The Push and Pull of Advocacy

I turn my camera off after recording the coach going through the routine for the cheer competition and look back at Sienna.

She has melted to the ground and her eyes are puddling with tears. What had I missed?
I step towards her and ask her what’s wrong as the tears stream down her face. I try to get her to stand and do the routine with her peers, but her body is like a pile of bricks. She pulls me down to the ground with her. The other kids are staring at us. I scoop her up and she wraps her body around me and hides her tear stained face and fogged up glasses in my shoulder. I walk towards the bathroom.

I help her get seated on the potty and I crouch down to face her. Sienna is quiet and stoic with her emotions. Most people never even notice she’s upset. I’m not most people.

“Are you okay sweet girl? Listen, you have been sick and missed the last few practices. It’s okay that you don’t know the routine. Miss Amy (her physical therapist) is going to help you learn that. This is supposed to be fun.”

She looks up at me, her bottom lip extended in a fierce pout. I question myself. Is this why she’s upset? Is something else at play? I know she knows she’s being treated differently than her peers at school. She leaves earlier than everyone and is removed from the typical class often. It’s been quite the dissent from preschool last year where she was fully included in everything.

This is kindergarten. She is 6 years old now. Her emotions are more complex, layered, and mature. What must be going through her mind? Does she realize things are harder for her? This is a gut wrenching moment for us both. We are no longer in a place where her differences in development can be overlooked. We stand at the precipice of a canyon that has just begun to erode. The gap is widening and with each passing step, the gorge grows in depth. I know time will only push the other side further from our line of vision. We can’t pause or stop. We have to keep going.

I am utterly broken. Is there anything harder than watching your child struggle? I wanted her to participate in this, so she would have interactions with peers. Her favorite movie is Zombies and it includes a ton of dance and cheerleading. She imitates the moves and has fun. It’s that simple. Am I forcing this on her? And if I am, who am I doing it for…her or me? There is no guidebook to this. I can’t rely on her verbally telling me what she wants. I have to trust my mom gut wholeheartedly, and lately my gut has been unreliable.

This is the push and pull I speak about so often. There’s a voice inside me willing myself to push for her to be treated the same as everyone and to be given all the same opportunities as her peers. “Advocate for her place in this world! She is capable.” it says. Then there’s the pull, “But this is too hard for her. She can’t keep up and you are causing her anxiety by pushing.” Back and forth they go and the mental tug of war in my mind escalates. It leads to a special kind of exhaustion that bleeds into your cognition, your emotions, and your body. It’s an exhaustion that only other mothers can understand. Quiet moments are no longer sacred. The push and pull can invade your safe space at any given time.

And then, just like that, as we are washing our hands, the voices of her peers can be heard from the bathroom shouting a cheer she knows. It’s one she has learned and a giggle erupts from her and the pout has been replaced with a fierce smile.

“Should we go back and cheer with your friends?”, I say.

“Friends.”, she responds with a smile.

We walk out and the little girl she stands next to in line yells for her to come and wraps her arms around her in a warm embrace.

Sienna’s smile widens in spite of the canyon. Erosion may be an unstoppable force, but so is Sienna. The push returns to my mind and lets me know we are exactly where we should be. I let the peace in this moment soak in, because even though I know the pull can return at any moment, I know to hold onto the tranquility as long as I can.

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Sienna stands on the steps at our swim club, making her happy noises. She wades in and out of the water, giggling and splashing gently. I sit on the steps watching her. The steps are not only a destination for the kids, but also the older adults. This is the spot I usually get trapped into a conversation. 

An older woman is walking towards us, staring at Sienna. She sees me assessing her. 

“She is beautiful. She is one of God’s children.”

I immediately pull my sunglasses down from my head to shade my eyes, so she doesn’t see me roll them. 

“Thank you.”  I hate this dance.  

“Where does she go to school?”

We are interrupted as a man, who appears to be a little younger than me, starts throwing a ball with Sienna. 

“Brad, you really are the sweetest man. He is a saint. Look how good he is with her. Isn’t he amazing?” 

This kind of interaction might seem harmless but when these microaggressions happen repeatedly, they wear on you. 

“Brad works with handicapped children. He is amazing.”

I shift my focus to Brad. “What is it you do?” I ask. 

“I’m a speech therapist.”

“Where do you work?” I ask.

The woman interrupts us. “I am sorry but I cannot help but notice how good he is with her. Look at her responding to him.”

Sienna is playing the exact same way she does with anyone who engages with her. He is playing ball with her and she is laughing.

Am I taking this personally? It’s hard to know. I don’t remember anyone being called a saint for playing with Haley at this age.

I am sure Brad knew what he was doing when he went to college to become a speech therapist. Maybe Brad isn’t a saint. Maybe Brad is good at his job. 

I feel the need to clarify something. Sienna doesn’t exist to make other people feel good about themselves. We, as a society, need to stop using people with disabilities as our kindness barometer. 

