Coral’s diagnosis is a tragedy.  My daughter cannot be disabled. What will her life be like?  What will our lives be like?  How will she live if she can’t talk or walk? It seems like it will be very hard for her life to be joyful.  All of the doctors were sad when they delivered the diagnosis. Disability is sad. I usually feel badly for people I see who are disabled. None of the parenting books talk about this side of parenting. The pictures of happy moms with their babies don’t show disabled babies. This is not how it’s “supposed” to be. 

That’s a little bit of the story that ran through my head after I received Coral’s diagnosis of Dup15q at 3 weeks old.  The story went on and on, as I repeated parts and added new thoughts, worries and fears. The story also held different stories—one about disability and another about parenting a disabled child. It’s hard for me to recognize that story now, but it was the story I told myself (through many tears and an incredible number of emotions) at the time.  

In the beginning, it seemed like society’s story about disability came at me from every direction—medical professionals, other parents of disabled kids, teachers, community members, friends and family, and myself.  Everyone wanted to try to “fix” the situation, to reassure me with more stories.  Many stories went like this: “My cousin’s friend’s daughter had a lot of delays. They didn’t think she’d walk or talk. She does both now and is doing great.” The consistent message appeared to say that things will be okay because Coral will develop skills. It wasn’t that things will be okay because Coral is Coral, regardless of the skills or level of independence she achieves. The focus on the prior message (rather than the latter) often left me apprehensive in conversations. I wanted to ask: And if she doesn’t do those things, what then? Will things not be okay? Will her life be less valuable?

Eventually Coral came home from the NICU, and we started to live our life as a family.  It didn’t take long for me to start to question many parts of the story I told myself about disability and parenting a disabled child. As I’d look at Coral smiling, giggling or playing in her own way, I started to feel like the story wasn’t all adding up. These days I see how each of her sensory regulating movements—jumping, shaking her head back and forth, spinning—have deep purpose for her.  In the swimming pool she embodies pure content, as her body moves naturally in the water.  She truly is My Coral Fish. When she plays with her music toys and hums her favorite songs with perfect pitch, her joy radiates. At school drop off I love watching each of her classmates show up as themselves—jumping, running (some towards and others away from the school gates), clapping or using an adaptive stroller. One by one these experiences have become part of my lived experience of being Coral’s mom.

My lived experience is separate from Coral’s lived experience of being disabled. That is an experience I do not know, but by watching Coral and listening to Coral I can get a glimpse into her world. I can also learn more about disability by listening to and spending time with other disabled people.  Doing these things helps me to adjust my perspective and to check the story I tell myself about disability.

Before Coral was born, I lived a life with non-disabled friends and family. Growing up, I did not interact with many disabled kids.  They weren’t in my school classes, my church classes or on my sports’ teams. As an adult, I watched from afar as parents dropped their kids off for the special education class, and I made huge assumptions about what it must mean to have a disabled child.

And that’s when it started to sink in. Society’s story about disability and parenting a disabled child is not based on lived experience.  It is a story, created by non-disabled people, with a collection of outside perceptions that creates a stubborn and harmful bias.

Of course, my lived experience of being Coral’s mom includes other moments too—epilepsy, medical tests, sensory meltdowns, IEP meetings, paperwork (so much paperwork), adjusting family plans when events and locations are not accessible to Coral, watching Coral with a consistently high level of vigilance to keep her safe and so many other things.  However, I now see that the whole of my parenting experience (like life) is one of suffering and joy. The two can’t be separated. 

These lived experiences help me generate space around the original story I told myself about parenting a disabled child (and all its accompanying feelings of grief, anger, constant comparison to “neurotypical” and resentment). With space, I can look deeply at my bias—its source, its underlying story and how it manifests in my life.

Seeing my own bias is an ongoing, day to day process that will last my entire lifetime.  In the past I have reacted to my own bias by reprimanding myself: How can you think THAT?  Now, I take a gentler approach where I name the bias while recognizing that I am not the bias itself, though it is a thought I need to pay attention to.

I now recognize my bias in several of the fears I have around Coral’s life (and my own as her mother).  As I sat in the NICU with Coral after her diagnosis (with the story in my head running wild), I wondered whether Coral would be better off with a different family.  I questioned my ability to provide her with everything I thought she might need, given my beliefs about disability at the time.

Bias is also present in my motivation behind certain actions. Almost immediately after I received Coral’s diagnosis, I jumped into action—researching best strategies to help Coral and setting up as much therapy as possible. At therapy, goals were set. In the early years, as much as I wanted Coral to achieve certain things for her own independence and development, I now recognize that I also desperately wanted her to achieve milestones so she would more closely resemble the expectation I had for Coral from pregnancy (a non-disabled child).

Bias presents itself in my assumptions about what Coral may or may not understand. In the first years of Coral’s life, I partook in many conversations in front of Coral under the (wrong) presumption that just because she could not say the words being spoken in front of her that she could also not understand what was being said.

Additionally, bias appears in my expectations on outings and at events. At the Safari Park, Coral enjoys walking back and forth, while rubbing her hand on the hand railing.  She rarely looks directly at the animals (like I might expect her to using my neurotypical expectations as a frame). In the past, my thoughts might say: I’m not sure why I bring her here. She doesn’t even pay attention to the animals anyways.

I also recognize bias in my language when speaking about disability. I used to use terms like special needs and now choose to better align with the preferred language of the disability community (as I talk about in Yes, I Call my Child Disabled).  

The more closely I look and the more time I take to sit quietly with my thoughts, the more clearly I can see my bias.  I realize that when bias is present I am often not presuming competence but am instead making large, generalized assumptions about what Coral does or does not understand based on whether or not she demonstrates that understanding to me in the way I expect.

Engaging in this daily practice of looking deeply at my thoughts and my bias has transformed the way I parent Coral (and all my kids). It helps me identify bias in others, not in a judgmental way, but rather in a way that gives me the space I need to be free from those same thoughts—ones that don’t align with my lived experience about being Coral’s mom.  I am better at not carrying other people’s discomfort related to disability.

I feel that this has also helped me to give Coral more space to be who she is, free from a constant background pressure to continue to check off goals and meet milestones. I now see the value and importance in prioritizing play, recreation time and the development of her friendships.  

If I continue to feed the story society tells about disability and live without trying to recognize my own bias, I will be adding to the heavy weight of the collective bias that already sits upon Coral’s shoulders. Everything I may feel that I’m doing to help Coral live her best life (therapy to help Coral achieve more independence, medical choices for a better quality of life) will be in the shadow of what society believes about Coral and the extent to which their bias allows her to access her authentic life.  Additionally, my own bias will creep into every decision I make for Coral, creating a self-fed circle where I will be unconsciously limiting her opportunities in life. 

Once Coral left the hospital, I went into a “do” mode.  I felt like the more I did—arranging therapies, medical appointments and services—the better things would be for Coral. While things like therapy have certainly played an important role in Coral’s life, I now see my perspective taking a big shift from doing to being. 

By spending more time in stillness through meditation and prayer, with less doing, I can be so many more things. Be more present. Be more mindful. Be more compassionate. Be more patient. Be more grateful. Be more full of faith.

I can be more aware of the stories I tell myself and the bias inherent in those stories. And that’s who I want to be, not only as a mother but as a human being, too.

