Here are some suggested organisations that offer expert advice on SN.
So the diagnoses for ds are all in after three years!(11 Posts)
ASD, Dyspraxia, Hypermobility 7 out of 9 on the Beighton scale, Sensory Processing Disorder.
We knew about the ASD, got formal diagnosis at aged 5. The rest I just knew there was more going on and went back to the GP over and over again. In the end I saw one I will love forever who listened to me rant on and said "well I think there is more going on too, lets re-refer him for assessment shall we?"
5 months later 3 more diagnoses. Now a month later after hearing I am finally ready to start researching and getting my teeth into what he needs now.
ANY information anyone can give me re our other three diagnoses would be welcomed. Obviously I have googled but when he got the ASD diagnosis I learned more on here from other parents than I learned anywhere else. He is on middle rate DLA for care and lower rate for mobility. I have been told though that I should reapply now and mobility should definitely go up. Not sure I can face that to be honest. Think will hold out until it comes up for renewal.
So any information would be gratefully received. Especially about he Hypermobility and SPD as these things were totally off my radar and a huge shock when diagnosed, I suspected Dyspraxia so know a bit more about that.
I'm afraid I haven't got any practical advice to give about the new diagnoses, but just wanted to answer your post. Must've been a bit of a shock to get a triple whammy like that - sorry
At least now you know for sure, and can, as you say, start looking for ways to help.
My dd actually is mildly hypermobile, but is only 2yo so probably not really relevant. And I haven't really worked out what, if anything, I need to do about it
slack mummy How is it manifested in your ds? Does it affect him significantly? I know that swimming is supposed to be v good. There is a long-running thread on this section too, if you haven't seen it already.
With SPD, there are probably plenty of integration exercises. I'm sure it's the kind of thing BIBIC, for example, could help with, but their rates have gone up to something ridiculous now.
Have a great big glass of wine tonight.
Thanks for replying. I would say yes, it does affect him quite significantly just one example is his inability to sit at a table and hold a pencil etc, he really struggles with that because of his lack of core strength so when at school the time comes to do maths (which he absolutely hates) combining all that leads to massive meltdowns with aggression, spitting etc. Its a real trigger point. He takes a lot of evasive action to not have to do stuff that he finds uncomfortable or painful and if in doubt will just go on run about, which is not ideal.
He swims about five times a week and I am looking into a trampolining club for kids with SN as this is supposed to he helpful too.
It WAS a shock, hence sitting numbly for the past month trying to take it in. Now going to move forward with it though.
Will take a look at the thread you mention, thanks.
Hi my ds2 has several dx too & the one thing that has helped hugely & continues to help him is specialist senosry OT.
Two different specialist ot's (One motor & one sensory) both completed full assessments & worked together to develop an excellent programme working on his sensory processing, bilateral integration & planning.
I have found although ds2 has several dx's they all overlap so much trying to pick out indiviual things is dvery difficult.
For example ds2 has huge anxiety issues associated with his ASD but workign on his planning & biateral integration during SIT has reduced his anxiety & therefore leesoned his ASD type behaviours & therefore helped his ability to remain focused at school.
We were able to access ds2's therapy via our NHS autism team.
i would also recommend an IT assessment our local SN school offer an outreach programme (dont know if your ds is MS or sn) but ds2's IT support has allowed him to focus more on keyboard skills, giving him an adapted mouse & large (lower case) keys keyboard. He also uses clicker 5 & a couple of other programmes which all help him to be included in the lessons.
DS2 also has very floppy wrists & fingers (similar to hypermobility) typing is still hard work but definatly easier than holding a pencil.
IT support sounds interesting. His handwriting is very poor, he simply can't do it and a lot of his meltdowns came from being encourage
forced to in mainstream. He is currently in an ASD unit attached to a MS school.
"have found although ds2 has several dx's they all overlap so much trying to pick out indiviual things is dvery difficult."
That is so true, a lot of the stuff he has difficulties with can be attributed to one, two or even three of his diagnoses so its hard to know how to approach them sometimes.
He has good OT support and attends various workshops to help him with this though your OT support sounds a lot more detailed and intensive to will look into this.
Will also see if there is an NHS autism team in my area.
Will ask about a footrest at school tomorrow.
Thanks for replying.
I'm afraid I don't know anything about SN (just browsing as I suspect DD has a touch of adhd), but wanted to share a nugget of info about hypermobility. I have it to some extent (not been assessed on a scale) and have been seeing lots of people about my loose pelvis after pgs. The most recent guy told me something that multiple physios and osteopaths hadn't mentioned. Forgive me if you already know this but it was news to me. Hypermobile folk don't have any elasticity in their ligaments - they just have the stretchy part. So if the ligaments over-stretch then that is their new length and there is very little you can do about it. This can lead to permanent postural problems and pain. It's something to bear in mind with your son. I wish I had known that and refrained from martial arts!
My dd4 has asd and hypermobility . She cant walk very far because of pain , which causes her to scream and be up all night.
She cant hold pencils very well and so uses smartboard and i-pad at school instead.
The school she is at is mainstream , with unit for SN kids ..only the most severe children are in unit full time , and dd pops down for a bit everyday , but mostly she is in the "normal" class.
School has also provided her with aids to help her , footrests , step -up stools , smaller insert for toilet , special wedge cousion for her chair , grips for pencils ect .
DD4 also has a growth disorder , where the bones are much younger than her chronological age , so she is smaller than most kids her age <...dh`s oldest son has that also ...>
The school is fab and has also provided dd with swimming lessons every week and outdoor lessons <called wood walk class > , where dd can use a school provided buggy if needed .They also have their own ot and salt in school which have group lessons . dds own salt used to come in as well.<shes off the books now >
Best thing you can do is tell the school about the new dxS and ask what they can do to help .
There is a hypermobility thread now called "Hypermobility 2"
you may find these research papers of some interest.
Joint Hypermobility Syndrome collection
Sensory Processing Disorder collection
Dyspraxia - Developmental Coordination Disorder collection
Banjaxed - you just reminded me that there is a website to help people with hypermobility - which i found on the hypermobility/EDS thread on these pages. It had a list of sports, and those which are the best for kids to start that will build their core strength, but put the least pressure on joints. Because that will always be the pay off. My DS (9- next week!) has dx dyspraxia (now re- dx as somatodyspraxia) and SPD with some hypermobile joints. Building up the core strength is important, but hypermobility and general lack of co-ordination means that so many sports - as they get older - are not particularly viable.
school should provide equipment to help with writing/sitting such as appropriate chair, wobble cushion, writing slope. Ask SENco for help in using keyboard for typing in class.
Something my DS teacher has just started, is giving him lifting, carrying, pushing tasks at regular intervals in class - to get him up and moving around. It has helped his concentration. At the end of each session she makes him collect up books/hold doors open for whole class/ hand out new work etc.
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