Down Syndrome

How many of us find that our children with that extra 21st Chromosome have problems with speech, attention, focus, auditory processing and co-operation? Or even eye contact and social engagement? Or digestive problems like constipation? Bladder control? Or hearing problems like Glue Ear?  

Improved sleep patterns, more appropriate behaviours, increased social engagement, improved attention & focus & speech gains

I was certainly struggling with my youngest son, Luke, who is now 6, and happens to have Down Syndrome. Challenging behaviour and lack of co-operation were our biggest challenges, but we could also tick most of the problems on the list above too. 

I had trained in the Safe & Sound Protocol to test it out on myself first.  I was keen to use it with Luke, and was extremely pleased to see gains in social engagement, more appropriate behaviours, improved co-operation along with improved sleep and some speech gains after his first completion of the protocol. The SSP has probably had the biggest impact of everything I have tried with Luke to date and as a result made life easier for him (and me!)…..and the best bit was that it didn’t require much time and effort!

After we repeated the protocol couple of months later, we saw another step change in social engagement and behaviour and some improvement in auditory processing. School reported that his attention and focus improved significantly from 1-2 minutes to around 10 minutes. In fact, they were shocked at the significant improvement in his attitude towards his tasks and his general behaviour in class.

Glue Ear

Luke has had Glue Ear since he was 6 months old, resulting in moderate bilateral hearing loss which required bilateral hearing aids. His hearing test (in winter by the way) soon after completing the second round of SSP showed that his Glue Ear had cleared, all but a possibly a tiny amount remaining in one ear.  It was very exciting to hear the news from the Audiologist - I was ecstatic to say the least as hearing was top of my agenda for him because of the impact on his speech development. 

SSP Balance: further social engagement gains and letting me into his world 

SSP Balance is one of the new SSP pathways and is intended for longer-term use, and for the last two months Luke has been listening to 10 minutes most nights. In this time, his social engagement has stepped on again: patting the floor for me to sit with him and play, which I have never seen before, and his co-operation is vastly improved….no longer when I ask him to do something do I hear “No!”, but now I hear “Ok!” on most occasions. Such a little thing can make life so much easier.

Prior to SSP Balance, Luke’s sleep had deteriorated again where he was waking in the middle of the night. SSP Balance appears to have resolved the night-time waking and he also sleeps longer in the morning - up to one hour longer and sometimes more. Again…..making life easier and what parent doesn’t want to get more sleep if they can, right?!

The biggest change for me is that Luke’s attitude towards me has completely shifted, he comes to me for cuddles and snuggles into me on the sofa to watch his favourite programmes and runs up to me in the kitchen and cuddles my legs. Previously, he would be quite rejectful towards me (and only me), I lost count of the number of times I was told to “Go away!” or pushed away when hoping for a cuddle. He would have been busy in his own little world playing with toys whilst watching the TV – it might sound like a tiny difference to some, but for me it is massive, and I am truly savouring those cuddles! 

We did have a short break from SSP Balance for a few days and we noticed some of the old behaviour/sleep patterns creeping back in.….needless to say that break ended quickly and he was back on Balance for 10 mins per day quickly!

Visual, auditory and tactile hypersensitivity reduced and digestive problems eased 

Recently, I have worked with another young boy with Down Syndrome, let’s call him William. William is 5 and has done one round of SSP Core, however the results from SSP Core alone are impressive from analysis of pre and post questionnaires. Williams’s Visual Hypersensitivity has reduced the most, along with his Digestive Problems, and Auditory Threat Hypersensitivity with smaller changes in Tactile Hypersensitivity and Hyposensitivity to Voices. So basically, William perceives the world to be a much safer place after completing the SSP Core, whilst his digestion has also improved through reduced Acid Reflux and Intestinal Cramping. William doesn’t suffer with constipation, but this can also be improved with the SSP along with bladder control – issues common in the Down Syndrome population.

What is the Safe & Sound Protocol?

SSP Core consists of 5 hours of digitally altered vocal music, which can be listened to for as little as 1 minute per day, up to 30 mins per day using over the ear headphones. SSP Balance is the same 5 hours of vocal music with lighter filtration, so it is more gentle and therefore can be used longer-term. Classical Connect is the third pathway - it is lightly filtered classical music which can be used as a gentle introduction before SSP Core for those with sensitive systems. Learn more about SSP here Safe & Sound Protocol Provider - Brain & Body Boost | brain & body boost

How does the Safe & Sound Protocol work? The technical stuff!

