Sensory Perception Disorder / Proprioception

[TinksandFloris]

Hi,

My 7 year old DS has just been diagnosed with this. It's on the autism/dyspraxia/dyslexia spectrum. Does anyone have any help or ideas with this?

Thanks

hello, I don't have any experience that will help but my 6.5yr DS is in the process of being diagnosed with SDP.

What has helped me is a book I was recommended 'The Out of sync Child' (brought it off Amazon.)

We are waiting for the assessment, and I am dreading the start of term.

Hope someone else can offer you some more helpful advice soon.

Hi,

Don't dread the assessment. We've already had ours and it was as painless as it could be. We had a great occ therapist.

Keep me posted. Just trying to sort out our new learning aids. They put our son on 'school action'.

Hi

My 5.1yr DS has just recently been diagnosed with exactly the same: SDP in proprioceptive, vestibular and possibly auditory processing. The assessment was done by an OT and physio and my DH said it was really good. The advice they have given us has been great and we are in the process of getting into a routine to implement the exercises etc. We are talking to his school tomorrow about what they can do in the classroom. We are already noticing some positive changes....he's much better at going to sleep since we started 'brushing' and we give him plenty of tactile input in the morning to get his system going. I have also found that doing a quick burst of activity before trying to get him to sit down and read/write (although writing is a whole other issue altogether) has been helpful. Good luck and perhaps all of us who are getting similar diagnoses could keep in touch with help and advice. Our DS is on school action plus, if that's of any help

Hello

It is soooo good to talk to people who are in the same situation!

How long did you have to wait from referral to appointment? Did you consider getting a private assessment? DH is reluctant - hasn't believed that there was anything wrong, but is coming round to the idea now.

Everything has come from school, so would be interested to know more about school action. Are the school receptive to the therapies put forward by the OT? Do they (OT)have a big input in terms of time at school, or do they recommend and it is up to the school to implement it?

Do you both feel like a weight has been lifted from your shoulders or that you are still at the start of a very long road??

Would love to keep in touch with how everyone gets on.

Good luck

Hi Plus3. It's still very early days for us. We were only diagnosed in July.

We now have a sensory box full of toys that can be squished and pulled etc. We are currently using Nessy Fingers to learn touch typing to help him at school and he uses writing grips and slopes from a company called special direct.

We went with a private OT, it was about £350 all in with two visits and an indepth report.

Just waiting for our copy of the out o the out of sync child.

If you have to wait for NHS diagnosis it can take up to 6 months and the Doctors we encountered weren't very receptive to the idea of SPD.

Good luck.

And yes, We're glad we finally know what is going on.

Oh and it is up to the school to implement it. School Action is where the school recognise the child needs help but is not able to go onto a statement of special needs.

Our school have been massively receptive to the changes needed.

Hi Tinks and Plus 3

We were referred by my GP, after my insistence in February and have since that time seen a developmental paed, who recommended an OT assessment. We were told there was a 5 month waiting list via NHS but.....and here's a great tip, we said we were happy to take a cancellation at very short notice and so we managed to get the OT assessment at the begining of Aug. They confirmed SPD in vestibular and proprioceptive senses. They have provided us with a sensory 'diet'. The school have been more than happy to implement the recs via School Action Plus. I do think it is a case that for a lot of people SPD is still a very new diagnosis which means it can be a struggle to get anyone, including the DH's to recognise it.

It is really helpful to get some more understanding of the obstacles DS faces on a daily basis and hopefully get the school and teachers to see the extra input and patience needed. I still find it all a bit overwhelming (not sure I can process it!!)but it's really good to be in touch with other people going through a similar thing.

Good luck to us all and keep in touch

How is everyone getting on? Am reading the 'out of sync' child at the moment and due next week for our second meeting with the OT at school.

Pencil grips, writing slopes and hand exercises have been started. How are you all getting on?

Hello.... Well the new teacher seems to be doing everything to avoid talking to me. Tried to ask how ds had settled in and was told that it was early days & she was still trying to remember who everyone was...... Said that he had produced a nice piece of work that day.
Not sure what to do next- will request a meeting but am (obviously) anxious that the longer this takes to sort out, the harder it will be to get methods in place to help DS.

Tuppence's advice was helpful - will go to the gp once I have spoken to new teacher. It's such a waiting game

Glad things are progressing with you both though!

How are you getting on plus3?

Had a second meeting with our OT. The long and the short of it is the school don't have the capacity to give him the 1:1 he needs so I am filling that gap 5 mornings a week as his scribe.

Apparently getting a statement is out of the question but I'm looking into it at the moment.

DS is awaiting his sensory diet....which we are paying for as there is a huge waiting list for NHS in our area. They also don't implement occupational therapy sessions so we're going to have to pay for those too.

How is everyone else getting on? I felt a sigh of relief once we found out what it was but suddenly feel so burdened with it all.