Tate was just over two years old when Coral was born. As he made friends at preschool, play dates were planned. I’d load Tate and Coral into the car and we’d go meet his new friends at the park. It always seemed like Tate’s friends had younger sisters similar in age to Coral.

As the play date began and the kids (including the siblings) ran off to the playground to play, Coral remained with me. This moment often felt uncomfortable and awkward, as the other parents realized Coral was not able to run off independently with the other kids.  To address the situation quickly, I’d usually say something like, “Coral’s not walking yet because she has a rare chromosomal duplication. She has special needs.” 

I used the term “special needs” at the time because that’s what I knew. I thought that was the best way to say it—softer, less direct, kinder, and more thoughtful. I thought using the term “special needs” gave Coral space to be separate from her disability.

Now I see that “special needs” is an inaccurate term.  It conveys the sense that what Coral needs to live is different from what other kids need. This is untrue. Her needs have never been special; she needs to eat, to play, to be safe and to communicate (among many other things). The only difference is in what she requires to access those needs in the world.

Using the term “special needs” also ignores the disability itself, seemingly to separate the person from the disability. This runs counter to the entire disability rights movement. 

Additionally, the term “special needs” is becoming a dysphemism (substituting an unpleasant or harsh term for a more neutral one).  One day I was waiting to check-in at Tate’s school to volunteer at his STEAM day. A group of three people was ahead of me in line. One of the ladies signed on the wrong line and started to laugh while saying, “I guess I’m handicapped.” Everyone laughed (including the school staff). Then she said, “I’m special,” sarcastically emphasizing the word special. More laughter from everyone.

Over the past 6 years of this parenting journey, I have started to identify my own ableism; these are the perceptions and stereotypes that I believe to be true about disabled people. Some of these perceptions are so deeply embedded in my subconscious, it has taken years to even recognize them. I call them my onion skin layers. I’m always pulling them off, sometimes one by one and other times a few at a time. As the layers come off, I more clearly see the intersection between Coral, disability, parenting and my own ableism. It’s humbling. It’s embarrassing at times to realize what I believed and felt about disability. It’s all part of the journey.

Along this journey, I finally got to a place where I heard (and listened to) the voices of autistic self-advocates and others within the disability community.  When I realized their language preferences (one of those being to use the word disabled), I began to align my words with their preferences. 

In the process of better aligning with the preferred language of the disability community, I began to align in other ways, too. Today I look more closely at the therapies we choose for Coral, the goals of those different therapies and the amount of time she spends in therapy versus recreational activities. I also question how much society asks Coral to bend towards its expectations without ever reciprocating the effort. I presume competence and more frequently catch myself when I don’t.

Though Coral is young right now and it could be easy to ignore the disability community in exchange for only doing what “I think is best for her”, I know she will not be young forever. One day (before I know it) she will be a disabled adult. As Coral grows bigger (and is no longer “a cute kid”), I want society to address its ableism. I hope society chooses to accommodate her needs and to give her access to what she needs to live her life. 

The disability community is actively working to remove barriers to access for disabled individuals.  I choose to be an ally to this community, Coral’s community. 

To be an ally, I have to listen. The consequences of not listening are far too great, both now and in the future.

Society likes to paint disability in neat cliches framed within the disguise of ableism. 

I’m not the “super hero mom” pushing through the “burden of having a disabled daughter.”

I’m not the “special parent God chose for a special child.”

Coral does not “suffer from autism.” 

She is not “an inspiration” for living her life each day, and she does not “overcome her disability” when she achieves something. 

Coral’s disability is woven into her identity.  Every aspect of how she experiences the world is related to her disability. There never was a non-disabled Coral. From conception, Coral had 47 chromosomes. She has always been exactly who she is. 

When I say Coral is disabled, I am affirming her right to be exactly as she is. I am listening to autistic self-advocates and other disabled individuals. I am recognizing that I grew up as part of the non-disabled culture and that (even though my daughter is disabled) I do not personally know disability culture. To learn about it, I must listen.

As I listen and learn more, I will keep peeling my onion skin layers away. 

And I’ll continue to call my daughter disabled.

But don’t take my word for it. It’s better if you just listen to the disability community. And here’s a few people to get you started.

Jordyn Zimmerman: nonspeaking autistic self-advocate, featured in the documentary “This Is Not About Me”  https://thisisnotaboutme.film/

Niko Boskovic: autistic blogger from Portland, Oregon. He identifies as low speaking and uses assistive technology to communicate. 

“Having a disability is something that seems to invite people’s unsolicited comments and opinions, and if there’s one thing non-disabled people can do, it is to defer to disabled voices first, and then wrap the experiences of parents and professionals throughout that narrative.” – Niko Boskovic

https://www.facebook.com/nikoboskovicPDX

Samuel Habib– Directs and is featured in My Disability Roadmap, disability advocate

https://likerightnowfilms.com/productions/details/3356/My-Disability-Roadmap

Autistic Self Advocacy Network    https://autisticadvocacy.org/

This is the third part in a series of posts I’m writing leading up to Rare Disease Day on February 28th. Read Part One: Sensory Processing

Read Part Two: Communication

Thanks for following along!

While nursing Coral one day when she was 8 months old, I saw her body slightly stiffen and her eyes roll up and to the side.  My stomach dropped and my heart raced.  I was concerned.  Over the course of the next few days I saw these actions more frequently, including when she was sitting up.  In those situations, her head would drop for just a moment, before she would lift it back up.  

These movements were so slight, that it would have been easy to dismiss them.  It is only because I received Coral’s diagnosis of dup15q at 3 weeks old and knew to be on the lookout for infantile spasms (a rare epilepsy that manifests in part as what I described above), that I was able to take swift action.  Infantile spasms are an emergency.  They can be a devastating type of epilepsy to an infant’s brain.  For kids with dup15q, the emergence of infantile spasms is often what leads to their subsequent dup15q diagnosis.  For Coral, we had her dup15q diagnosis at such a young age, that we could act quickly to address her spasms (in a way having a head start).

A few months before Coral developed infantile spasms, I began researching epilepsy in dup15q and infantile spasms. Being the information gatherer I am, I wanted to know about the potential treatments and have an idea of what we might want to do. Typically, the treatment for IS is high dose steroids, which can be highly effective for some kids but obviously has a heavy side effect profile.

While the treatment Tom and I decided on for Coral was unconventional (CBD oil), it actually worked miraculously.  Infantile spasms often cluster in groups. Coral went from having over a hundred spasms a day to none after a few days of taking CBD oil.  It was truly a miracle that even her neurologists (who did not recommend this treatment approach) had to recognize as a shocking but incredible outcome.

I don’t share this to advocate for everyone to do the same as we did.  In fact, I share this to highlight some important aspects of epilepsy in dup15q.  Epilepsy pharmacological treatments that work for one child or adult with dup15q, may not work at all for another. The side effects of pharmaceuticals can also differ from person to person. While this can leave parents and caregivers in a bit of a quandary of what treatment to try, it is also a huge reason why the Dup15q Alliance is working tirelessly to support research and the formation of targeted treatments for dup15q. Simply put, those with dup15q need more options when it comes to how they can control epilepsy. For some, their seizures are still uncontrolled, despite trying countless different meds and other treatments. For others, the side effects of the meds are worse than the seizures themselves.

