For the New Families Entering this Extraordinary Journey

I stood in your shoes. I stood at the precipice of this life, my emotions engulfed in fear, grief, and uncertainty. I remember the congratulations and the welcomes from our community. I still felt uncertain and then I felt guilt for my uncertainty. I want you to know that everyone entering this unexpected path has felt what you are feeling. We were not sure we could do it, yet here we all are saying congratulations and welcome to you. There is a reason for that. We have the gift of perspective. I promise that you will have that gift someday. You will process this and when you do, you will come out the other side. Someday, you will be dancing alongside us with your silly socks at a World Down Syndrome Day dance. I promise this life is something you will want to celebrate.

​Emotions are fleeting. Love is permanent. This child you have been gifted with is your baby and you will love him or her with a fierceness that will move mountains. You will become an advocate. As you settle into this role, you will learn about adults with Down syndrome living meaningful lives. Adults competing in Ironman triathlons, lobbying in Washington DC, acting in movies and television shows, and being celebrated for the people they are and the gifts they bring into this world. You will learn that emotional intelligence can take you far in life. You will see parents throwing parties when their children walk, talk, sit up, and everything in between, celebrating every milestone in agonizing detail because it warrants that reaction. You will have deeper friendships with other parents in this community. When you take away the pretense of perfect parenting, you connect with people on a more meaningful level. When you let your guard down and are given the opportunity to be truly vulnerable, the reward is a supportive lifelong community.

I would be lying if I said this path was easy. It’s full of mountains to climb and roads less traveled, but there is wonderment in this life. Hard work gives us an appreciation for things others take for granted. This journey turns life’s most ordinary moments into the extraordinary. My daughter, Sienna age 4, is sunshine, rainbows, and laughter. She has made us slow down and enjoy each day. When she was born, I found myself focusing too much energy on the future and unknowns. But Sienna in her wisdom, taught me that it was wasted energy. The truth is that none of us knows where ANY child’s life will take them. So now, we take it slow, enjoying each stage. We experience more everyday magic. I am so grateful to her for that welcome change in pace.

Sienna has forced me out of my comfort zone. She has made me take risks. Because of her, I started a blog that has been published by the TODAY show and ScaryMommy. Because of her, her 7 year-old sister and I advocated and fought for her rights in front of a US Senator. Because of her, he read my words on the floor of the United States Senate. Because of her, I have taken trips to Chicago, Phoenix, Nashville, and several trips to Harrisburg to connect with other parents in this community, each trip more meaningful than the next. Because of her, her sister has a front row seat to empathy and compassion. I can honestly say that Sienna has enriched our lives. She has made us better people.

Your child will do the same for you and your family. One day, you will stand in my shoes with a four year-old with Down syndrome, and you will be the one telling new parents that this life is worth celebrating. Until then, know that we have all felt what you are feeling and we are here to help you navigate it all.

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Living in Fear

Powerless. That’s how I feel. I watch as she avoids saying one word to her speech therapist the entire session. She’s so stubborn. She isn’t making progress. Her peers try to communicate with her and her responses are unintelligible. I know it will come. It will come in her own time.

Sienna doesn’t see the giant clock counting down over her head. She doesn’t know it’s there. How much time do we have left? Her outpatient therapists are her biggest cheerleaders. Yet, they could be ripped away from us in the blink of an eye.

 

How? Medicaid. A controversial topic today. This post isn’t meant to be politically divisive. It’s meant to explain why this government program is so important to our family and families like ours. If you’re anything like I was before I entered this world, you might not know.

When Sienna was born, one of the nurses said to me, “You won’t have to worry about the overwhelming costs associated with raising a child with a disability – all the therapies and medical equipment. You live in one of the best states (Pennsylvania) in the country for services.” At the time, in the fog of Sienna’s diagnosis, I didn’t realize the significance of that conversation.

Pennsylvania is one of the few states that provide Medicaid to families raising a child with a disability, regardless of their income. You might think that’s unfair. If we have a decent income, we should pay for our child, right? What you might not know is Sienna’s primary insurance covers 20 therapy sessions per year. This is typical of most insurance companies. Sienna receives 8 therapies per week. We’d burn through what our insurance covers in 2 1/2 weeks. After that, we’d be paying out of pocket. How much? $3,400 per week or roughly $163,000 per year. I have the EOB statements to prove it. Someone in my life once said to me, “So what? You can afford it. Sell your boat.” If only it were that simple. I’d give up the boat in a heartbeat. I’m not even talking about the dozens of extra doctor visits and medical equipment like her walker, adaptive stroller, and orthotics. Sienna’s needs are minimal compared to other kids in the different abilities community.

