Child Life Specialist Shares How Parents Play a Vital Role as Their Child's Advocate

Child Life Specialist Series: In the coming months, we will dive deeper into children’s expression of emotions, the validation of children’s emotions and experiences (including tears), and what it looks like to advocate for our children in all settings.

By Ashley Pagenkopf, MS, CCLS, Child Life Specialist at Cook Children's

As a parent, it can be difficult to advocate for our kids, especially amid larger systems like healthcare or education. However, it is one of our primary roles as parents.

Recently in the emergency department, I helped a family who had a son that was on the autism spectrum. His mom gave us a rundown of what is helpful for him and asked if we could tweak the room to make him more comfortable. I told this mom later how thankful I was that she asked for what her kiddo needed even though it was outside of our “normal” procedures. This is advocacy.

We have talked in the previous articles about how crying is a positive expression of emotions and that validating our children and their emotions encourages emotional safety. Advocacy and our voice as parents help to ensure emotional safety in our children’s experiences, and it models to our children how to speak up for themselves when needed.

With two kids in elementary school and one in middle school, I have had multiple opportunities to advocate for my girls. The pandemic provided many challenging experiences that none of us had ever navigated, and I found myself desperately needing to speak up for my kids.

My oldest was a third grader at the beginning of the pandemic and absolutely adored her teacher. The weeks following Spring Break 2020 became some of the most difficult weeks for our family. I realized quickly that the isolation from teachers and friends was taking a huge toll on my daughter. I reached out to her teacher and let her know that my daughter was desperately needing to connect with her as the school year was wrapping up and there were no promises of ever sitting back in the same classroom with the same teacher. She rose to the occasion and left several things on our doorstep and wrote letters to my daughter. In the midst of her own challenges, it was difficult for her to anticipate how every kid in her class was coping. As the parent, I needed to reach out so that she would have the opportunity to meet her needs.

Recently one of my other daughters went through a major hospital stay and surgery. I found myself needing to advocate early in her hospital stay. I didn’t want my daughter to have more pokes than absolutely necessary. There were some difficult conversations with the nursing staff, a need for me to understand their policies more and an opportunity for them to provide a more emotionally safe environment. I am grateful that after a lot of conversation, my daughter did not have any more pokes than absolutely needed. That would not have been the story if I had not spoken up.

One of the roles of a child life specialist is to advocate for the patient and family and educate families on how they can advocate for themselves.

A good example is that many kids cope better by watching an IV or blood draw instead of looking away. This can create quite a bit of anxiety in parents who are not certain how their child will do with watching the procedure. If a child ends up needing to watch and successfully copes through the procedure by being still and calm, I will look at the parents and say, “Your kiddo is a watcher. If they need any type of blood draw in the future, it will be best for them to watch.” This way parents have the words and can now advocate for their child appropriately moving forward.

You can practice advocating for your own kids in three significant ways. Use your voice. Use your knowledge. Use your resources.

Use Your Voice

 As I’ve mentioned, it can be very hard to speak up in a situation where you are already anxious and uncomfortable. I feel like most medical experiences can accompany situations at school and other activities. However, when you don’t speak up, something may be missed.

Often kids have experienced a significant loss that affects how they are coping with most of life. Letting teachers or healthcare workers know about this helps them to provide a more emotionally safe environment for your child through compassion and acknowledgment.

If your child is repeatedly telling you about another child at school or has consistent negative experiences, reach out to teachers and administration and ask about that interaction. If you are feeling like you need to address something with a healthcare provider or a teacher, most likely you do. Take a moment to form your words and allow your emotions to be in check, but then speak up. Make the phone call. Send the email. Ask the question. On the other side of you speaking up, your kids will have a more emotionally safe experience.

Use Your Knowledge

We often say this, and it’s true. You know your kid the best.  If you know something to be true about your kiddo that could be helpful to teachers or healthcare providers, please let us know. Maybe you know that your child is anxious about riding a bus so before the next field trip, tell the teacher about this so that she can appropriately address it. It may be that you know that your child prefers that no one counts before a poke. Let us know that so that we don’t count.

The information you know as a parent about your child is extremely valuable in helping provide an emotionally safe space and experience for kids. Without your knowledge, we are missing important pieces of how to best serve your child.

Use Your Resources

While advocating within systems can have its own challenges, thankfully you have resources. At school, there are school counselors and teams of people whose job is to advocate for your children and respond to their emotional and physical needs.

At the hospital, while everyone in pediatrics is partnering to create an emotionally safe environment, there are some specific people who exist simply to help you advocate. Child Life Specialists, Social Workers, Patient Advocates, and Chaplains are a few disciplines who can advocate for you or help you find the language you need to advocate for yourself.

Another resource we have within the Cook Children’s system is the Comfort Menu. The Comfort Menu has its own built-in advocacy. Every child deserves an equal opportunity to have their fear and pain assessed and addressed. Communicate, collaborate, and create a comfort plan that works for them. - The Comfort Menu Mission Statement

Whitney Brosey, CCLS, Comfort Menu Program Coordinator says, “Going to the doctor or getting a shot doesn’t have to be so scary. We want to do everything we can to help make it as easy and comfortable as possible. Every child has different needs when it comes to medical experiences. The first step in creating an emotionally safe experience for you and your child is to communicate those needs to your medical team. That’s why we created the Comfort Menu! It is meant to be a tool for us to talk with you and learn what might help or not help during potentially stressful medical experiences. You know your child best, and we want to create a plan with you that is individualized for your child.”

As a parent, you are a vital part of your child’s medical team and there are resources available to help you communicate with the rest of the medical team to provide the best experience for your child!

It is not always easy to have to be a voice for someone else. Parents have a difficult responsibility to speak up for our children. However, every time you use your voice, your knowledge, and your resources to advocate for the best experience for your child, you are helping them to feel emotionally safe and secure. You are also teaching them how to be the best advocates for themselves now and in the future!

Go here to view Cook Children's Comfort Menu.