Think we need to go private :(

[Ihaveranoutofsteam]

I have posted this in SN recommendations, but have just noticed that is not very busy.

I am looking for advice. Our daughter (6) was seen by the CAMHS team in the last few weeks of term due to very disruptive and odd behaviour in class. I asked if ASD was likely but they are unsure, but she does seem to have lots of sensory issues. She has been referred for OT, but the services are really lacking in our area and we need to wait months...

I have been reading on the internet about private therapy companies but none of them seem to have prices on. We do not want to start something we can not afford to complete.

Does any see a Private OT for sensory therapy and if so what range of prices are we talking about. We live in West Yorkshire as I know prices will vary across the country. Does anyone have any recommendations, if you are allowed to say....

We're in London so don't know how relevant it is to Yorkshire, but I didn't want to leave your post unanswered.

We paid £65/hr for an OT but I've heard of £40/£45/hr from people outside London.

Good luck, hope it goes well!

I would do lots of reading yourself as there are plenty of DIY type things you can do/use for addressing sensory needs, e.g. wobble cushion, fidget toys, lots of physical input like trampolining and swinging, ear protectors if there are auditory sensitivities.
Try 'The out of synch child' for lots of ideas www.amazon.co.uk/The-Out-of-Sync-Child-ebook/dp/B00261OOVM/ref=sr_1_1?ie=UTF8&qid=1375520681&sr=8-1&keywords=out+of+synch+child

If there's still a problem after you've done that I would def go private, whatever therapy you get from the NHS is likely to be too little, too infrequent to have the most impact.

My son didn't have to wait to long to see ot in Surrey - a few months. He's having six one hour sessions but it has given us a list of problems and a sensory diet to help with them. I have from that used the advice to get some equipment from his dla money. So if you have wait over say six months I would stay on the waiting list but have maybe four private sessions while you wait to get a idea of issues and some exercises - but with all these things you then need to add the excersise into daily life as ot sessions alone isn't enough

Just to add if you go private, never cancel your nhs appointments as you need them to get onward referrals at the very least. Plus no one here in Surrey takes any notice of private diagnosis ( so my son school tell me )

No experience about going private but I'm also in West Yorkshire and had to wait 18 months for DS to be seen by an OT .

In west Yorkshire too, CAMHS currently taking 2 years. We saw an ot and tbh was an absolute waste of time. Luckily cahms have realised wait is too long And have outsourced some of their appointments to a private clinic, Socrates, and we go on Monday. Kirklees did not used to accept any sort of private diagnosis - no idea If they have changed this.

My little boy is waiting on ASD assessment and was referred to OT. i have to say i rang them every week looking for a cancellation. we already pay for private speech therapy and i was damned if i was paying for OT too. so i just made a nusciance of myself and after 7 weeks i got a cancellation. waiting time in my area is 16 -20 weeks for non urgent cases.

All you really need is an assessment and then they can give you activities to do with ur little one. plus as another poster said. read read and more reading.

Good Luck.

PS. what are her sensory issues?

Hi. Thank you for all of the advice. She seems to be a sensory seeker and have an aversion to loud noises and smells. Smells can make her wretch and she often walks around the school playground with her hands over her ears if children are too loud. She is also prone to outburst and severe anxiety at the slightest change. She also never gets dizzy and loves dangerous activities. Apparently her excellent imaginative play makes it less likely she has an ASD along with a few other things.

I got an answer on another site and apparently there is someone on there paid £600 for an assessment and then £70-80 per hour. They do 2 hour sessions per week and have been going for a year. We cannot afford that. I think I will buy that book and wait for NHS input.

That is extortionate. accept the NHS referral then get hold of the number and ring them weekly looking for a cancellation. this is the start of your fight and trust me you are the only person your wee woman can rely on to fight her corner so get on the phone, make a niusance of urself and get ur name known :-)

Cricky! £600 then £120 a week?! I can do all the things my sons ot does with him. All I needed was to buy some equipment

Ihaveranout £600 plus twice weekly therapy sounds a lot (although I qualify it by saying that if the OT doing it is qualified to the level being trained in the SIPT, it may be worth it).

Most private OT's would be happy to treat by supervised home programme which should be a lot less. But it does mean you would need to commit the time and energy to doing it yourself at home (& I know this is hard to do- a bit like going to weightwatchers and sticking to the diet 'cos you have to answer to someone else )

This might be useful to you to get started.

Also, you say she is a 'sensory seeker' but that she doesn't get dizzy.
Does that mean that she finds it hard to sit still? would she watch TV hanging upside down on the couch?

If so she sounds like she is under-responsive to vestibular information...try doing balance work with eyes closed e.g. bounce on a trampoline with eyes shut, swing with a blindfold on, stand on one foot with eyes closed (how long can you do it? can you do it for longer? etc), walk a figure 8 with blindfold etc