Month: November 2023

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.

The Sweet Spot

~ Elaine Keswick ~ Leave a comment

I was checking out at the friendliest grocery store in the area, where the employees often hold full conversations with customers. This time the cashier asked me, “What are you up to later today?”

“Just staying busy with the kids,” I replied, with a smile and slight chuckle.

“Oh cool. How many kids do you have?” she asked. After I told her the ages of the kids—9, 7 and 3—she quickly chimed in, “Oh those are great ages. So fun! The older ones can be a little more helpful.”

I smiled and nodded. I didn’t say anything because this was not the place to break down what “9, 7 and 3” looks like in our house, where our middle child has dup15q syndrome. It certainly wasn’t what she imagined. 

As the conversation continued, I thought about what I might tell her about our family dynamic, if I had more time.  It would sound something like this:

“In our home, we bounce between semi-calm and full chaos in an instant. Cruz (our 3-year-old) might start crying, which often leads to a sensory meltdown for Coral. She will then start frantically running around with no regard for her safety—tripping on toys in her path and possibly falling. My nervous system revs up and relaxes down with each repeat of the above scene. There could be countless episodes in a day.

“When I’m home alone with the kids every weekday morning, I pee with the bathroom door open.  This is not to watch Cruz, but rather to make sure Coral isn’t putting her safety at risk. I might come out of the bathroom to find Coral standing on the table, about to go head-to-blade with a fast spinning fan. Or she may be getting an up-close view of the bright fish tank light, grabbed from the top of the tank and held directly up to her eye, for the hundredth time. A small non-edible item could be in her mouth, or she may be doing a back bend (using only her flexed neck as a support, instead of her hands).

“I constantly think one step ahead, removing drink cups, cans, anything that could break or is potentially dangerous (like a kitchen knife I may be using to prepare a meal).   These are prime targets for grabbing, spilling or swiping off a table. We have double locks on all our gates.  Even with this protection, a mistakenly open gate can lead to Coral running straight into our busy street (unaware of the danger to herself), which happened recently. 

“Attending events—family, friend or community—is not a relaxed endeavor. It’s planning, packing (diapers, clothes, favorite toys, special food, medicines, adaptive stroller, AAC) and having a back-up plan. It’s knowing when we should “divide and conquer”—our term for splitting up to attend events that work for only certain family members—and when we should try to attend as a whole family. 

“And all of this doesn’t include the activities of daily living with which we continue to help Coral—dressing, eating, toileting and bathing.”

Of course, I didn’t tell her any of that. I gathered my groceries, thanked her and walked to my car.

Over the next few days, I thought about the conversation with the cashier. I believe the cashier was describing a parenting “sweet spot”—when kids reach the age where there is far-less physical parenting, but they are still curious and child-like in their joy. In other words, a time when the kids still want to do things as a family, but you don’t have to do as many things for them. 

After an initial heavy-hearted reaction to this illusive “sweet spot” in my own parenting journey, I realized there are still tangible “sweet spots” for our family. 

Our “sweet spot” is not a sustained “arrival” to the sought after freedom from the demands of physical parenting and a time of a bit more parenting independence. Rather, it arrives in moments sprinkled throughout the day—there to be appreciated, as long as I am open to seeing them. 

Our sweet spots are in the moments when Coral and Cruz jump together in the trampoline, for even three minutes, smiling and enjoying the time together. 

It’s the very few times when we all end up at the table together for a meal, sitting (or half sitting and half standing, in Coral’s case). 

One day after school, Coral dropped to the ground halfway from her class to the dismissal gate.  Tate arrived, picked her up and carried her the rest of the way.  Coral’s smile spread with each step Tate took towards the gate—a joyful sweet spot.

Sweetness is found in Coral’s snuggles, as she climbs on my lap and lays her head against my chest. She holds a favorite music toy in one hand, as she giggles softly.

It’s the time Coral went to a neighborhood party and jumped high and energetically on the trampoline.  When the family’s small dog came into the trampoline, Coral watched her, completely mesmerized.  She softened her jump when the dog came closer and even sat down next to the dog, attending and engaging with the dog to a degree we don’t often see.

On a different day I was about to leave for work, and Coral said, “I love you,” turning around in her chair to look at me. I quickly walked over to her, beaming. “I love you, too,” I said. Pure joy.

Before I could fully bask in the “I love you” moment, she chimed, “I’m joking.” I laughed so hard out loud. Coral’s hilariously joyful comedic timing.

It’s sitting with Coral in the large red chair in her room, as she presses a specific button on her music toy to play one of her favorite songs, immediately looking deeply into my eyes. I begin to hum the tune, as she does, emphasizing parts with a louder and more animated hum.  It is the love I see in her eyes when she knows I am choosing to join her in something that brings her immense joy. 

These sweet spots are not merely a result of “being positive” about the circumstances. They are present to me because I see the reality of this life and sit with it each day—the emotions, the challenges, the suffering, and the stressors present within every aspect of our family dynamic. 

I see the daily reality AND I see so much beauty in moments like these sweet spots. It does not have to be one or the other.  Instead, I choose to inhabit the space of this AND.

Sharing all of this with the cashier would have been long winded and probably more than she bargained for. But her comment gave me a chance to think about our sweet spots (and all the spice that goes along with them).