I am going to pull an excerpt from the Lucky Few newsletter this week by Heather Avis:

“I feel like this should be a given, but in case it isn’t I’ll state it plainly here: being kind to someone with a disability is not a heroic act. Treating people with disabilities like everyone else shouldn’t deserve an award, it should be common practice. Of course I want my children (and all people) with Down syndrome to be welcomed and embraced and cherished in their schools and communities. I’m not saying there’s anything wrong with a classmate taking his or her friend with a disability to the prom. I’m saying that when we share that narrative, it’s important that we consider why. Is it a group of genuine friends sincerely enjoying each other’s company in truly inclusive relationships? Or is it a handout that’s expecting to be rewarded, or in the least, praised? People with Down syndrome shouldn’t be anyone’s charity case, and patronizing them just highlights how deep-seeded our ableism can be.”

We have been on this journey for 6 years now, and during that time, I have encountered the best of humanity. I have also met people with the best of intentions, saying well meaning things that over time have worn on me. 

Listen, I give people grace all the time. Sometimes, these comments hit me in a moment on this journey when I am struggling. I try to recognize those emotions in myself. I try not to be cynical and project my resentment onto well meaning strangers. I recognize that when this isn’t your daily life, you might not know what to say. That uncertainty is what pushes me to use my voice as a platform to create some understanding.

Just this year, I had to admit I was in denial about my own ableism. It wasn’t until so much resentment had built up that I realized these feelings were stemming from the same place. I want things to be typical, and quite frankly easier, for Sienna and our family. I want her to fit in. I don’t want to have to explain to strangers that she isn’t going to answer your question, because she is nonverbal. I want to blend in and not be noticed in a store and go about my day. I just want to go through life’s ordinary moments without facing one of these encounters, but that isn’t my reality.

So, how can you apply this to your life moving forward so that other moms coming behind me might not have to feel the way I do 6 years from now?

Here are some of my biggest tips. 

Read the room. Don’t assume all people are comforted by Christianity and LJC (another acronym I only heard in this world).

God doesn’t comfort me. Stop pushing him on me. Don’t tell me I am special and that he chose me. My spiritual journey is personal and it’s not something I want to discuss with everyone. It’s complicated.

Controversial opinion in this community, that surely won’t get me welcomed into the inner circle  – I don’t lean on God. I lean on therapists, experts, family, science, and my gut. Maybe God is intuitive in all of those things. That’s for me to interpret. 

People should be nice to people. End of sentence. Doing the bare minimum doesn’t deserve recognition. 

Don’t use your kid being friends with my kid as a way to brag about how special they are. Also, don’t force your kid to play with my kid. Let them figure it out. Let them be kids. I value the friends in my life whose kids let Sienna be Sienna. Sometimes that means all the kids around her are playing a game, and she is just there. I follow her lead and if she wants to participate in something that requires some adapting, we will help her. 

I love it when kids figure this part out on their own. It’s magic when adults sit back and let that happen. When it’s not a tiktok or instagram reel, and it’s just an organic, authentic consequence of childhood, it’s the best of humanity. It’s as simple as another kid picking up two stuffed animals, standing next to her, and making them dance in unison just like her. She will look up and see that they think what she is doing is fun, and she’ll be full of glee.

Let the kids have natural interactions, and be there to support them if they have questions. I do explain how her muscles work differently and that things are harder for her. That’s really all most children need to know to play.

Just this year, we were at a party with dozens of kids roaming throughout the house. Most of the adults were standing in the living room watching sports. The only parents I came across while following Sienna from room to room were moms of toddlers. I could tell Sienna was irritated to be the only kindergartner with her Mom following. I finally just stepped back and checked in from time to time. Then all of the sudden, I heard a group of them running, and shouting, “Watch out. She is a dinosaur!”.  I turned around to see Sienna with a T-Rex mask chasing them and growling. They all ran and she roared ferociously then the roars turned to very loud giggles and the giggles spread. I looked around the room and saw all the adults laughing as well. These are the moments I treasure. 

Something happens to you as you move forward in this life. You get comfortable with your kid, and it’s hard to observe the discomfort the rest of the world feels around her when all she is doing is just being herself. All the little idiosyncrasies that are inherent to her and us, are sometimes met with confusion. I get it. In some ways, Sienna can be easier than typical kids. She can go places with me, and lose herself in music, stimming, and whatever script is playing in her head. I have heard the kid recite entire movies using puppets as characters, but ask her an open ended question and the words don’t find her lips as easily. 

I have tried to let her guide me. If she isn’t bothered, I shouldn’t be either. That’s my ableism, not hers. Unfortunately, her emotions have matured this year and things are starting to bother her. I see people underestimate her abilities simply because she cannot verbally express her very nuanced feelings. I have watched the anxiety grow, like a tumbleweed collecting with each passing storm. It’s now so large that I have no choice but to face it. 

The anxiety affects everything – eating, speech, academics, friendship, social interactions, and most importantly her confidence. All her teachers this year have told me the child they see in the learning session videos I show them is not the kid they see every day. She doesn’t let her guard down, and being limited to half days has also limited her comfort level. I don’t know how to help her, but I started by calling the Down Syndrome Center of Western Pennsylvania. They have a behavior therapist on staff, who can do an evaluation, and help us give Sienna the tools to gain the confidence she needs in order to learn. She is so capable. I want her to believe in herself the way I do.

