aware 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. 

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).

Navigating the Holiday Season

~ Elaine Keswick ~ Leave a comment

This past weekend we went to the Wild Holidays event at the Safari Park.  We chose this event as one of our family holiday events because it combined music and lights — two of our daughter’s (who has Dup15q syndrome and is autistic) favorite things.  Santa was also making an appearance (a bonus for our toddler!).

During the event our boys (9 and 3) were saying things like, “Let’s come back. This is really fun.” As I watched Coral, I couldn’t help but wonder if she was enjoying the event.  She spent most of the time looking down and not looking around at the lights, as I might have expected her to.  Then, we went through the bridge of lights — a long bridge that surrounded her with lights.  As we walked on the bridge, Coral commented on her AAC, “Like holiday.”

I turned to Tom, “She likes this!  She just told me.”

In that same moment, I remembered something that Coral taught me many years ago: It is important for me to be open to Coral participating in an event in the way she enjoys — no matter how far from my expectation that falls. 

It was a reminder to approach this holiday season with awareness, flexibility, curiosity and joy. I know that embodying this approach can feel challenging, as the holidays are a time of super charged expectations that often differ wildly from reality.  Routines change (including two to three weeks without school). Sensory overwhelm abounds. Invitations to inaccessible events often arrive.  Holiday foods are different.  Comparison to other families’ seemingly perfect holiday photos can evoke many emotions and feelings. The result? A perfect storm for parents of disabled children (and dare I say for all parents).  And this storm is not a holly jolly North Pole snow flurry with Santa.  If you know this storm, you know.

So what can be done to find a bit more of the “happy and merry” in the holidays? I have compiled a short list of reflections and changes to consider — ones that have the potential to increase moments of connection, curiosity and joy. (Spoiler alert: I think this list can apply to any parent, whether your kids are disabled or not.)

1) Expectation, Reality, Story

Write down a parenting expectation about the holidays, followed by the reality (try to stick to the facts about what happened) and end with your story about the facts (this is the part where our brains start layering thoughts and feelings on top of the reality). Complete this list for as many expectations as you’d like. An example from my list is below:

Expectation: The kids all decorate the tree.

Reality: Tate and Cruz decorate the tree, while Coral plays in the living room. She watches Super Simple Songs Christmas edition and plays with her favorite music and lights toys.

Story: Gosh, it’s disappointing that Coral doesn’t put the decorations on the tree. I wish she wanted to participate in this family event. In other families, the kids always want to decorate the tree.

The power in making a three-part list like this is that it allows me to take some of the pressure off of the expectations around the holidays.  In my example, when Coral is playing in the living room, she is content.  Does she actually have to decorate the tree? Or do I just feel like she should want to decorate the tree? 

I can more clearly see the difference between what is happening (reality) and what my brain tells me about what is happening (my story and the comparisons my story makes to an expectation).  The point of this exercise is not to feel badly about having expectations or certain feelings about them not being met.  It is to give me more operating space around the expectation — to allow my brain to flexibly view the expectation and the reality without jumping to so many stories.

2) Be Flexible with Holiday Traditions

There will be certain holiday traditions that are important to your family — ones you want to maintain.  If these traditions/activities are ones your disabled child struggles with or seems uninterested in, can you find a way to make the activity meaningful to your child? Can you make changes that would help your child participate? If not, can your child do something different while you participate in the tradition?

During the Christmas tree decorating described above, once the boys had finished, Coral came over to the dining room. She walked over to the tree and took an ornament off, holding it close to her eye to observe every detail. I then showed her how I could put an ornament ON the tree. Off, on, off, on. Coral was interacting with the tree and ornaments in a way that made sense to her and that she enjoyed. Holiday cheer in action. 

Having a flexible and curious mindset helps to release some rigidity around a tradition. I can then be more open to seeing possibilities I may not have seen before.

