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EDS Hypermobility No. 2

999 replies

SparkleRainbow · 23/09/2011 17:20

We reached 1001 threads, so here we go with a new thread. This thread was originally started so we could get together and share experiences and expertise in Ehlers Danlos Syndrome, Marfans, Benign Joint Hypermobility, and any other medical conditions including connective tissue disorders which cause joint hypermobility, pain and all the associated symptoms.

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spidermanspiderman · 17/03/2012 09:37

Hi everyone, all quiet here on progress front, as in nothing happening or likely to happen in the what is actually wrong with ds area in the near future. Have decided to see paed again before going ahead with private assessment.

Hope all ok and not too stressed re gosh, occ therapists etc.

Poor ds is tired out. He is only 4 poor thing and not at school yet, make him do loads! We do music class (we have a fab young girl who is studying for an msc in community music - so ds is her fav project), reading (ds likely dyslexic and therefore want to give head start - dh and everyone in his family suffers from it), preschool gymnastics and swimming (which we now get an assistant for).

With regards to music helps with lots even maths apparently.

Good news ds loving tree fu tom and does the spells a lot. Have noticed an improvement in his arm movements. We watch it at least twice a day and all take part. Also ds has a week off as off to butlins with his best friend on monday - yippee.

SparkleRainbow · 17/03/2012 18:38

Ellie I haven't forgotten....I will sit down tomorrow morning and put my mind to all the questions you might want to raise, do you want me to email you a copy of ds's pdss outreach initial assessment?

Bizzey - you so belong here, as THC says all our children are different, and even how they are affected seems to differ at different times of the development. It seems very logical to be that some muscles and ligaments get over tightened as a result of the instability above of below them... they are desperately trying to compensate!

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TheHumancatapult · 18/03/2012 09:22

happy mothers day to all the mums on here .I got a card that ds3 had written in himself and they told me he never write

ReindeerBollocks · 18/03/2012 10:40

I second THC happy mothers day for all the wonderful mothers on this thread, who work so bloody hard all year round!!

Lots of Thanks for you all.

ariane5 · 18/03/2012 11:09

Same experience with GOSH when dd1 was 3, they do just literally shut the door in your face, dd was crying for me and it was horrible i was so annoyed i sat outside the room every session (much to their dismay and smirking at me) BUT we were up there at time of bombings and the hospital was locked up so all the poor parents who had left couldnt get back to their dcs for HOURS it was awful as a few were only 3 like dd and they would not let anybody in or out so i was glad i stayed put.

If you think your ds needs you there then stand your ground and stay, they can be quite dismissive (they make me feel awful for still using buggy for ds despite the fact i dont yet drive and he wont walk far) it is very much a case of 'our way or no way' up there.

That said, the physio programme did help dd a lot she didnt reach the targets they had set for her but still improved for a few weeks untill she got unwell and couldnt keep the physio programme up at home.

hope everybody is having a lovely mothers day today Smile

SparkleRainbow · 18/03/2012 13:31

Happy Mother's day to you all.

Grin THC that is fanastic news, you must be very proud of ds!

What is the thinking behind not allowing parents in the physio sessions anyway? Is there some deep pyschological claptrapreason behind it?!

Ellie - for your meeting which I think is tomorrow, here are my proper thoughts, you may not need all the areas I have considered:

