come back again as she may have just overdone it. Oh gosh this post is long its like a diary lol.
Anyhow I am meeting myself coming back as the saying goes. It may take awhile but I will be back in full swing when life is a bit more in order xx
<big waves> Loved the story. Excellent pace and lots of lovely crunchy vocab.
The boys a genius coff
Great story and fab imagination.
He has a bright future ahead writing Beast Quest books - he's done Thom and Elenna proud!
Lovely to hear from you with such a positive post. Hope things are ok in rl Coff - you have been missed on here. x
Super - what a lovely turn of phrase.
Wow that is amazing, well done miniCoff what a little star you are. Coff you must be so proud that is amazing progress in such a short time. xx
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