The Privilege of Music

When I reflect back on my life experiences and think of some of my biggest joys and most devastating heartbreaks, I remember turning to one thing to celebrate, and at times immerse myself in grief. Music.

Music is an intrinsic part of all of us. The range of emotions that can be found in a song help us process our feelings. Rhythm and pulse can be found in our heartbeat, and our breathing and movement. Melody is created in our laughing, crying, screaming, or singing. Our feelings can be processed and held within the rhythms and harmonies of different musical styles. These intimate connections with music remain despite our abilities intellectually or physically, and are not dependent on musical training.

Because of this, it makes sense that music therapy would offer numerous opportunities to teach children an array of things. As babies, when Sienna or Haley were upset or struggled to communicate their feelings, I turned to music. It has been the number one tool in my parenting kit.

As Sienna evolved in her therapeutic needs, I realized that I should be capitalizing on her love of music. When she is struggling to grasp a concept, I find a way to make it into a song and inevitably, she grasps the concept over time. She pays more attention. She smiles and listens. It garners her focus. For this reason, I chose to start weekly music therapy, despite the fact that our insurance carrier and Medicaid do not see the value in it. We pay out of pocket for a therapist to come to our home on a weekly basis. We started these sessions in March. Since then, Sienna’s vocabulary has expanded. The clarity of her speech has been enhanced. She is starting to understand colors. She is picking up various objects and turning them into musical instruments. I can understand every word she says while singing.

Music therapists can use music to help with a wide variety of needs ranging from learning difficulties, mental illness, abuse, stress, or illness. Music therapy can support the development of children in many ways. Music, in all its forms, can provide expression and pleasure at all ages. There is a great opportunity to use music in a planned way to help children and adults to improve their spoken language.

 

Yet, our local government here in Pennsylvania, doesn’t see the value in it. Our federal government aims to take services away from our children, when truly we should be adding services. Medicaid is on the verge of change. It’s looming. Every day, I wake up terrified of what the news will say about the programs my daughter utilizes. I watch her grow developmentally, with the aid of her services. When she is an adult, she will be a valuable member of society. She will contribute and I will make sure of that. I will fight and advocate to get her everything she needs, but I need your help. I need to spread this message to our senators, congressmen and women, and our political leaders. Over the next several weeks, I will be sharing stories from the families in our community about what Medicaid has helped their children achieve. I will also be sharing stories of parents that live in other states that are forced to choose between whether walking or speaking is a more important skill for their child. It is agonizing. Can you imagine having to make those decisions? It benefits us all to give children the services they need now, so that they won’t be dependent on the government as they mature. I hope that this is something we can all agree on, regardless of political affiliations. Children are our future, and they should be given the resources they need. I realize that I come from a place of privilege and that is the reason that Sienna is succeeding. Not all families are that lucky.

For local families interested, we currently work with Allison Broaddrick of Three Rivers Music Therapy. She is a fantastic resource. If you are interested in learning more about what she offers, reach out to me and I will share her contact information with you.

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The Other Mothers

“No one ever tells you that one of the greatest joys of motherhood is the other mothers.

I wish I could take credit for writing that, but I cannot. I saw it on a meme, and I will probably never be able to credit the original writer, because that’s how the internets work these days. I will try my best to echo this sentiment.

Yesterday, I had the privilege of speaking to a group of moms at a local preschool about how to teach their children about disabilities. I was thrilled when they asked me to lead this parent workshop, but as the days got closer, my anxiety grew. I love the presentations I have been doing with children. It’s gratifying in every way….their questions, their faces, their love for Sienna. It’s a connection that’s immediate. Kids are a wonderful audience.

I was ready to try something different, and what better way to make an impact than to talk to the soldiers at the front lines…..moms. They are the ones initiating dialogue and carving the path to kindness. Would moms of typically developing children want to hear our story and share that information at home? My insecurities nibbled in my ear. It’s easy to hide behind my keyboard and pour my heart out, but to do it in front of people? That was a new challenge, but in the end I decided that the message was worth my fear. That was a great decision.

Sharing Sienna’s birth and diagnosis story in front of strangers is the most vulnerable, raw thing I have ever done in a public setting. I have shared it with family, friends, and of course, all of you but through my carefully chosen, edited words.

My fears were unwarranted. As I looked around the room, I was met with empathy, tears, and overwhelming support. These moms took time out of their personal lives to willingly seek out information about how to approach the subject of disabilities with their kids. It’s not an easy topic to dive into with your kids. So many people fear that they will say the wrong thing, so they choose to say nothing at all. I firmly believe that this needs to change.

One out of every five Americans has a disability, so your child will meet someone different than them at some point in their life. We all have books in our children’s libraries about the ABCs, shapes, colors, potty training, becoming an older sibling, etc. Books open the door to meaningful dialogue. Add a children’s book about disabilities to their library. Better yet, add several. Introduce the topic to them first. You’ll be amazed at their ability to understand and empathize.  

I will have more blog posts coming up with exercises you can introduce at home to help your children understand. I will share the books recommended by my fellow rockin’ moms and myself below. 

