A couple of days after we returned home from the Dup15q Alliance family conference in Nashville, I went on my computer to complete the Vineland parent form. At the conference Coral was part of ongoing research — in-person assessments accompanied by parental surveys — to provide developmental information about the syndrome. The Vineland is a way to assess a child’s development in comparison to same-age peers. It gathers information in various areas of development, including communication, gross motor development, adaptive skills and socialization. Statements about a child’s development are presented, and a parent rates the frequency of occurrence: Usually/often, sometimes or never. Points are calculated per category and compared to a normed amount based on a child’s age.

Over the course of Coral’s life, I have completed several of these Vinelands, but my most recent was a couple of years ago. While competing the survey this time, I was happily surprised at the increased number of questions for which I could now answer “Usually/Often.” These included questions about her knowledge of the alphabet and knowing more than 50 words, among others.

I finished the survey and was given a response that results would be ready within an hour. That night, after the kids went to bed, I opened my laptop, curious about her results.

“Ahhh, crap,” I mumbled to myself, as I scrolled through the several pages of Coral’s Vineland results. I’m not sure what I was expecting to see. Despite having completed these surveys, or other similar ones, for the past 7 years, I still forgot. For me, these have never been about comparing Coral to her neurotypical peers, but rather looking at her own growth over time. I needed a Sinead O’Connor song playing in the background, just as a reminder: Nothing compares to you. 

Though standardized assessments and parent forms serve an important role in the research side of Dup15q, they struggle to capture Coral’s nuanced development. Questions break skills into typical developmental trajectories, which reduces Coral’s points when her current skills are spread out inconsistently across the developmental landscape or when she does things in a unique way that cannot be captured by the standardized questions. For example, one of the statements reads, “Points to at least three body parts shown in pictures when you ask.” Coral knows the names of body parts and talks about body parts with her AAC. However, if I were asking her to point to characters’ body parts while reading one of her favorite picture books, she would probably disengage. For Coral, reading a book is for reading a book, not being questioned about out of context topics.

Still, her development diverges from neurotypical, and as such her scores compute to normed equivalents below the first percentile in almost every category. Imagine a bell curve with a high peak in the center (representing the 50th percentile), the first percentile sits extremely far to the left of the curve. Where the space under the curve near the 50th percentile is expansive, the space below the curve at the equivalent of the 1st percentile is tiny. 

From a societal perspective, this tiny space is often (unfortunately) equated with the perceived value and worth of Coral’s lived experience and equivalently my lived parenting experience. Despite the space being so small, I have found that inhabiting this space as a mother has led to more expansion than I ever imagined was possible. Parenting in the tiny space to the far left of the curve has allowed me the opportunity to choose to see things far differently. 

This space is filled with other parents, too —ones that similarly never expected to be parenting under this part of the curve. Some of these parents recently filled a Nashville hotel’s conference rooms with energy and enthusiasm for the family conference at the end of July. This is not a group of parents that is counting on things getting easier as our kids get older. In fact, I think many of us realize that things could possibly become more challenging. Despite each of these parents looking out to a future that holds a multitude of potential paths for their child in different areas — medically, developmentally, behaviorally — I see parents finding their way, individually and collectively. They are flexible, patient, thoughtful, loving and strong advocates. This may be a rare space, but I’m in good company. For that, I’m grateful.

Even with a supportive alliance, parenting in this realm is not all rainbows and butterflies. It can still feel isolating and challenging, even in the good times. In the hardest times, it’s a swirl of emotions seemingly fueled by hurricane force winds. The best I can do is buckle in for the ride and try to feel it all, until it passes. And while parenting is the hardest thing I’ve ever done, parenting a child with a rare diagnosis adds several complex dimensions, notwithstanding a necessary vigilance to maintain Coral’s safety. All. The. Time. 

Sometimes I drift off into memories of when I was pregnant with Coral. In one such memory, I am sitting on the couch after Coral’s 20-week anatomy ultrasound. While holding my pregnant belly, I tell Tom, “I just don’t think I could parent a child with special needs (at the time that’s the phrase I used). I’m so glad the ultrasound looked good.” I sit there daydreaming about Coral, while counting my “lucky stars” that I will remain a part of the typical parenting experience. 

Now I can’t help but see the irony and naivety in that entire moment. Those “lucky” stars I was counting seemed lucky in large part because they represented a parenting experience that didn’t fall outside of the norm. They were comfortable stars. Expectation-abiding stars. Familiar stars. Easier stars. 50th percentile, average stars. 