I was thinking about Heather Avis’ words in her newsletter this week. Dozens of interactions through the years played out in my mind like the one at the pool. Then I started to realize, these microaggressions aren’t going to just be my annoyance moving forward. She is going to notice it more, and she will understand the meaning. She might not be able to say that, but my kid has more emotional intelligence than most adults. She knows when she is being treated differently. I have to assume she will understand what comments like that woman said mean. 

In addition to Sienna’s feelings becoming more nuanced, so have mine. I have grown in my advocacy. I am not as polite as I used to be, and I am comfortable in my own skin. I will not hesitate to call this out. This year, the Mom I am, would have turned to Brad and asked him if he thought he was a saint for playing ball with Sienna. I am sure Brad would have said no. 

I am going to have to stop letting these comments slide, and start making people uncomfortable. I am okay with that. Whenever I meet a parent of an adult in this world, I have felt the hardship in their voices. You can tell they have seen more than you. With each passing year, I get that. 

What gives me hope? I look back to where things were for parents like me 20 years ago, and realize that there has been so much progress. Progress is reliant upon parents like me taking the baton from those veterans and continuing the work. We have to be okay making people uncomfortable. We have to be okay telling people that their well meaning comments aren’t perceived that way any more. My daughter does not exist to make you feel like a good person. She has gifts to bring into this world, so you are just as lucky to have met her as she is to have met you. 

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Breaking Mom: Our Journey to Find a Path for Kindergarten

The following post has been a year in the making. It doesn’t feel right calling it a blog post, because it’s so much more. It’s my tribute to Sienna’s kindergarten experience, and the year that almost broke me. 

Whenever I encountered an acquaintance this year, and they uttered those dreaded words, “How is kindergarten going?” I have answered them honestly, and sometimes that honesty has made people uncomfortable. That’s me though. I tend to overshare, but what I was omitting was just how inadequate I felt next to the moms whose kids were having that typical kindergarten experience. I hid those feelings. What I am about to share is what was right below the surface every day, buried under my skin, circling my mind, piercing my heart, and invading my peace.

Sienna and me outside her school saying goodbye as I prepare for another meeting with another school.

When you first learn the life you envisioned for your baby will be different, and the path you projected for your family will be more challenging, you realize just how alone you are with those feelings. There are shared life experiences that connect us as humans, but the reality of our new life with Sienna wasn’t something anyone I knew could share with me. I had to face my emotions on my own.

I coped by seeking and immersing myself in the community, and as I joined the online support groups, the “fight for school inclusion posts” littered the pages. As I read the words, I shielded myself by choosing flight over fight. It was my survival instinct. I would choose to not fully read the posts, and as time went on and I got stronger, I finally allowed the words to trickle in. I was outraged for my fellow parents, but what I didn’t realize until this year is that as much as I was sharing in their experiences, I was still choosing flight in my mind. I was self-consciously telling myself it would never be our experience. I told myself that so much that I never doubted it. 

That won’t be us. I’ve taken Advocacy classes. I was trained to be a leader in the community. We have resources. I’ll know what to do. 

I was wrong. It was and is us. At a crucial point this year, I met with a Mom whose child was older than Sienna. I thought she had made it to the other side and was at the perfect school, with the perfect inclusion model, and I thought we just needed to get there. Then she said something that forever changed my perspective. 

“What I’m going to tell you is going to be hard to hear, but I wish someone had said it to me when I was where you are. There is no perfect school. There is no perfect inclusion model, or set of circumstances. For a long time, I kept telling myself, if we just win this fight, or get to this school, or this district, or this teacher, it’ll be okay. I watched the parents around me getting to the okay – that part in parenthood where you can sit back and regain some of the old version of yourself before motherhood, because your kids are becoming more independent. I watched it happen to the parent friends around me. I kept waiting to get there, until one day I looked around and realized, it doesn’t exist in this version of parenthood. It’s a fantasy, and the sooner you learn that, the better off you’ll be. I know it’s not inspiring, reassuring, and it may even be painful to hear, but it’s the truth, and someone needs to tell you. There will always be a fight, and that person you were before motherhood, she’s gone, so you should let go of her now. This life is exhausting. You will never stop facing circumstances that force you to fight for your kid, so get used to it.”

Those words probably sound pretty harsh, but I’m grateful to that Mom, because I needed to hear them. The denial I had been lathering myself in for years slowly began to disintegrate, and what was left was a better version of myself. My ableism still lives inside me and it won’t ever leave me completely. It doesn’t matter how many blogs I write, advocacy classes I take, or nonprofit organizations I support. There will always be moments that I will wish the hardship away, and I am not ashamed to admit that. I spent a lot of time living in resentment this past year, but it was at this moment with this parent that I finally took my next steps on this journey into a place of acceptance.   

This is the story of how this year led me there. 

