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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Kindness for the Win

Reflecting on this past month, I realize how challenging it will be to put into words the impact it has had on not only me, but my kids, and our community. Watch the video below for more perspective and be sure and read the rest of our post for more about our wonderful experiences this past month.

It all began with a trip to the store on a Saturday afternoon with my 5 year old, Haley. I had a list of items we needed to purchase in order to fulfill our 21 acts of kindness for the month. For those of you that don’t know, Sienna has 3 copies of her 21st chromosome. During October, one of the ways we celebrated her uniqueness was by performing 21 acts of kindness.

As Haley and I were driving to the store, I asked her what she thought we could do that would be kind. At first, the usual stuff came up. ‘Let’s make cookies for our neighbors. Can I have some too?’ Then I chose to dig a little deeper. Sometimes, I think we shelter our kids too much. I know I am guilty of it. We want to protect them. This was one of those times that I decided Haley was mature enough to handle reality. I asked her what she thought it meant to be homeless. We discussed the homeless men in our neighborhood that hold up signs asking for help. I love the innocence of children. Everything is so simple to them. ‘Why don’t they just get houses, Mommy?’ This led to a discussion on economics, war, and poverty.

On the opposite side of the spectrum, sometimes I am too transparent with Haley. I am too transparent with everyone. Just read my blog. She could handle it though. At first, she suggested giving them money. She even asked if Dada could give them jobs, since he had helped Uncle Dave get a job. I told her it wasn’t that simple, but that she was on the right track. I asked her, “If you were homeless, what are some things you might need?” We went up and down the aisles as she picked out t-shirts, water bottles, toothpaste, socks, coloring books, and deodorant (my suggestion). We walked around the store, going through our list, talking about how what we were doing was going to make other people happy. We were in WalMart (the epicenter of LOL dolls, Haley’s favorite toy), and as we walked by the toy section, she turned to me and said, “Getting an LOL doll isn’t about being kind to other people, so let’s not get one today.” My mouth dropped and I said, “Okay.”

We went home and made our treats. We dropped them off to neighbors and friends. The next day, Haley brought them into school along with flowers for her teachers. We spent an afternoon in a shopping center handing out flowers and Starbucks gift cards. People thanked us and one lady told Haley that she had made her whole day. We got in the car and Haley said, “Mommy, you are right. Doing things for other people does make me feel good.” She meant it. This whole experience has had a positive impact on Haley. She thinks about kindness often now. She isn’t perfect. She’s a kid, but this exercise opened the door to meaningful dialogue about the joy of giving.

For another act of kindness, we spent a morning at a local school reading our favorite Down syndrome advocacy book to a first grade class. I brought Haley along for the ride. I wanted to introduce her to the ways we can advocate for her sister. This also brought up some meaningful conversation. The concept of Down syndrome is really hard to grasp at 5 years old. She just knows that her sister does things at a slower pace, but she doesn’t care, because she’s her sister. When other kids ask why Sienna isn’t walking yet, it baffles Haley. One of the kids asked that question during our visit. That same question is always asked by her friends. When we got in the car, she said, “Why do people care so much about Sienna walking?” I explained that it is something that makes her different so sometimes people notice it, but that’s okay. We like different in our house, right? “Mommy, everybody is different. Nobody is the same. So, why does it matter?” Again, my kid is buddha. You want some insight? Spend an afternoon with a kindergartener.

We really did enjoy our time at that school. The kids were all scooting on the ground with Sienna at one point. They loved playing with our little spider monkey. We made tie dye socks and talked about their differences. I walked away feeling positive about the experience, but it is sometimes hard to tell if you are reaching kids. That night, I got home and had a message from a mom of a child we had read to that morning. It reaffirmed my belief that advocating on Sienna’s behalf is rewarding and meaningful. This mom said her little girl had fallen in love with Sienna. She wanted our mailing address to send a picture her daughter had made for Sienna. She thanked me for introducing differences to her daughter and said it opened the door to a powerful conversation.

Truly, I am just giving you the Cliff Notes version of this month. People have asked me if I make any money doing this blog. I don’t, but this month I feel I was paid far and above anything money could do for my soul. The feedback I have received in letters, messages, and emails have brought tears to my eyes and fulfillment to my heart. I have heard from other parents in our community, parents and siblings of adults with Down syndrome, students in the genetics counseling session I presented to, and people in general just thanking me for educating them and opening their eyes to the beauty of our unique life. So, I might not make any money doing this, but I will take payment in kindness any day. Thank you for following us and we hope you will continue to come back for more as we progress into the holidays.

“I have found that among its other benefits, giving liberates the soul of the giver.” -Maya Angelou

Here are some highlights from our month.

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