The Gut Punches

I cannot believe that tomorrow my baby will be three years old. It’s fitting that this week the Today Show aired a video of Shawn Johnson and her husband celebrating the news of their child not having Down syndrome. Three years ago, I remember anxiously awaiting the neonatologist’s opinion on whether or not Sienna had Down syndrome. I prayed that she didn’t, but I didn’t get the news Shawn and herhusband did. My baby did have Down syndrome.

Here’s what I want to say to the moms out there that got the same news I did. The moms sitting in hospital beds watching TV hoping for a distraction, but instead finding more pain while watching their morning news program. These painful moments are the hardest part of this journey. The casual use of the r word. Gut punch. A friend celebrating her normal genetics results. Gut punch. A curious child asking why your baby looks different. Gut punch. I’m not going to sugar coat it. These moments happen and they take your breath away. I promise you that you’ll get resilient.

The world doesn’t know that this life can be beautiful. They don’t know what they’re missing. To quote Shelby from Steel Magnolias, “I’d rather have 30 minutes of wonderful than a lifetime of nothing special.” Guess what? You’ve just been gifted a lifetime of special. You’re going to witness miracles every day and you will know that you’re witnessing them. I know it’s hard to see through the fog you’re in, but I promise you that one day you’ll be grateful for the perspective your child will give you. You’ll be grateful for the empathy your family will gain. You’ll learn how capable these kids of ours can be. Your dreams for your child don’t need to change. You’ll realize that the biggest obstacle in this life of ours is the outside world, and all that they don’t know. Try to give them grace. Try to educate them. You’re an advocate now. And when the outside world breaks you with one of these gut punches, you’ll quickly learn that there’s an army of moms behind you that do get it. We get it and we’re here for you.

Continue Reading

The Beginning of our IEP Journey

Sienna runs from one side of the room to the other, shouting loudly, while chasing her sister. They both erupt in laughter. I stare at them and observe Sienna. The looming pressure hits me like a truck.

How can this document capture her personality? How can I possibly predict her needs? I reflect on all the changes that have occurred over the past year. I sigh. Even more daunting is the thought that this is only the beginning of her educational journey. Our first IEP meeting.

What the heck is an IEP? I had never heard that terminology until I entered this world. This world is full of acronyms…..IEP, PT, ST, SLP, OT, AIU, etc. It can overwhelm you. An IEP is an Individualized Education Plan. Sienna will need one every year. This 20+ page legal document is a requirement every year. We have to make her needs clear, and we have to spell out the accommodations that she will require.

For instance, we found out that Sienna is aspirating not so long ago. All of her liquids are thickened. During snack time, this will be crucial. While the other toddlers in her class are drinking water or milk, Sienna will need juice. Sienna won’t drink water. It spills out of her mouth. The taste of juice wakes up her mouth and stimulates her muscles to drink. I know that sounds crazy, but it is our reality. I have tried thousands of times to get this child to drink water. So, I am sure it will seem unfair to a bunch of 2-3 year olds that Sienna gets juice while they drink milk or water.

What else will she need? Tomorrow, she will be evaluated by strangers. A speech therapist, an occupational therapist, and a physical therapist will all make determinations about the services she will receive for the next year. They will make this determination after one brief meeting. Since Sienna cannot make her needs clear, that’s my job as her advocate. Again, the pressure looms.

Tomorrow, we will say goodbye to the folks from Early Intervention. Most of them have been with us since Sienna was 6 weeks old. On her third birthday, our professional relationship with them will be terminated. It’s impossible to understand the emotional connection I have with some of these people. They were there when I wasn’t ready to accept the diagnosis. They have watched me grow in advocacy. They have seen Sienna overcome countless challenges.

This is just another part of this journey that others don’t think about. I find myself using the acronym IEP around friends and family. I forget that they don’t know what that is. Most of them have typically developing children. They have never found themselves in this situation. Their children don’t require exceptions to deal with behavior, health & safety, transitions, and learning.

The only thing that feels within my control right now is spelling out her needs. I create her one page profile sheet. I spell out her strengths, weaknesses, and what works for her. Keep in mind that she is only two years old.

As I feel the pressure, a little voice in the back of my head reminds me that she is going to the same school Haley attended. She will be surrounded by the same love, support, and inclusion that nurtured Haley into the beautiful soul that she is. This school will do whatever we need to make sure that Sienna is safe, happy, and that she flourishes. It’s going to be okay. I can relax knowing that for the next 3 years that is our future, but just like saying goodbye to EI, I know that we will have another transition in three years. At the end of the day, our family is the only permanent fixture on this journey. We will never stop advocating. Tomorrow is only the beginning.

Sienna’s one page profile. For information on how to make your own, email me at shannonstriner@gmail.com
Continue Reading

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, most insurance companies will not approve 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.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.

Continue Reading