If you are one of the other mothers, thank you. From the bottom of my heart, thank you for valuing kindness. Thank you for teaching your children about the distinction between empathy and pity, because it is an important one. Thank you for filling this mom’s heart with hope about the future.

Our Recommended Children’s Books: 

Meet Will and Jake, Best Buds Forever
Charlie’s Way, by Lindsay Robertson
You’re All Kinds of Wonderful by Nancy Tillman
What’s Inside Me is Inside You Too, My Chromosomes Make Me Unique by Deslie Quinby & Jeannie Visootsak (Our personal favorite book about Down syndrome)
47 Strings; Tessa’s Special Code
Faith has Freckles and Walter has Wheels. Bud did you know…..
Don’t Call Me Special, A First Look At Disability (my favorite all encompassing book) by Pat Thomas
My personal favorite book about Autism (plus it’s FREE): https://autism.sesamestreet.org/storybook/we-are-amazing/

 

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When Haley Met “Julia”

As some of you know, we recently went on vacation in Jamaica and spent time at Beaches Ocho Rios. Beaches is owned and operated by Sandals and they have a partnership with Sesame Street. A beautiful highlight from our vacation was the character breakfast. For all the reasons you’d expect, but also because I experienced one of those rare mom moments that instantly fill your eyes with tears and your soul with warmth.

I have always been a fan of Sesame Street. When I introduced my children to television, this is where it all began. Sienna and Haley both learned their letters and numbers at an early age, and while I did spend a great deal of time working with them on that, Sesame reinforced what I was already teaching. They also demonstrate valuable lessons about kindness, friendship, and acceptance. Plus, unlike some of the other crap cartoons out there, I actually don’t mind watching it. I also feel less guilty hoping my kids are gaining something from screen time.

Haley fell in love with Sesame all over again when her sister started to watch it. She’s in kindergarten now, so some of the life lessons apply more now versus when she was 2, and it went over her head. Sesame recently introduced the character, Julia, and she just happens to have autism. I was thrilled when they announced her as an addition to the show, and I could not wait to see how they portrayed her. Like everything Sesame does, they handled it with grace and beauty. If you know me, you know that I strongly believe that when we normalize differences from an early age, it lays the foundation for a better future for all of us. Kids learn empathy, and they also learn not to pity children of different abilities. That’s an important distinction and one that was not a part of my childhood. Haley had lots of questions during that first episode with Julia. Some were easy to address and others were tough, but Haley immediately drew the connection between Julia and Sienna. At one point she said, “So Julia works a little different, just like my sister, right?” My heart swelled with pride and I said yes, but stressed that Julia is more alike than she is different, just like Sienna. And that was that.

The day of the Thanksgiving Macy’s Day Parade, Haley immediately noticed Julia wearing headphones on the float, and asked if it had to do with her aversion to loud noises. She’s noticing things and reflecting, which will lead to compassion and understanding at a future moment in time. Sesame opened the door to meaningful dialogue. I picture families with typically developing children having these same conversations and my heart bursts, because we are evolving.

The character breakfast worked like they all do…..character plates, party bags, Cookie Monster cupcakes, photo opportunities with all the characters, a dance party, everything you’d expect, except for one part.

The host made an announcement to the children letting them know that Julia was about to join us for breakfast. He explained that Julia has autism and went on further to explain some of what that meant. He asked if all the children would clap quietly when she entered, because she didn’t like loud noises. He also said that Julia gives the best hugs. He asked if any of the kids would volunteer to receive one, but they’d have to ask for her permission first. Haley’s arm shot up in the sky and when I looked around the room I realized she was the only one.

They welcomed her up, and she knew exactly what to do. She asked Julia if it was okay and when she was given the green light, her arms wrapped around her. She came back to our table confirming that Julia did indeed give the best hugs. She asked if she could get one of the Julia dolls because she wanted to snuggle with her every night. Big mom tears filled my eyes, and I, of course, said yes. In every picture from the breakfast, Haley is proudly holding her Julia doll.

Haley and her new Julia doll

I’m not saying it’s as simple as watching an episode of Sesame Street, and boom your kid understands what it means to be autistic. I am saying that it was a starting point for us. It’s an ongoing conversation, and I always tell Haley that I don’t have all the answers, but I encourage her to keep asking them and we can learn together.

I think we, as adults, hesitate to discuss this stuff with our kids, out of fear that we will say the wrong thing. We need to dispel those fears, because our kids pick up on them. In my experience, the difficult conversations have led to some of the most satisfying moments in parenthood. Watching your child evolve into a good human being is rewarding. As a mom of a child with unique abilities, I can promise you that I won’t get offended if your kid and you stumble along the way to understanding. I’ll always do my best to help if I can.

Sometimes we choose the path of least resistance because it’s what’s easiest, but life isn’t easy. It’s complicated and so are all of the people living in it. I challenge you to start a dialogue with your kids about differences. You might be surprised by their sheer brilliance and the profound questions they ask, and you might find yourself watching your kid hugging someone like Julia, and if you’re like me your eyes might fill with huge tears of pride.

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