The SSP trains the muscles of the middle ear to work as they should, which helps us feel more safe by letting through fewer low frequency sounds, which humans see as threat, and at the same time lets through more of the middle frequency sounds where the human voice lies. When this happens we automatically feel more safe because we can focus on the human voice and we do not feel threatened by the low frequency sounds. This can lead to improved social engagement, reduced social anxiety, improved auditory processing, better attention and focus, reduced auditory sensitivities and improved emotional regulation. Not only that, if we are focusing on the human voice better, our speech can also develop more easily. Low muscle tone of people with Down Syndrome could also be affecting the middle ear muscles. The SSP gives those middle ear muscles a good workout to strengthen them and therefore could also have an impact on hearing. 

The SSP also stimulates the Vagus Nerve which is part of our Autonomic Nervous System (ANS), and wanders throughout our bodies from the brain stem to part of the colon.  Along its travels, it affects eye movement, facial expressions, tone of voice, heart rate and heart rate variability, breathing, and the function of organs including the intestines. Our Vagal Tone can affect they way we perceive sounds, the way we interpret touch from another person or from fabrics, our eating likes and dislikes in terms of taste and texture, and visual sensitivity and ingestion / digestion.

Glue Ear & hearing – more technical stuff!

How could the SSP clear the common problem of Glue Ear for younger children with Down Syndrome? 

Commonly in Down Syndrome the Eustachian tubes are narrower and more horizontal affecting drainage of fluid, whilst also low muscle tone common in someone with Down Syndrome affects the opening and closing of the Eustachian tube. Both of these problems can lead to Glue Ear.

Glue Ear or Otitis Media with Effusion (OME) is the collection of fluid within the air-filled middle ear cavity without signs of acute inflammation. There may be some inflammation of the middle ear associated with the OME – it just isn’t acute. This inflammation would make using the muscles of the middle ear very painful, and they would not work as they should because it would be too painful to do so.  Because of this, the middle ear muscles could fall into learned disuse which would affect sensitivity to sound (over and under), hearing, and auditory processing. 

Indicators of this happening would be if your child is hypersensitive to sound but does not do well in extracting the human voice in a busy environment. This means a child can’t hear human voices in complex environment because lower frequency sounds are dominating that environment for them. The use of hearing aids may be amplifying ALL the sound in the environment including the threating lower frequency sounds / noise.  So hearing aids may not actually be helping in the way that we intend them to.  Your Audiologist will be able to explain how your child’s hearing aids work if you have any concerns.

One of the two middle ear muscles (Tensor Tympani) is also associated with the function of the Eustachian tubes. There are three other muscles associated with the function of the Eustachian tubes, and two of those are stimulated by the Vagus Nerve.  

So we know the SSP stimulates both the middle ear muscles and the Vagus Nerve. In turn, it can then have an impact on the function of the Eustachian tubes – improving drainage and so clearing Glue Ear. Whilst also having training the middle ear muscles which can improve hearing and auditory processing through the improved ability to focus on the human voice.

Making life easier

Working with the Safe & Sound Protocol for someone with Down Syndrome can make changes in many different areas: from auditory, tactile and visual overstimulation; auditory processing, speech, attention and focus; to social engagement and emotional regulation, digestion, bladder control and Glue Ear - making life easier for someone with that extra 21stchromosome, and their families. It has made a massive impact on our lives and signs are good that it can help many others to make life easier with minimal effort – always a bonus, right?!

Learn More

The Safe & Sound Protocol can be delivered remotely under the right circumstances, but always make sure you are working with a fully trained provider that fits well with your family. 

Learn more about the Safe & Sound Protocol

Safe & Sound Protocol Provider - Brain & Body Boost | brain & body boost 

Safe and Sound Protocol - Dr. Stephen Porges (integratedlistening.com)

Sources

Otitis media with effusion | Health topics A to Z | CKS | NICE

Ear, Nose & Throat Issues & Down Syndrome - NDSS