Safe and sound protocol

[viio]

Has anyone done it? How did you find it?
it seems to be very common in other countries with a high success rate, but not so common here. There have been studies which concluded positive changes as a result of vagus nerve stimulation so what I am looking for is your experiences. Thanks so much 🙏

We have done it with DS. We did notice an improvement in his focus. He was a lot more 'present' with us after we completed the course, less in his own world and less distracted by external stimuli. And teachers noticed an improvement at school.

However we have noticed some of the distraction has started to creep back in and we are going to try it for a second time to try and reinforce. (We paid for an 'at-home' package where we made a 1-off payment and have permanent access to the recordings and administer them ourselves.)

The recordings themselves don't seem to difficult to listen to. Children can do other 'quiet' activities whilst listening to them, so DS looked through magazines whilst he listened.

Thank you so much for your reply. We are doing with it help of uk provider, but I am keen to do the whole family. I did a lot of research into it, proper research studies on vagus nerve manipulation. From my little understanding it takes a while to re program so we need to repeat every 3 months first couple of times then we will do it less and less until the gains stay.

we are dealing mainly with anxiety and fear (no idea how ds got it) but I did recently learn that the word fear is so wide… so anything could have or would have trigger it.

did you get the system from the us and was it difficult to learn how to administer? Thank you

We got the system directly from our OT in the U.K. administering it was fairly straightforward. But it's interesting what you say about repeating every 3 months as our gut feeling was that we needed to repeat it.

Ho again @Titsflyingsouth i didn’t realise that OT s actually do supply SSP. I would be interested more if you can point me in the direction as to where I could get it.

eventually a few more people in my family could do with it.

yes it is standard to repeat it for the gains to stay then eventually you do not need to repeat it. My friend did it from provider direct (perhaps in America !not UK) and she repeated it but she said that it was tricky doing it alone, she had gains too. I have also met someone on holiday this summer who weirdly mentioned that they too did it and had gains so seems very positive.

glad you are sharing your story thanks
it’s always nice to hear other peoples experience.

Our OT (Jump Start Centre, Essex) gave us online access to the programme. The recordings were MP3 files that we played to DS through headphones at home. You can either do 5x 1 hour sessions or break each session in half and do 10x 30 min sessions. We did the latter as DS gets easily distracted.

Hope that helps. Good luck with it.

Hello - We have done SSP! We used it 3 or 4 years ago and have repeated a couple of times, via Move2Connect, who was one of the first to ever train in SSP and now trains other providers. She either works remotely or in clinic, and is starting to work on therapeutic farms, which is really cool. It is really important for parents to go through the programme themselves either first or with our children - we have realised this as time has gone on. There's a list of questions to ask a provider on this blog post. OTs are not the best people to work with SSP as OT isn't a bottom up approach - sensory integration tends to be at too high a starting point and so requires loads more work than if you work to make a child feel safe and with primitive reflexes first.
move2connect.com/experiences-with-the-safe-and-sound-protocol-2/

@Titsflyingsouth - did you download an app for SSP or have mp3s sent? Confused as the only way to get it legitimately now is via an app...

@DCDMumma our OT sent us a link to an app called Unyte-iLs and we use that

Yes - that's what I have too, and we can either pay a flat rate for all of us per round of SSP or we could subscribe on a monthly basis if we wanted, or go to the farm setting in Sussex and do it in person (which is cheaper than home). I was also going to say that we have noticed MUCH better results since we went through the programme ourselves. I am really surprised that OTs are using this now. Good news, but they tend to be far more top down that bottom up in our 9 year experience of working with our kid (mild CP and DCD).

Thanks so much. We have now done one round. I did it first and then did it with my child. I now intend to do my other child. Hard to say what the results might be yet as too early we literally just finished it. We did is soooo slowly which was great and just the right approach. Will update in a few weeks re results. I think I can already see improvement but we shall see…

Hi OP. How did you get on with this? I am just at early stages of researching

Hi we are just starting on round two. I did see results they are slow but nonetheless there. Takes patience. The key is the right practitioner to guide you. We will see what the second round brings.

