PWS and other rare syndromes

03/02/2026

One of mine top favourite books.

It brought something invaluable and changed everything how we managed to handle Alexander’s enhanced emotions. Once we learned how to communicate his overwhelming behaviour stopped and everything started feeling manageable. I always believed that this book should be handed to every person who has just become a parent 😊

How to Talk So Kids Will Listen & Listen So Kids Will Talk by Adele Faber and Elaine Mazlish is not just a parenting classic — it’s a compassionate, practical guide for any parent raising a child with strong emotions, challenging behaviour or unique needs.

Faber and Mazlish show how to truly listen, validate feelings and communicate in ways that help children feel safe, understood and respected — even when behaviour is complex, intense, or unpredictable. Solution is always found.

Importantly, this is not a book about “perfect behaviour.” It’s a book about strategies how to work with children who struggle with regulation, impulse control, sensory overload, anxiety or frustration.

And this is why the book resonates far beyond disability. Every child has moments of meltdown, resistance and emotional overload. Every parent has moments of exhaustion, doubt and feeling unheard. The language tools in this book help all families.

What makes this book so enduring that it reminds us that when children feel listened to, they are far more able to listen in return — regardless of ability.

https://www.amazon.co.uk/Talk-Little-Kids-Will-Listen/dp/1788708466/ref=sr_1_1?crid=3387M0ESNQ66K&dib=eyJ2IjoiMSJ9.tQ7YLN2IF0-dIDrmPZnj3JGGLqDkkqaLAAYk9OEjGhL4drQgdGQQp770vLQX0XewMsE32-lU26dHhdhjGOSjfj5ymjxMw2l6xtGmuIc9kzB37OtIdWn3oNH0OzTsoPP_ajkX_QAHufZPvA47pGGHRWo1dcy00pIvY-O2HRTGfrfVCwZwhT6zuXIZX-CcWdJWp0Qut07iKfJXSvSEStuSdeKZ_yEKgcMgzWJmRD9zxh0.-z-vvqcRaqy6r7NTOp-__9cKajO654dStdmxaynJ3oU&dib_tag=se&keywords=how+to+talk+so+little+kids+will+listen&qid=1770125279&sprefix=how+to+talk%2Caps%2C124&sr=8-1

03/02/2026

Sports & Prader Willi Prader-Willi Syndrome Association UK

Being “labelled” at birth often leads to lowered expectations — quite assumption that our superstars will not achieve at the same level as their peers because of their genetics. We chose to challenge that narrative.

From an early age, we exposed Alexander to as many activities and sports as possible with the aim of stimulating both his mind and his muscles. Believing that stimulation, inclusion and opportunity matter.
Whatever he expressed an interest in, we encouraged him to try — even when it was stressful and frightening, given his low muscle tone and challenges with balance and coordination. I must admit, skateboarding, stunt scootering and skiing delivered some heart-stopping moments — especially for me.

In the end, tennis won his heart. Today, Alexander spends most of his free time practising, driven by the hope of one day competing on the National Disability Team.

Never stop dreaming big. Our children surprise us every single day, revealing just how determined, driven, and talented they can be — if only we give them the space, belief and opportunity to show it 💖

30/01/2026

Prader Willi Syndrome and Baby Sign Language

“A good time to start is when the baby is between 4 and 6 months old,” according to Jann Fujimoto, a speech-language pathologist

A few simple examples are shown below.

https://www.youtube.com/watch?v=eVnvwt-6PUk
Baby Sign Language UK. 10 Basic Starter Signs YOU Should Know!
By Sophie Pickles

Lead Academy
https://lead-academy.org/blog/baby-sign-language-uk/

30/01/2026

Sign Language & Prader–Willi Syndrome

From very early on, it was clear that Alexander wouldn’t be able to speak as quickly as other children. His low muscle tone affected not only his body, but also the tiny muscles in his mouth that are much needed to form words.

What mattered most to us was that Alexander could still tell us how he felt and what he wanted/ needed. We didn’t want him to be silent or misunderstood. Baby sign language was suggested to us by our Speech and Language Therapy team, who were incredibly supportive at the time. They explained that babies communicate long before they can speak—through gestures, expressions and movements—and as parents, we often understand them instinctively. So we thought: why not give Alexander the tool to communicate ?

After our very first session of simplified baby sign language, we realised how accessible it really was. The signs were simple, logical, and surprisingly easy to remember. It felt natural rather than technical.