Over half of the people diagnosed with dup15q will have at least one seizure. Many will have far more. As a parent, there is no way to know how your child will be affected by epilepsy with dup15q. A child who has had no seizures can begin to have several seizures at any age, especially during puberty. Skills can be lost (walking, talking, eating and many others). And too many of our kids, young adults and adults lose their lives to SUDEP (sudden unexpected death of an epileptic person)— usually a large seizure at night. This can happen even in a child who doesn’t seem to be having many seizures.

Epilepsy in dup15q is the worst type of wild card. It brings terrible uncertainty and worry.

As one of the lead neurologists once told me in words I have paraphrased: Epilepsy is one of the million dollar questions in dup15q. Why do some kids have worse seizures than others, and why do some kids have no seizures at all?

We need to continue the drive for research and therapeutics focused on the unique genetic mechanisms behind epilepsy in dup15q.

Last week Coral was in the hospital for an EEG (a way to measure brainwaves and detect potential abnormalities). She had not had an EEG for over two years, and we wanted to make sure we weren’t missing any seizure activity. In the hospital I was surprised by the many emotions I felt—emotions from her early days in the NICU, the feelings of watching her have so many infantile spasms, and the weight of the unknown and variable outcomes of epilepsy in dup15q.  

It all can be extremely heavy for parents, caregivers and families (including siblings). After this last hospital stay, I found my center the way I have for the past 5 years. I tried to focus on the present— be grateful she is currently not having any seizures, hold onto faith and release any fear I have for her future.

The reality is that it’s not “if” she will have any more seizures but more realistically “when” seizures might return. How severe will they be? Will we find a treatment as quickly as we did last time?

No one knows the answers to these questions, but supporting the Dup15q Alliance in their efforts can make a real difference for Coral, other people with dup15q and the families that love them.

As Rare Disease Day quickly approaches, please consider supporting the Dup15q Alliance. Thank you!

(This is the second part of a series of posts leading up to Rare Disease Day on February 28th. I am covering different topics related to Coral and dup15q. Read part one here: Sensory Processing. Thanks for following along!)

On a recent Monday morning I walk into Coral’s room with her AAC device to get her out of bed for the day.  An AAC device is one way she communicates. It is a tablet with a program (Proloquo 2 Go is the one Coral uses) that has been individually programmed for her. She pushes a button (with words and a picture), and the device says the word/phrase. There are enough words for her to talk about any and (almost) everything one day, even in complete sentences if she chooses. 

I show her the device as I navigate into the “Chat” folder.  I say, “Good morning,” as I push the button “Good morning.”

I then say, “I love you,” using just my words. 

Before I can even use her device to say those same words, Coral quickly navigates into a folder and immediately tells me, “I love you.”

I pause and look again at her device screen to make sure I heard her correctly. At the top (where the words show up) is “I love you.”

I quickly respond (while hovering in a moment of pure bliss), “I love you, too, Coral.” 

The day Coral was diagnosed with dup15q at three weeks old when she was in the NICU, I returned to my room at the Ronald McDonald House and collapsed in tears. I was given some scientific research articles (all with medicalized viewpoints about dup15q). I recaIl reading in those articles about many kids being nonverbal. In that moment, having a nonverbal child felt like a true tragedy. The end of the world. How can my child live a meaningful life if she can’t speak with words? 

Fast forward 5.5 years and my views have changed completely. Coral communicates with us everyday in her own way. I now understand that she is not nonverbal (without words) but rather she is nonspoken.  Receptively, Coral understands so many things we say. She probably understands even more than we realize. She is a true multimodal communicator. She takes our hand to take us to the things she wants. She brings us her toys for help. She uses the sign “more.” She has spoken some words at different times—jump, more, good, purple, orange, green. But her primary form of communication is her AAC device.

With her device, Coral has access to communicate her wants and needs. Like any language learner, she is learning how to speak this way one day at a time.

She also has access to just babble on her AAC device—a way to finally say all of the words that she knows but that are very challenging for her to speak with words. This has been awesome to watch. Everyday she navigates through different folders to find her favorite words to say, “Surprise, surprise, sleepover, sleepover, sleepover, school holiday, school holiday.”  

I talk to her (using my words and her device) as she babbles. “You and Tate did have a sleepover last night. It’s not a school holiday today Coral.” (Coral actually loves school.)

She continues on, navigating into vehicles (another favorite topic of hers to talk about). She says, “Firetruck, firetruck, firetruck.”

“You do like firetrucks,” I comment. 

When I sit back and watch Coral navigate through the words, I see how she has learned where they are through location and repetition. The location never changes. Her drink button will always be in the food folder and then right center. Many of her favorite and most used words she can navigate to without looking because she knows the location.

She is incredible. She is smart. She is a determined, persistent communicator who enjoys learning the language of her AAC device. 

How far from the truth I was years ago (and how deeply flawed were my perceptions, stereotypes and expectations) when I lay there crying, thinking and questioning: If she can’t speak, she must not understand anything. If she doesn’t understand anything, how will we form a relationship with her and how will she be able do anything in her life? 

Now I always presume competence. It can’t be only on Coral to demonstrate (in the terms acceptable to the non-disabled world) what she knows or what she needs.  It’s on me (and the rest of society) to bend towards Coral—to step outside our comfortable and familiar forms of communication. We need to meet her where she’s at, to honor and respect her way of communicating by communicating WITH her on her AAC device. We need to be more present in the moment in order to identify her subtle (and not so subtle) signs of communication. 

Giving Coral access to communicate opens one door to help her to more fully participate in life—to live her authentic life. 

The other morning Tate and I went into her room. 

We both said, “Good morning,” in our words and on her device.

Coral then purposefully and clearly told us, “No.”

Tate’s eyes got huge and he broke into a small chuckle and smile, surprised by her decisive response to our morning greetings.

 I told her, “I’m sorry you aren’t having a good morning. I hope your day gets better.”

With 100 percent certainty Coral can and does communicate. All the time. And we will hear her, if we are open to truly listening.

Topic 1: Sensory Processing

(This is the first part of a series of posts leading up to Rare Disease Day on February 28^th.  I will cover different topics related to Coral and dup15q.  Thanks for following along!)

Coral needs to move everyday in certain ways. Meeting her sensory needs is as pivotal to her life as breathing is to all of us. It’s essential.  

Throughout the day, I watch Coral lean backwards in almost a complete back bend, move into down dog (seemingly resting her whole body weight just on her head), shake her head back and forth while looking upwards and turning in circles, crash into objects, lick things, put things in her mouth, or jump up and down.

Sometimes I do have to step in for Coral’s safety (at times her sensory needs appear to supersede safety awareness). But other times I just watch her move around in her own way.

Before Coral, I may have thought it was “strange” or “weird” to see a child or adult move in such large and unique ways, but now I see these movements as a part of Coral.  She seems to experience the sensory world in a very unique way.  These movements also tell us about what she may need in a day— more vestibular activities (swinging, spinning, sliding, jumping) or more opportunities for touch (playing with beans or rice).

Sensory processing differences are often a characteristic of autism and dup15q. People can be under sensitive and/or over sensitive to different sensory stimulus. This manifests in different ways, depending on the person.

For Coral, she often seeks certain sensory input related to movement, balance (her vestibular system), touch (deep squeezes), sound (musical tunes) and moving objects (she holds items very close to her eye to watch them spin).  She can hum a new tune with better pitch than I could ever dream. 