That’s good to hear. Sounds like interesting treatment method

Yes it is. I followed it and did a research on it for a couple of years before I decided to try. I can’t say too much for my child and how it has affected ds but for me it has been incredible I really did feel such differences.

Oh for yourself too? I am intrigued by the claims to help reduce anxiety. Do you mind me asking if you used it for this? Or if you left anxiety dropping?

Our therapist (which all should really do) insists that a main caregiver who will perform it on the child does it himself/herself first as it’s important 1. To be in a good place and calm when you are supporting your child whilst they are doing ssp 2. That you have the experience so that you are able to know what it feels like, what to look out for etc.

My anxiety (which I thought I had little) but turned out I had it quite a bit reduced so much. It is hard to describe but it felt like someone has taken a huge burden off me. I am able to breathe now much better, feel lighter etc. quite tricky to put into words.

The aim is to help your body work better and your child’s but that can’t happen if your vagus nerve is all up and misbehaving due to various factors affecting it.

This therapy is very common and standard in america and other countries and you get it when you go to OT. We are still learning and trying to catch up with it all. Quite a few providers here in the uk but you have to be careful who you go with. If someone offers you a “good” deal be careful. There is FB group and you can ask for recommendations. Also you can read stories where people who don’t have that support mess up and over regulate…

Can I ask how much roughly you paid please? We did a similar listening program a few years ago without much effect but this one sounds better…

We did SSP in a similar way! Our provider insists that parents go through SSP with her first too. I think it’s made a huge difference as we didn’t do it that way first time around with a different provider (cut price by the way and I only worked with my kid). She does exercises to help balance things out if we have any repercussions. I have a feeling she is now more involved in training other providers though? And also runs SEND support sessions for parents which are just brilliant.

anyway it DID help anxiety no end. It was like I didn’t really mind stuff anymore that I would have found annoying or scary before.
i really recommend it!

@Seasidetrains I am not sure what the price is as it may be depending on how much support you need etc. we paid about 2k for me to go through it, my child and lots of support. The therapist first had about 3/4 sessions with me over zoom and she talked and discussed everything and prepared me for it. Every meeting was about 2h approx. Then after that we had 1h approx meetings (zoom again) for three months… she monitored me and my child and discussed issues and gave advice. She is incredibly knowledgable and really gave me the confidence to deal with anything that come my way.

my child is great and loves the songs and I am really looking forward to seeing more effect this time round. The changes are lovely to see. I can’t wait to get more of it. I did get disregulated for a day or two (read had pms sort of mood 😬) but after it all calmed down and I felt amazing. Yes I agree with @Flamande recommend it.

Crumbs - that’s so expensive! Our first round - not so good - was £350 in 2020. Then we did it about six months ago for the whole family and it was £600 and now we are paying extra for Balance. Basically our practitioner spent about 5 hours with me and then supported remotely by email when we needed it - or we could have paid extra if we’d needed it - but I didn’t feel we did as it was our second time around. I felt this was more than enough because of the education sessions we had with her. I did loads more research this time, but I didn’t come across anyone charging that much - was that in the U.K.? Or is it just because you felt you needed more support? We haven’t felt the need to repeat it yet this time either, as going slower than we did last time seems to have worked wonders. Also funny you say about pms, as I haven’t had actual pms since my first time through SSP!! I really love it, and love the exercises our practitioner gave us to keep the effects “live” after SSP - they seem really effective, but we are thinking of using Balance now.

@Flamande can I pm you please for more info thanks

@viio yes! Would be cool to compare notes!

Wow 2k is a lot!! Especially if it needs to be repeated 😬although it sounds amazing to have support as you go through the program. @Flamande can I ask where you did it? And what is Balance?