May 2022

The First School…

I stare up at the massive red brick building on a popular neighborhood street, in a section of the city I have lived in for sixteen years. It’s less than a block from the yoga studio I frequent 4 times a week. A knot forms in my stomach. I peak around the corner to look at the playground next to the school. I don’t see a gate that closes. My mind immediately kicks into damage control mode, and I start assessing all potential hazards. She could elope. I’m scrutinizing the stairs I should be walking up. I stare at them, envisioning her little feet struggling to navigate the enormous stone surfaces. Is there a railing? We’ll have to do PT this summer. I push the button and the principal’s voice greets me and tells me to come in. As she pushes the loud buzzer, I push open the heavy steel door, and in front of me is another set of intimidating stairs. I sigh. 

My inner voice scolds me. Be flexible, Shannon. Give it a chance. It’s a magnet school with a wonderful reputation. You’re lucky she got in through the lottery. 

Thirty minutes later, I turn my car on and wipe the tears off my cheeks. She can’t go here. The principal shared that she has two students who qualified for support aides this school year, and they never received them. The entire year!? The school was forced to find ways to support the students, in spite of the fact that they are understaffed. She made it clear this was a likely scenario for us. Sienna might not have someone by her side to make sure she safely eats her lunch. Every worst-case scenario plays through my mind. Is it me or was she trying to sound alarmist? She certainly didn’t reassure me. 

“It sounds like it’s a matter of life and death with your daughter and I plan on telling the district that in the IEP meeting. It doesn’t sound like she can safely attend school here unless they provide an aide. I’m just being honest with you. The district has not given us what we need.” she says 

I saw it with my own eyes. The special education teacher was teaching a computer class. The library was closed. The principal sat at the secretary’s desk when I walked in. My tears turn to rage. She has a right to go to school here. This place would be lucky to have her. They have no idea how amazing she is and how much joy she brings to everyone she meets.

The voice returns in my mind. Be flexible, Shannon. Be strong. You might get more definitive answers during the IEP meeting next week. My optimism fades. But what if I don’t? 

I feel the need to develop a backup plan.

July 2022

The Second School…

I weave in and out of neighborhoods I’ve never driven through in the 16 years I’ve lived in Pittsburgh. I hate leaving the city. Am I going to be able to do this 28 minute drive four times a day?

There it is again. The voice. Be flexible. Be strong. This might be the answer to your prayers for Sienna.

This is the only private school that had an opening and the resources to take her. It wasn’t my first, second or third choice. It’s been months of phone calls, tours, negotiations, a failed IEP meeting with the district, and compromises on our end left and right. I wasn’t comfortable waiting a week before school started to just hope the aide showed up. The district said these things have a way of working themselves out and scheduled a meeting with her IEP team one week ahead of her first day of kindergarten. Two people who work at the school told me they would not count on the district securing an aide. The district had the right to send Sienna to a different school with a Life Skills Support Room, if they felt it was a matter of health and safety. Sienna is a choking risk due to her diagnosis of dysphagia. This would most likely be our reality. I toured that school and it was not where I saw Sienna spending her days. It was far from our home, and they were twice as understaffed as the first school. I knew she would be isolated in the support room all day, and she had thrived in preschool under the full inclusion model. I had to look at other options. Using the word “options” sounds comical at this point. I had to beg schools to give her and us a chance. I sigh again. 

The Waze app commands my attention, and shifts my focus back to the present. While this was going on with the district, I began the process of securing an aide ourselves through our health insurance. The district was unwilling to write the letter requesting one, but private schools were open to it. Private schools don’t typically provide support aides. They typically don’t accept children with differing abilities. The nursing agency said it shouldn’t be too difficult to staff with this much lead time. The pediatrician had already written the letter of medical necessity. We were on our way. So, why was I still hesitant about this school? I really don’t like the idea of half days from 8-11:15 AM. It hardly seems like a school day, but they say once her stamina is elevated, and she adjusts to the routine, we will transition to full days. I made it clear this was my biggest concern. They say it’s temporary. It’ll be rough in the beginning with that much driving, but I can do it. I can be flexible. I just wish she could be with Haley and her friends.

And what about Haley? 

Haley will go to my friend’s house at 7:15 and walk to school with her kids.

I had just confirmed it at dinner last night. “Are you sure? It’s going to be really early. I don’t want to disrupt your morning routine.” I say feeling like a burden. 

She smiles at me and says, “Are you kidding me? We love Haley. She will probably be a help in the morning.”  

I picture myself dropping her off and Sienna looking out the window, watching her big sister going inside her preschool friend’s house, one that feels like a second home to Sienna, and it hurts. Why can’t they just go to school together? This is such bullshit. I sigh. Stop it. This isn’t an option and dwelling on it is pointless.

My friend smiles and says, “It’s gonna be fine. We are flexible.”

She has no idea how much that sentiment means to me. 

Sienna and me touring her kindergarten this summer.

Waze speaks up again. I turn into the parking lot and see the familiar surroundings of a Catholic Church and a big stone school beside it. Catholic schools are all I have ever known. It feels comforting. I look at the school, full of hope, and walk toward the steps to the entrance. These steps look smaller. She can manage these. I walk into the corridor and am greeted by the kindest of smiles at the front office. 

