Brainwaves charity- anyone's child had therapy there?

[sleepysox]

I'm investigating the Brainwaves Charity

www.brainwave.org.uk/index.aspx

Does anyone know anyone whose child has had therapy there?

My son has ACC and ventriculomegally (rare brain conditions) and they're on the list of conditions Brainwaves can help.

I contacted Cerebra about them, and they said that Brainwaves wasn't one of the therapies they endorsed.

Has anyone had any experience of Brainwaves?The youtube videos are very inspriring and i'm keen to explore any possibilities for DS.

Hope someone can help.

If you can get charity funding i would say go for it but personally i wouldnt pay myself for Brainwave as its providing what the NHS should be, although i understand a lot of people dont get decent therapy provision and therefore seek out other routes.
I've heard lots of people saying they have done the Brainwave and its been a very positive experience but IMO of course they will be positive about your child....you're paying them....and they want to keep you coming back as its more money!

my friend looked into it but didnt want to start it as she knew she would feel obliged to keep going and as Riven says its really quite expensive if you are paying for it yourself

Actually i am also a bit cynical of other therapies like Advance etc that charge you a fortune and you spend all your day doing excercises which may or may not make a difference when you could be out enjoying life instead of beating yourself up whether you're doing enough or not!

just my opinion of course, feel free to ignore!

Ahh Ruth from Dragonmobility done my Caudwell form for ds's chair, well she spent two hours on the phone one morning telling me what to write!

Thanks for the replies.

Sorry it made no difference Riven.
I haven't heard of Cauldwell, I'll go and google them in a bit.

Thanks for the advice Glittery.

We're supposed to get physio every 3 weeks, but it ends up being every 3 months.
I pay for a sensory class once a week. That's all the input DS gets. I do physio with him 3- 4 times per day and have bought a few toys that are like sensory toys, but not specifically for special needs. I do the usual- baby massage, tickling games, putting his hands and feet in jelly etc just to stimulate his brain, but would love other ideas on how to get those pesky neurons in his brain working.
Oh and he's due to get 5 sessions of hydro in a few weeks time.

Do you reckon Brainwaves would do more than he's getting now?

Can either of you tell me any extra stuff that Brainwaves does so that we can replicate it at home?

We can probably get some of the money from a local charity, but I'm wondering whether it would be better not to ask them in case we use up their good will and then DS needs a super duper wheelchair or whatever down the line, and they won't allow us to claim again.

I want DS to be the best he can be, but don't want to pay for something that I could do myself, but I don't want him to miss out on something that could possibly have a big impact.

Dilemmas, dilemmas.

i see your point sleepy, if you're not getting enough services provided then of course you're going to look into other options.

i also agree about maybe saving the charities for bigger stuff as it seems to be getting harder to get money from charities as theres so much demand right now, do you have any local rotary club/roundtable/lions type places, sometimes they can fund small stuff?

hopefully Riven or someone can tell you exactly whats involved but if not, it might be best to go for the initial assessment and see what they say, that way you wont wonder what if if you dont

I think its about £600 or something, that way you might get an idea what sort of stuff they would recommend and you might get a feel for whether you might want to go back?

what about BIBIC?
Would they be any use for you?

Glittery,you're right about asking the local Rotary. I did call them and they said I should send them a letter, explaining what we needed the money for. So I think they might help out.

GOing for the initial assessment sounds like a good idea.

Godot- what's BIBIC?
Sorry, I'm new to all this malarky!

Ds has Down's syndrome and is 2.5, he's been going to Brainwave for nearly a year now. For us it was a lifeline..........we'd had a NHS developmental assessment when ds was 16 months old and went in thinking we'd get some pyhsio at least due to ds obvious pyhsical delays......but came away with nothing, not even an follow up appointment! The pyhsio did list a few activites, but tbh I left feeling very overwhelmed and really didn't know where to start or how to begin to help ds reach his developmental goals.

We still have no physio or OT but thankfully have weekly portage now......and they have been great with the cognitive side of things.....but there still would of been a HUGE gap helping ds with his pyhsical skills.The Brainwave programme gives me the focus and structure I was looking for and ds has made consistent progress over the last year. Doing the daily repeated exercises and activites has really given ds the strength,abililty and confidence to achieve his goals.......he's still not walking yet....but is now taking a few steps!!

We do the programme 5 days a week and it takes 20-30 minutes. It's a mix of physio and OT based activites with some speech and language too. Each activity only lasts 1-2 minutes each and you are provided with any equipement you need ( pyhsio ball etc) I always feel very supported and have found it pretty easy to slot into my day. They are very understanding that we have a busy life and an older daughter, so its no big deal if we don't get to do the programme as often as I would like during the school holidays ( although dd likes to 'help' now and again )

The initial asessment was around £400-450 and the re-assessments are £250 which are roughly every 4-6 months with a home visit in between. The last three re-assessments we have been very fortunate and not had to pay for as we had some charity funding through Brainwave.

sleepysox.....after we filled in the online form we were contacted at home by one of Brainwave's therapists about what to expect, how the programmes worked etc. Maybe then you can get more of an idea if it's something that could work for you and ds before commiting to the programme financially.

www.bibic.org.uk/

Not been but loads of people on here have.

