Meet Amber and Jax Mieras. Amber is the Pillar Chair for Family Support and is also the devoted mother to nine-year-old Jax, who has Down syndrome. We invite you to join us on their PFD journey and follow their compelling narrative describing the intricacies of Jax’s care. Read Amber’s introspective reflections and see the inspiring results of parent-directed care. View Chapter 1 of their story here and Chapter 2 here

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Chapter 3: Reflecting on our outpatient program experience.

I have reflected a lot on our experiences with the outpatient program and I realized there are several things I would have done differently and several unexpected lessons I have learned.

Initial goals and expectations

Going into the program I was thrilled with the goals I had brought to the team. Goals such as: reducing tube feeds by 25%, increasing the variety of foods and textures, and becoming more independent with feeding. I also threw in there, enjoying the meal experience more. Yes, that last one sounded “nice”, but really, I was focused on the volume decrease and food variety increase. I learned quickly that for my first few goals to be met, the ones I prioritized least would be our greatest successes.

Shifting my focus and learning

While our entire team started with the same focus on the goals as I did, we quickly learned that Jax wasn’t ready for the direction we were going. It took some time to wrap my head around the idea that we weren’t failing, we were just having to focus on the food experience and set volumes and variety to the side. The best thing I did to shift my focus was to create a Milestone Notes page I taped up to my bathroom wall so that I could add something each night. The first few days were simple things like “Sat for 5 minutes.” “Ate without any rewards”. “Put spoon in mouth independently”. “Laughed and smiled during the meal”.

As we continued, amid the most challenging days I continued to add any daily success. Some were great milestones that only happened once like “licked crumbs”, while others became more common without me even realizing it like “sat at the table even when not eating”. In our final weeks, I noticed the milestones became behavior changes I couldn’t have imagined. “Didn’t want to end the meal, having so much fun”. “Showed pride in completing a serving (1 tbsp) of his favorite food”. “Felt confident and unafraid when tasting each food on his plate”.

After our final intensive week, I sat and stared at my list. Very few milestones had anything to do with the goals I planned to focus on the most, but the milestones he met were not only necessary for us to continue our journey but also life-changing.

Engagement and communication

The second thing I learned was that Jax had to learn how to enjoy a meal without the distraction of rewards and games, and I had to find out how to engage him more. One day, he was acting out a movie at the table, which he loves to do, and I ran and grabbed his communication device. I know this sounds awful, but before the program, I was so focused on getting him to take bites by distracting him, that I never gave him a chance to sit in his thoughts, “talk” with us, and listen to what he had to say.

Adding the communication device was a game changer. We have been using it to talk about movies, play guessing games with animal sounds, practice numbers and more. For the first time, Jax was an active part of the meal conversation, and honestly, so was I. I wasn’t stressed about how long he would last at the table, how many bites could he get, etc. We chatted, we laughed, and we listened.

Bonding and transforming our relationship

Finally, the biggest surprise from the program was how my relationship with Jax changed. We have always been close and we have a ton of fun together. He trusted me with so many things, but I never realized how much he didn’t trust me at the table. I was the primary feeder at each meal I was the one thrusting food towards him, begging him to take bites, celebrating when he did, and quietly crumbling during the meals he didn’t. I was the one who asked him to do a task he feared so much multiple times a day, and not meaning to, putting a ton of pressure on him during the entire meal.

About halfway through the program, he finally felt like he had a say in the meal, was using his device to interact with us, and was having fun. At this time he started playing jokes on me…taking my spoon from my hand and stealing my bites. He used his device to make me laugh. And at one of our last sessions, when he wasn’t feeling well and didn’t have the energy to eat, he came and sat in my lap and cuddled with me. My son came to me for comfort while eating…this had never happened before. It melted my heart. He didn’t feel me pressuring him, didn’t feel my anxious energy, didn’t want to run away from the table. He just wanted me to hold me while we continued to sit at the table.

Jax and I have bonded so much more through this program. We went through something few parents and children will ever experience. We experienced highs and lows together, exhaustion, milestones, moments of pride and nervousness, and we came through stronger on the other side.

Adjusting to our new routine

We are now transitioning back to our normal feeding therapy routines which has been an adjustment. I keep having to remind myself that we went through almost a year’s worth of therapy appointments in 6 weeks. Our progress has slowed some, but we have maintained the joy of the meals. Our GI doctor put it best, this program was intended to create “sparks” in his feeding progress, and we will continue to work on the rest.

Overall, this experience was amazing. It was the hardest thing I have ever done. It pushed me in ways I could never imagine. I can’t believe Jax stayed positive through so much of it and pushed through. He is stronger than I ever imagined. While the skills we left with weren’t everything I expected, they ended up being so much more than I ever could have hoped for. Our meals at home are calmer, we are laughing, and my son is a closer part of the family during meals. Jax and I have a closer bond and trust each other much more now. I truly understand the gifts of peace, joy and hope during the meals, and I know in time, our volume and variety will come, but for now, what we have is amazing.

Find questions to ask providers when seeking treatment for a child with pediatric feeding disorder here.