By contrast, life in the first percentile is like parenting from the stars — an outer space parenting experience that calls for a radical restructuring of my perceptions, values and thoughts around life and disability. Parenting in this space provides a daily reminder of how precious and fleeting life is. The odds of Coral being conceived and being born were astronomically low to begin with — to get to be her mother is a rare statistic I wouldn’t trade.

So I will sit here in the first percentile with Coral, watching with consistent surprise at the tremendous amount of life that fits in the space beneath this part of the curve — the giggles, the smiles, the growth, the curiosity, the determination, the love, the patience, the empathy, the compassion and the community. 

I never knew so much could fit in such a rare space. But I’m glad I know now.

A little over a month ago Tate awoke us from our sleep in the middle of the night.

“My chest hurts,” he said, while holding his chest.

Half asleep and confused about chest pain in my nine-year-old son, I asked him to explain the pain. He replied, “It’s like a stabbing pain in my chest.”

My first thoughts were that he had pulled a muscle. After trying to get him to lie down with us, I quickly realized that this could be more serious than a pulled muscle. 

A trip to our local ER resulted in him being transferred to our county’s children’s hospital.

When I finally returned home after many hours at the hospital and very little sleep, I started to cry. As I cried, I watched my mind shoot second and third arrows. Those arrows refer to the story I was telling myself about the first arrow (what actually transpired)—Tate had unexpectedly been admitted to the hospital with a heart issue. With the second and third arrows my mind was shooting into the future with a million worst case scenarios— futures filled with sadness for him and for us as a family.  The arrows were not representative of what was happening in this moment, but rather they were projections to a future I knew nothing about. 

Some of the suffering of the second arrow was a result of my thinking, “This is not supposed to be happening.” Though that thought wanted to be seen, I could see its ridiculous nature. There is no one thing that is supposed to or not supposed to happen. Events happen. Tragedies occur. Adversities arise. This life event was not happening to me. It was simply happening— a dance of the universe I will never fully understand.

To think something is “not supposed to happen” is to presume to know all the causes and conditions present in a moment in the universe and to then surmise that what followed was not a natural result of those conditions. Impossible.

Before Coral was born, there was a part of me that believed (to some extent) that I could control life if I did everything “right.” I could somehow protect against the worst events and effort my way to the “perfect” life— free from intense suffering and major challenges.

I now recognize that joy and suffering in life are two sides of the same coin. No one knows what is going to happen next. There is no tally sheet to record medical emergencies, so a clear quota can be met. Rare diseases, like Dup15q and infantile spasms, do occur.  Some kids’ bodies will react to viruses in the way Tate’s did—attacking his heart, mistakenly thinking it is the virus. Some people get cancer, like Tom did (twice). 

Uncertainty is a part of life. The choice I have is to decide how to relate to the uncertainty and the events I might initially feel are “not supposed to happen.” I suffer more by projecting second and third arrows about the experience and resisting it at every turn. 

Alternatively, I can choose to suffer less. I can be in the moment, as hard as it may feel, without identifying myself with the moment. I can see the arising emotions (anger, sadness, anxiety, etc) without identifying them as who I am or the type of person I am. I can see that everything that arises does pass away. I can return to my breath as many times as I need to.

I can also be mindful of the tremendous number of blessings and the sheer amount of luck which have punctuated my life thus far. I can have immense gratitude for this life.

Tate came home after three days in the hospital. He remains on some activity restrictions. The path ahead is a bit uncertain, but Tate is generally back to being himself (minus soccer teams, trampoline parks and other very strenuous activities).

Shortly after he returned home, Tom and I traveled to Reno for a dear friend’s memorial.  The morning after we got back I went into Coral’s room to get her up. On her AAC I said, “Good morning, Coral. How are you?”

She looked at me and replied, “How are you?” She then said, “Mama, Mama, Mama,” all while she stared deeply into my eyes. Though she’s looked at me countless times before, this time it was as if she was truly seeing me for the first time.

In that moment it was as if I was seeing her for the first time, too—her love, her soul and her whole person.

The moment was a juxtaposition to the memory I have of sobbing on the bed after receiving her diagnosis, another life event that was “not supposed to happen.” 

It is in these very different moments that I have the opportunity to see how everything is truly connected. The latter moment of pure joy and connection would never be if I had not passed through the difficult moment of receiving her diagnosis.

Life is the convergence of both the moments I meet with open-arm acceptance and those I encounter with more resistance. It is the journey of walking through each one while trying to remember: Let it be.

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.