At the same time, other sensory input can be completely overwhelming and lead to a meltdown— the sound of a spoon against a glass bowl, crowded locations with a lot of noise (not musical), haircuts, cutting her fingernails, brushing her teeth, sometimes the sound of the bathtub filling with water, sudden laughter, or her little brother’s cries. The amount of overwhelm these (and other sensory stimulus) create can vary from day to day. Also, the cause of her sensory meltdowns can and do change.

Coral’s sensory experience is different from mine. As such, I have found it helpful to listen to autistic people explain their experiences during a sensory meltdown. (See the link in the bio to a great article where autistics share their experiences.)

Learning more about sensory processing differences allows me to view Coral’s neurodiversity with more empathy.  It helps me to better understand what she may need to fully access the world around her.

It also helps me to remember Kim Barthel’s (an occupational therapist’s) words, “Put my mind in the mind of the person in front of me.”

It’s not Coral.  The problem is in the world’s rigid, narrow expectations for how Coral should move, think and speak, and the barriers to access that result from such rigidity.

It’s long past time for the world to become a more flexible and accessible place for Coral and the neurodiverse population.

I walked into our dining room to feed Cruz, while keeping an eye on Coral and Tate playing together in the living room. They were wrestling around. Tate threw a big blanket over Coral and then helped her get it off, at which point he wrestled her to the ground. She was smiling and giggling.

I gave Tate a quick reminder, “Remember Tate to read her signs. Is she smiling? Does she seem like she wants to keep playing? She won’t use words to tell you to stop, so you need to pay attention.”

Between breaths Tate replied, “I know Mom. I’m teaching her how to escape a kidnapper. This is important.”

I continued to feed Cruz, as they played together. Then I heard Tate ask Coral, “Why can’t you be like a real human and cry?”

I quickly peered over into the room. “Tate, what do you mean by a real human?”

“I just mean that real humans would be crying by now I think, but she isn’t,” he answered.

“Who are real humans?” I asked.

He paused, seeming to not have the words.

I continued, “Because Coral is as much a human as anyone else.”

“Oh yeah, Mom. I know she is a human. I just meant,” he paused seeming to search for the words. Then they came to him, “I meant someone without Dup15q.”

“Okay, so you can say a non-disabled person,” I said.

“A person without disabilities,” he said.

“Yes, you could say it that way, too. You want to make sure you think about the words you use. Do you see how Coral would feel badly if she thought you were saying she wasn’t a real human?”

“Yeah Mom, but that’s not what I meant. I know she’s not like a robot. I meant a person without disabilities.”

“Okay. Remember, your words matter,” I left off.

Tate returned to his important play—teaching Coral how to evade a kidnapper. I decided to save the talk on Coral’s high pain tolerance and her different sensory needs (why she loved the wrestling and wasn’t getting upset or crying, as Tate thought she might) for later that day. 

This interaction with Tate reminded me of two important things.

First, when we talk about disabilities and disabled people, the words we use really do matter. For a while now I have stopped using the phrase “special needs,” as I learned that many disabled people find it offensive. Avoiding the word disabled (and replacing it with ‘special needs’) stigmatizes the word disabled. For people with disabilities, disability is a part of everything they do, every part of life. Saying the word disabled also acknowledges the long road disabled activists walked (and continue to walk) to gain certain civil rights. It is acknowledging a culture and a community.

Over time I have also become aware of person-first (child with autism) versus identity-first (autistic child) language. There are many autistics who prefer identity-first language. When in doubt, it’s okay (and good!) to ask a disabled individual their preference. 

Learning about the words disabled communities prefer and then using those words is paramount to respecting and embracing this community.

Second, it reminded me that our society continues to be soaked in subconscious stereotypes of disabled people. The able-normative view of disability tells us (all the time) to various extents that being disabled is something to be changed or fixed and is a burden on society; it equates to a less valuable life.  

The supercrip narrative reinforces this by applauding a person for “overcoming their disability” for the purpose of inspiring able bodied community members.

When I look around at the opportunities (or lack thereof) for disabled adults, I am saddened. Adults with intellectual disabilities are especially funneled into the “four F’s” jobs—food, filth, flowers and factories— regardless of whether they are interested in any of these jobs. As a society we seem to struggle with starting from a disabled person’s strengths and helping them grow and find purposeful, meaningful work in their areas of interest; work that capitalizes on the unique set of strengths they bring to the table. (Learn more at meriahnichols.com).

Within our house, Coral’s disabilities are embraced. Coral is free to live her authentic life—being loved and respected for exactly who she is. She has access to her favorite activities and toys, and we try hard to help her communicate her wants and needs. We try our best to meet her diverse sensory needs and to recognize that her actions may be different because of her needs (not that her actions should change merely to meet our expectations).  Tate sees all of this in our home. He also interacts with Coral in a very “typical” big brother way, a rhythmic combination of play and antagonization.

But when he steps outside of our home, he sees a very different world. Tate is soaking up this world, too. It’s a world where he doesn’t see any disabled kids like Coral at his school—kids with multiple disabilities or non-spoken autistic kids. 

It’s a world where people don’t take the time to (or don’t care to) understand what Coral needs to access the world around her.

It’s a world where we have to extensively plan to take family outings because we know that the event, party, or place will probably not be set-up to support, respect and accommodate Coral’s disabilities.

It’s a world that disables Coral, through its expectations, its fast pace, its inflexible nature and its ableistic views. 

Little by little, Tate is seeing all of this, whether he has the words to express what he sees or not, and he’s soaking it all in. 

By listening to the disabled community’s experience, we are able to give him the words he can use and to explain to him that, “No, it doesn’t have to be like this. It shouldn’t be like this.” Otherwise, he is left with “real humans” and “not real humans.”

A few months ago, when I was driving Tate to school, he said, “Mom, sometimes I wish Coral didn’t have Dup15q because then she could go to my school.”

I replied, “It would be nice if she could go to your school, Tate.”

Tate then quickly said, “But I don’t really want her to not have Dup15q. That’s her special thing that makes her Coral.”

He paused, “But maybe just not for a day, so she could come to my school. Because that would be fun.”

“Well, maybe one day Coral can go to your same school, even with Dup15q,” I answered.

Maybe, one day. One day. 

The week before school began I received an email from the principal of Coral’s new school, where she recently started transitional kindergarten (TK).  The email contained general information about school procedures for kindergarten and TK.  It also listed each grade’s teachers.  I noticed that Coral’s special education teacher was not included in the list under TK or kindergarten, only the general education teachers were listed.  I continued to review the rest of the slide show, perplexed and saddened by this exclusion.

I wondered: Why wasn’t Coral’s teacher included alongside the general education teachers?   Is Coral not really considered a TK student, but rather a child in a separate class who happens to be on the same campus as the actual TK students? How in the year 2021 is this still happening? 

The truth is that Coral is a TK student, like all the other TK students at the school. She needs additional services and a unique classroom placement to access her education.  Her teacher should have been on the list.  By not including Coral’s class, parents and students do not know that there is another class with TK students.  In a way, she is forgotten on the campus.  In a way, she is in fact viewed as “separate and different,” not a student like all the other students on the campus.   