  1. Exhaustion - starting later, or finishing earlier, particularly as stamina builds up or after a period of more profound pain or sublux dislocation etc. Rest periods during the day when there can be quiet time either on the carpet or in another space where can even sleep if necessary. If they want to build more independence - a card system or similar where as ds2 can collect himself and show to adult to express his level of tiredness or need to stop, this includes outside playtimes and especially lunchtimes.
  2. Gross motor skill adaptation - more support may be needed to ensure safety when climbing over any play equipment, or to help using bikes etc. This m,ust be provided and not ignored because they don't do it for other children, under EA2010 and SEN code of practice, and Every Child Matters school must do a reasonable (which is a lot) adaptation to ensure child has full access to the curriculum. This includes adaptation of activities, resources, adult supervision etc.
  3. Fine motor skills - encouragement in adult supervisied and independent fine motor skill activities, puzzles, threading, sewing, block building.
  4. Moving around school - being at very front or back of line, with adult at all times is essential. Clear school wide rules about which side of the corridor people walk, to hold doors open especially for those younger children, sign posted in corridors, supported in assemblies and all teachers understanding why.
  5. Information sharing about ds2. Depending on nature of issues at moment, does whole staff need to be aware, does there need to be a sheet with essential info and photo of child in with school register (for supply teachers) and up in staff room for other staff. Who will take responisbility for ensuring anything relavent is shared with temp personnel - secretary, Head....can't be SENCo as realsitically may not know when suppy staff including lunchtime supervisors are in.
  6. Clear emergency procedures if pain, or dislocation or subluxation.
  7. Care plan, sometimes called health plan is essential piece of STATUTORY information the school must have. It is the law, don't let them fob you off.
  8. School trips etc - specific risk assessments need to be carried out, not just generic for rest of the children. How will they cope if he becomes too tired to walk, or in pain? Where are toilet faciltities for him.
  9. Dietry adaptations, does he need a high cal diet which school catering servicve has obligation to meet. Does eating take time and so will need to be given more time to eat, but allowed to do so in social group, not isolating him or making him different. Also many schools use bench typ tables with attached seating, my ds can not manage to sit on these and so needs to be seated in a particular place in the dining hall, and on a normal chair. School are actually going to get rid of these tables and go back to normal tables so as to stop my ds being different.
10. Handwriting -sepertae from both gross and fine motor skills, handwriting can be a real problem and it may not show itself at once, it took until 2nd year at school for it to really show for my ds. Pencils with hand grips, writing slopes, wide pencils to start can all help. 11. seating, special seating is available for support, and for encouraging development of core muscle strength (wobbly cushions), foot rests can also ease pain in lower backs and make writing and sitting at tables much easier. Does the classroom have a soft seating or bean bags areas where ds can settle down and fall alseep if necessary. 12. Do there need to be special toileting arrangements, toilets with access, are there incontinence issues, and therefore someone who will support ds, and not leave him to it himself. If this is an issue for ds, don't let school fob you off with not being allowed to do this...it is a safeguarding issue for them yes, but it is also a safeguarding issue for dc not to have support...they have to put appropriate measures in place to protect themselves, not supporting is not one of them. 13. Regular reviews must be timetabled and booked in advance. Informal one at end of first week, formal one at end of second week, formal at end of half term, then end of term, if all well then termly reviews should be ok. 14. does ds need to be on the SEN register. If issues are purely physical then legally no, but it is up to you. My ds is not on the SEN register and is not statemented as not necessary as physical only and therefore covered by EA 2010 and NC and ECM legislation. 15. Point of contact, TA or class teacher who is with ds and who will give you feedback over the day if there have been issues, and who you can tell if there have been issues at home.

I hope this helps, am sure I have missed things, but others may have more ideas, and as I said it may not all be relevant.

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TheHumancatapult · 18/03/2012 19:18

That's intresting Ariane my question going to be. Since it is a problem with making the collagen and it is obviously genetic

They can't cure it anyway

But were see trouble is ds3 has delayed understanding so won't be able to follow instruction unless rhey break into very simple steps and cut out the waffle even more so if noisy/busy

Add in delayed speech so they will struggle to understand him .

Yes I don't like their attitude either towards buggy/wheelchair they told me well if that's all he can walk well build the day around him forgetting that I have 3 other dc and don't drive either

But I'm ready for them and shall see , I'll be right outside the door if not in the room and havd my own seat anyway so if they remove chairs to stop parents sitting there then that's going to backfire Grin

TheHumancatapult · 18/03/2012 19:33

Not just that I Want to know what the program is because going need work out a way for me to help him with it since getting down on to floor is a pita mInd getting up even harder

Plus want to work put how we got into his day as ds3 already needs get up between 6-630 for school and not home to 4.30 and my chances doing anything then are zilch

Plus I'm not convinced it is Eds professor pope reckons there is far more going on

elliejjtiny · 18/03/2012 20:33

Thankyou so much Sparkle. I've written a load of notes with all your points as headings and added a bit about transport as well. I talked to DH's auntie who has children with SN and she seemed to think I was asking too much from the school. But her children were born in the 80's and things were very different then.

TheHumancatapult · 18/03/2012 21:02

thank you sparkle im going to keep copy of that for his AR in May

SparkleRainbow · 19/03/2012 08:23

You are both welcome Smile

Things have changed, there is nothing in that list that I wouldn't expect to be considering as a teacher.....cos long long ago I used to be one.... I am glad things have changed, in the 80's "inclusion" and equal opportunities meant nothing.