It’s going to be okay. I can be flexible. She can go here. 

October 2022

I walk out of the school determined not to cry until I reach the car. The secretary’s empathetic nod is the only thing that kept me from collapsing. How is this happening? I pick Sienna up into my arms and dash to our car, where I lift her into her car seat and smile through my heartbreak while looking at her. She’s staring at me. She’s probably never seen me yell at someone like that. I kiss her cheek and say, “It’s going to be okay, baby. I love you. Let’s go home.” I slam the car door and walk around to the driver’s seat but a sob escapes my mouth as I turn the corner. Keep it together, Shannon. Be flexible. She is happy. She goes in here every day with a smile. That means something. 

I get in the car preparing for the 28 minute ride home. I text my friends.

Went worse than I thought. Gonna ugly cry my way home. 

The responses come one after the other. 

Sorry Shan!
You tried. Time for Plan C! How can we help?
What happened? Are you pulling her immediately?

Ugh. Should I? No. Sienna is happy. That is and always will be, the first priority. I quickly reply. 

Long story. I don’t know what to do but the honeymoon here is officially over. 

Before I put the car into reverse, I look up our local neighborhood public school’s number and call them. 

“I’d like to tour the school as soon as possible, please. I’ll need to meet the special education teacher as well.” 

Last year, I couldn’t tour our neighborhood school because of the pandemic. It’s time to see what they have to offer.

December 2022

The Third School; My Makeshift Solution …

I rush through the drive that is now so programmed into my routine that it’s reflexive. Waze keeps changing the pickup time based on traffic, and so far it has shifted 5 minutes ahead. I am bordering on having to call or text, yet again, to tell them I am running late. I hate the constant movement of my mornings. Yoga is the only place I feel like I am standing still.   

I start going through the mental checklist. Do I have it all? Lunch, Thickener, Cooler bag, extra juice, educational materials, and her iPad. I am not a teacher but I am going to attempt to become one in the afternoons for her. 

I meet Sienna in the corridor of her school and hold her hand as we walk down those steps I looked at in July. She turns to see the other kindergarteners playing outside in the school yard during recess and says the same thing she says every time she sees them. “Bye friends.” I smile through my rage and instinctively clench my jaw while saying “bye friends”. 

I turn to face my sweet girl. Time to shift this narrative. 

“Guess what kiddo? Today, you and I are going to your old preschool and you’re going to eat lunch and play with some new friends, then Mommy and Sienna are going to play some letter games. Doesn’t that sound fun?”

She looks at me skeptically. Then I say her preschool teacher’s name and her mouth turns upwards, and that beautiful smile envelops her face. She giggles. 

We get in the car and drive 30 minutes up and down the familiar hills of Pittsburgh. We turn onto her preschool street and the emotions paralyze me. I didn’t realize how much I had been longing for the safety and warmth that transcends you as soon as you enter this space. Young moms are standing outside wearing their babies, toddlers are running through the grass, and as I park, Sienna sees the big grassy park and her old teachers playing with children patiently. She is giddy. I’d give anything to keep her here forever. 

Be flexible, Shannon. Be realistic. You’re lucky they are giving you a classroom space to teach her. Her old preschool teacher spent hours on the phone with me this weekend.

This is the plan. Her current school won’t allow her to stay for full days, unless I can get a home health aide. The stamina story changed in October. It’s all about lunch now and they won’t allow me to be there for lunch. I should clarify that it’s not the school. The school is lovely in every way. It’s the program within the school calling the shots. 

“But she is missing half the curriculum. She is going to fall so behind.” I say to the woman running the program during a day she happened to be there. She doesn’t work at the school but visits from time to time.

“She can just repeat kindergarten.” she says in a cavalier manner that lets me know everything I need to know about her and this program.

I did not choose to accept that outcome.

I have interviewed 7 aides at this point. I said yes to every single one of them, but inevitably something happens. 

Like what?

  • A missed drug test. 
  • A stall over the FBI fingerprints
  • A higher paying job 
  • An incident on the background check that the program isn’t willing to overlook. 

I have dedicated hours of my life to this project, and I am still doing it. Our health insurance only approved the aide through December, so in spite of the fact that Sienna never received the aide, I have to start from square one and get them all the necessary paperwork again. I had been on the phone all morning.  

What happened to the neighborhood school I met with in October? We have had several meetings. I have formed a kinship with the special education teacher there. He is empathetic, compassionate, and most importantly, he listens to me. He continues to check in on me regularly. Once again, the problem could be staffing an aide. I don’t know if pulling her from her surroundings abruptly is the best move. I keep coming back to her being happy. They aren’t teaching her what she needs to excel academically, but that’s why we are here. I am going to make up for that deficit. But how long can I go on like this? 

The voice returns. Stop it! You are in a magical space right now, and anything is possible here. Let’s just see how this goes. One step at a time. We head toward the dreamlike building and the stress temporarily evaporates. 

January 2023

The Judges…

“Well, you signed her rights away when you went with a private school.” the woman says

I roll my eyes so hard that she has to feel it, even though we are on the phone. 