It certainly was not the principal’s intention to exclude.  In my experience, 99% of interactions that result in exclusion are not created by malicious intent.  Rather, they are born from a lack of understanding, subconscious stereotypes of disabled people, personal discomfort around disability, an inability to empathize, and/or a lack of perspective/experience with disabled people.    

It may seem small to some—a forgotten name on a list of teachers.  But it is actually representative of much more—for Coral, for our family, for other kids at the school and for the community as a whole.

These things matter.

I did express my concern of exclusion to the principal, who kindly and thoughtfully apologized for her oversight and promised to be more inclusive in future communication.  I debated advocating for Coral’s right to inclusion in this circumstance. In the end, I am glad I did.  

These things matter.

In the days before the pandemic seemingly closed the world, we were at Legoland.  Coral was seated on her favorite ride (the swinging pirate ship) with Tom and Tate, patiently waiting for the ride to start.  She started to fuss a little, as the waiting continued.  The ride attendant approached Coral and Tom and asked, “Is she okay?” Tom explained that she was fine, just waiting for the ride to start.

She was not being unruly or acting dangerously. Lightly fussing was her way of expressing impatience with the wait, given that she didn’t have words to express impatience.

The ride attendant then told him, “I need HER to tell me that she is okay.”

Taken aback, Tom replied, “She’s nonverbal. She can’t tell you that. But I’m telling you that she is fine. She loves this ride.”

The attendant did not back down, “Unless SHE can tell me that she’s okay, she will have to exit the ride.”

Shocked, Tom told her once again, “She can’t talk. She can’t tell you that. She has autism. But she’s fine.”

In the end, Coral was forced to exit the ride prior to it beginning. 

Needless to say, we were very upset about Coral being denied access to her favorite ride because she couldn’t speak. 

The ride attendant was young.  She clearly lacked training in how to recognize and assist neurodiverse riders, a training she should have received by the company—one that should be rooted in a policy of respect and empathy for all patrons.

These things matter.

This summer I brought Coral into a small birthday party to pick up Tate.  She was in a stroller, happily being Coral– shaking her head back and forth, humming, staring off at different light sources.  I greeted the parents and kids and called for Tate to get ready to leave.  While waiting, no one (not one child or adult) greeted Coral, despite us standing right in the middle of the party and regardless of our greetings.

Everyone acted as if she wasn’t even there.  It was so strange.  And so sad. 

Over these past five years it has become very clear that some people (more than others) are uncomfortable around disability.  Others think that since Coral appears to be paying no attention to them, it doesn’t matter if they greet her. 

It does matter. A lot. 

At times I wonder if Coral is aware of the exclusion she is experiencing.  While there are circumstances where I believe she doesn’t really know what has happened, I do know that she can sense the difference between an environment that is full of love, acceptance and inclusion versus one that is comprised of fear, rejection and exclusion. 

These things matter.

There have been countless conversations with friends, therapists, community members and others where the worth, value and life of Coral and others with disabilities has been called into question by casual comments.  Sometimes it’s not a comment but a look or a stare, where pity grips their face (maybe for even a moment), but long enough for it to register.  

All these things matter.

In sharing, my intention is not to make people feel badly.  Even as a mother of a disabled child, I check myself daily—my thoughts, my beliefs, my expectations and my stereotypes.  I don’t always know what to say or how to act when I meet other disabled children or adults.  For me, it may be a little easier in those moments because I now follow one simple rule.  I am mindful of my thoughts and feelings in order to be mindful of my words and actions.  I try to be present the way I would want others to be with Coral.  

Respectfully.  Empathetically.  Equally.   

We all (myself included) play a role in the forward progress (or not) of equal and equitable rights for disabled people, including the inclusion of all people, no matter their abilities.

Of course, the larger events (new laws, educational reforms, etc) play a critical role in all of this. However, I believe the foundation for change is created in the daily interactions between people. 

Smiles. Greetings. Mindful interactions.

As a society, we can do better. We need to do better.

Because these things matter.

Four and a half years ago you came into this world. Two pushes and there you were, under water—a water birth beauty. Eight minutes after our midwife arrived to our home. But not a second too late or too early. You came in your time.

I brought you onto my lap, as I sat with my knees bent up. I looked at you, and the name came to me—my Buddha baby, all cheeks. In that moment, you looked nothing like Tate. That shouldn’t have mattered. I mean it didn’t matter, but I still thought that. Comparisons always try to steal moments away. 

I held you. We all did. Your grandparents met you in those precious after-birth moments. I gently made my way from birth tub to bed, riding an oxytocin high like no other. You fell asleep across my lap, just in time for your big brother of two years old to wake from his nap and come into our room. Oh, he was so proud. “Baby Curl” had finally arrived, while he slept soundly. He sat next to us, staring at you, finally a big brother.

It was all so…perfect. 

But perfect is a heavy word. An impossible goal. An unfair label. Perfect is meant to bring comfort and calm to a moment, but it is actually a Trojan Horse— a neatly wrapped package of anxieties and expectations, ready to explode or implode at the first sign of the unexpected. 

And so we began our perfect with you, Coral. Two days at home. It seemed like a dream. And then on the third, lying next to me, I found you blue and not breathing. My heartbeat racing. Panic and fear ensuing. 911, help in route. 

Your breath did return to you. Blue face returned to pink. But your breath was a sneaky shape shifter, stopping and returning (only with help from the nurses) too many times for me to count. Too many times for my heart to handle. My perfect seemed so far away. You seemed so far away. Three weeks in the NICU, and then an answer.

Dup15q.

Oh, Coral. Those words. The website. The video. I wanted to die. Literally and figuratively. 

As I lie on the bed at the Ronald McDonald House, my heart just exploded with grief—pouring out through rivers of tears. A lifetime of subconscious stereotypes of those with disabilities, a pregnancy full of expectations for your life (for our life, for MY life), and a shattered parenting ego, all collided at once. BOOM. CRASH. A perceived death of my perfect.

And that’s all that rang in my head in those first few hours, days and weeks.  These days I wish I could go back to tell myself what I know now, but hindsight isn’t meant for the present moment.

I’m so sorry, Coral, that I didn’t see YOU then—a parenting blunder to have missed your unique wonder. Comparison, the sneaky snake, just did not want to let go. 

But now, 4 and a half years into your life, I can’t imagine life without you. I don’t mean that in a “my heart would break without you” sort of way. Of course it would. But I mean that in a far different, more literal way. Your life source, your being, your soul has created a life I never could have imagined. A life I never dared to imagine. You have pulled me so far from my perfect and plopped me down in the life you carve out each day for yourself. 

Your mannerisms. Your preferences. Your musical tunes. Your vocalizations. Your giggles.

They are all truly uniquely, you.

You always have to carry something around, usually two things, one in each hand. Maybe it’s a toy car and a bracelet or a string and a small musical toy. Your “special treasures.”

Sometimes you choose to carry the largest and loudest musical toy around, swinging it as you walk.  It (unintentionally) bangs into obstacles along your path. You have a fierce determination when faced with true motivation. 

Orange. Anything and everything that is the color orange gets your first and undivided attention. 

Sitting in a chair you reach for your brother’s hand and pull it towards your neck. “Tickle me!”  Head back, eyes closed. Belly laughs. Squeals. And again you reach for his hand. “More!”

Tiger teeth. This is the name we’ve given to your face when you clench your teeth together and pull your lips back. Sometimes you’ll squeeze (or try to pinch) my hand while you make this expression. Other times the expression comes and goes as you jump.