Very quickly, signs for milk (drink), sleep, mummy, daddy, hungry, happy, sad and even animals like cat, dog, and bird became part of our everyday life. Signing blended seamlessly into our routines—at home, outside, everywhere.

What I didn’t expect was how lasting the impact would be. Even now, 13 years later when Alexander no longer needs sign language, we still find ourselves using some of those signs in noisy places, almost without thinking. They became part of how we communicate as a family.

Most importantly, signing helped us avoid so much frustration—for Alexander and for us. He didn’t have to struggle to be understood, and we didn’t have to guess. He had a voice long before he had words.

If you’re considering baby sign language, I truly encourage you to try it. It’s not complicated or formal like the sign language you might see on TV. It’s simply a few gentle, meaningful gestures—and they can make an extraordinary difference.

“A good time to start is when the baby is between 4 and 6 months old,” according to Jann Fujimoto, a speech-language pathologist.

A few simple examples are shown below.

https://www.youtube.com/watch?v=eVnvwt-6PUk
Baby Sign Language UK. 10 Basic Starter Signs YOU Should Know!
By Sophie Pickles

Lead Academy
https://lead-academy.org/blog/baby-sign-language-uk/

23/01/2026

It’s OK 🆗 to be different 💪🏻💗

23/01/2026

Key Frequencies and Research Findings

• 40 Hz (Gamma): Research suggests 40 Hz sound and light treatments can stimulate neural activity and improve memory recall, particularly in neurodegenerative conditions. A 2015 study showed 40 Hz treatments reduced pain in fibromyalgia patients.

• 432 Hz: Often called the "heartbeat of the Earth," studies show 432 Hz music can decrease heart rate and blood pressure more effectively than the standard 440 Hz.

• 528 Hz ("Miracle Tone"): Known as the "love frequency," studies indicate it can reduce stress in the endocrine system in as little as 5 minutes and may help protect cells from damage.

• 174 Hz: Associated with reducing physical pain, anxiety, and stress.

Solfeggio Frequencies: The 9 Main Tones

These are a set of nine electromagnetic tones used in sound therapy to promote balance, with origins tied to Gregorian chants and later popularized by Dr. Joseph Puleo.

• 174 Hz: Pain relief, stress reduction, and relaxation.
• 285 Hz: Cellular regeneration and tissue healing.
• 396 Hz: Removing fear, guilt, and negative beliefs.
• 417 Hz: Facilitating change and clearing trauma.
• 528 Hz: Transformation, "love frequency," and DNA repair.
• 639 Hz: Improving relationships, communication, and harmony.
• 741 Hz: Detoxification, problem-solving, and awakening intuition.
• 852 Hz: Activating intuition and unconditional love.
• 963 Hz: Activating the pineal gland and higher consciousness

https://pubmed.ncbi.nlm.nih.gov/37119977/
Solfeggio-frequency music exposure reverses cognitive and endocrine deficits

https://pubmed.ncbi.nlm.nih.gov/36679783/
Using Deep Learning to Recognize Therapeutic Effects of Music Based on Emotions

https://pubmed.ncbi.nlm.nih.gov/30073406/
Efficacy of binaural auditory beats in cognition, anxiety, and pain perception: a meta-analysis

https://solfeggiofrequencies.org/research/?utm_source=chatgpt.com
Solfeggio Frequencies Tools

https://www.researchgate.net/publication/333852911_Sound_Healing_using_Solfeggio_Frequencies
Sound Healing using Solfeggio Frequencies
• June 2019, Thesis for: Graduate Degree
Authors: Sonya Joseph - American College of Healthcare Sciences

23/01/2026

Healing Frequencies and us – Prader Willi Syndrome

Have you heard of sound healing, or the idea that all matter in the universe—including the human body—vibrates at specific frequencies? Sound healing uses targeted sound waves, often Solfeggio frequencies or binaural beats, to help restore the body’s natural, harmonious resonance with the intention of easing stress, pain, and imbalance.

I’ve been playing this “music” for my Superhero while massaging his feet, then letting it continue as he drifts off to sleep—allowing the vibrations to do their own gentle magic during rest, supporting deep relaxation and regeneration.

While some claims—such as specific Solfeggio frequencies repairing DNA—are mostly anecdotal and not well researched, there is scientific evidence that sound-based practices can positively affect the brain and nervous system.

Below are a few examples of music we often enjoy at bedtime, during moments of relaxation, or simply as background sound—letting it work its magic, whether that’s a placebo effect or something more. I’ll leave that for you to decide.

