Chaos Continued

For the past 11 or so months, I’ve missed the busyness of our lives. I am not going to lie. The first few months of the pandemic were the reprieve I have long desired. I enjoyed the stillness of time spent in the backyard, scavenger hunts on walks, and the hum of virtual school background as our days stretched into months. Then those days became more stressful. I watched Sienna’s development fall behind and Haley’s anxiety escalate. We were all ready to resume our lives.

After Jason and I were fully vaccinated, we decided it was time to do just that. Sienna’s preschool opened. We chose to send Haley back to in person learning. We resumed in person activities and therapies. I immediately saw a difference in both girls. Sienna is talking more. She is playing appropriately with toys rather than stimming. Haley, for the most part, has a lightness in her step I haven’t seen in over a year. Jason began traveling again and is gone during the week. And here I am, holding down the fort. While in quarantine, I started some volunteer work which has almost become a part time job now. I am enjoying it, but it’s advocacy and it’s time consuming. I forgot about the chaos of our days, and how sometimes those days have the power to break me. The story I am about to share is about a day I recently did break.

I was in the midst of picking up Sienna from school. I had to rush to get her lunch, so that we could make the mad dash to the pediatrician for an eye infection, then it was off to get Haley from school, and get to PT as quickly as possible. I also had a zoom meeting scheduled that evening, and Jason was out of town. My phone rang. It was a neighbor calling to ask a simple question, The conversation was friendly enough and my neighbor asked how I was doing. Truthfully, this was a really rough week and I wasn’t doing well. I didn’t say that, but I said that I was struggling to come to grips with the continued chaos of our lives.

He then said to me, “You know what, though? That’s all on your terms. It could be a lot worse. You could have a job and have to be at a desk all day.”

I was so taken aback. I said, “Well, I consider what I do work.” He then said, “Oh that’s fun work. What you do everyday is fun.”

I cannot explain how angry this made me. I quickly made an excuse to get off the phone. Tears filled my eyes as I raced to get to school on time. It stuck with me though. All day it stuck with me. Fun work.

At the pediatrician as I restrained Sienna so they could examine her eye, I thought, is this fun? Racing to pick up Haley from school and get to Sienna’s therapy appointment, as my blood pressure rose, I again thought…is this fun? While there and watching Sienna struggle to do things that come so naturally to other kids, I thought…is this fun? Is this life on my terms? As we got home and I rushed to do the laundry, cook them dinner, do their bedtime routines, and get them in bed so I could moderate a zoom meeting for the DS community, I thought…is this fun? Anyone who has small children knows that very few things are on your terms at this stage.

I want to make something very clear. I respect working women with all my heart. I really do. I wish the world respected stay at home moms. When I worked, I had time to schedule doctor’s appointments for myself. I could enjoy a cup of coffee at my desk while working in peace. I could chit chat with other adults and not worry about a child injuring themselves. I could do things for me. I enjoyed it. I ultimately made the best decision for our family. Jason’s career led him to traveling during the week and my heart led me to being home with Haley full time. Those first couple years of her life were some of the best of mine. I endured four miscarriages, but I had my girl to pick me up. The miscarriages also weren’t on my terms.

I reflected on that call, and thought there was no point in dwelling on it, but I am sharing it today, so that maybe you can learn from my neighbor’s mistake. Never assume you know what a person is going through. We all have burdens and some carry them more gracefully than others.

There is an “extra” in this life. Things can be extra hard. Emotions can take over, and that can take a toll. During those still days, I wasn’t watching Sienna next to other kids her age. I wasn’t comparing her with others. There was peace in that, and readjusting to that has not come easily to me. I am not proud to say that, but it’s the way it is.

But that same day, something miraculous happened during Sienna’s therapy session. Haley participated in the session and rode a scooter down the halls. Sienna was trying fervently to do the same thing watching her in awe. I watched her cry as we pushed her, and made her forge on. It broke my heart to challenge her and watch her struggle, but her therapist knew she could do it, and I knew I could trust her therapist. I was certain this was going to be a a failed mission, but then Sienna did what she always does. She proved that she was capable. Her sister being there motivated her. I got to witness a small miracle. Tears filled my eyes for the second time that day on the way home from therapy. That moment right there makes the extra worth it. There is so much beauty in this journey. I would not change my life for anything. I am grateful for the perspective I have been given and the small celebrations and miracles I get to witness every day.

Sienna’s therapist assists her trying to ride a scooter, while Haley rides one to the right of her.

I am happy to say that I am now adjusting to the continued chaos of our lives. The muscle memory was there. I just needed to find it. Our days are flying by, but watching my girls soar as we race from place to place is a gift. I wouldn’t have it any other way. I guess some days it is actually fun.

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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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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.

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