Music Therapy and Rett Syndrome Awareness

The month of October is Rett Syndrome Awareness Month, and we are recognizing how this unknown neurological disorder affects approximately one in 10,000-15,000 female births. Did your child recently receive a Rett Syndrome diagnosis? What exactly is Rett Syndrome? According to the International Rett Syndrome Foundation, Rett Syndrome is a unique neurodevelopmental disorder which begins to show in infancy or early childhood. It is seen almost exclusively in females, although it can occur rarely in boys.

As a parent or caregiver of a child suffering from Rett syndrome, you might be witnessing severe impairments which is affecting nearly every aspect of your precious child’s life: from their ability to speak, walk, eat, and even breathe easily. Maybe you have noticed constant repetitive hand movements. Rett syndrome is usually recognized in children between ages 6 to 18 months as they begin to miss developmental milestones or lose abilities they had gained. Development appears normal until 6-18 months of age and then a loss of communication and motor abilities begins.

Symptoms Include:

  • Loss of speech
  • Loss of purposeful use of hands
  • Involuntary hand movements such as handwashing
  • Loss of mobility or gait disturbances
  • Loss of muscle tone
  • Seizures or Rett “episodes”
  • Scoliosis
  • Breathing issues
  • Sleep disturbances
  • Slowed rate of growth for head, feet and hands

Living with Rett Syndrome may pose numerous challenges, however, despite the feeling of overwhelm with a diagnosis of Rett Syndrome, you may be interested to know that music therapy might a healing way to connect you with your family member. As a licensed music therapist, I have been working with children affected by severe disabilities and special needs as well as supporting their caregivers by introducing and integrating music therapy into their treatment plan.

I am here to help you transform your loved one’s journey from surviving to thriving and you do not have to travel down this road alone.


How can music therapy address the need areas for an individual with Rett Syndrome?

From a research study perspective, here is promising news about music therapy as a tool: Taiwan’s Kaohsiung Chang Gung Memorial Hospital studied 23 families of Rett patients who were receiving regular follow-up care with music therapy, and stated the following findings:

  • Nonverbal communication improved
  • Social interaction increased
  • Abnormal respiratory patterns lessened
  • Hand-gripping ability improved
  • Eye gazing improved and notable seizure reduction
  • Reduction in parental stress

In addition, research findings showed that music for Rett Syndrome patients can:

  • Increase responsiveness
  • Increase choice making abilities
  • Effectively stimulate, activate and engage
  • Increase self-regulation in girls
  • Improve parent-child interaction
  • Improve social skills
  • Improve motivation and interest

Music therapy sessions can include a variety of activities such as playing eye-catching instruments such as an ocean drum in various positions to assist with visual tracking to the use of pictures of favorite songs/instruments or even singing to your child during choice making activities. Some other creative possibilities are to add a music instrument sound effects to stories to gain attention and focus. These are just a few examples. Now, you have the choice as a parent or caregiver to give your loved one a chance to overcome, transform and heal!

As a board certified music therapist and nurse and with years of extensive experience, I have created success-based activities that address your child’s developmental skills. I am honored to be a part of the Music Therapy profession where we are always striving to make sessions fun, musical and healing.

Reach out and take the first step towards healing and being supported! Consider starting out with a private session, I currently have some openings for children with Rett Syndrome. Please feel free to connect with me, if you or someone you know has a child affected by Rett’s Syndrome that needs this kind of therapy.


Kim McMillin

RN, MA, MT-BC, LMHC, LMFT (CO) Licensed Mental Health Counselor, Board Certified Music Therapist

I am passionate about helping others to find the goodness within them and to heal the barriers that prevent them from embracing the light of goodness inside. Each of us comes into this world as a magnificent sun. What often trips us up is that we learn to identify with the clouds — ugly things…