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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Fear of the Future

How is it possible that I am still awake? I have knots in my stomach and a flutter in my chest. I think I’ve played out every worst-case scenario for Sienna’s future. I don’t know when it happened. When did I start spending so much time being anxious? I think it all began with school. 

Sienna began preschool this fall. It’s a difficult transition for all parents. We have to learn to let go of our kids. As a mom of a child with special needs, I have found it more challenging this time around. We enrolled Sienna in a program called gentle separation. She struggles with detaching herself from me, so this seemed like a natural fit. I could be in the classroom until she gained her independence. I decided to start her out in the two-year-old program, because developmentally, she aligns with these children more.

Since school began, I find myself waking up in the middle of the night over and over. I wrestle with the fact that time is passing and no matter how hard I try, I can’t stop it. When Sienna began school, the bubble we’d been living in popped. I quickly realized that I’d been sheltering myself from reality. When forced to see her side by side with other children on a daily basis, the reality of her development hit me like a 2×4. I had to observe her side by side with peers much younger than her. I watched as they physically and developmentally did things with ease. I watched as her entire class walked to the playground and she fell behind. Her teacher was always by her side. But the visual image of children soaring past her while she slowly walked down the long hallway is one I play over and over in my mind. It’s a metaphor for this stage we find ourselves in. It’s the stage where the differences in her development between herself and her neuro-typical peers become glaring. There is no hiding from reality anymore.

Let’s start with the positives of the process. The gentle separation program involves a series of steps. The parents and I spend our time in the hallway and library. We are present in case our children have separation anxiety. This time also allows us to share parenting challenges with each other. It’s opened the doors to meaningful conversations. I was able to explain Sienna’s challenges. Every single parent in this classroom is welcoming and inclusive. I worried the parents might think Sienna was dominating the teacher’s attention. I couldn’t have been more wrong. This has been a nice surprise. 

The biggest challenge involves the fulfillment of Sienna’s IEP. I never anticipated challenges this early on. I had heard the horror stories, but up until this point, we’ve had all positive experiences with therapists. Here is what I’ve learned. They don’t always show up. They don’t always tell you they aren’t going to show up. They don’t come at the time you’ve scheduled. They don’t communicate with me. They communicate with the school. Had I not been in the school, I might not have been able to confront them and demand they fulfill her plan in the way she deserves. There are points during the day when Sienna needs assistance -the physical demands of recess and during times of transition. This is why they’re scheduled at specific times. In my opinion, they view Sienna as a box they have to check off their list. This has led to many worries about her future. I cannot explain how much this wakes me up at night. What if she can’t communicate her needs in kindergarten? I opened up to other parents in the different abilities community during Special Olympics, and what I learned is this problem is all too common. A father shared a story about his son being placed in the special education classroom too often and the school did not communicate that. He was made aware because he knew someone inside the school.

It’s just another part of this journey that is new and scary. It’s a fear most parents don’t face. I am hands-on in every single therapy session. It’s always been that way. I am still able to play that role in outpatient therapies, but at some point we will need to rely solely on the school system. As I learn more, I realize the aides and therapists are underpaid and overworked. My plan is a charter school for Sienna, but it’s an extremely competitive lottery system, so there are no guarantees. When the walls of her nursery school are no longer there to protect myself and her, what will it look like? It’s terrifying and it’s out of my control.

This week, I left school. I went to two hot yoga classes. That’s my plan. I am fitting in self care to help direct my frustration and anger about my lack of control. Sienna’s transition has been seamless. She hasn’t asked for me once. The teachers share stories of her holding hands with friends. The kids love her and each other. This is a wonderful time in her education. For now, I can relax and celebrate the fact that inclusion does work. I can celebrate that there are parents that value it. But in the middle of the night, when I wake up, the future looms and my lack of control suffocates my rest. The image of Sienna falling behind in the hallway plays over and over in my mind.

 

 

 

 

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