Op-Ed Social Media (2)

Lessons Learned in the Community Setting

Carissa Howard, MS, CCLS

After spending almost 11 years in a traditional child life setting, nine of those years in a level one pediatric Emergency Department (ED), I found myself curious about child life outside of the hospital. I knew working in a community setting as a Child Life Specialist (CCLS) would look different, but I was ready for a change. As is true with so many of us, we quickly get comfortable on our unit of choice, and our job becomes routine. We may find ourselves merely going through the motions as we do teachings, provide distraction, support kids through procedures, and even provide bereavement services.

The idea of doing child life outside the world of the hospital was unfamiliar and even intimidating at first, but it was also exciting at the same time. I’ve had the opportunity to do child life in two different community settings, first in a palliative care setting and then at a transitional living facility for women and children. Both settings seemed so opposite of the fast-paced world of the ED, where my interactions with families were short and to the point - introduce self and services, provide procedural teaching and support, and then say “goodbye” and send them on their way (usually). I had so much to learn in these new settings - they brought me back to the basics of child life.

As I settled into the rhythm of these community settings, I found myself learning and growing as a CCLS. I thought I knew so much after being in the field for so many years already, but I was wrong. The learning curve was steep and feeling like a new specialist all over again was humbling. As with any new job, I had a lot to learn. I had to figure out how to apply my skills and knowledge in a way that was completely different than I was used to.

Looking back, here are five lessons I learned as a CCLS in a community setting.

1. Keep it Simple

Bigger is not always better. There were days I came in with grandiose interventions and ideas and had a picture in my head of how amazing they would be. It was usually the big, elaborate interventions that fell flat. My patients and their families didn’t need big and over the top; they needed simple. They needed small things that would bring them together. Sometimes it was simply reading a story together and then making a family project together that meant the most. My families didn’t need fancy interventions - they needed things that would help them connect.

2. Don’t be afraid to get messy

I’m not typically one who loves slime or paint or sensory bins, yet in these new settings, these messy interventions were exactly what my patients needed. They needed sensory stimulation and a safe place to get messy and to try new things. I learned that it’s okay to make a mess, and sometimes the messier the intervention is, the more fun the kids would have.

On my first Halloween at the transitional living facility, we made the biggest and messiest sensory bin I had ever seen. We had cooked spaghetti, slime, spiders, cotton candy spider webs, and any other remotely Halloween-related items we could find. To be honest, it was pretty gross. When we brought all the kids into our playroom, the first thing they all went for was the sensory bin. After they’d run their hands through it, they decided they’d dump it all over the floor. It was an absolute disaster, but their laughter and squeals of delight reminded me of how fun it is for kids to get messy!

In my palliative care setting, many patients couldn’t play independently, so I quickly had to get over my own dislike of mess and plunge our hands, mine on top of theirs, into the messy slimy sensory bin. It was often when our hands were buried under the mess, that I got to see the biggest smiles and witness the biggest reactions. The mess was worth it!

3. Relationships matter

In the hospital setting, my interactions with patients and their families were often limited to a few minutes or hours, or occasionally a few days if I covered a unit on a weekend. In these new community settings, I worked with the same patients week after week. My focus shifted from support and procedures to development and family interventions. In both palliative care and the transitional living facility, I was welcomed into family’s homes, into their sacred and safe space. I was invited to get to know the whole family - my patient, their siblings, parents, nurses, and more. My goal was no longer to get in and get it done but to create meaningful moments and interventions that would bring the family together and create opportunities for building their family legacy. I worked with some of my patients and their families for over a year. Remembering the small things like birthdays or upcoming events (a sibling’s recital, a parent’s interview, favorite colors, etc.) meant the world to these families.

Two of my patients who I looked forward to the most each week were children who could do very little on their own. What I loved most about working with these two little boys was including their siblings in our interventions each week. For those siblings, it was finally a chance to play with their siblings, create art, make music, and participate in storytime. This was one of the few times each week where they didn’t have to be responsible or be the helper for their younger sibling with a chronic illness. For 1 hour each week, they got to play alongside their sibling and just be a kid.

4. Child life comes in all shapes and sizes

As I welcomed students and interns into these new settings, they often questioned if what we were doing was really child life. These community settings looked very different from what they had envisioned a child life specialist doing. How was pushing a child on a swing for hours, or going on nature walks, or teaching a mom how to play with her child, child life? Child life doesn’t just happen within the hospital walls. Child life happens best when we intentionally engage with a child, meeting them where they are, helping them to feel safe and cared for, in any setting! Even though the setting was different, the goal stayed the same - to provide developmentally appropriate interventions, teachings, and support for children and their families.

One of the most challenging kids I worked with at the transitional living facility ended up being the child I learned the most from. This little guy was only 3 when we first met and was on the spectrum. Prior to meeting him, I had never worked with a child with autism for any length of time, other than a quick interaction in the ED. The first night we met, he screamed the whole time. I remember feeling so overwhelmed and so helpless as nothing I tried worked. As the months went on, I began to understand his needs and got to experience his pure joy when we found something he enjoyed. Over time, instead of screaming when he’d get dropped off for our playgroups, he switched to crying when he had to leave. I learned how to think outside the box, to communicate with things other than words. I learned how to identify developmental deficits and then come up with activities and interventions that would help each child meet their goals and milestones, teaching parents how to do the same.

5. Sometimes, change is a really good thing

I was comfortable in the ED. It was my home for nine years. I thought I had it all figured out as a CCLS. Prior to working in these community settings, there were nights in the ED when I’d encounter a family with a child who was differently-abled or developmentally delayed, and I’d make my interactions minimal, often feeling like I didn’t know if they would notice I was there or that I didn’t have anything to offer. But stepping out of my comfort zone and into these community settings taught me the importance of slowing down, of connecting with each family. I remembered the inherent value and worth of each patient, regardless of their ability or inability to engage.

I became a better specialist after working in palliative care and at the transitional living facility. I learned to be sensitive to my patient’s nonverbal cues. My patient’s pleasure and discomfort were very rarely expressed with words, but with movements, noises, and body posture. I had to learn to observe, watching for cues as to whether or not my patients enjoyed the activities we were doing. Being in these unique community settings, practicing as a CCLS, reminded me of the absolute value of pure play - laughing, running, jumping, exploring, using your senses - seeing the world through the eyes of my patients was a delight! It wasn’t until I left the setting I was most comfortable in, that I grew the most.

If you get the opportunity to try something new as a CCLS, do it! Change units, work outside the hospital walls, think outside the box. Be brave! As our field continues to grow and expand, my hope is that child life will continue to become more common outside of the hospital setting. There are so many settings where children need someone to be their voice. Where else can we provide developmentally appropriate interventions, teachings, and support for children and their families? The possibilities are endless!