disability parenting

The Stories We Tell: Flying Macaroni and Snowless Mountains

~ Elaine Keswick ~ Leave a comment

Last January, upon returning home from our short trip to the local mountains, I knew my friends would ask me at school drop off how the trip went. I wasn’t quite sure what I should say.

There’s the general story, “Yeah it went okay.” But there are also the many nuanced stories — those I create from my judgments about my different experiences on the trip. Was it pleasant or unpleasant? Fun or disappointing? These questions could only be answered by the stories I chose to tell —both to myself and others — about our trip.

After packing up (an extensive process when taking Coral on a trip) and driving up the mountain, we realized our plan to play in the snow while we waited for our cabin was not going to work. The January southern California heat wave had melted all the snow, except where resorts made snow. After some time in limbo (agitating everyone), we could finally check-in to our cabin. Tom unloaded the car and then took the boys outside to explore and play.

I began to unpack the cooler food and prepare food for Coral. My tasks were punctuated by consistent interruptions to maintain Coral’s safety or to protect the material parts of the cabin — responding to Coral knocking over the bench for the table (repeatedly), grabbing and pulling on the blinds, climbing up onto the TV and banging it with her hand and running over to lick the hot wall furnace. It felt like each time I returned to the kitchen I was pulled outside of it to respond to Coral’s next curiosity. 

By the time her food was ready, I felt my capacity for patience reaching its end. I brought the bowl of macaroni and cheese to the table and sat down next to her. Many foods (macaroni being one of them) are hard for her to eat with a spoon; she often tilts the spoon at a certain angle that makes the food fall off of it before it reaches her mouth, and she tends to overstuff her mouth. Once she gets full she usually starts to use the macaroni as sensory play — squishing it between her fingers and smearing it onto surfaces — which is not desirable in someone else’s home (or ours). 

Shortly after I brought her the bowl of macaroni, she spilled some and then pushed some toys off of the table. In an instant, my capacity for patience (which had been stretched thin) snapped. My mind exploded with fireworks of thoughts about disability, parenting, the future and the present — a powerful collision between my expectations for this trip and the current reality. I slammed my fists down onto the thin, rickety table. The bowl of macaroni went flying in the air, spilling all over the carpet. And then I started to cry. I called for Tom to help and went to the carpet to pick up the macaroni. As I was picking up the macaroni, my cries turned to sobs. I stopped picking up the pieces and just sat there, sobbing.

Following my calls for help, Tom entered the cabin with the boys.  Tate and Cruz immediately sat down next to me, rubbing my back. “It’s okay Mom,” they repeated. Tate picked up all of the macaroni, as I sat there with occasional tears.

This event on our trip was the basis for one story I might tell myself. It would be the story about how I fell short of my aspiration to be present with and accepting of whatever is happening in the moment — to be patient and flexible. How could I lose my patience in such a robust way? How could I think everything I thought in that moment? 

Or I could see this event as the story of Tate and Cruz (at only 9 and 3 years old) being fully in the moment when I struggled to be. They supported me with their words and calming presence, just as I had done for them so many times before. It was a story of their compassion helping me to find my self-compassion. 

After the flying macaroni incident, Tom suggested I take the boys to the park down the street. While walking down to the park, I could sense my disappointment at their not being snow, at things being different from what I had hoped. Arriving at the park, I quickly saw that the park had unique and fun play equipment — a zip line, a newer version of a merry go round, a teeter totter and a tire swing. The boys ran with excitement over to play. 

“Mom, if there was snow, we may not have found this cool park. This is awesome!” Tate shouted. 

Playing at the park was the story of disappointment over unmet expectations about snow just as much as it was about joy in the curiosity of things being different than expected. It was a story about possibilities.

Once we returned to the cabin we knew we needed to get some food for dinner.  Eating out is something we rarely do because the loud and often crowded restaurant environment can be challenging for Coral.  Because we all were very hungry, we searched for a restaurant where Coral would eat something.  Rice and beans is one of her favorite foods, so we decided on a Mexican restaurant. We arrived and hoped for the best.  

As we sat down and ordered our food, I noticed that things were going okay.  Coral was happily playing with a toy in her adaptive stroller, and the boys were entertained by the kids’ menu.  This could have been the story of having a typical family outing to a restaurant.  But as I sipped from a margarita that arrived in a much larger cup than I expected, I listened as Coral’s vocalizations (high shrills that were her happy sounds) transcended what may have been an ordinary moment into a moment of awe. I sat there with immense gratitude that we were ALL sitting together at a restaurant. Sure, some kids stared at Coral  as she vocalized, but Coral and our family comfortably enjoyed our meal together.  This was the story of seeing the incredible in the common — when trying something different led to a surprisingly beautiful moment as a family.     

The next day we paid to take the kids down a tubing hill, since the snowless hills around the town were not inviting for kids with sleds. Cruz and Coral each did one run with us, preferring to play in the snow at the bottom of the run. Coral didn’t actually play in the snow but preferred to lie face-down licking the snow, made dirty by the numerous snow tubers who walked back and forth on that path.  Tom and I each tried to take a few runs with Tate, who seemed to be the only one interested in the actual tubing.  This was a story of my frustration with Coral not wanting to participate in any typical snow activity the way I thought she should, as much as it was a story of remembering to release my expectations in order to let Coral be Coral (relocated to a cleaner spot to lick snow). 