“Yes, I realize that and I’m not trying to change the circumstances in her current setting, as that seems impossible, but what was I supposed to do? Just send her to a school that has openly admitted to me that my daughter could choke and no one would be next to her?” 

“Did you get that in writing?”

Do the people in these positions have any idea how predictable their questions are?

“No and my goal isn’t and has never been to get litigious. I just want my kid to go to kindergarten with her peers, and not worry that she is in danger.”

“Unfortunately, Mrs. Striner, I’ve been doing this a while. The people who get litigious get their kids what they need, but everything needs to be documented. What you should have done is taken her there every day and when you arrived and there wasn’t an aide, you should have had them sign something. After so many days, that’s enough for you to take them to mediation.”

Is this woman serious? I should have gotten my kid all prepared and excited for kindergarten, day after day, walk her up to the building, and turn around and walk back to the car, when there is no aide. She would watch everyone go into school, but have to turn around. That doesn’t sound traumatizing or anything. And after that, I’d still need to pursue legal action. Meanwhile, she’s missing kindergarten.  

I laugh out loud. I know I sound like a maniac.  

“I’m sorry for what you have been through but somebody has to be the one to say this is not okay. A lot of parents have stood in your shoes. We have to hold the districts accountable.”

“Well, as long as these aides are making $12/hour, this will be the outcome. How do I change that?”

“That is a bigger problem, Mrs. Striner, and it seems like you are already fighting a pretty big battle.”

I thank her for her time and hang up. This is probably the 5th resource I’ve explored and every conversation goes like this. It shouldn’t be this hard. 

My inner dialogue returns. Be strong. Be flexible. This time, I quip back. Flexible?? No one is flexible. Literally no one has been flexible other than me. I’m sick of being flexible. 

I’m also sick of the judgment coming at me from every angle – advocates, other parents in the community, family members….this is hard enough. Everyone thinks they are an armchair expert.

“You need to move to a better school district.”

“Why did you send her to a private school? They don’t have the resources.”

“What do you mean they couldn’t provide an aide? That’s against the law.”

Sometimes, it feels like my mom friends are the only ones that get it. They’ve known Sienna since she was a baby. They’ve received panicked texts all year, after each tour, meeting, and disappointment. As long as this post is, I have omitted so much. They have been through it with me and I listen to their voices for inspiration.

Keep going. You’re going to find a place for her. Don’t give up.

And so, I keep going. 

February 2023

The Fourth School; The Dream…

And here I am again crying outside another school. I have toured this school multiple times over the years. This is the experience I want so badly for her. This is supposed to be the “it” charter school, the one that can accommodate children with IEPs and has a full inclusion model for every student. We applied last year, but we were 56 on the waitlist. Every morning, I wake up and look and see if that number has moved. It is now at 35. 

This morning, I found myself in a group tour with carefree parents, asking the same questions I’ve heard every time I’ve toured. It’s physically hard not to roll my eyes or let the spite envelop me. I let them do their thing while I look for any signs of children who might need extra help. We walk in the kindergarten classroom. There are three teachers and no more than 25 students. I’m so bitter. I don’t see a kid who needs extra help. 

While engulfed in self pity, I walk into the hall and a little girl bumps directly into me. I look down at her and her beautiful almond shaped eyes, glasses, and giant smile hit me like a bullet. I can’t breathe. 

“Scuse me.” she says with a grownup behind her helping her back into the kindergarten classroom.

The tour group walks around me, because I am in a transient state of paralysis. Did that just happen? Is there seriously a little girl with Down syndrome in kindergarten here? How? I thought I knew every family in the city. Her family must be off the grid. I feel the tears puddling in my eyes. My inner dialogue begins to scold me. Stop it. The CEO is giving you the tour. You have to ask questions and you have to be composed while doing so. 

But the paralysis hasn’t left me. If there is a little girl here already receiving services, it just makes sense. She could have a friend that might face some of the same challenges by her side all through school. That’s the dream right there. It makes sense from a fiscal perspective too. She is already receiving services, services Sienna might need as well. There has to be a way. I pull it together and find the group wrapping up in front of the cafeteria. 

He asks if there are additional questions. A Mom starts asking about the reading curriculum. Here we go. Here comes the Lucy Calkins debate, and the “Sold A Story” Podcast reference. 

“We only use their writing program. We have a different phonics program I’d be happy to share.” he says.

“Anyone else?”

I speak up. 

“I have some questions. Can you tell me if every child who has an aide on their IEP has consistently received that service all year?”

His eyes grow and he can see the exhaustion and resentment in my eyes and tone. I can feel it. 

He turns to the rest of the group and shows them the exit. He pulls his card out and hands it to me and I do the same. He says, “Tell me what’s going on. It looks like you’ve been going through it.”

So I do, but it’s impossible. There is no elevator pitch for “the we have tried a magnet school, private school, home school/old preschool hybrid, potential neighborhood public school, and now please let my daughter into your lottery system based charter school because no one can support her, and it looks like she’d have a peer here story.” Before I know it, I’m crying and mortified. He tells me to email him and there is no way around the lottery and he’s sorry for what we’ve been through. He’s never seen a shortage like this year, but they have been able to maintain support for the kids that need it. We will just have to wait and see how we do in the lottery. It’s a few weeks away. He wished me luck and said goodbye.  

