by Rachel | Uncategorized
I hadn’t planned on writing a post today, but I just finished reading a book and wanted to share it with you. In Autism & Alleluias, author Kathleen Deyer Bolduc gives us a glimpse into life with Joel, her son. Joel, like so many of the children who touch my life and yours, is diagnosed with autism.
Each chapter tells a story or experience, such as Joel’s touching visit with his grandmother who suffers from Alzheimer’s Disease (a chapter that especially affected me) and his special relationships with friends and caregivers. But of course, as we all know, autism often makes life very difficult. In addition to the good, Kathy candidly writes about the bad and the ugly, including Joel’s meltdowns, struggles with finding the right medication, and the questions about Joel’s future as an adult.
Kathy’s faith led her to the moments of clarity and beauty she details in her book. Even in the most seemingly hopeless situations, she discovers the “alleluias” in them. Sometimes they are buried or don’t appear until days or weeks later, but they are there. One of my favorites was Kathy’s struggle with the fact that her son was being trained as a trash collector during high school. As she meditated on this reality, the words trash man for heaven came to mind. This phrase helped her accept the fact that Joel was humbly and obediently making the world around him a better place, and likewise, let her fully accept and be thankful for his job. (Fun fact: the college music therapy student Joel was working with at the time wrote a little ditty about this job, which became one of his favorite songs).
Kathy’s story is deeply rooted in her Presbyterian faith, but her message – the importance of valuing, honoring, and enjoying the unexpected gifts of children with special needs – is universal. I laughed, cried and related (as someone who works with children who have autism on a daily basis) while reading.
And in the spirit of National Autism Awareness Month, I would love to pass this book on to a Listen & Learn reader. The first person to email me (be sure to include your full name and mailing address, as well as your connection to autism) will receive my copy in the mail this week. For those of you who would like your own copy, you can purchase the book here.
by Rachel | Uncategorized
Last November, I had the opportunity to attend the AMTA National Conference in San Diego, California, where I met countless amazing music therapists. One person, in particular, stood out to me; I kept seeing him everywhere I went – the exhibit hall, the sessions I attended, and so on. He seemed like a fun and outgoing person, so I was excited to finally meet him face-to-face and chat a bit towards the end of the conference.
His name was Tim Ringgold, and I came to find out that he was a music therapist (and fellow blogger!) from Orange County, California. We got to talking about his daughter, Bella, who was born with a rare skin disease called Epidermolysis Bullosa (EB). Tim explains it in these words on his website:
Anabella Ringgold was born on May 27, 2009 with a rare skin disease called Epidermolysis Bullosa, or EB. She has the rarest form, called Recessive Dystrophic, or RDEB for short. A single gene in her body responsible for making the anchor that hold her skin to her body is defective. This causes blisters and wounds to occur all over her body, including her mouth and entire GI tract. Any kind of friction, rubbing, bumping can cause blisters to form, or it can cause her skin to shear clean off. Currently, there is no cure for EB. Life expectancy is under 20 years due to risk of malnutrition, infection, or squamous cell carcinoma. Although pain and discomfort is constant, Bella remains bright and cheerful, bless her heart.
I was eager to stay in touch with Tim following the conference, and I was able to do so through Facebook and Twitter. When he announced earlier this year that his book, Bella’s Blessings, was available, I didn’t waste any time in purchasing it. I can’t tell you how glad I am that I did, because it is the latest addition to my “must read” list.
In the book, Tim takes us back to the hours just prior to Bella’s birth. He recounts the moments leading up to it, as well as the actual event, at which point they learned of Bella’s rare skin disease. I felt like I was with the Ringgold family on their roller-coaster of a journey from page 1 to the very end. Tim started a blog just days after Bella’s birth in order to keep family and friends apprised of her progress, and the book contains entries from the beginning through Bella’s first summer.
The back of the book reads: “The secrets to the silver lining…revealed!” This is such a fitting description; Tim and his family found the silver lining in the very darkest of storm clouds. Talk about a story of faith and strength. Faith in God during the most trying and scary times, and strength as they navigated their way though. Tim provided music therapy not only for Bella during her time in the NICU, but the other babies, as well. He shares every emotion, every struggle, every triumph, and every moment of Providence throughout those first few months; my only disappointment was when the book ended. Luckily, Tim’s blog picks up right where the book ends, and we can all keep up with Bella and the Ringgold family.
In the past, I haven’t reviewed books here other than those that I use in music therapy sessions. But Bella’s Blessings is one that I recommend to you, knowing that it will inspire and remind you that there is silver lining in every situation with which we are faced, just as it did for me.
Each month, up to 50% of the proceeds from book sales are donated to a different children’s charity. You can read reviews and make your purchase here. And right after you do that, add Tim’s blog, Care for Anabella, to your blogroll.