Good luck today Ellie.

Can't help thinking that line from GOSH is saying all the right things, with zero appreciation of the practicalities for the situation. In a perfect world of course the day would be tailored around our children's needs......then again in a perfect world they wouldn't have those needs in the first place..........

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elliejjtiny · 19/03/2012 14:34

In 1993 one of my classmates went for a dyslexia test. When he told the teacher his mum was going to pick him up at lunchtime and why, the teacher said "what's the point? You're not dyslexic, you're just a lazy toad". That was in front of a class of 11 year olds Shock. Thank goodness things have changed.

DS2 woke up this morning having puked in the night and then started with the runs. So DH went to the meeting armed with my notes while I cleaned up and changed sheets. We are getting a referral to wheelchair services which is the main thing I wanted and an OT is going to sort out seating in school. Not sure what else as I just got 10 mins to chat to DH before he raced off to work.

TheHumancatapult · 19/03/2012 14:36

i cant even get ds3 back to wcs as GOSH adamant no .so i just sourced one myself

Sparkle Gosh seem to like boxes

SparkleRainbow · 19/03/2012 15:18

THC - Yeah and putting their little ticks in them. Hmm

Ellie - well sounds like a positive start, hopefully your dh will be able to tell you more later. If the school "heard" about the wcs referral, they will not be in a position to make a fuss about whether certain adaptations may be necessary!

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TheHumancatapult · 19/03/2012 19:43

sat here crying .I knew it had affected dd hand wiring and her shoulders clicked but few times she has descibed her knee as popping .Well tonight she was going upstirs and heard her screaming her knee capp had popped .

It has gone back in and she s moving it so not going to drag her to A&E but think its going to hit her with a venegnce

ReindeerBollocks · 19/03/2012 22:01

THC - sorry to hear about your DDs knee is there any chance she could visit her physio/Dr tomorrow as an emergency to get painkillers and any extra support for the immediate future. That sounds immensely painful for her I hope she isn't in too much pain. I'm sorry that I don't know more about this condition yet so can't even give better advice.

Bizzey - "she did the B TEST that you told me about ...6/9.. oh he does need OT fingers/wrists/elbows too flexable she says....(I told you that!!!) .I think lower limbs are being kept in place by very very tight ligaments which unless i stretch will get tighter as he grows..any advice??". This sounds exactly like my DS (actually i think you've described your DS as very similar to mine before). The most annoying thing about this is I know DS has BJH pains in his legs and his ankles but because they don't bow outwards they've said he definitely doesn't have BJH in his lower limbs.

Our physio suggested an Xbox kinect for DS to improve his mobility. I think I'll have to wait and see if it works, but on a positive he does start hydro therapy soon. His school have also got him a writing block for his pencil and told him to try his best. Problem is its starting to affect his confidence and he thinks that he's not going to be able to get into Year four because he's too stupid. We aree working with the school to prevent anyone saying this and also to try and boost DS's confidence.

bizzey · 20/03/2012 00:05

HI ALL thanks for all your supportive messages lots to say in no particular order ..but the funny one first....toook ds for 1st piano lesson today and this 150 year old battleaxe could not understand why he did not know his L/from/R or why his fingers did not move how she wanted them to..even though i had explained things to her before...I lost count how many times she told him to stop "slouching"!!!..

funny now but awful then at least i had my ds2 with me to back me up on how horrible it was.

He was sitting on a shiney piano stool in front of a GRAND PIANO !!!! He looked good!(Andre previn didnt spring to mind though ..but the clip of him and Morcame and Wise did !!)(look it up.. notes not necessarily in right order clip.)

RB..confidence at school is so important esps going into yr4...have you got extra 1-1 ..ds has has BHLS? teacher 1x week (Mrs ,,,,,who he adores and i think another lady who does basic hand writing with him we are still practicting a..b..c..where ..want ..why and so on..he works so much better on a 1-1 than in class setting( we are talking REC work here).

Xbox kinect we do not have, but do have a wii which is is brill if you are in the mood to slice poeple in bits and do fencing and stuff(?wii sports) .Good for cardio/vasculor and anger management (NB do not frighten kids with real anger grunting).