Another tearful moment outside another school.

I walk out defeated. I find myself in the car crying again. I text my friends, then I pick up the phone and call the special education teacher at our neighborhood school. 

“I know this may sound unorthodox, but hear me out. I have an idea.” I say

He laughs. “Mrs. Striner, nothing about you or what you’ve been through this year is ordinary. I’m listening. How can I help?”

I smile. Every time I speak to him I feel supported. That means more than he knows. 

March 2023

The Fifth School…

This is the fourth time I have been here and I feel safer with each visit. Will she? 

I turn around and look at her. She has two stuffies in her hands and she is making them dance in unison to the music emanating from the speakers. 

“Hey baby, we are going to meet someone today and check out this school. It’s going to be fun. I promise.”

Skepticism exudes from her. She stares at the enormous, salmon colored brick building located two minutes from our home. We could walk here when the weather turns. 

I unbuckle her car seat. She pulls at the straps and holds them tight to her chest and grunts. 

I’d give anything to take away her anxiety. I think I’ve been through it this year, but for a child reliant upon routine and consistency, she has handled all the circumstances thrown at her with as much tenacity and strength a child could muster. I am in awe of her.

“I know it’s new and scary, but I’ll be with you the entire time.”

She still won’t move. I begin to sing the Coco Melon song that usually breaks through her stubborn streaks. 

“Car, car, it’s time to get out of the car.”

She smiles and sings back, “Yes, yes, yes it’s time to get outta car.”

She hops out of her seat as I unfold the collapsible stool and help her foot find it. I hope she is this cooperative during the evaluation. 

I reach my hand out and with all the trust in the world, her fingers instantly become intertwined with mine. We walk up the two flights of concrete steps, hand in hand, together in unison, just as we’ve been this whole year, and I push the buzzer. 

April 2023

I see his number pop up on my Caller ID, but I am on the phone with the insurance company again, and I can’t hang up. Her first day is tomorrow. I am sure he just wants to go over the details again. 

I still cannot believe it is actually happening. They just agreed. I sat down, and explained what was going to be the best way to introduce her to a new school, that didn’t rip her entire world away from her in one fell swoop, and they said yes. Just like that. I don’t think I’ll believe it until it happens. 

My inner dialogue returns. Think positive. They have been flexible. 

After almost a year of dealing with red tape from every angle, I met a teacher and a school that actually heard me. I explained that transitions need to occur in small steps. 

I sat in the meeting prepared to advocate and defend my logic, a few weeks ago. 

“This is how Sienna operates, and I know how to set her up for success. This is the best way for her to get to know the school and all of you. I know having her come two half days a week is unusual, but someone mentioned dual enrollment t…”

“Mrs. Striner, I already told them all about the plan. We have all worked it out. Let me show you our schedule. We want you to choose which two days work best for Sienna and you. Now, I believe you said the therapists in her program are great, but did you want therapies or just academics? I know you said she’s missing math, so we will take care of that and….”

Am I dreaming? They are agreeing. I don’t have to go through my talking points.

“Well, what about an aide? As I mentioned, I can be here for lunch duty.”

“We have a PCA (Personal Care Aide) on staff. She’s wonderful. She will definitely be with her for 7th and 8th period. Sienna will be with me for learning support in 6th period. I can incorporate the materials you have been using and I’d like to share what I’ll work with her on. But we are hoping to have an aide the whole time she is here, so that you can get a break. Did you have a start date in mind?”

My eyes fill with tears as he continues. Someone is not only listening, but they are being flexible and doing what is best for Sienna. He will share materials with me. He will actually use the program and materials I have. I have to fight the urge not to hug him at this moment. 

Today is the day before her scheduled first day at her new school. After hanging up with the insurance company, I push my voicemail button. 

“Mrs. Striner, I just wanted you to know your lunch and volunteer clearances are all set. We will see you and Sienna tomorrow.”

This is really happening.  

The Next Day…

She is sitting in a chair in the school office, her hands wrapped tightly to her lunchbox handle, and her backpack is smooshed against her head. She looks anxious. I go to the signin book and ask the secretary which book to sign. She comes over to look, and at that moment, Sienna’s teacher walks in. I smile. 

The secretary looks at him quizzically and says, “How is this going to work? I don’t want her to be marked tardy every day. She is coming in starting with lunch every day, right?” 

I interject, “Just two days a week to start and she will be here for lunch, recess, 6th, 7th, and 8th period. We will be arriving at 12:30.”

She looks puzzled. “I don’t know how to administratively handle this.”

He laughs. “We are all figuring it out as we go. We have never done anything like this before.”

He then turns his full attention towards Sienna. “Hi Sienna! Are you ready for your first day of school here? First, we are going to meet your classmates and then you are going to eat lunch with them.”

He puts his hand out, and she looks up at him with suspicion, but she puts her hand in his, and I immediately feel an overwhelming sense of relief. 