In the end, I opted to tell my friends, “Yeah, it was good. You know…we did it.”  Because on this parenting path, sometimes it is about trying something different.  It is about gently stretching my capacity when possible and being open to the stories that come.  These stories aren’t actually good or bad — they just are exactly what they are.  

They are stories of heartache and grief, as much as they are stories of resilience and joy. They are stories about patience lost, perspective gained and trying again another day. 

They are the stories that many other parents struggle to imagine as their own reality. They are stories that bring new perspectives to life — that remind us of the impermanence of all things.

They are the stories I tell about the tomorrows that may or may not come. The stories about future days that will probably arrive with stories I could never imagine or predict.

It is remembering that stories are stories, and this moment is all there really is.  And as many times as I forget this truth, I hope I also remember it.

It is my story. It is Coral’s story. It is the interweaving of our stories throughout this one precious life. Flying macaroni. Snowless mountains. And the many stories still left to be told. 

Finding Hope: The Corals, Kates and Sarahs of the World

~ Elaine Keswick ~ Leave a comment

When Coral’s teacher told me at pick up, “There’s a birthday party invitation in Coral’s backpack,” I did a double take. Coral has been invited to very few kids’ birthday parties. She has attended many parties, usually family birthdays or birthday parties Tate has been invited to, but it’s extremely rare for her to receive her own invitation. Part of the reason for this is because her friends in her special education class often have smaller (and less overwhelming) parties, just as we do for Coral. 

Once I arrived home I opened the invitation for Kate’s 7th birthday — a girl in Coral’s general education first grade class. Knowing that attending a crowded birthday party could be challenging for Coral, I needed to make sure the location would be accessible to her. The party was going to be at the park right by Coral’s school (a location she is familiar with) and on a day and time that worked for us. I told Coral about the party and put it on the calendar. We would try to attend.

The party day arrived, along with some anxiety. Unlike other birthday parties, I didn’t really know these parents or kids. My mind played ping pong with different thoughts and questions: What if Coral has a meltdown? Will she enjoy the party? Will the kids be happy she is there? I did my best to come back to the present moment, knowing that predictions about the party were futile. I didn’t have to live the party twice — once before and once during the actual party.

We arrived to the park a bit late because Coral fell asleep in the car on the way over. I had a bag packed with her favorite snacks and toys, and I draped her AAC device (her “talker”) over my shoulder. I carried a large blanket under one arm and held Coral’s hand in my other. I said some silent prayers that she would walk the entire way over to the party. With all of the extra stuff, it would be challenging to try to get her up, if she decided to drop to the ground mid-walk.

At the party I put our stuff down and began to walk with Coral towards some of the kids. A little girl named Sarah came skipping over with a huge smile. “Hi, Coral!” she beamed. She held out her hand, “High five?” Coral looked at Sarah’s hand. Realizing Coral was not going to reciprocate her high five, Sarah smiled and dropped her hand down. “I’ll see you, Coral,” she said as she skipped off. I was taken aback with pleasant surprise at the comfort and friendliness Sarah showed when greeting Coral. Other kids are often reserved and slightly awkward in their interactions with Coral, confused by how she plays differently and doesn’t use spoken words to communicate.

We walked over to the playground, but Coral only wanted to lay on the concrete. She seemed slightly agitated and did not want to play on the equipment like she often does. From there, we started down a slippery birthday slope, as I attempted to help Coral (and myself) regulate in the different and capacity stretching environment.

I watched as about 15 kids lined up to take their turn at the piñata, while parents snapped photos. Coral was lying across my lap and did not want to get off of the blanket to join the kids. She alternated between throwing toys off of the blanket with frustration and eating some snacks. As I sat there watching the kids and parents, I simultaneously watched my mind fill with emotions and thoughts. For all the mental work I’ve done over the past 7 years, emotions related to Coral and Dup15q syndrome still come up at unexpected times. I took some deep breaths, glad I was wearing sunglasses.

I eventually got her to stand up and walk over to the food table. I saw that the pizza was all gone. The birthday girl’s dad, who I met right there, was standing by the table. We started to talk in what turned into an awkward conversation — one when a parent of a nondisabled child (due to lack of perspective and experience) talks about topics that are unrelatable to a disability parent. His intentions were good, but (like most parents at the party) he had no idea about Coral’s needs, abilities and disabilities. He was talking about his daughter. At one point he casually asked, “Isn’t it so cool to hear about their new friends and their day at school?” I could only smile and nod, lost for words.

I could tell Coral and I were getting close to needing to leave to preserve any remaining emotional and physical capacity, but I wanted to stay for the birthday song. As I deliberated, Coral had a diapering emergency. With no large changing tables available in the park bathroom, I had to jerry rig changing her in the back of our van, while trying to maintain her privacy. By the time we returned, they had already sung happy birthday (one of Coral’s favorite parts of a birthday), and there wasn’t any cake left (something else she enjoys). 