On other occasions, you will be standing right next to me—leaning your weight into my legs as I sit on the couch. Your lips will begin to curl up into a smile. A soft giggle falls from your lips. You look so happy.  I’m left to only wonder: What is this most joyous secret of yours?

And when you jump, you JUMP—high on the trampoline, in place thirty times in a row, or as you move around the dining room. Tongue out, toes slightly angled inward, happy Coral jumps.

Or sometimes you twirl and spin. Spin and spin and spin. Head back, stopping only for a brief second to regain your balance and then back to spinning.

Other times you bring me one of your toy cars. It’s your way of asking me to spin the wheels. Spin and spin. Your bring the toy so close to your eye I wonder how you can even see it. But you do. 

You have music toys that cycle through different tunes. Each press of the button leads to a new song. Your favorite song will play. At its completion, you will quickly begin pushing the button again. One, two, three, four pushes and you stop right after the first note of your favorite song.  You find your tune every time. More quickly than I ever could. With a musician’s ear. It’s pure magic. 

When you hear the Sesame Street song playing on the TV, you stop and look up. Once Elmo appears you find two of your favorite Elmo figures—maybe a book and a toy. You carry them over to the TV and stand right in front. Soaking in all the Elmo time you can.

When bath time or pool time comes, you dive for the water more quickly than an actual fish out of water. You are my breath holding, bubble blowing little mermaid.

You love your books, especially your favorite ones, like I Love You Stinky Face. Sitting in your room, you somehow turn exactly to your favorite page. It’s the one where the mom sits next to the swamp. “I love you my slimy swamp monster.”  You just stare at that page, maybe the images dance through your head. I can only wonder. 

I find you climbing anywhere and everywhere these days. It seems like you are drawn to balance on the most precarious pieces of furniture using the most precarious of stances. Our very own Free Solo.

Speaking of furniture, you find great delight in pushing all of our dining room chairs around. Down the hallway. Over to the sliding glass door. Your brother says you are going to be a furniture mover when you are older. I guess we will have to see.

You get into EVERYTHING. Baby safety lock Houdini. Our tippy toe reaching, long arm stretching clever little girl. Silverware drawers, mixing bowls, containers of crayons and pencils, LEGOs, and a little splish-splashing in the fish tank. Our curious Coral. You keep us on our toes.

When we lift you up, you wrap your arms so tightly around us. Big bear hugs. After we say, “Kiss, kiss,” you lean your cheek or your lips towards our lips.

My Coral Buggy cuddle bug. 

And gosh, Coral, you are so beautiful. Big, bold, blue eyes beautiful.  

Coral, sometimes you may wonder why I seem so far away. At times, things can feel so heavy and overwhelming for me. Advocate. Therapy. Behaviors. Communication systems. Epilepsy worries. It can overwhelm. But I promise you that I will always make my way back. I’m always here. I just need a moment to remember what really matters—you—not any of these other things.

In the same way, there are moments when life seems so challenging for you. Frustrated screams. Bites. Pinches. I wish I could “save” you from these communication and sensory struggles. 

But then I remember—you don’t need any saving, my beautiful girl. 

To save you, rather than to empower you, is equivalent to viewing your life with pity instead of dignity.

That is why I advocate for you to have access to a variety of life experiences and therapies—so you can develop your independence and find what makes you happy. 

I refuse to believe that the solution is to turn YOU into ME—that somehow my narrow neurotypical life experience holds the key to happiness for you.

Your accomplishments are grand— the inchstones and milestones. We will always celebrate those with you. But those moments aren’t YOU. They never will be.

Instead, I will always find YOU in your giggles, your jumps, your spins, your curiosity and your hugs and kisses.

4 and a half years of discovering your interests and gifts. A lifetime left to go. I can’t wait to watch who you become.

My Coral fish. 

Keep swimming—up stream or downstream. This is your life. This is your river. 

I’ll just be the one in the canoe, trying to keep up—trying to navigate your river with as much grace as you do. 

(The birth story was written when Cruz was 3 weeks old, while the ending was written when he was ten weeks old. Now he is 4 months old.)

As a little kid I would often tell my Mom, “I want 7 kids.” 

She would smile in response, never saying too much.  (Now I realize she was probably laughing inside.)

Over time, I decreased that number. “Well, maybe not 7 kids but definitely 5,” I once told her. Now I laugh at my (maybe slightly) over zealous goal.

Tom had Aaron (who became an awesome step-son), and then Tom and I had Tate, Coral and most recently Cruz.

Now I find myself in the postpartum time period. This time following birth feels full and different­­­—full of physical and emotional changes and full of adjusting to a new normal. It is a time when our world wants new Mamas to somehow continue being who they were before birth when, in reality, a new woman is actually being born alongside her baby. Postpartum is releasing the need to multi-task—being okay with nothing getting done besides the baby being fed and all the kids being loved. Postpartum with social media is letting go of comparisons and recognizing that whatever “I think I should be able to handle and accomplish” during this time actually means nothing. It is okay to know my limits and to ask for help. 

Despite the fullness, this time period can feel lonely and repetitive. And though a new Mama has just witnessed the power of a woman’s body to grow and sustain life and then to birth this life, the postpartum time can quickly forget this, leaving Mamas to somehow feel inadequate. 

During a pandemic that shakes up everything, postpartum can be even more intense and anxiety-ridden. It can feel like a time where birth and death coexist in some strange sci-fi movie playing on repeat against a backdrop of the newest Covid-19 case rates, number of deaths and hospitalization data. Strange. Unnerving. Endless. Repetitive.

But to have a postpartum time, there must first be a birth. I love the empowering nature of physiological birth. Recently, my midwife asked me, “Which are the stories about birth that we hear?”

When I think about the stories that are told they are the ones that take place in the hospital. There is nothing wrong with a hospital birth. If a woman chooses a hospital birth, that is her story. It is certainly no less of a story, no less of a birth. However, I think that more often than not, births in the hospital are not truly chosen by women but instead they happen to women. Pitocin, epidural, and then a 30% chance of a cesarean birth. This birth fits the collective narrative we tell mothers-to-be about what to expect from birth. We hear it from our friends when they tell their childbirth stories. In our society, we seem to accept the idea that birth is not something the mother does but something that is done to her.

As an alternative to this narrative, I would like to tell the story about Cruz’s birth.  His birth is my story to tell. And it is Cruz’s story of his entrance Earthside.

Ever since I was pregnant with Tate, I loved to read and watch home birth stories. There was something about the surrender to birth, the unfolding of the natural physiological birth, that captured my attention. I visualized the birth I wanted with Tate, and it manifested in his beautiful water birth at a birth center. Two years later, with Coral, I had a very special home water birth that progressed so quickly at the end that our midwife arrived only 8 minutes before she was born!

Three years later, pregnant with Cruz, Tom and I actually decided to have a hospital birth—not because we didn’t love our home birth but because our insurance would 100% cover a hospital birth but not cover any of a home birth.  Then March hit and COVID-19 came sweeping in with its plan to undo any plans I had. Once I knew our doula couldn’t be at the hospital birth, I spoke with Tom about switching to a home birth. At the start of the third trimester, we were connected with an awesome midwife and made the decision to have another home birth. (I often try to find the silver linings in all of this Covid madness; having another home birth was certainly one of the positives to come from this pandemic.)

