Sensory Profile?

[FlyingFig]

DS's OT has said she's going to send us out a sensory profile checklist as DS has obvious sensory issues that affect his day to day life. I'm just wondering what the outcome of this kind of assessment is and if there's any support/strategies that will come about, based on the results?

I think I'm feeling a bit apprehensive after I filled out the CAST form in November, to then be told DS's score was high (32) but then no further support afterwards! (struggling to get ASD assessment atm).

Well when we completed the sensory profile checklist and sent it back we then got a phone call with a couple of questions and then told we will hear from them.

The way it works down here is you get an invite to a parent sensory workshop which I found good as you meet other parents too and learn to understand different sensory needs.

However what shocked me was that the parents were then told to go home and try some of the strategies and look at some of the information they gave us and if in say..........6 weeks we were still having issues to ring and arrange a proper OT appointment where they will assess and go through childs profile with you and decide if school needs a visit etc etc

Personally I bypassed this and nagged like hell pre workshop because we did profile in summer and workshop wasnt until months later and ds was having major issues in school that risked exclusion (they were already sending him home)

At the assessment they will do a child profile that they see and discuss any issues with you. They can decide to then visit school and see how the environment can be changed for the child and advise on excercises etc for school to implement. They can visit you at home and give you ideas as in a sensory diet. A teacher sensory profile will be completed at school and a parent sensory profile will be completed at home :)

Best thing to do by "out of sync child" OT recommended it and its well worth reading.

Thanks coff33pot, hopefully we'll get some helpful feedback from this checklist then! She did mention some techniques that involve 'squashing' DS at bedtime and not to worry as it's not as odd as it sounds?! To be honest life is quite bizarre as it is with my lovely DS around so I'm happy to go with whatever she suggests, however bonkers it might be

She's going to visit DS in school with regards to his seating so hopefully she'll be able to speak to the teacher and SENCO about his sensory problems at the same time.

I do hope we're not fobbed off, I will take your advice and nag for help; I'm getting used to having to do that with other professionals so I'm well prepared to stand firm! (not that we should have to nag, but it seems this is the norm for parents of children with SEN, sadly).

Thanks for your advice

We did the checklist with the OT, ds scored definite differences across the board. We were just sent some info sheets of activities and that was it.

We have been given a list of things to try from OT, and only get to see an actual person if it's not helping after a year(!)

Our OT did an assessment and then provided a large report with suggestions for her school and for us at home. She also visited her new school to talk to new teachers and look at the set up of room ect and made suggestions.
We have review on monday

Fingers crossed we get some useful feedback then - it was interesting to hear the OT explain about DS's difficulty with proprioception and why it causes him to move/fidget so much, as one of his IEP targets is sitting still on the carpet at school for a specified length of time. So hopefully the OT will be able to explain that he can't help the exaggerated movements?!

Thanks all

Slightly off topic, but My DS had a real problem with sitting still too. It turns out it was a retained reflex issue (retained spinal galant reflex), so that when things (like chairs and trouser waist bands) touched his lower back he was constantly flinching.

The behaviour optometrist we are doing Vision Therapy with discovered he had several such retained reflexes. He has had an eye tracking issue and all children with this problem have retained reflexes inhibiting normal eye development. We have done a few months of exercises to inhibit the reflexes to enable the eyes to develop - they are now - and he is a different child. He now sits still and doesn't fidget nearly as much.

Also DS was very clumsy and tripped a lot, but it was down to his peripheral vision being ignored as focussing was hard work for him. He's getting less clumsy as the therapy progresses.

Your LO may not have this problem, but it might be something else to consider.

Ah that's really interesting, thanks! DS has issues with his eyesight as he's extremely longsighted (+9 but currently coping with a +6 prescription, astigmatism and a lazy eye) so it wouldn't come as a great shock if he had issues with tracking too?

How did you go about getting your DS assessed?

We had to go private (I think they do vision therapy in Essex on NHS, but that's not much good for the rest of us!), through a proper Behaviour Optometrist.
www.babo.co.uk/babo-members/. I think tracking problems are very very common in children with dyspraxia. Also it can masquerade as dyslexia, but is curable.

We go to one in Milton Keynes. Prices and experiences vary, but we are very happy with ours.

Some OTs do retained reflex therapy too....but have no experience of that.

Thanks for the link, there's a couple of places about 1.5-2 hours away but I'm willing to travel, presuming there's not too many actual appointments to attend?

Well, there could be. .....

The initial eye test could be a one off if there are no real problems. However, if you choose to do Vision Therapy then you will need to go often. We go once every 2 weeks (though she said every 3 was OK if necessary). It's a 40-50 minutes session and is quite intensive. Then we do 20 mins of exercises at home every day on top of that. We have been going since Christmas and DS is making good progress so won't have toooo many more sessions to go to. Some children take much longer to make the same progress though, so I cannot give a guide as to how long it would take...

Have you stumbled across the Tinsley House thread on here? The VT that they do there is computerised and I think a lot of what they do can be done by Skype (apart from the initial consult)....have a look on there too and maybe say hello.... Indigobell ois the expert on TH.

FF - If you're thinking of behaviour optometry, vision therapy and sensory problems - may I throw Tinsley House into the bucket of things you're thinking about :)

You only have to visit every 8 weeks, and it will probably be cheaper than VT through an optometrist.

Indigo thanks for jumping in - I just recommended you experience above :)
However, I think it depends on the actual optometrist as to whether it costs more or less.

Yes, you can't really compare costs in general. You need to compare them in specific :) + of course the logistics of getting to these places.

But I can say that VT through a BO won't work unless it goes on for a long time. So on that principle the money will add up.

I went to a BO here in London, and he said DD only needed 5 sessions. And after 5 sessions he said we'd finished. But we hadn't. The 5 sessions weren't nearly enough, and so we actually wasted all the money we spent there (about £500?)

But the sessions were £70 a week. So if we'd done enough for it to be effective it would have cost a lot more than TH.

The RRT we went to did work - and did cost way more than TH. (But it was money well spent)

Of course, London prices are always more than the rest of the country :)

MrsB - It's really really great that the BO you've found is brilliant and that your DS is making good progress.

Don't get swayed by my TH stories :) You need to stick with the good thing you've got going.

But not all BOs are great. Which is why I don't recommend them in general anymore. (Although there are some specific ones I recommend - and if you PM me the name of your great one, I'll add her to my list on my website....)

That is a lot Indigo. Ours works out at £50 a session every 2 weeks, so equivalent of £25 a week. Will PM you now.

TH looks great, I've read a bit about it on here but it's really, really far away from us Not sure if we could keep up with regular appointments with a BO either, nearest one to us seems to be Prudhoe but we're in Cumbria so it would be quite a trek if we were to go every few weeks.

Might have to consider saving up for a TH visit though - looks very encouraging and I'm sure we could manage it somehow (I'd stand on my head naked in the town centre if I thought it would help DS so will try not to be put off by distance/cost

Glasgow or Lincoln look like the closest TH clinics to you

UK Clinics

You only have to visit 2 or 3 times, then you can do the rest by skype. (Or at least that's what Robin does - don't know about the Glasgow or Lincoln clinic)

But, the good news is, you can get started on the TH program by just following the advice in The Brain Food Plan

Then, if you think it is helping, you can visit one of the clinics.

Ah I thought Hampshire was the only clinic, doh! Glasgow is doable, only just over an hour by car or train, that's definitely more of a realistic option!

Thanks - will check out your link, feel a bit less isolated knowing there's alternative help not that far away