conquering oral aversions {cleft lip/palate}

It has been quite a while since I did any updates here related to my youngest daughter’s eating challenges. I posted a little something on Instagram last week and thought I should write more here. I know many of you have kiddos with similar struggles and it is helpful to hear you are not alone.

When we arrived in China (almost 5 years ago), I thought she would try new foods pretty quickly. She didn’t.

I thought once she was settled in at home, she’d be ready. She wasn’t.

After several months of no progress, I joked that I was sure she’d eat a hamburger by the time she was 16.

And then years passed. Smoothies and mashed food for nearly 4 years. I stopped joking she would eat pizza one day and came to terms that it was just fine if she never did.

And then things changed. In some ways I look over at her now – eating a turkey sandwich – and I think, “Wow, all the sudden she is eating food with is!”

Aprilfood-01The thing is – she isn’t all the sudden eating with us. It has been years of therapy. Years of getting my hands on anything and everything related to oral aversions. It has been years of second guessing ourselves and wondering when to push and when to back off. She didn’t just wake up one morning and decide to eat a turkey sandwich – it was a long process.

I know there are other parents out there wrestling with similar issues and they are searching for any help. Any answers. Today, I want to share a few tidbits that helped us..hopefully it will help someone else – someone, who like me stays up late scouring the internet for ways to help her child.

Aprilfood-021. Progress was slow. A counselor, who works with kids who have gone through trauma, told us early on that often when a child is making progress in one area, that child will seem to stop making progress or even take steps back in another area. This has been so true for our girl. She made HUGE leaps forward related to physical development soon after coming home. Next, she made some steps forward related to eating. Then eating progress seemed to revert as she tackled speech. Over the last three years, she has made mind blowing progress related to communication. It seemed like as soon as she was right where she needed to be with communication, she was able to start making big strides forward with eating. In the moment, I often did not recognize the different areas she was making progress. It is much easier to see the big picture of it all now.

Aprilfood-042. Progression. The progression that worked best for her was:

  • Getting comfortable looking at food
  • Being okay with food just on a plate in front of her
  • Touching the food on her plate with a spoon
  • Touching the food on her plate with her hands
  • Touching the food to her lips
  • Placing the food in her mouth and then spitting it out
  • Chewing the food, then spitting it out
  • Chewing and swallowing the food
  • Once she was comfortable chewing and swallowing, each day we had her try one bite of something new.
  • Once she could take one new bite a day, we kept increasing the amount until she could eat a meal with us.

I would say each phase took several months. A couple of the phases took an entire year.

Aprilfood-05

3.  Never ‘forcing’ her to eat or try things. I lost count of how many people suggested she was just being stubborn and we were being too easy. Unless you are in the field of oral aversions and childhood trauma (as a parent, counselor, therapist, doctor), I don’t think you can truly understand how traumatic eating can be for a child with very deep fears. It is easy to pass judgement and a lot harder to sit down and really listen to a parent who is walking through difficult stuff with a kid. My girl could only drink smoothies from a special bottle for a few years. I got all kinds of not-so-nice looks from other adults, who saw her drinking from a bottle. Enter Taylor Swift and a constant Shake It Off in my head.

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4. We tried a few different methods and read several books, but none were a deciding factor of change. A few that we gleaned wisdom from were Love Me, Feed Me, The Connected Child, Chewy Tubes (these did help her build jaw strength, we tried the Jaw Rehabilitation Program – great suggestion by her speech therapist).

All in all – it took time. It took patience. It took being very intentional and not just giving up. She still struggles. She still doesn’t like to try new food. It still takes patience, being intentional and not giving up. However, she has come incredibly far. I am so proud of her. She is pretty proud of herself too. And she should be!

Aprilfood-06For more posts related to her food journey, visit my Instagram hashtag #mylittlefoodwarrior

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  • Mrs Mike - I wanted to cry as I read your post, as I can relate on so many levels. My youngest child has bipolar and manic depression disorder, but is also very border line for aspergers. As such, he has had aversion to certain foods his entire life. Until about a year ago, he couldn’t eat any meat that had a bone in it. He didn’t eat ‘shiny’ foods (fatty foods). Some foods had too much texture for him and would literally make him gag. I kept hearing how I was babying him because he was the youngest. Many times I’ve heard I just had to “make” him eat what was on his plate. At first it made me angry. They didn’t know how much we struggled his first few years of life. When he was finally diagnosed at age 8 with bipolar and manic depression, helpful family members finally backed off some. But the world really feels it has a say in how you parent your kids, whether they know what’s going on in their lives or not. Very few people realize how much a struggle a simple meal out in a restaurant could be. At almost 14 now, he has come SO far. His therapists have helped him overcome so much and taught him coping skills to better help him manage on a day to day level. Just the other night, at his 8th grade dance, he sat through fireworks for the first time in his life without having a complete panic attack.

    So I just want to thank you for your post. It really touched me, and I’m so happy that she’s reaching new milestones.

  • Jamie Burdorf - Thank you for this! One of my twin boys was born with kidney disease and a lot of times they have oral aversions because they always feel sick to their stomach and don’t eat. My son, Blake, who just turned six is FINALLY eating about 75% of the foods we put in front of him (still doesn’t like carrots/celery/other hard veggies). It is so hard to comprehend why they can’t just eat because it is something so much deeper than that. Thanks again and YAY for progress!! –Jamie

  • Kim B. - She is so lucky she is part of a family who works so hard for what will help her develop the best– the patience and determination it has taken, and keeps taking from all of you. You guys are quite the team!

    And bless you for sharing the information in the hopes that it can reach someone else who is struggling with how best to help their child. You are always so generous.

  • SentSue - You,Ashley are an awesome momma! God has blessed you with incredible patience. So glad she is doing well and has found you as the family He planned for her.

  • Crystal M - Thanks, Ashley, for the update on your daughter! I was thinking about you & her the last couple months. Our daughter has started eating too! Praise God for continued healing and growth in both our families!

  • Angela - I don’t have children with food aversions, but it is fascinating to hear about/learn about these issues. Out of curiosity and desire to learn, are her food aversions due to her cleft palate or does it stem from time in an orphanage? Or maybe both? Do you have to make separate meals for her now that she eats solid foods? Or just encourage her to eat as much as she can handle out of what is presented for the whole family? Again, I don’t ask out of judgement, just out of genuine interest.

  • Byron - Blessings!

  • Karen Choat - I read your post about about working with her on various challenges and I read another blog 71 Toes, and how they work with their youngest who is going blind and I marvel at how God has placed these special children with exactly the right parents to help them navigate life.

  • Stefanie - Thank you so much for sharing on this, friend. So little is shared and yet it’s so difficult as a mom to struggle with a child with oral aversions and anxieties. I can only imagine how incredibly proud you are of your girl – amazing how far she has come! Way to go, mama!

  • debi - she is very blessed to have found a wonderful family who love her and are willing to do what is best for HER, without judgment or pressure, in her own time. you are a beautiful example of unconditional love.

  • Kati Wallace - Hey there!
    Thank you for posting about your daughters food struggles. Our China girl has been home about 4 1/2 years. She’s come a long way, but still only eats select foods. The jaw rehabilitation program you spoke of sounds like it would help her. Did you have a therapist help with that or was it something you could do at home with her?
    Thanks!! Kati

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