Another Mom and I spoke with a government official a few weeks back over a conference call asking if the proposed Medicaid cuts could affect our families here in Pennsylvania. He informed us that the possibility of Sienna losing her access to these services is real. Medicaid operates with funding from states and the federal government. For each dollar a state spends on Medicaid, it receives a matching amount of federal funds—without limit—making Medicaid a statutory entitlement for states participating in the program. The Trump administration wants to convert Medicaid to a block grant system. The least complicated way to explain it is to say this….it would put caps on everything. They wouldn’t be obligated to match that funding, and because Pennsylvania spends so much, they don’t have any extra to cover the gap that would be left by the federal government. Families like mine would be first on the chopping block. We have a decent income and no complex medical needs. When and if this happens, we will be forced to cut therapies. I will have to decide if using a utensil to eat or talking to her peers is more important. We would never be able to provide her with everything she needs. She would suffer in the long run.

Study after study has shown the importance of early intervention. Childhood therapies are linked to positive outcomes in the following areas; cognition and academic achievement, behavioral and emotional competencies, educational progression and attainment, child maltreatment, health, delinquency and crime, social welfare program use, and labor market success. It benefits ALL of us to give children the proper supports they need to succeed.

Last week, Sienna and her speech therapist had a groundbreaking session. After months of presenting Sienna with options, asking her to verbally acknowledge her choice, she finally gave in and spoke her preference. Elsa or Elmo, Sienna? Elsa! It was magical. It’s crossed over at home, at school, in other therapies, and in her behavior. She was starting to develop some concerning behaviors because she couldn’t communicate her needs. Because of speech therapy, hell BECAUSE OF MEDICAID, she was able to mitigate those behavior issues. She has developed a sense of independence. She deserves that. She deserves to gain those skills in her own time, not the government’s time.

If you want to know how you can help, share. Share this blog piece. Call your lawmakers and tell them you do not support the proposed changes to Medicaid. If you want to get even more involved, reach out to me. I can help. Thanks for reading.

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So. Many. Acronyms.

“I didn’t understand any of that conversation.” My brother looks at me quizzically.

“Oh yeah. How come?” I ask him curiously.

“The acronyms. There are so many. It’s like another language.”

We just finished an Early Intervention IEP (Individualized Education Plan) planning meeting. Our coordinator just left. My brother is visiting for a few days to help us out. He’s been to all of Sienna’s therapies and meetings this week. This last one has his mind spinning and it brings me back to the hospital delivery room, moments after we received Sienna’s diagnosis.

The nurse started telling us about Medicaid and EI (Early Intervention). She said Sienna might have an ASD (Atrial Septal Defect). She mentioned PT, OT, DSAP, and somewhere along the line, she started saying DS. She mentioned the loophole program and SSI (Supplemental Security Income). Suddenly, her voice started to sound like the adults in a Charlie Brown episode. I stopped listening.

When you’ve been on this journey for a few years, you start to speak the acronym language. But when it’s brand new, it’s terrifying. Because of my experience, I think it’s one of the biggest mistakes people make when talking to a new mom in the community. You’re already scared and then people start saying DS, ASD, EI, PT, OT, SLT……..and you feel totally overwhelmed. I thought I would never understand this world.

When we got home from the hospital with Sienna, I found our local Down syndrome support Facebook group, which is full of veteran parents. It was defeating. I didn’t understand many of the posts. I was relieved to find DSDN (another acronym, right?). When I found them, I was connected with other moms. They were at the same stage as me. They had babies the same age as Sienna or a few months ahead. They were new to the acronyms too. I felt like I could ask questions without judgment.

I was actually lucky. My cousin works for Early Intervention in NJ. She started to translate for me. She drove to Pittsburgh to be at Sienna’s first EI evaluation. I didn’t speak therapy then. I only understood PT. Everything else was alien, but she told me it would become my new normal. She was right. It is now my new normal.

I have a message for new moms. Don’t let it scare you. I promise that one day it won’t feel this foreign and paralyzing. If someone speaks to you in acronyms, ask them to stop. Sometimes, we just need a reminder that it takes time to learn this language.

Focus on your baby. If you want to breastfeed, tackle that challenge. If your baby needs to gain weight, conquer that. All the other crap can wait. Take it one day, one obstacle, one snuggle at a time. The rest will come. You don’t need to know all of this immediately.

In the meantime, if you ever come across something you don’t understand, I am just a Facebook message away. I’d be happy to help you figure it out with zero judgment. DSDN (Down Syndrome Diagnosis Network) is a fantastic resource when it’s all so unfamiliar. There are other moms feeling the exact same way that you are feeling. You’ll bond with them, and you’ll slowly start to realize that this community isn’t as scary as you initially thought. To be connected with one of their online birth groups, visit here.

If you want to print out a list of common acronyms in our community, this website has a handy printout of all the terms.

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