On the plus side we're seeing such an improvement at school with me being there. DS is actually able to complete his work and get his ideas out much easier and his confidence is already improving.

Let me know how you all are.

Tinks
x

hello everyone

Ok. teacher has said definately Ds has some kind of problem -no doubt. She also said some very lovely positive things as well which has made me feel at bit better for him at school. However, think we are going to go with the private referral. Another mum at school has 2 children with sensory/ADHD issues and said the waiting list was about 2years!!!

Burdened is the right feeling for it.I don't feel like we have even started yet.

I'm glad things are improving for your DS Tinks

Well, yes and no. It's not easy for me to be scribing 5 days a week for him. Then there's the school's disbelief in his abilities and the fact they think I've been doing his work for him when I haven't and I've known all along he had it in him.

They still won't put him on school action and are thinking about getting a second opinion even though they gave us the private OT's name and number as one to use. And so the struggle begins or continues. Whichever way you look at it.

We have good days and bad days. We have lots of times where he just can't seem to concentrate on the work and so he falls behind. The scribing is definitely helping and he has got a computer programme called 'nessy fingers' to help him learn to touch type.

The writing slope is starting to steadily improve things for him along with the pencil grips. Just waiting for a sensory diet from the OT to see if we can improve concentration and muscle-tone for the hands.

He is also hypermobile so think I need to look into that more.

Glad your teacher is being positive. Let me know how things continue, and yes go down the route of private if you can.....the time wasted waiting for NHS is crazy.

Hi

It's very nice to read this thread as I self diagnosed Scallywag after reading the 'out of sync child' about a year ago and it ticked so many of his boxes. Fortunatly he was only still 3 then and we've had an excellent playgroup leader who identified his issues which made me feel better about not being an over cautious mum!! He's been on action plus there and they've used strategies to help him adjust to the environment. The big challenge came at xmas with the start of school looming, so I pushed really hard through my health visitor to get an assessment via the paediatrician and made appointments with the school head and teachers - fortunatly my daughter went to the school so I knew them already. The paed has referred us to CAMHS (Child & Adolescent Mental Health) who were pretty useless and basically referred me to parenting classes, as obviously I had difficulty in parenting him!!! Scallyway was adopted at 13 months but his emotional/behavioural delay does not seem to be recognised as needing support by them! To be honest not too upset as not heard much good about CAMHS! We now have our OT appointment and after speaking initially to the therapist on the phone I'm very hopeful they will be able to help as they actually recognised and understood SPD, which as Tuppence17 said, many people don't recognise it as a disorder. More importantly it appears it's often misdiagnosed as ADHD which needs more medical treatment rather than OT.

Can I also pass on another great tip from my health visitor? I claimed for disability living allowance on her recommendation as she recognises the extra care our kids need. I was scathy about it as I didn't really see my son as disabled. However, I received it very quickly after the application at the middle rate of about £47 per week. It's great to know that that money can go to help with any equipment or activities that can support his improvement. It's a really long form to complete and you have to put down warts and all but it's worth it!!

Overall the most important thing I discovered is that you have to push for what you feel your child needs so they don't get labelled naughty. Scallywag has been at school for half days for 3 weeks now and has had a few issues....but of course he's completly unaware of them and is really enjoying it so far!

Will be keeping an eye on the posts as to be honest you're the first group of people I've come across that has experience of SPD and it's quite comforting to know you understand what we're all going through!!! Lets hope SPD starts getting more accepted as a disorder and that a bit more support becomes available....

Hi all [smiles in a deflated way]
Right. Ds is on school action which jeans they have put into place some strategies which target his antisocial behaviour to the other children (rewards for not doing it basically), the ability to have his own space for certain activities, the use of 'fiddlers' during carpet time.

They said that no referral has happened yet because it needs to come via the medical route to be taken seriously but I said we were looking for a private OT which they seemed very please with & said that they wold happily accomodate any recommendations.

I feel really sad. I should feel pleased that something is happening.

Please all keep posting & hope things are improving for you all.

Hi folks

My Ds has just had a great week, (DS is 5.2 and currently diagonosed with proprioception and vestibular processing difficulties). He even got this week's star award for concentrating at carpet time....I'm sure as you know, a massive achievement. He's been chatty and telling me lots of useful things about his week. I'm sharing this as I think it might give us all a bit of hope that there will be good weeks as well as bad weeks. Having said all of that, we've just had a horrible going to bed hour...but that could be just coz he's a 5yr old boy at the end of a school week...or not. Who knows...Keep sharing the good and the bad stuff, I really think it helps

Hurrah! We have an appointment this week for an OT!! Feeling very positive today

How are you all doing? (and I mean all of you and not just your DC!!)

Can I just ask how you go about finding a private OT? My son has lots of difficulties in school - he's 6. He was adopted at 12 months after a very chaotic start, is currenly on school Action Plus, has an IEP, is under CAHMS and has an ADHD diagnosis. Has just started therapy there and is medicated.