The DEEPEST Healing Sleep | 3.2Hz Delta Brain Waves | REM Sleep Music - Binaural Beats

https://www.youtube.com/watch?v=xsfyb1pStdw

528Hz + 432Hz | The Deepest Healing: DNA Repair, Heal Damage In The Body and Spirit

https://www.youtube.com/watch?v=3OvM4ycNVL8&t=2277s

23/01/2026

Healing Frequencies – Prader Willi Syndrome

Have you heard of sound healing, or the idea that all matter in the universe—including the human body—vibrates at specific frequencies? Sound healing uses targeted sound waves, often Solfeggio frequencies or binaural beats, to help restore the body’s natural, harmonious resonance with the intention of easing stress, pain, and imbalance.

I’ve been playing this “music” for my Superhero while massaging his feet, then letting it continue as he drifts off to sleep—allowing the vibrations to do their own gentle magic during rest, supporting deep relaxation and regeneration.

While some claims—such as specific Solfeggio frequencies repairing DNA—are mostly anecdotal and not well researched, there is scientific evidence that sound-based practices can positively affect the brain and nervous system.

Below are a few examples of music we often enjoy at bedtime, during moments of relaxation, or simply as background sound—letting it work its magic, whether that’s a placebo effect or something more. I’ll leave that for you to decide.

The DEEPEST Healing Sleep | 3.2Hz Delta Brain Waves | REM Sleep Music - Binaural Beats
https://www.youtube.com/watch?v=xsfyb1pStdw

528Hz + 432Hz | The Deepest Healing: DNA Repair, Heal Damage In The Body and Spirit
https://www.youtube.com/watch?v=3OvM4ycNVL8&t=2277s

528Hz + 432Hz | The Deepest Healing: DNA Repair, Heal Damage In The Body and Spirit 🌙 Welcome to Dreamy Flow 🌙Your sanctuary of calm, where healing melodie...

19/01/2026

REFLEXOLOGY - Prader Willi Syndrome

From the moment Alexander was diagnosed, it became my lifelong mission to overcome the limitations of PWS and offer him a life as close to “normal” as possible.

I began educating myself, and reflexology and aromatherapy became my greatest allies. Thirteen years later, the learning still continues. I started with gentle baby massages every evening, and sometimes even during the day.

I created a soft, soothing massage blend using Roman Chamomile, Frankincense, and calendula oil, which I used to massage both of his feet. I always did my homework and used only 100% pure essential oils, free from any adulteration, as impure oils can do more harm than good. (Adulteration occurs when a company mixes synthetic materials with pure essential oils while still claiming the product is “pure.”)

As he grew older, I used specific blends to support different health challenges, always focusing on the brain area in reflexology—the big toe, which corresponds to the pituitary gland. Interestingly, even now, when he receives a foot massage, he asks me to focus on his big toe, as if his body instinctively knows where his weakest link is and where extra attention is needed.

This ritual is a beautiful way to wind down—not only for them, but for you as well.

Allow yourself to relax and enjoy the aromas of these gorgeous essential oil blends.

https://www.facebook.com/watch/?v=1095657600997781
baby reflexology by LullaBaby Nottingham

an example of baby massaging oils by Neal's Yard Remedies

16/01/2026

2 months old - to held his neck up was so exhausting that after every exercise he slept for ours 🥰
…. It will get better… I promise 💪🏻💗

Prader Willi Syndrome

16/01/2026

16/01/2026

PWS - Prader Willi Syndrome
For those who are new to Prader-Willi Syndrome (PWS): PWS is a rare genetic disorder caused by a partial deletion of chromosome 15.
Yes, reading about it can feel overwhelming and daunting. But I can assure you that our beautiful children bring us countless joyful moments, deep pride, and powerful realizations of just how much they can achieve. They beat the odds every day.
They are true fighters, and they can achieve whatever we allow ourselves to believe is possible for them. I ask only one thing: DREAM BIG.

Features include:

🔸Hyperphagia –excessive and overwhelming appetite
🔸Hypotonia—low muscle tone
🔸Immature, emotional and poor social development resulting in tantrums, stubborn behaviour.
🔸Hypogonadism—immature sexual development
🔸Learning disabilities
🔸Speech and language difficulties
🔸Obsessive and/or compulsive behaviour
🔸Perseveration—repeating the same question continually
🔸Difficulty in adapting to change
🔸Emotional outbursts and dysregulation
🔸Poor balance and co-ordination
🔸Lack of concentration