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Do any mn'ers know anything about 'Brainwave' in Essex or Somerset?(9 Posts)
I'm really not sure whether we need to go or not, so if I tell you why I'm thinking about it, someone may be able to tell me.
DD2 is 16mo, has GDD and sensory processing issues. She is currently ungoing tests and soon an MRI to see if anything else is lurking and we are awaiting results still.
She currently receives weekly Physio, OT, Portage, SALT and we attend a private therapy group too which is OT, Physio and cranial osteopathy and this is fortnightly. Also, each day I do approx 3 hours of therapy (combined) and sessions of 'floortime'.
So my question is, she already does a lot of therapy do I need to squeeze more in, would I be over doing it with her if we did Brainwave as well? Also, would it be any better than all the help we already get on the NHS?
Any help would be greatly appreciated as obviously this does involve money we don't have. If it is the best thing for her, we would do it without hesitation, but I just want to know if we really need to.
we went to the Somerset one and in fact, have our second visit today - they are coming here.
(I am at you getting weekly physio/portage/OT and SALT. dd has severe cerebral palsy and got portage once a month, 12 months only, SALT never, OT once every 6 weeks and physio once every 4 weeks) Which is why we went to Brainwave. I'd say you can do without given the level of support you alreay have (and I am very jealous). Brainwave asses the child then give youa 30 min programme to follow daily but it wont be anything different to what you are already doing I imagine. DD is 4 with no movement (despite bRainwave programme) and her programme involves stretching, rolling her, holding her in sitting position to try and get her head up, that sort of thing. Massaging her hands as she has no hand function and still doesn't
You are already doing and getting way more than 99% of disabled children. Brainwave wont really offer you anymore.
Where do you live/ I need to move there
Oh dear, sorry nmc. I know I am very very lucky to have all this support. We live in Surrey and must admit I am blown away by all the help DD2 is having.
Thank you for the advice on Brainwave though, I did think we might not need it but wanted to be sure and you have confirmed that.
I'm glad Brainwave is of use for you though xxx
asked the Brainwave lady about you and she said you are probably doing all you can right now.
nmc, thank you very much for asking for me, and it's very good to know that we don't need to go that route and it confirmed what you said. You have made my mind up. Thank you again xxxx
Brainwave comes really highly recommended and our son starts with them at the beginning of December. I think their programmes and ethos sound excellent. I'm really looking forward to it.
We're doing it though because we've had no practical help so far and aren't due to get any until next Easter. Even then we've been told our ds will only get help from each therapist once a month or once every other month. (We've been told he's got severe CP.)
(Am also shocked that you're getting so much help - we're in Surrey too, Kingston - since our son is on waiting lists for everything with no help starting until next Easter - he's 2.) Supposedly they're understaffed and can't retain those staff they do get.
So basically the only "help" we're getting is "play therapy" (HV giving me half an hour "break" a week and portage once a week). Grrrr!
Brainwave is great for those getting a crap service from the NHS. We applied to the Caudwell Trust and they are funding it for dd. It costs about 3 grand.
DD has severe CP. She cannot sit, roll, use her arms or hands or even hold her head up. Mind you, after nearly a year of following the Brainwave programme she still can't do any of those things!
Yomell that's awful. We're not that far from Kingston so can't believe the differences. It's disgusting. We're under the Epsom/St Helier NHS trust. This weekly therapy is in a group setting, and is either 1:1 or 1:2, but Portage is each week to the house. Half an hour of play therapy is ridiculous. I don't blame you for doing Brainwave.
Thanks nmc, I think you've saved me a fortune (that we can't afford). I'm sorry you are both having to battle for the therapy you rightly deserve, I'm feeling very guilty. xxxxxxx
Helly - get on the list for a wheelchair now! It can take a while. I'm guessing if your lad has severe CP he can't sit so even SN pushchairs might not be supportive enough. We insisted on a wheelchair at 2 to keep dd's hips and spine positioned correctly to out off hip surgery. Most kids with severe quad CP end up with hip surgery but the longer you put it off the better.
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