sensory processing disorder not being recognised

[MrsStark1]

sorry post may not be well written but I am crying as i type.

Background is that my daughter was privately diagnosed with spd and we had nhs paediatrician looking into further issues.

Ive just spoken to the paediatrician and was told the nhs ot do not recognise spd so wont help which also means school wont help as they will only help if paediatrician says so.
Also bad news for the rest of the incestigation as its now at a standstill so nothing will get done.

I have noone to talk to and just so fed up and upset

WHAT!! Absolutely ridiculous! Many children are diagnosed privately because NHS OT services are so depleted

NHS OT do recognise it in my area and can diagnose it as Sensory Processing Dysfunction but they cannot do anything other than offer advice!

In terms of school not recognising it that is bollocks! If a child from another country came with a private diagnosis of being blind, would they say we dont recognise private diagnoses then?? No of course they wouldn't!

Utterly ridiculous, ask for a second opinion! Paed is bonkers!!

Be kind to yourself

That's ridiculous. My DS doesn't have an NHS diagnosis either but his school has never questioned his DX and have put loads of support in place. Have you given the school a copy of the private DX you have?

I'm sorry you're so upset - I know how disheartening it is :(

2 Separate issues - the diagnosis / assessment by Paed is one issue, but the school not helping is separate.

the school should be meeting the child's needs, whether the child has a named diagnosis of anything or not. YOu need an appt with the SENCo and preferably class teacher, and to go through together with them what the issues are, and what 'reasonable adjustments' they are going to make, to meet those needs.

Thank you all.

Just so fed up. I fully support everything my OT said in the report and fully support the dx. My OT is going to do a home and school programme and therapy sessions are being arranged.

Apparently it had been talked about with head of OT dept but paediatrician will write again and copy me in. He had done a conners questionaire but that hasnt shown up anything I dont think. He said its puzzling. Hes now referring to camhs and clinical psychologist i think. With possibility of some social communication difficulties.

My gut is telling me to go privately again to see if there is anything else but I am not sure if its just me or not. I need someone who can tell me if its likely or not.

As far as school are concerned they have an IEP and provision map in place for her learning needs not spd and fiddle toy and cushion.

OT asked for her to have regular movement breaks but not allowed. The school have no understanding of spd. They keep saying they will wait for confirmation from Paediatrician and the teacher and sendco both have copies of the report.

She copes well with her sensory issues in school but as soon as she starts walking home the meltdowns start. She cannot focus in school and finds sitting still hard. she is behind in learning and finds socialising hard. outside of school she has major social communication and anxiety difficulties and doesnt behave NT.

Even if SPD isn't recognised as a diagnosis, it is still recognised as a set of symptoms. If your child is stressed by being jostled to the point of losing the ability to self-regulate, then your child has a need to avoid being jostled, for example. As the school are ignoring her need or regular movement breaks, then they are not going to meet her educational needs because they are essentially forcing her to remain in a state where she is in pain and they expect her to learn in that condition (they'd have mutiny if they tried that with DS1).

SPD seems to be a complete can of worms in terms of who will or won't diagnose it. Our NHS OT suspected it in DS and our NHS paed then confirmed it (along with dyspraxia, and ASD and ADHD traits). To confirm the diagnosis, however, the paed told us he was obliged to use the word 'Difficulties' rather than 'Disorder'. However in spite of a genuine NHS diagnosis and it being written into DS's Statement, our LEA changed OT provider and the new OTs had the cheek to tell us that they didn't regard it as a genuine diagnosis so they weren't going to treat it at all. Quite unbelievable. After a battle with the OT provider that lasted several months, we moved counties and fortunately are now in a county where he gets what he needs!

Can you get an ed psych report that might help?

Good Grief, mrsstark. I feel for you when the system starts doing this bonkers policy-thing.
If dc has sensory issues which need to be met to help her to keep in a clam-alert state to learn, then she has special educational needs and they should be in her iep and echp's education sections.

In fact they have two jobs - 1) to help her learn despite her atypical response to sensory stimuli and 2) sort out a programme of education to help her improve her sensory processing, and/or improve her ability to self regulate.

The school is absolutely NOT allowed to say 'we will only meet her needs when we have a diagnosis'. They have to meet the needs, end of.

CMay be a mad idea but maybe copy out some law from the IPSEA website and write a polite letter saying, 'I have discovered that you may have accidentally missed these bits of law that apply to you, and I thought you wouldn't want accidentally to find yourself doing something unlawful ie insisting on a particular diagnosis from a particular professional.'

Exactly right ouryve.

School will not refer to ed psyh so I am trying to find out if I can do it myself or if not will just go privately I guess. She has sensory issues in all areas apart from smell but we are trying to work out if it is just spd or if theres a second condition present.