I decided it would be best to say our “goodbyes,” gather our things and head home. I walked with Coral over to Kate’s mom to thank her for inviting us and for hosting the party. When I was talking to her, Coral looked up at her, walked towards her and leaned in for one of Coral’s sweet cuddly hugs. I smiled and looked at Kate’s mom’s face. It immediately softened, as she smiled — a look of comfort and ease replacing any previous discomfort.

As we drove home, I reflected on the party and why we came in the first place. I realized that in coming I didn’t need Coral to stand in line to swing at the piñata. I didn’t need her to sing the happy birthday song with words. I didn’t bring Coral to the birthday party to check typical accomplishments off of a list — to somehow prove that Coral could (in some way) be neurotypical. 

I came because Coral was invited. She has never been invited to a general education classmate’s party. I came to meet them halfway. If you invite Coral, she will come. 

I came to let Coral be a part of the party in whatever way was comfortable for her, even if I had to spend a substantial amount of time in my own discomfort. 

I came so the parents of her classmates could meet her and finally put a face to a name — to bring the human side to whatever perception they may have had about her disabilities. I came so they could see that Coral is really just a 7 year old child who has her own preferences and ways of doing things, like their own child. 

People often say, “There’s no guidebook on this disability parenting path.” To an extent that’s true, but I think Coral and I are writing our own book. We’re learning what works: how to respond to certain situations, how to navigate the varied emotions that arise (even at surprising times), and how to approach situations with flexibility and even curiosity.

On this path, I am learning that where there is despair, there is an opportunity to find hope. At a party full of reminders of how challenging it can be to find accessible events for Coral and how isolating this parenting experience can feel at times, there are glimmers of hope. 

If we hadn’t attended the party, we both probably would have been more comfortable. But attending the party offered some important reminders of hope. Where some may be uncomfortable around disability, there are the Corals who help them connect with a shared humanity and capacity for love. Where some would never invite Coral to their birthday party, there are the Kates who include her. Where some struggle to connect with Coral, there are the beaming Sarahs who choose to see Coral not only as a peer but also as a friend.

Three very different girls. Three important glimmers of hope. 

These are not isolated incidences but reminders of what can be — in any moment and in any place — if we’re courageous enough to see beyond the challenge and despair that may be present, too.

What Does Rare Mean to Me?

~ Elaine Keswick ~ Leave a comment

Seven and a half years ago Coral was diagnosed with Dup15q syndrome. At the time, it felt like this rare diagnosis shattered the floor my life was built upon. But in actuality, rare catapulted me face-to-face with an uncomfortable truth in life — anything can happen at any time. Sure, certain things are more or less likely to occur. But even when something is unlikely (or very unlikely), rare doesn’t mean it won’t happen. On the contrary, rare will happen, at some point and to someone. 

When Coral’s older brother, Tate, was diagnosed with a rare heart condition last spring (1-2/100,000), I couldn’t believe the odds. I love math, but I couldn’t seem to get the numbers to work out— two kids with unrelated rare diagnoses. What were the chances? 

Rare means I touch the reality of “anything can happen at any time” on a daily basis. Instead of treading fearfully through life, rare gives me the chance to open to the whole of life — the sadness and the joy — because I see how fleeting any one thing can be (like Tate’s health).

Rare often feels like I live in life’s fringe areas — the dark corners inhabited only by those who fall into this unlikely probability. But it equally means seeing the way the light enters into these areas, in rays and sparkles so few people experience.

Rare means putting faith in possibilities not yet actualized and not even imagined. It is a curiosity in a future that looks far different than I expected. 

Rare is a hope in science, treatments and cures. It is a faith in knowing that I am never walking this path alone, as isolating as the experience may feel at times.

Rare means I am more grateful for small things — a successful dinner out to eat as a family, a family outing to an activity we all enjoy and a day without medical appointments. It’s the realization that the small things are often the big things.

Rare is learning as much as I can about something I never knew existed only eight years ago. It is raising awareness about Dup15q syndrome, non-spoken autism, sensory processing differences and AAC use.

Rare is advocating for accessibility and inclusion for Coral. It is a daily determination to help others shift their perceptions about disability, so they can more freely see Coral for who she is, including the inherent value in her life.

Rare is opening my arms with empathy and compassion to both Coral and Tate, knowing that I don’t know their experiences, but I can be present with them through the hard times. It is hoping others will also open their hearts with compassion (not pity) to my kids and our family. 

Rare can still bring me to tears on certain days, but it also serves as a reflection that helps me see how far our family has come over the past 7 years. 

Rare is watching with great pride at the resilience that both Coral and Tate show in walking their own respective paths, knowing they show up each day and do the best they can. 

Rare is deciding to live one moment at a time, courageously stepping into the unknown with everyone else in the world who walks a rare path in one way or another.

Rare is our family’s day-to-day life. 

Rare is my parenting path. 

Rare is my Coral fish — swimming through life in her own river in her own way (and probably with some underwater music headphones).