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.

Continue Reading

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.

Continue Reading

Inaccurate Sibling Perceptions

Something happened recently. There’s been a shift in pity. Lately, it’s directed at Haley, and it’s not always welcome. People assume that Haley is missing out on childhood because of her sister. They make comments. They always hit me with them when I am in the middle of parenting my children, which makes it hard to address. I am not always the best at advocating in person. That might be why I choose to blog. I am not quick with reactions. It takes me time to digest things. So, I’d like to share these incidents in the hopes that they change perceptions.

The girls take a gymnastics class at the same time on a weekly basis. Haley goes in the big gym with the 4-6 year olds. Sienna and me go to the little gym with the 1-3 year olds. Admittedly, I haven’t had much time to interact with Haley’s coaches.

This week was parent visitation week and I split time by visiting both of their classes with both children. It was a nightmare. There were so many obstacles that Sienna couldn’t navigate. I spent the majority of time chasing her. I didn’t observe Haley in the way I wished I could. One of her coaches came up to me in the midst of this and asked if Haley was moving up to the older class next semester. Haley is ready for it, but we can’t fit it in. It doesn’t work for our schedule. We aren’t alone in this. This is not a special needs thing. This is a balancing all my kids’ actvities survival thing. When I informed her of this, she said, “I’m sure Haley has to make lots of sacrifices for Sienna. She’ll be fine in the younger class next session, but she is ready to move up.” It was at this moment that Sienna ran away and I had to chase her.

We had a similar interaction while Haley tagged along to an orthotics fitting. Haley was not doing a great job listening and I scolded her. The salesperson witnessed this and I noticed a judgmental glare. She began to measure Sienna’s feet, and Haley asked the salesperson how orthotics were made. She complemented Haley and said that was a great question and explained. Before we left, she came back in the room with a lollipop for Haley, not Sienna. She said, “You deserve special attention too, you know. It’s great that you’re so patient when you have to go on so many appointments for your sister.” Pardon my french, but what in the actual eff?

If I’d have had the time and energy, here is what I would say to them. ALL siblings make sacrifices for each other. In fact, Sienna sacrifices quite a bit of time when I take Haley to her dance classes for two hours a week. She certainly doesn’t get pity in the waiting room. She doesn’t get a lollipop. Don’t assume that because my kid has special needs that her sister is missing out.

In fact, she’s gaining something. She is exposed to something very few children get to witness. She has learned about empathy, love, and hard work, because of Sienna. Yes, sometimes she has to give up an activity. Sometimes, Sienna has to make a sacrifice for Haley too. That is what families do for each other.

When we were on our way home from gymnastics, Haley told me that every kid in her school, even the older ones know her. I laughed. I am glad she isn’t lacking in confidence. I said, “That’s because you’re such a nice girl and you talk to everyone.” She said, “No, Mom. It’s because of Sienna. It’s because you came into school and taught about her. Everyone thinks it’s cool that I have a sister with Down syndrome. She had a huge smile on her face.” So, don’t feel sorry for her. She’s got this.

Continue Reading
1 2 3 16