parenting a disabled child

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.

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).