As my due date came and went, and Cruz felt bigger by the day, I tried to stay focused on letting my body begin labor on its own.  Each day I stayed busy (and exhausted) caring for Tate and Coral. One day shy of 41 weeks pregnant (with a recipe from my midwife), I drank a bit of castor oil. Castor oil is known to be a natural labor inducer (though it is not recommended to take it before 40 weeks and never without first discussing it with your care provider). A couple of hours after drinking the castor oil I had what I thought was an actual contraction (not just a Braxton Hicks contraction). I notified my midwife, doula and the family members who were going to come to watch the kids.  I told everyone that I would call back in about 30 minutes if the contractions became more regular. Within ten minutes, I realized that things were kicking in.  I asked Tom to call our midwife.  I texted my parents, sister and doula that they should probably come; they all were about one hour to one and a half hours away. 

At this point, the contractions were still not super intense but they were coming quickly. Sometimes it almost felt like one super long contraction with only 15 seconds in between. Because this was my third birth, I was aware that things seemed to be progressing quickly.  I had been making a lentil salad.  It did not take long before I realized that I could not focus on making the salad.  That was about the same time that I tried to sit down to feed Coral her lunch during her ABA therapy session; I quickly realized that was not going to work. I alternated between sitting on a yoga ball and standing up and leaning on the kitchen counter. At this point, we suggested that Coral’s ABA session end, so her therapist could leave.  Then, it was just Tom, Coral and me at the house. Tom was busy getting the bed ready and the birth tub set-up.  

I moved back to the bathroom and asked Tom to make me a piece of peanut butter toast. I knew the importance of eating and drinking in labor. I think there was still a part of me that thought this may last awhile. Approximately two minutes later, I told Tom, “Forget the toast. Please call Tatiana and see when she will get here.”  

That was the point when I felt my water break, and I knew it was going to go fast from there. The contractions were intense. (In labor terms, I went through early labor and active labor in about 40 minutes.  I was now in transition, which is the time when the cervix dilates from 8 to 10cm.) I tried to continue to focus on my breath, as I sat on the yoga ball through the contractions. At that point, Tatiana arrived. She came into the bathroom and encouraged me to relax my shoulders during the contractions. About one minute later I got off the ball and told Tom, “I need you now.” 

Up until this point, Tom was setting-up while attending to Coral. But now I knew I was entering the part of labor and birth when I needed him to be by my side. I walked from the bathroom to the side of the bed and hung on Tom’s shoulders through two very intense contractions. 

After those two contractions, I immediately felt Cruz moving down the birth canal. He would be born very soon. I looked at the birth tub and saw only one inch of water in it. I knew the tub would not be filled in time. I looked at the bed and couldn’t imagine laying on my back on the bed. That seemed so uncomfortable. So I dropped onto my hands and knees, draping one arm over the birth tub.

To feel this part of birth is incredible, to know that our baby would be here soon, to surrender completely to the pressure, to not actively push but rather to not resist Cruz’s downwards movement. During this stage of birth, I try to keep my mouth loose and let my body naturally move the baby down without actively pushing. After having two water births, I do believe that not being in the water makes the sensations more intense. I knew he was getting close. I could feel the “ring of Fire”, which is when the perineum is stretched out completely by his head. Intensity. And then relief as his head entered the world. At that point, it took a minute or so before I had another contraction and actively pushed out the rest of his body. 

Just like that, Cruz entered the world. Tatiana passed him to me between my legs. I held him tightly. So relieved. So full of joy. So in love.

Safe in our home. Together as a family. My birth. My way. My story. Cruz Thomas Keswick entered the world 1.5 hours after my first contraction. 

Cruz has been part of our family (outside of the womb) for about 3 weeks now. We are all adjusting to our new family of five (really six with our very important biggest brother Aaron). Cruz is getting bigger by the day, literally. 

During the blur of days and nights—nursing, diaper change and repeat—I find myself thinking back to Coral’s first weeks of life. I somewhat expected to have some feelings revisit me, and recently they have. When I look at Cruz and think about this time we have with him at home, I am so grateful. I recall watching Coral turn blue over and over again from not breathing during her first weeks of life. The traumatic postpartum irony of birth touching so closely to death is something you never expect to experience as a mom. The memories are vivid and the emotions are just as real. And I can’t help but think what a blessing it is to have Cruz breathe everyday on his own. To see his pink skin. Everyday I thank God for Cruz being here with us at home, breathing, growing and thriving. 

There are other emotions, too. When I watch Cruz learn things so naturally-like tracking with his eyes, turning his head to the sound of his brother’s voice, practicing holding his head up and reciprocating smiles with me— I find myself grateful, amazed and at times emotional. It reminds me of how hard Coral has worked and how much time we spent facilitating practice for her in all of these areas. I recall her being a few months old and working with her OT to help her visually track from left to right a motivating toy. Practice, practice, practice. 

It also reminds me that even when Coral reaches a goal or meets a milestone, her version always looks a bit different (from walking to playing to everything). This is not a problem for Tom or me. We are always thrilled when Coral begins to do anything new. But as Coral gets older, her differences become more apparent to others. Watching kids’ and adults’ reactions to seeing Coral move, vocalize or even have a sensory meltdown brings yet another reminder of how disability can evoke discomfort for many people. It is a glaring reminder of how far we still have to go before those with disabilities are seen as equal and valuable members of society, worthy of dignity not pity and friendship not fear. 

Fast forward to the present. Cruz is ten weeks old. He is becoming more interactive. The days are busy, as we embark on new unexpected adventures, like homeschooling. We are finding our way as a family. Coral is showing jealousy, and (oddly) it makes me happy to see her react so “typically” to her baby brother.  

I know time is moving quickly. I am trying to enjoy the moments I can, while recognizing that it is natural to not enjoy every moment of this exhausting, joyful, challenging, busy and full time. 

More importantly, I am trying to breathe, to take one day at a time and sometimes even one moment at a time. I know too well how closely birth and death sit together—whether they are separated by minutes, weeks or years. So for now, I want to soak up all of this beautiful life that I get to live with Tom and all of the life I am lucky to watch unfold through the lives of our children.

(Note: If you are looking for an amazing midwife who recognizes the importance of providing mindful and thoughtful postpartum care, as well as prenatal care, please reach out to Tatiana Koontz at Birth Waves Midiwfery. We had the same doula for all three of our births, Debbe Cannone. We have been so blessed to have her care at each birth and beyond. She is amazing!)

“Who is my first grade teacher going to be?” Tate asks a few weeks ago.

“Mrs. Keswick,” I reply.

Tate looks at me oddly.

“That’s Mama!” I say with enthusiasm, trying to make it sound far more exciting than it actually is.

Tate laughs. I laugh, relieved that (at least for the moment) he seems okay with the idea of home school and having his mom as his teacher.

As the official first day of school finally arrives for many school districts, I watch as my Facebook feed fills with first day photos. In these photos kids are cutely posed in front of their open laptops. Most look to have their own desk or work area. Notebooks and pencils sit on the side of the computer. Some kids wear headphones.