He is showing her where her locker is and we put her things in it. We walk towards a door and he says, “This is your classroom and this is your kindergarten teacher.”

Eight months into kindergarten, and Sienna is finally getting the full day of kindergarten every child should be entitled to. 

On the second day, Sienna’s aide met us both at the front office. 

“Mrs. Striner, you can go. The district has arranged for me to be with Sienna from lunch until the end of the school day for the rest of the year. Go enjoy some free time.”

May 2023

I bet you are expecting me to wrap up this school year with a nice little bow, and tell you that we finally found the ideal situation, and Sienna is thriving. Unfortunately, this isn’t a movie and everything that Mom I mentioned in the beginning of the post said, has turned out to be true. There isn’t a perfect place for Sienna.

We are now three weeks into this new school experience. We have good days and bad. She is still attending private school in the mornings, five days a week. Two days a week, she spends her afternoons here at our neighborhood school. We still attend the lunch program at her old preschool once a week, and I do our learning sessions there. The other days are for therapies and errands.

Our days are still full of movement, but those two days a week have given me the stillness I have been searching for all year. In addition to juggling Sienna’s education, I lost my father and have been avoiding my grief. It still finds me in unexpected moments, no matter how much I move.

As for the perfect school I mentioned, we currently sit at #9 on the waitlist for a spot for first grade. 

I don’t know what the future holds for us next year, because I have learned not to place all my faith in one set of circumstances. I have also learned what is best for my family might not be best for yours.

I mentioned those judges earlier. As wonderful as community can be, there were times this year when I wanted to shut out the world. I shouldn’t have to explain the choices I make for my daughter so often. I think people want to see themself in you, and when you disappoint them by taking a path they wouldn’t, they don’t know how to handle it. I don’t regret one choice I made on Sienna’s behalf this year. She went to a wonderful school that had a loving community. She became a cheerleader and participated in competitions with her classmates. Her coaches didn’t doubt her abilities for one second. She went into school every day with a smile, and was always greeted with love and kindness. She had amazing therapists, loving teachers, and learned side by side with compassionate children. She learned how to pray, and sit still at church, and she memorized a ton of sight words. There were no failures this year.

But for me, there were academic expectations I had for Sienna. I set those expectations upfront with administrators and over time, I was dismissed so often that the trust was broken beyond repair. I don’t know if Sienna is going to be a straight A student, but I know she should be given a chance and that education can be collaborative. It doesn’t mean we weren’t in a good setting. It just wasn’t the right one, and I might change my mind about that someday and that’s okay too. And maybe for your family, a Catholic education is the most important thing. We all use different measuring sticks, and even if our kids share a diagnosis, at the end of the day they are individuals with different strengths and challenges. We all need to have grace for the people around us. This parenthood gig is hard enough.

If you would have asked me a year ago if I had any ableist tendencies, I would have been outraged. This year has humbled me. I work daily on recognizing my ableism. I just spoke about her academic standards, and you might think I have those high expectations so that she can be valued in society, but that isn’t true. Sienna has to live in this world. Would I love for her to be fully included in every class, have her curriculum adapted to meet her wherever she is, and for her be seen as an important part of her classroom? Of course. Is the system set up to do that for her? No, it’s not. The world isn’t either.

Reading is an important part of the human experience. As I have watched her learn letter sounds, phonograms, and sight words, her language has evolved. It’s all connected and important to her development. She is still essentially nonverbal, and giving her the tools to share her feelings with us is the biggest priority for our family. As challenging as it was to teach her, watching the dots connect in front of me has been meaningful in ways I can’t describe. She lets her guard down with me and allows herself to make mistakes without anxiety. I can see why some families end up home schooling their kids.

My biggest takeaway this year is to never fully commit to one way of thinking. This blog has been an outlet for me to process my feelings. In the beginning of our journey, I learned that in order to survive I couldn’t look too far into the future. In some ways, I still use that coping mechanism. But whether I was ready or not, Sienna became school aged, and the bubble we had been living in popped quickly.

Sienna has grown into a little girl that is intuitive and as she has matured, she has begun to recognize that her experience is different than her peers. Her emotions are nuanced and layered, and because she can’t always verbally express what she is feeling, people constantly underestimate her. I have watched her confidence waiver and her anxiety grow. As her mom, it’s been heartbreaking watching her realize right alongside me that the world isn’t set up to accommodate her challenges. I will still choose to believe that we can change this world so that mothers coming behind me don’t have to fight so hard for a literal seat at the table for their child.

I know I shared so many challenges and circumstances that did quite literally break me this year, as evidenced by the crying selfies. Sometimes being broken forces you to pick up the pieces and rebuild a different version of yourself. The new version of me has learned so much about how to teach Sienna. I have found resources that will help us guide her to become the strongest version of herself. Some people go through life stagnant, never evolving, and thinking they know it all. We feel blessed that we have Sienna in our lives, because even though we will continue to break, we will always become better. Not many people have a gift like that in their lives.

And as for that girl I was before motherhood, she had a lot to learn. Good riddance.

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