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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My First Time

If you ask a mom in the disabilities community about the first time she heard the r word after she learned of her child’s diagnosis, I can guarantee she remembers. This is the story of my first time.

The ocean air hits my face and I welcome it. I finally begin to relax. The past 24 hours were exhausting. Truthfully, the past year was, but we are here. Our family is on the beach and on vacation. My feet brush against the rough sand as I try not to move. I don’t want to wake the baby. She is wrapped in a beach towel resting in my arms. We sit under the umbrella.

There is a large group of people in our crew. Sienna and I are somewhat off to the side. I don’t know everyone here. The beers are flowing. I notice a beach tag girl coming towards us. I gesture to my mother to hand me the bag where I stored our tags. A person in our group says, “Uh-oh. Here they come. When I was young, we used to pretend we were r******* to get out of paying for beach tags.” A few people laugh. A few people look toward me to see how I will react. Someone notices the tension and swiftly changes the subject.

My heart races. I feel the blood pumping swiftly through my veins. That relaxation I felt evaporates into the air. My stomach flips, and I feel as if I could throw up. My body sinks into my beach chair. I don’t think I could move if I tried. My head feels dizzy and light. My arms grip the baby protectively and instinctually. My eyes water and I am grateful for the sunglasses on my face. I knew it would happen. I knew this moment would come, but I didn’t expect this physical reaction. I didn’t expect it to hit me this hard.

I want to wrap Haley, Sienna, and me in a bubble and float off to a deserted island where no one can touch us. I want to protect them forever. How will I do this? Will I ever be strong enough to defend her? Will she hear this word? Will it cause this physical reaction? Will Haley hear it?

Obviously, I recovered from this moment. Shortly after this happened, I started my blog. Now when people say this word in front of me, they catch themselves. They cover their mouth, look at me and say, “I’m sorry.” I appreciate that. I do. But I can’t help but think…..what if I wasn’t here? Would they still stop mid-sentence? Would they use the word freely? Is my presence the only thing stopping them from saying it?

I’m posting this, because I want you to know how much this word affects us. I want you to understand the physical reaction it causes me. I want you to stop using that word all the time. I don’t want to hear I am overly sensitive or being too P.C. I don’t want to hear you weren’t talking about my child. None of that matters.

In the past, I gently corrected people when I heard this word. I’d be lying if I didn’t acknowledge the fact that I remember each and every person in my life that said this word in front of me. I do and it hurts. It’s a gut punch. I am sick of being gentle. I am not gentle anymore. Life hardened me. Expect to be educated if you say this word in front of me.

Have you ever heard of Rosa’s law? President Obama signed this law on November 17, 2009. The law removes the terms “mental re*****tion” and “mentally r*****ed” from federal health, education, and labor policy. It was replaced with the following people-first language; “individual with an intellectual disability” and “intellectual disability”.

The r word is never acceptable. If you see it on any medical paperwork, please inform the office that they are violating the law by using outdated terminology. If you hear a friend say it in casual conversation, ask them not to use it. Remember this story. There are thousands more like mine.


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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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