Possible sensory processing issue advice, please

[thebeansmum]

Have had moderate concerns re TDS1 and his behaviour in school for a few years, mostly concerning keeping still/fidgety, can be a bit cheeky towards staff and a bit 'in your face' with the other kids, not aggression, just a bit, well, in their space, I suppose - although this has really improved.

In a nutshell we have seen a dev paed twice - once in R and once in May (then Y3) We have also seen, at school's suggestion, an OT. The OT was by far the most helpful and informative, the report suggested 'some slight sensory processing issues' mainly around sensory seeking behaviour and school must allow him to move around discreetly from time to time (run errand, pass out stuff in class, toilet break etc) Paed simply said 'we may never get a definitive answer to what's causing him to act up, come and see us in 12 months'

We have never seen an EP - school have never mentioned it to us. Some years are way worse than others - R was awful, Y1 maybe spoken to five times, Y2, awful, three times or so a week, Y3 we weren't spoken to 'til March - not once. Just into Y4 - nothing so far. Should we be pushing to see the EP? Should we be doing anything else? A bit lost really, can't think of anything else we can do.

[IndigoBell]

Did you see a private OT or a NHS one?

A lot of private OTs do sensory integration training or retained reflexes therapy, which should help what you describe.

NHS OTs don't tend to recommend stuff like that though......

[thebeansmum]

Thanks, Indigo, for speedy response. We saw NHS OT. They suggested certain exercizes - wheelbarrow walking, press ups, leaning hard into wall etc along with classroom advice, nothing else.

[IndigoBell]

Yes, you won't be able to get the right help on the NHS.

Where in the country are you? I might be able to recommend somone....

Do you have money to pay for private stuff?

If not, I can recommend some books......

[thebeansmum]

Cheshire, money situation - could do £2/300, but probably one/two-off, certainly couldn't commit to ongoing hundreds and hundreds.

Very frustrating to think of what is available on NHS, meanwhile kids like mine and I'm sure hundreds of thousands, just have to suck it up.

We've read (over and over!) Out of Sync Child and Parenting A Child with SPD - any other suggestions would be great.

[IndigoBell]

If you're in Cheshire, I think you're close to the very best place of them all!
INPP (I don't know how much they charge)


Disconnected Kids is a therapy program you can do at home. I haven't done it, so don't know if it works or not. But if I couldn't afford INPP, this is what I would do.

Well balanced child is the other famous book. I haven't read it, and so aren't sure if it has practical suggestions or just theory....

[thebeansmum]

Wow, INPP looks impressive at first glance! Will look into the cost. Thanks for links to the other books.

[IndigoBell]

Becarooo goes to INPP, maybe ask her for her opinion.......

I go to a similar place in London, and am very, very pleased with the results.

[Jakadaal]

Hi my DD has a sensory processing disorder -Developmental Co-ordination Disorder. She was referred to a non-NHS provider via CAMHS as they have a contract for the county with the local PCT. The treatment is excellent - 10 weeks for actual therapy alongside a home programme. It may be worth contacting your commissioning manager at your local PCT to see what non-NHS contracts they hold. Also I have found the book Developmental Dyspraxia by Madeleine Portwood really helpful

[anonandlikeit]

look at NHS, some areas do provide specialist OT's doing sensory therapy.
DS2 has been having SIT for a while on the NHS & we have seen a marked improvement.

Have a look at sensorydirect they have some weighted snakes & lap things that may help with the fidgetyness at school.

He should have a full sensory assessment but generally if he is sensory seeking any weight or pressure applied to him should have a settling effect in the short term but the full SIT programme can help improve the need for this sensory input in the long term.

Good luck.

[Grey24]

IndigoBell - thank you so much for your links - I am also looking for help, and didn't know about IIPP - and they are not far from us. It can be so hard to find the right info on Google when you don't really know what you're looking for. Much appreciated info (sorry, I know it's not my thread; hope it's OK to post this).

[IndigoBell]

Grey - I'm so pleased if I can help.

I have improved my 2 so much.

DS's Aspergers is 95% cured. And we haven't finished all his therapies yet. I fully expect him to be 100% cured within a year.

DD's severe dyslexia is about 40% cured - and I've every reason to believe if we stick with the therapies we are doing she'll be fully cured in 2 years.

But it makes me so upset and angry that so many other kids are suffering due to their parents not knowing what to do, due to lack of information, and due to the NHS being so wet.

[thebeansmum]

Just to thank you all so much for advice. The problem with asking for further NHS help so far I have found is that people feel ('people' being IPSEA, the OT and Paediatrician) that DS is 'not a priority for EP'as he is doing well academically. Ok, I understand that there are kids more in need of their help but my DS is 9 years old now, and as I said, this has been a problem since, well, nursery school, if I'm honest.

School niggle away at me about 'bad day today, messing around with his friend' type comments, I understand how frustrating it is for teachers and other kids (I guess) but it's also a ball-ache for me - I don't really know what they expect me to do, we try sooo hard at home, and being a 'gloves off' type of person, I ask gymnastics, rugby and takewondo teachers for honest feedback re behaviour and have done for years, they must think I'm mad, and there just isn't an issue. It's just the school setting.

I can't commit to hundreds and hundreds of ongoing help privately, so God only knows when this will end.