Joyce (blue sweater), Monica (salmon sweater), and the Moody Blues band members
Monica’s Connection with Music While Navigating Life with Down Syndrome
It is a pleasure to introduce Monica and her mother Joyce. Monica joined the Healing Harmonies community in 2022 and music has always been a big part of her life. Monica and Joyce are live-by-example advocates in the Down Syndrome Community, so sharing their story is a perfect way to celebrate National Down Syndrome Awareness Day (March 21st). Now, in her 50s, Monica is also charting life with dementia, and Joyce is right there navigating each stepping stone and barrier with her. Her dementia diagnosis has affected Monica’s orientation and ability to recall her memories, her mobility, her connection with the community, and also her ability to engage in her love of playing piano. Music therapy has been her next step in continuing her well-developed relationship with music and remaining connected with others and the moment. May Monica’s story and Joyce’s reflections encourage all parents and children navigating life with Down Syndrome or any other diagnosis.
Monica demonstrated a passion for music early in her childhood and started piano lessons around age 10. She has been playing for about 40 years! She performed at recitals and the Down Syndrome Society conference. She developed a community with fellow students and her two amazing piano teachers.
Joyce – “I never pressured her; she loved music. They want to achieve and work hard at it until they reach whatever level they can make progress towards.”
Monica also loved listening to music daily, playing name that tune/artist with her mom, singing and listening to music in the car, enjoying music at Milwaukee’s cultural festivals, and attending concerts like those by Pink Floyd and Moody Blues. These spaces are where she could connect with others, build memories, and develop her musical self. Joyce mentioned that, often band members were immediately drawn to Monica’s infectious personality, especially sully if they had a loved one with a disability. This allowed for some very special moments. All along the way, Joyce found ways to pour into Monica’s passions and have fun! All along the way, Monica used these avenues to express herself, connect, and share her love and passion with others
Joyce – “She has done a lot in life that has brought her a great deal of happiness.” “They never expect anything back; they find the joy in the action of serving and achievement.”
Joyce’s goal for Monica has always been to foster joy, for in that, Monica has found growth, achievement, community, and so much fun! One thing is clear from hearing Joyce’s story as Monica’s mother and advocate. She starts the conversations and asks the questions. She reaches out to care workers and makes the connections. In doing so, she has recently been able to receive weekly music therapy visits for Monica through IRIS. When I asked Joyce if she had any words of wisdom for other parents walking this life, here is what she had to share.
Joyce – “keep up the hope. You can never see what they can achieve until they achieve it. They guide you! You do your best to encourage them, enable them, and provide whatever you can to lend a hand to assist them in achieving whatever their goal is. And that is your reward! Monica has taught me more than I will ever teach her.”
Monica’s Dementia diagnosis has been a challenging part of the journey. Joyce first noticed the signs of her cognition changing by observing changes in her piano playing. As her condition progresses Monica struggles with isolation/withdrawal, loss of memory, and loss of skills she has worked so hard to achieve. But, through working with Healing Harmonies and Joyce and Monica’s shared moments during music listening, music is still there for Monica and is a part of her routine, life, and achievement. Monica’s engagement with her environment and others increases with her preferred music. She begins to smile and respond with animated affect and engage verbally. Her humorous self is expressed, and she may recall words from a familiar song. Over Christmas, she heard her music therapist play a pattern on piano and connected it with “The Nutcracker!”. Joyce shared that they attended the ballet as a Christmas tradition for many years.
Joyce – “Music is another language. You can enjoy the whole world through music! A lot of people with Down syndrome have difficulties with receptive and expressive speech, but music is universal, and they get it! It has been a powerful influence for Monica”
While charting the course of a developmental disability or any other diagnosis, there are many questions and unknowns. Monica and Joyce are a beautiful reminder that your loved one can serve as a guide and that seeking their passions is a key to achieving their best and fostering joy! Asking questions, finding connections, and getting creative are ways of opening up motivating and supportive opportunities. It does not always come easy, but as Joyce expresses so beautifully…
Joyce – “They teach us how to have courage. Because they have so much and they give it away. I always told her when we try together we have courage together.”
Healing Harmonies helps clients find joy and achieve their goals by integrating music and art into their lives, whether as a primary passion or a supportive tool. Check out our website, www.hhmusictherapy.com, to learn more about us and how we can serve you through the power of music and art!
