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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We Walk the Line

There is a line that exists, and all mothers of children with special needs walk it. It is not my favorite part of this journey. Advocacy versus inclusion. It’s a push and pull, an ever going battle in my mind. It’s the uncertainty that is parenthood. We never know if we are doing the right thing, but we forge ahead.

The push is the piece that wills me to discuss advocacy, to prove to society that Sienna has worth and that Down syndrome has a place in this world. I want people to know that Down syndrome is nothing like I thought. It’s a gift, a blessing, it’s Sienna.

Then, there’s the pull, constantly telling me to treat her the same as her typically developing peers. Place no limitations on her, and treat her as you would treat any other child. If you baby her, she will not succeed. If you draw attention to her diagnosis, you are doing her a disservice.

So, which is it?

When you write a blog and post as often as I do on social media, one thing is certain. Opinions are abundant.

“If you want Sienna to be treated like everyone else, why do you constantly draw attention to Down syndrome?”

“You don’t have to defend her, you know. She’s just a baby.”

“Don’t you think advocacy has taken over your life? Is that really what’s best for Sienna? For Haley? For your marriage?”

These are actual quotes from people in my life whom I love. They all want what’s best for me, for my family, and my children. If they question it, do you know how many times a day I question it? Constantly.

I am in the midst of a WDSD school tour teaching children about Down syndrome, carting Sienna along with me to show children that God creates beauty in all of us, that we all have unique talents and challenges. I am drawing attention to her.

The reality is this. Down syndrome is here to stay. I am not ashamed of it. Yes, it is a big part of our lives. I have a tattoo on my arm that signifies how proud I am of my daughter and our family, so obviously, I am in it for life. Sienna’s diagnosis is written on her face, and it will be for the rest of her life. Sometimes, I am relieved that her face reveals her challenges. I see mothers with children on the spectrum. How do they explain that their child is not misbehaving, without pointing out their diagnosis? It’s a constant battle.

Motherhood is insecurity at all times. You make decisions on behalf of these tiny, incapable, humans. You hope that you are doing the right thing, but you don’t get to see the future. If you screw up, their happiness and place in this world are at risk, and all of that lands on you. It’s pressure. It’s stress. It’s hardship. It’s also beauty, fulfillment, and reward. All of these feelings coexist in my world, at this moment in time.

The truth is, I have no idea if I am doing the right thing. Does anyone? Aren’t we all just faking it? All I know is that it feels right. It feels right to visit schools and share Sienna. It feels right to use my voice to tell society how much color Sienna brings to our world. It feels right to talk about Down syndrome and her challenges, because they are my challenges too. I might change my mind some day. I reserve that right. For now, this is where we are.

If you don’t use your voice to tell your story, will anyone ever hear it? Will anyone ever learn from it? Your story is who you are, and our story is Down syndrome. Our story is girl power. Our story is miscarriages and infertility. Our story is heartbreak, adventure, and redemption. Thank you for reading about this life we got. You make this mom feel like she is doing something worthwhile.

 

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