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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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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