Updated: Oct 12, 2018
In September we turned the page and started a new, yet familiar chapter in our lives. We recently found ourselves back at the Star Institute for a mini feeding evaluation for Charlotte. The decision to reach out for help weighed heavily on Kari and me over the past few months.
Kari and I love food. Before kids, we loved going out to amazing restaurants. We knew the names of local chefs, we could always make a recommendation when someone asked, and it was a central part of who we were as a young couple. When Charlotte came into our lives all that changed, as it so often does when kids come along. We ate at home more and we couldn’t name many new restaurants (at least not any we had visited), but great food was still a huge part of our lives. For many years, Kari made separate meals for us and for Charlotte. However, when Charlotte started feeding therapy we changed our diet so we could work with Charlotte on specific foods and model how to manage them at mealtime. Charlotte learned about new foods and we added some “family meals” to the rotation. In an effort to keep everyone happy, Kari would occasionally still make separate meals. We would share some of the same ingredients, but the preparations would be slightly different. Over the past year, we have recommitted to eating all of the same foods, finding things we could all enjoy and working to add more “grown-up” meals to the rotation. During that year we added many new meals, found foods Charlotte liked and realized that eating the occasional bland meal wasn’t all that bad. This year has been a constant rotation of mostly bland, very easy to chew, boring foods in an effort to “get through” dinner without meltdowns, tears or screaming matches. We know that our lives are different now, we aren’t in our 20s anymore, and finding the latest restaurant isn’t on the top of our list. What we do want, however, is for Charlotte to enjoy meal time, not to dread it.
As you have read in Kari’s last post, summer was difficult. We have struggled with food. Sometimes these struggles have been real, other times we have simply been unable to see the progress Charlotte has made. In either case, we finally decided to reach out to Charlotte’s therapy team and see if we were due for a little check up.
After consulting with Lindsay, the therapist Charlotte worked with the most, we set up an appointment for another evaluation. We spent the past few weeks getting ready for our appointment, filling out forms, keeping track of every food Charlotte consumed for three days (and then three days more, when the first three days turned out to be totally atypical of her normal eating habits) and working up a list of preferred and non-preferred foods. The first time we walked through the doors at Star I was optimistic, thinking we may have finally found the answers to our questions. It turned out that, in fact, was the case, as Charlotte learned amazing skills and so did we. For the past few years, these skills have served Charlotte and our entire family well.
Walking into the Star Institute this time I felt completely different. “Its dread” is what Kari told me on the morning or our appointment when I said I was feeling uncomfortable. I am not sure what we were expecting. Maybe we were expecting them to confirm our worst fears, that we had failed Charlotte. Maybe they would tell us everything was in our heads and she was totally fine. I didn't know which it would be, or if it would be somewhere in the middle, but this time I didn’t feel optimistic. It was dread.
When we sat down in the kitchen, behind the two-way glass, and started bringing out Charlotte’s preferred foods, I was somewhat surprised at how well she did. Even when we got out more challenging foods, she tried them with little complaint. Obviously, this was much different than what we experience at home. This was to be expected but it was still frustrating, knowing that what the therapists were seeing wasn't at all what we had been seeing at home.
As we expected, the professionals told us that they saw through Charlotte’s willingness to eat, and they had noticed our faces as we expressed frustration at her unusual willingness. “It’s the honeymoon,” they said, Charlotte wanted to please and so she pushed through the more challenging foods. Granted, we didn’t take foods she hated, but we did bring foods we had been working on, foods like ground beef taco meat, fresh peaches, and cheddar cheese quesadillas--all foods with which Charlotte would normally overreact.
Well, guess what? They didn’t tell us we failed Charlotte. They didn’t tell us it was all in our heads. They, of course, reminded us of some of the things we could be doing better and how we could better help her approach food.
What we did learn surprised me. While Charlotte has come a long way since her first days in feeding therapy, she still has some oral motor skills she needs to work on. They pointed to the food diary we completed, which detailed three days filled with almost exclusively soft cubes and soft mechanical foods. While we have added a huge variety of foods to Charlotte's diet, they all have something in common. They are foods that tend to be on the soft side, nothing that is too hard to eat, and nothing that requires much effort to chew and swallow. For professionals, this pointed to her still underdeveloped oral motor skills. Moving food around in her mouth with her tongue and using rotary chewing are skills that we need to help Charlotte work on.
It has been nearly a month since Charlotte’s last evaluation and already the little things her therapists went through with her and us have made a huge difference. We have a mirror at the table so Charlotte can work on moving food around in her mouth and she has filled an entire page of new foods she has experimented with. Charlotte has graduated to "Food Scientist" at Star, so she has new ways of exploring foods. Sometimes the foods that go on her "Brag Board" aren’t foods that actually made it into her mouth in significant quantities, but it is still a solid step in the right direction. We all still have a lot of learning to do, but we are so proud of the progress she has made and so thankful for the amazing team we have supporting us.
Charlotte is scheduled for a few more feeding therapy appointments, in which she will continue to work on those underdeveloped oral motor skills, learn to approach new foods with less apprehension, and maybe we will even be able to add some new foods to our rotation. Charlotte may never have the appreciation of food that her Mom and I share, or maybe not the appreciation for the same foods we love, but there is still a long way to go and we will see what tomorrow brings.
We share our stories for a few reasons:
1. It helps us be aware of where we are and how far we have come.
2. We hope that by sharing our stories you know that you aren’t alone in your struggles and help is out there.
3. We want to bring awareness to feeding issues, the importance of proper seating at mealtime, and the necessity of advocating for yourself and your children when you feel something isn’t quite right.
If your child seems to be a problem feeder, advocate, seek help and know that you aren't alone. Help is out there. Mealtime can and will get better with the right guidance and support.