I have asked school about getting an OT assessment but given that a friend of mine has waited for over 12 months for her son to be assessed I'm not holding out much hope there.

My little lad has lots of issues and I strongly suspect sensory issues are amongst them.

I'm in South Wales if that helps?

Try here Blackbird. Its where we goy our private OT from.

Hello! I am new to Mumsnet! I decided to join when I read this particular thread, so it's nice to meet you all.

My son (4.5 years) has been diagnosed with SPD about a year and a half ago. Our problem is that we currently live in Dubai, which is not as progressive as the UK in support for this type of situation. The schools here are all 'for profit' and are not encouraged to accept a child who needs a little extra support. So we are thinking about moving back to the UK.

I am worried that we will encounter all new problems once we return, i.e. waiting lists, disbelieving teachers/schools, etc.

My son has received excellent therapy since we've been here, speech and language therapy, OT and play therapy. However, the cost is back-breaking and our insurance doesn't cover it. I worry that we will find ourselves in a worse situation moving back in that his therapy would be covered by the NHS, but it would be a long wait for him to recieve it or he would not get enough.

He has progressed so much in the last year and a half and we are so proud of him. We do not want a move back to the UK to be a set-back for him.

I would love to have some feedback or your thoughts regarding the NHS and your local schools.

Thanks.

Hey Taracat,

Well, if you go down the private route here things get done much quicker, obviously.

And as with any school, it depends on the quality of the teachers and whether they are willing to recognise he needs extra help.

If you're going to move back I'd speak to a few schools first on their views of helping your child and get to talk to the SEN. That's how you'll know.

Congrats Plus3, how did it go?

Hi everyone

Right. The OT was lovely.Discovered huge problems with DS's eyes - he was struggling with convergence and bilateral intergration. (basically he couldn't fix and follow) she recommended a behavioural optomolgist. We then did around 7 weeks of eye excercises (which were difficult for DS at first because he was having to retrain his eyes) but the good news is that it has worked!!! We are next due a review in 6mths.

He also has problems with vestibular (which is in part his eyes problem), auditory and proprioception processing which we are now working on, and a retained neck reflex (which really ties those senses all together I think..)

It is just amazing to watch what he can't do. but he is really enjoying his sessions with the OT, and the homework she sets is quite fun for him to do.

We have just started a course of therapeutic listening, and the list of possible outcomes is almost unbelievable. But 7 weeks of eye excercises worked so I am keeping an open mind.

This is great to read. I have had an unhelpful NHS assessment which has just focussed on the physical issues rather than the sensory/visual needs. Will probably be going down the private OT/behavioural optometrist route too so I am so pleased that you have had a positive outcome......

am so happy to have found this thread... had ot assessment with ds 5.6 this week .. initiated by his state school due appalling handwriting and co-ordination issues.
OT seemed lovely and picked up loads of things - thinks ds has audio issues and real proprioception issues which seemed to explain some of his behaviors but no 'diagnosis' as such waiting for her report and we are going to have 4 therapy sessions and then other support groups... my head a bit blown by all of this at the moment..

thank you for getting through this waffle and it really helps knowing not on our own....

Very impressed with NHS care so far here (West London) who knows how long it will last...

Hi, My DS is just about to turn 5, and has attended the nursery at his school since 3. He seems to have always had one to one help, but only just after Xmas did I fully realise the extent of help he was having. He is our only child, so I assumed, (wrongly) that the "special box" he was having, and the one to one with two other friends was part and parcel of the nursery group.

When he started school last year he was having six hours a week of one to one, with IEP's being written up and meetings being held, but I still thought this was how schools taught nowadays and all children were having it. It wasn't until I dropped him off for school one day that his one to one teacher explained that his hours were going to go up from 6 - 8 a week to try and help him become more independant, that I finally twigged there was something not quite right here. When I asked them to sit down and spell it out in black and white I was totally shocked, felt so awful I had been letting my son down, and a complete idiot for not understanding all of this before.

We have since had meetings with the school, who have been brilliant, and ahve put some measures in place for all of us to follow, but I was quite upset that I completely missed what I should have picked up on, but talking to the one to one teacher, they have said they have to be so careful how things are put, the whole issue seems to be floaty, fluffy, "well, we need to get your son to concentrate more, and this is how we will do it, instead of saying, Right, these are the problems, which seem to point to this, perhaps we could sit down and discuss alll of this.
I have now researched his "issues" and we have all agreed he seems to have proprioception problems, and I have now got an appointment to see a paediatrician in the next couple of weeks. But, do they diagnose fully? Sorry for the long post, but this has rocked me to the core, and my hubby is only just coming round to the idea that there are some "problems" even though DS has had us climbing the wall sometimes, and we have put it down to being naughty, when now I understand he is not.