The photos are cute, a representation of this strange new type of education- Distance Learning. The kids look happy in the pictures, but I am sad when I think about how quickly the Distance Learning “honeymoon” will probably fade for kids. Once this first day excitement starts to wean and kids are left with more time on the computer and no actual in-person interaction with teachers and peers, I believe happiness will also start to wean and instead will be replaced by boredom, loneliness, over stimulation and potentially depression.

I also see a lot of privilege in these photos—white privilege and able-bodied privilege. I am not saying these kids shouldn’t have all they do—nice computers, accessible printers, reliable internet connection, private and organized work space, all the materials they could need and educated parents who can not only troubleshoot technological issues but who can also provide the academic support that is paramount to success during distance learning. These kids speak English, understand directions and can sit in front of a computer to listen to a lesson. These kids could potentially have a tutor to assist with their learning, if needed. Academically, I don’t worry too much about these kids.

I worry about the kids who do not have these resources. I worry about the gap that will inevitably grow between those who have access to all of this and those from certain backgrounds who are more likely to not have access (children of color, children from lower SES backgrounds, children whose parents don’t speak English, children who are learning English themselves and children from abusive homes).

I also worry about the kids with special needs­­­— the kids who possibly don’t have a cute picture in front of their computer on the first day because the virtual classroom is confusing and potentially overwhelming. Maybe they don’t understand what is being said from a receptive language standpoint. Maybe they can’t see the visuals presented in front of the camera. Or maybe they need to touch and feel something to make the learning connection. Maybe the Zoom commotion with teacher, students and aides is too much for them to process. Maybe the voice coming from the computer leads them to a sensory meltdown. Maybe they can’t physically sit in a chair, at a desk and look at a computer. Maybe these kids are not meant to learn in a virtual world because their gifts are ones that take face-to-face connection to be evident.

I wish I had taken Coral’s picture on her first Zoom meeting. She was lying on the floor, licking her toy. She didn’t wave hello when her teacher said, “Hi, Coral!”, even though she knows how to wave hello to people (who are actually present). She didn’t acknowledge any of the kids or aides, even though she does acknowledge people everyday with eye contact, smiles and touch. She wasn’t able to participate verbally because she doesn’t talk with words. She takes someone’s hand and takes them to what she wants (the pantry for snack, the high chair for a meal, the back door to play in the pool, a toy for help or to play).  She also uses a picture exchange system to communicate, an impossible task to implement virtually for Coral. She didn’t get to practice being in the proximity of her classmates, doing parallel play.

Beyond all of this, the teacher’s connection kept cutting out. The audio was spotty. It was actually hard for me to follow at times.

How can Coral be expected to learn anything in this odd virtual classroom?

THESE are the kids I worry about.

Most parents (and by that I mean 99.9% of parents) don’t have a child with as significant of special needs as Coral. It’s easy for her to be forgotten, for people to choose pity over empathy.  It’s easy for people to think Distance Learning “isn’t so bad” because it works fairly well for their typically developing child. It’s easy for some parents of typically developing kids to think, “It’s only a year. My kid can catch up next year.” It’s easy for us all to forget that we need equity and not equality- for our most at-risk kids to have a chance to be back safely in the classroom FIRST and engaged in face-to-face learning.

I also believe it’s easy for some people to choose fear over thoughtful analysis of data. It’s an uneasy and anxious time, making it easier to make decisions out of fear. One thing Coral has taught me is to not make decisions out of fear. We have made countless decisions for her health and well-being. Some decisions could have meant life or death: Do we stay in the hospital on oxygen or go home on hospice care? I have learned not to decide out of fear but to instead weigh the options, analyze the data and to move forward without hesitation (or regret) with a decision. Some decisions have been hard and some have required a leap of faith. Everyday I could live in fear with Coral: Will seizures return? Will she die in her sleep, like other kids with her diagnosis? Will I be able to care for her for years to come? But I don’t. I can’t live that way because it would be a joyless existence.

From what I have seen on my social media and in the news, talk about reopening the schools (in any form- hybrid or traditional) is muddied with fear, diluted with memes that don’t use facts but instead feed stubborn opinions, and embedded in a political narrative. Reopening schools has somehow become another part of “us versus them,” where open dialogue seems all but impossible.

This is a major problem for Coral and for all kids that need to be at school for at least some of the week to access their essential services (physical, occupational, and speech therapy). This is a major problem for a child, like Coral, who takes thousands of times to learn something, yet only a short time to lose the very skill she worked so hard to gain.  This period of critical brain development (the “First 5 Years” as it is often referred to) is fleeting for Coral. At four years old, this year is meant to be her second year in her special education preschool class. As of right now, she has received 2/3 of a year of preschool (last August through March).  Compensatory services that may be offered down the road by the school district (to make-up for lost services now) will never return to us this critical time of development.

We are starting to get a better understanding of the COVID-19 virus- how it is passed, preventive measures we can all take to slow the spread, best practices in hospitals to care for patients, the populations that have the highest risk of developing severe complications, and the extremely low death rate among children (one child has died in California) compared to a higher death rate among other populations. What we do not have the ability to quantify at the moment is the extreme effect on our children with disabilities (and all children for that matter, especially those who are marginalized and our youngest learners) for lack of in-person school. For years to come, we will be picking up the pieces of a generation of kids that lost critical learning time.  The WHO describes health as “ …a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.”  For our kids’ well-being, we have to have an honest conversation about health as multifaceted versus only the absence of Covid-19.

Our country’s history of education for those with disabilities is long, wrought with stereotyping, full of segregation and has evolved towards more inclusive practices as a result of parent and educator advocacy, as well as advocacy by those with disabilities themselves. Those with disabilities were excluded since the beginning of the public education system, often being placed in institutions. They are the only minority group that are still (in the year 2020) segregated into different classrooms. Yes, there are options for inclusion, but they are often limited for those with the greatest needs.  And even inclusion can feel not very inclusive when it is not done well with the very best educators and supports. It has taken years of advocacy to get where we are in the education system for kids with special needs through the entitlement of FAPE (free appropriate public education), guaranteed by the Rehabilitation Act of 1973. Distance Learning is not appropriate for Coral, given that she is nonverbal and has an intellectual disability. In ways, it feels like she has (again) been forgotten.

For Coral, this year is not about making lemonade out of lemons with some cute photos in front of a computer. Sure, I try to stay positive on a daily basis. But I refuse to resign myself to accepting what the school district will or will not do. Instead, I will be Coral’s voice. I will always advocate for what I believe is best for her because I am not convinced that school districts are thinking about Coral’s unique needs. I am not convinced that public schools and their teacher unions are exploring every option to get my Coral fish back onto campus. Private preschools have been safely operating in our area for months and camps have been up and running for almost 3 months, without incident. As a county we have met the metrics to be removed from the watch list and thus should be able to open all schools with safety measure in place in one week from now (if the good data persists).  However, I do not believe that Coral’s public preschool has a solid plan or even a true desire to reopen.  I have to wonder how much of this has to do with politics, negotiations with labor associations and liability concerns, instead of the actual Covid-19 virus.

I have to hope that other parents and teachers will join me in advocating for a return to at least some in-person instruction for our children with extraordinary needs. I have to hope that the school districts will receive more funding and will then apply that funding with true flexibility, innovation and creativity to find a solution that will work for Coral and other children to receive the education they deserve and need in a safe way— to receive their free appropriate public education.

I have to hope. But more importantly, I have to advocate.

And I will always do that for my Coral fish.