3) Start New Traditions 

In creating new traditions that Coral will (hopefully) be interested in, I start by connecting with who Coral is and what she enjoys.  To do this with your child, these are some questions you can ask:

What is important to our family during the holiday season?

What brings my child joy?

What does my child enjoy doing?

In which type of environment does my child thrive?

What environments are challenging?

What accommodations will my child need in order to participate in this activity?

After answering these questions for our family and Coral, we knew we wanted to do a couple of things together as a family because it brings Coral joy to be with us.  To identify what activities would work, we thought about what she enjoys (music, lights, riding in her wagon, swimming, and Sesame Street top the list).  As we worked through the list of questions, we decided upon the Wild Holidays event and the Sesame Place Christmas event. We have passes to both of these places, so attending these events is free for our family (a win-win!).

Another new tradition we plan to try this year are wagon rides around the neighborhood to look at Christmas lights.  Additionally, Tom decorated our backyard with beautiful Christmas lights.  We think Coral would enjoy an evening jacuzzi swim with a backdrop of these Christmas lights.

If I may propose a radical holiday tradition — don’t do anything extra. Slow down the rushing energy. Be together at home. Don’t make any specific plans. Enjoy time observing your kid(s) play — getting a precious peek into who they are becoming. Play with your kid(s). Enjoy each other. 

4) It’s Okay to Say No

I grew up with a wonderful and rich tradition of a large Polish Christmas Eve celebration. It was a joyous gathering of our whole family with delicious food and tasty drinks. When Coral was younger we still attended the Christmas Eve event. However, as Coral has gotten bigger, more curious, more mobile (yet still without environmental safety awareness) and more sensitive to sensory stimulus, we have declined attending the event. 

Attending an event that is extremely difficult for Coral is a quick way to be launched into a parent caregiver holiday vortex of stress and exhaustion. I’ll pass. My family loves Coral. I know if they could make accommodations for her, they would.  It’s simply not feasible, given the location and type of event. (We also have our travel and sleeping accommodations for Coral to consider.) 

In coming to the decision to attend or decline holiday event invitations that could be hard for your child, it is important to recognize what is behind the decision.  Is the decision to attend fueled by guilt, a sense of obligation and/or habit energy related to these two? Or is the decision made only after thoughtful consideration is given to your child’s needs, your needs as a parent caregiver and the needs of each family member?  Will this decision strengthen your regulated internal state, or will the result be added stress that takes away from a joyful holiday season?

No one can answer any of these questions for you.  Taking time to sincerely reflect in stillness and quiet will lead you to make the best decision in that moment.

In the case of our Christmas Eve family gathering, declining the event is a decision that honors both my caregiver capacity and Coral’s needs.

5) Begin a Daily Gratitude Practice 

Numerous scientific studies have found that having and expressing gratitude to others can have positive effects on both emotional health and relationships. During the holiday season, which can bring its own stressors, a daily gratitude practice can help bring us outside of ourselves, strengthening the feeling of connection with others.

Try writing down a few things each morning or evening for which you are grateful.  Notice how your body feels as you contemplate your gratitude.  Alternatively, begin or end times of meditation or prayer with gratitude for specific people or occurrences.

Express gratitude to people throughout the day, both those you see and interact with daily and those who you may not see again.  Doing this has the potential to bring you outside of your internal story and into remembering your interconnected nature. 

As you journey through this holiday season, try to maintain a self-compassionate and open approach when trying any of these practices, reflections or considerations.  Everything does not have to be done at once.  Small changes in awareness and reflection can have large impacts over time.  Hopefully, some of these ideas bring more moments of connection and joy to your home, as they have to ours.

Thank you for reading!  I will be launching a newsletter with short ideas and strategies to bring more awareness, connection and joy to (what can often feel like) a challenging parenting journey. Please consider subscribing to the blog and/or emailing elaine.keswick@gmail.com (Subject: Newsletter) to be added to the newsletter list.