INSPIRATION STORY #3 Ally Carrillo '14: The Gift of Wisdom Through Nora

By Ally Carrillo, SLP 

When I graduated in 2014, I was lucky enough to have a position with fellow alumna, Marla Moore, and her Denver-based early intervention practice, Talking Together, Inc. During my time at CU Boulder, I loved forming relationships and bonds with clients and their families, and knew early on that I wanted to work directly with families. As graduation approached, I knew that Early Intervention (EI) was where I would thrive and be happiest as a new SLP. As it turned out, I would soon have an even closer connection to EI than I ever imagined.

My daughter, Nora, was born at 37 weeks in January of 2016, and appeared to be totally healthy and typical. Then, at 2 weeks old, during a 3 AM feeding, I noticed that she was breathing very fast. The next morning, Nora’s breathing rate hadn’t slowed, so we took her to Rocky Mountain Hospital for Children. It turned out that her oxygen levels were very low, and we were admitted to the pediatric floor. Eighteen days later, after countless tests and procedures, Nora left the hospital with a Nissen fundoplication due to severe GERD, a g-tube due to aspiration, and on full-time oxygen due to lung disease from aspiration and central/obstructive apnea.  It was, needless to say, not expected, and a complete shock to our entire family. 

Thankfully, my amazing colleagues rallied around us, and we’ve had a truly wonderful experience as the recipients of EI services in our home. Our therapists (who include an outstanding occupational therapist, and an incredible infant mental health specialist), have not only provided concrete therapy strategies to help us meet our goals, but have also been pillars of support, kindness, and understanding for our family. As a result, Nora has healed, thrived, and continues to amaze us everyday. Additionally, my experience as a parent in EI has shifted how I conduct therapy in the home, and specifically how I support families.

For one, I no longer tell parents, “That’s really common,” when they tell me a concern or worry that they have that is typical for that age or for a certain delay or diagnosis. I always said this as a way to alleviate and reassure them, and although I still think knowing that you’re not alone can be very helpful and comforting, I also now know how dismissive those words can come across. Whenever a doctor or nurse would tell me that one of Nora’s problems was “very common,” I felt like my worries and fears weren’t being validated. Now, when I’m working with families, and they share something that I see a lot of other children and families struggle with, I’ll say “That’s really common, but that doesn’t make it easy.” I’ve had parents look at me, nod, and say, “Right? I’m glad it’s not unusual, but it’s so hard!” I never want a family to feel like their feelings and worries aren’t valid or important, like I did.

Also, I now try to acknowledge and be aware of how hard seemingly normal or everyday parenting activities and tasks can be for the families I work with. Whether it’s due to “only” an expressive language delay, or a more complex array of problems like Nora had, there is an intense and constant weight that comes with having a child with any kind of special need. Taking my baby anywhere required a very heavy backpack with oxygen, a backpack with a feeding pump, extra medical supplies, and everything else that a new mom carries around for a newborn! It was exhausting, and, when I did get the courage and energy to leave the house, I had more than one experience with strangers staring and/or saying hurtful things to us. A more recent task that reminded me how hard this still is: the simple act of filling out paperwork at Nora’s first dentist appointment.  Having to list her medical history, and her delays, and not having enough room to fit it all in the provided space… it was mentally and emotionally draining.  Even now, after Nora has made tremendous progress, and is off of her feeding tube (!!), she still has delays in gross motor and speech. When we go out to the playground or library, I dread other caregivers asking me, “How old is your baby?”  Oftentimes, Nora will be sitting quietly, or crawling around on hands and knees, while the other kids are running and labeling all that they see, and others will assume that my daughter is younger than their child.  In actuality, she’s either the same age, or even a month (or several months) older. The awkward silence that so often follows this exchange, or the caregiver patting my shoulder and saying, “Well, all kids develop at their own pace,” can ruin a perfectly nice visit to the park.I never really considered these situations and interactions, or the emotional toll they can take on a parent, when I was an EI therapist before Nora, especially for my clients who were “just late talkers.” So I now make sure to check-in with caregivers more often about how they’re feeling, and how it is being a family in early intervention. I don’t assume that every caregiver feels the same weight as me, but I’m now more mindful about giving families a safe space to share any struggles or feelings they’re having, if they choose.  

 

At 19 months old, Nora is now a happy, silly, and hilarious toddler. She’s a new, slightly unsteady walker, and she’s getting more and more confident each day. She’s using almost 70 signs, and is trying new words and sounds on a regular basis. She eats and drinks everything by mouth, and loves hemp milk (such a Colorado girl), grapes, watermelon, yogurt, peas, and crackers. Her best friend is her giraffe lovey, Norman, and she will have him give you high-fives if given the chance. Sleeping alone is NOT a current strength of hers, but all things considered, we’re ok accommodating that challenge right now.  I hope to bring the same comfort, hope, and support to the families I work with that our own EI therapists have given to us. Although I never thought this would be my journey, it has taught, and continues to teach me, how to be the best SLP, and mama, I can be.  

 

 

Thank you for your outstanding inspiration, Ally and Nora!