Can I just ask, for those who recieve help in school what is in place?

Thank you Senvet I will look into it.

School say different things all the time. As for the ed psych I had head say no budget and Sendco saying no need. But that was based on her learning needs not other needs.

If you want a full ehcp assessment you can ask for it. Look on the IPSEA website
The bar for ehcp assessments is obviously higher than the bar for triggering extra help from LA on what used to be school action plus.

Oh, and make a record about 'not enough money in the budget' because that is a crucial bit of evidence. The LA still cannot use 'costs too much' as a legal reason to fail to meet the SEN. The school can, but the LA can't - in law anyway.

But to defend a potential appeal, they tend to put in an EP/OT to observe, so it could be using a sledgehammer to crack a nut, but if you are only allowed a sledgehammer....

Also there is a bit of law, from memory, that says every child must be considered as an individual, so applying 'nhs does not recognise SPD' fails on that ground.

And I don't care if they call her needs are called SPD or Mrs Tiggy Winkle's Tickly Thingy. The point is: what does dc do? If the things listed in the private report are things that you can see, and when extrapolated from home to the classroom, must obviously impact on her learning, then it is SEN. And must be met.

Fingers crossed for you

Thank you so much Senvet that has been so helpful. I will look into it and see where I get. I have met with a lady (some sort of advisor) who is going to help hopefully to so I will talk to her about all this.

Does anyone know what OT's services cover in terms of ADD and ASD? Mine and a few others I have looked at, mention both and wasn't sure if it was just the sensory side they deal with as some say they can do assessments. My OT does a behaviour and attention assessment among others and wasn't sure if it was worth asking her.

Thank you all so much. I feel better knowing it is not just me and there is some support out there.

Mrsstark ... I agree with pp, help from school is supposed to be based on need not dx. If it helps 3 of my dc have SPD ... they wear coloured lens glasses tailor made to them. We go to jordanseyes.com in Ayr. It's free testing (costs £250 privately!). The results for my dc are phenomenal!

The top OT I know can analyse all the different sensory and physical thing that may be making it much harder to concentrate that the mainstream, bogstandard kids of the same age.

If you cannot sit on a chair comfortably, or hold a pen comfortably, it tends to affect concentration.

I don't think they would be allowed to diagnose ADD/ADHD

Off the top of my head, SPD-specific measures are that DS sits at the front of the class (to avoid distraction), gets regular movement breaks, is allowed to wear slightly different uniform, is reminded to eat and drink, has a chew toy, is given alternative ways of completing 'messy' projects, and I get to accompany him on all school trips/or he has 1:1.

He also has dyspraxia and some adhd traits so he has other interventions too but those are the main sensory ones.

Really that's the minimum level of adjustment a school should make.

I have asked to speak to Sendco about IEP.

For reasonable adjustments, do these sound reasonable to ask for -

1. For a small fidget toy and chew to be kept on her at all times not just for when the teacher sees fit. (teacher has stopped access to fidget toy as shes showing better concentration).

2. cushions, pencil grips and ear defenders to be used when required.

3. regular movement breaks allowed and any ot activities or guidance to be implemented.

4. In regards to trips any non local trips. For me to attend or 1to1 support.

Seperate issues

5. For her teacher, TA, Sendco and office staff to understand her condition.

6. For someone to ensure she plays safely at playtimes and is helped if needed to social with peers.

sorry meant socialise with peers.

Those sound completely reasonable. What we've done is suck it and see with various things - ear defenders didn't work for him and neither did pencil grips. But they should be willing to try things and see what works and what doesn't.

I give my DS laminated sheets about him and what his condition means to take to school. And I raise it every time I speak to any of his teachers. And that way no one can ever say they didn't know about it.

Make appointments every term to review the IEP too so that they don't just fill it out and forget about it.

Thank you OddFodd.

What type of thing did you include on the laminated sheets? They sound like a brilliant idea. I have a feeling that even though they have seen the report it needs spelling out clearly.

It's divided into areas like classroom/organisation/social interaction/concentration etc

and under each heading it has a list of things that will help him achieve to the best of his abilities in the classroom

So under classroom it says: needs to sit at front to avoid visual distraction/check his understanding/use visual and written instructions and timetables/finds a noisy and/or visually busy environment very difficult/give him a fixed marked spot with a fiddle toy and sit'n'move cushion during circle time

I've found it best to be quite directive if you know what works/what doesn't! When I was looking for the file on my computer, I came across this guide (which I think the lovely PolterGoose linked to a while back) which might be helpful if you haven't seen it: www.sensorystreet.com/uploads/making_sense_of_sensory_behaviour__1_.pdf