Need to look into panic/ang attacks soon ??happening more than what i would like!!(him not me!)

SparkleRainbow · 20/03/2012 13:02

THC - I am sorry. I too was hoping for you that she was not going to be badly affected. I wouldn't have gone to a & e either, if it had popped back in. I do hope she is not too uncomfortable today. Instant message me if you want to chat some more. Sad

reindeer - our physio suggested the wii balance board, and it has been very helpful, as have the hydro therapy, and the writing slant, pencil grips etc. But ds is still struggling to come to terms with the fact he is not like his peers and is never going to be, despite all his support and all his effort he will have to come to terms with the fact that he will never be able to writing clearly, quickly and accurately. This is one of the reason he sees a clinical psychologist...and he really needs her. The self confidence issues really raised themselves in yr3 and now in yr 4 by the way. A year ago my ds was talking about suicide. Sad

bizzey - bet he looked lost and small in front of a grand piano! Maybe a nicer and slightly younger piano teacher might be in order Wink My ds had to go back to basics in writing when he moved schools too, and still has lots and lots of one to one to help with it, his TA will also scribe for him if necessary...my problam at the mo is he refuses to use the computer because he wants to be like everyone else, when I need to get him to use it more before he gets pulled behind even further. I can not stress enough how useful the NHS clinical psychologist has been, even the rubbish rheumie has admitted this, it was our GP who referred ds orignially.

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TheHumancatapult · 20/03/2012 14:04

sorry was ust so fed up last night as thought she pretty much got away with it .

Have tube gripped it and shes gone to school.She gets no phyiso as had no real issues but need get a referal am on yahoo sparkle .

Intresting as think we are probably uckier as ds3 is in a speech unit of just 9 dc the other dc have been more accepting .Next year when more time in Ms y3 be intresting .but he is also not really aware of how different his needs are but think some iof that is wheelchairs are normal to us as I use one ful time and due to Special kids as well so he is more used to dc being differnet

TheHumancatapult · 20/03/2012 14:06

reindeer did they not teach you how to stretch his tight muscles .?

Couple of ways get him to stand on tiptoes and strecth up also on a floor make sure you flex his ankles up and down .

also another option is rolled towel under his knee and get him to press down

bizzey · 20/03/2012 21:19

THcatapult... Love the towel under knee thing..purpose to streach idea .Am going to give it a go ..

ALL... parent afternoon tomorrow ..feel sick already..

Had a good one with ds2 today..will get to 4c at the end of yr4 in maths and literacy(nat ave for yr6)..might blow a gassget then and stay there but gives me a bit of confidence that i am an okay mum and that it is not my fault that ds3(dx) is not (never!)going to get there....ddddds1..who has arrived safely..is going to take his level 6 in maths after SATS(??yr 8/9).....

Last year ds3 was WORKING towards a level 1(yr2)...

But i comfort myself in knowing that they are happy..happy children who love me and each other..(when is ds1 back?????.. they keep asking !!)

He has had supply teacher since Jan so will be interesting to spk to him

Wish me luck!!!!

SparkleRainbow · 21/03/2012 11:58

Did I put the eds national foundation guide for educators and parents link up....I can't remember, but just in case....www.ednf.org/index.php?option=com_content&task=view&id=2127&Itemid=88889255

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SparkleRainbow · 21/03/2012 12:08

I should say this link is US, but it is free, I believe the UK based EDS support group also produce one, but you have to pay for this, not a lot but still, and I bet it is no better.

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SparkleRainbow · 21/03/2012 12:25

Just when I get down about professionals dealing with ds....I have spoken to the TA for ds this morning, who is attempting to calm headteacher who is worried she is not doing enough to help ds, and clinical psychologist has rung and organised a colleague who ds doesn't know to go an observe ds three times to try and better help him with hjis coping strategies fr pain, and being different from his peers.

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mycarscallednev · 21/03/2012 13:49

Hi everyone - having a crappy time here again - results from genetics are in, then DLA comes back without taking all his diagosis into consideration, then find we can get it looked at by 'someone else', then go to Tribunal, then find that to get the school we need we also have to go to Tribunal............... the day has been shite from flash to bang.

Just as a quick straw poll everyone - who gets what on DLA - if they [DLA] have even deemed themselves able to award it in the first place that is [bitter, bitter angry thoughts that are only getting worse!]