I too have looked into brainwaves techniques and to be honest they dont look any different from what a good physio/ot/portage team will do.
We get our 'homework' from said professionals
and usually spend several hours a day, (child permitting!!) doing it as well as mixing in other stuff we have seen on the internet and in books. (we do have some time off though or would go bonkers!)
Our regime is similar to a Brainwaves programme, so for us would not be worthwhile.
Having said that we get masses of support in all areas, and LO clearly shows the benefits.
If you feel you are not getting adequate services and feel time is of the essence (early intervention is vital), and your finances will take it, I would probably go for it. Look for funding and also fight for better services in your area.

Sleepy
Without knowing the extent of your LOs disabilities, it would be difficult to advise on exercises etc that would help. DGS has mild (ish) CP. (Quad spastic (but getting looser all the time!!)) We say he has WBS (wobbly boy syndrome) - v. uncordinated!
We concentrate on sitting, hand eye coordination, balance, standing, tummy time, crawling, walking. In fact he needs work in all areas, which is why it is so complicated to do without guidence. We do stuff such a sitting on a gym ball and gently moving so he can balance himself. 'Patterning' some movements so that the neural receptors in his brain can 'connect' and work independently. I could go on and on, but its mainly our physio who points the way to go.
Can you discuss it with someone at brainwaves? It didn't sound freaky to me. Another one I looked into included hours and hours a day of intensive therapy and hyperbaric oxygen, which sounded too extreme for a baby. What a difficult decision

i lent my friend, who was going to do Brainwave but didnt, this book
teaching motor skills to children its got lots of exercises and stuff to do, i bought a load of these type of books when ds was small but liked this one the best as there were lots of pictures and illustrations of what you were meant to do

GLITTERY
That book is the best in the world! I reccommend it to everyone, having looked at brainwaves, many of the exercises are the same as in the book. It so impressed our physio she bought one for the department.

its very good isnt it!
And its only £9.33 with free delivery right now so that'll save everyone a few grand!!

what was the other one you looked at beammeup was it Advance (scotson technique)?

I think that was the one GLITTERY it was very scary, hours of intensive repetative physio, ?doing things to improve chest expansion?. The results looked good but at what price. Luckily our LO has good lungs - don't we know it - and has thrived with lots of physio (based on Bobath) hydrotherapy and some incredibly good local services, we have been very very lucky.

yeah i looked into Advance too, if i remember right it was 2 hours a day 6 days a week and the use of an extraordinary amount of towels too!?

That book sounds good. I'll have to add that to my Amazon list.

Thanks for all your feedback.

Having thought about Brainwaves for the past few days and having found out that it's not just the inital £800 but that you're tied in to spending about £250 every 6 months, I think I'd rather spend the money on a few private therapy sessions if I can find a suitable therapist close to home. That way I can find someone who we can see regularly who DS gets to know and it might work out cheaper and better value for money in the long run. I'm nervous about getting tied into something that costs alot over a long period of time. I know DS desperately needs more professional input, but I want to make sure I get it right.

I'll also keep pestering the physio dept at the hospital so we get the amount of sessions we're supposed to have.

I will have a chat with a Brainwaves therapist though, to make sure I'm making the right decision!

Thanks for all your help everyone. I feel so lucky to have found this board.

JUst looked up BIBIC- thanks for the tip godot. It looks really good, so I've filled in an online form, so hopefully they'll get back to me.

The problem with both BIBIC and Brainwave is their lack of qualifications.

If you look on the BIBIC website the highest qualification relevant to treating children with developmental disabilities is 'A' level standard. www.bibic.org.uk/bibicTherapyTeam

If you look at the Brainwave information the qualifications of the head of therapy is a degree in Business Studies and Economics, while the centre manager has a degree in human movement, - which is sports science! (Yes they have physios and OT's, but surely you can get that on the NHS). www.brainwave.org.uk/newsletter/14875%20Brainwave%20newsletter.pdf

Advance is no better. - their founder claims to be educated to Ph.D level, but does she actually have a doctorate. UCL, where she trained, say not.

Before anyone decides about therapy, they should check out the qualifications of the people providing it.

The only people I found who were qualified were the Delacato Clinic, who specialise in autism www.theautismcentre.co.uk

Snowdrop, www.snowdrop.cc

and the BIRD Centre. www.b-i-r-d.org.uk

Oh and there's always the Bobath centre, but then again I think that's just a type of physio.

GOOD ON YOU TRACEY!!!
Very impressed with your research skills!
We also looked at and contacted Snowdrop, and were impressed with the qualifications and dedication of Andrew Brereton to his therapy and were hovering regarding therapy. In the end though, because it is at the other end of the country, and lots of the therapies were linked around sensory issues we decided not to. I do think it would have been helpful with the CP, but felt that a more physical approach was right. His son had severe CP and autism so his approach would tackle both issues.

I don't know too much about him, only what is on the website. I was investigating IAHP in the US too, but wasn't impressed with that at all. Far too intensive and intrusive.