Severe Feeding Challenges: The Hardest Part

April 23, 2017 developmental delays, Developmental System, feeding challenges, feeding/swallowing therapy, food issues, oral aversion, oral-motor delays, orphanage behaviors, refusing food, Sensory Processing Issues, speech therapy, undiagnosed SN 8 Comments

We started the adoption process in 2005, right before the big slowdown.

We didn’t end up traveling until 2007, so I spent every free moment reading adoption stories and joining every adoption-related yahoo group out there. I felt as well-educated as one could possibly be.

Unfortunately, there were only the “ladybugs and unicorns” stories out there, you know the ones…. love at first sight, instant bonding, potty trained at a year old, rapid catch up while in China, eating anything and everything, and on and on.

Armed with all of the knowledge I could gather, we requested a child 18 to 28 months. We had three daughters at home, and the youngest was eight years old when we were DTC. We knew so many people were first time parents and wanted as young as possible, so we consciously chose older to give another parent the chance for a baby.

Since our girls were getting older, we also wanted the age gap to be smaller. Honestly, I was looking forward to being past the baby stage, three times was enough. I had envisioned adopting a child that would love any and all food, which would be quite welcomed since my third child had eating issues.

We got our long awaited call with the news that we were referred a beautiful 15 month girl. She ended up being the oldest child in our large adoption group. She also ended up being the only child that refused solid food.

Initially, I thought she was just too traumatized to eat and gave her time. I tried to give her one Cheerio, and she acted like I just put a bug in her mouth. She was unable to suck, and chewed down on the nipple to drink.

After several days, she still refused any solids while the young babies were eating everything. I thought that maybe it was just us and so I asked our guide to see if she could get her to eat something from her. Maybe she would take food from someone that was Chinese? She screamed and cried as our guide shoved food in her mouth – looking back at the video of that makes me cry. We gave up on trying to feed her and just gave her bottles, we knew building trust was more important.

We got home and got into a regular routine. She was only 15 pounds at 15 months, so we gradually increased the amount in her bottles. She was used to eating when the bottle was there instead of when she was hungry. Sadly, she just didn’t understand what hunger was.

It actually took more than a year, maybe two, to teach her to tell us she wanted a bottle. We tried all of the suggestions, let her play with food, put her at the table with us, put her around other kids that were eating… nothing worked. Over the next several months, we graduated to adding baby food in the bottle. She never minded the different flavors, and I felt like we were making some major progress.

We were referred to a speech pathologist as part of her early intervention services, and she was evaluated after being home for three months. The speech therapist said she had never seen a child with such oral defensiveness; and any that remotely resembled my daughter had been abused. This same SP also told me she wasn’t talking yet because I was coddling her.

We promptly fired her. She was the first of many that had no idea what to do with my daughter.

I learned a lot that first year, mostly by my own research.

My daughter had severe sensory integration disorder and global developmental delay.

I felt lost.

There were no local professionals that even remotely knew anything about issues specific to international adoption. We did everything possible that could be done either at home or at a facility.

At one point, she finally accepted a Cheerio that I had crushed and put on her tongue. This slowly, over the next few years, led to one or two finger foods. In the meantime, her bottle now contained a full jar of baby food, formula, vitamins and a protein supplement.

She was happy. We were happy.

But that didn’t stop us from trying to get her to try new things. We discovered that she did not have full control over her tongue movements. She could not stick it out very far and could not make it go up or down. We worked with a speech pathologist for feeding and control of her tongue.

We got some improvement with coordination and she tried new foods. Meanwhile, outside pressure and judgment from others was ever-looming.

People who knew us well would ask us, “Did you try giving her ice cream? All kids love ice cream.” Yes I did, and no, all children don’t love ice cream.

I know they were all trying to help….

Our story has been unfolding over nine years, and is still very much in progress.

She used a bottle until she was seven years old. She ate a few other foods at the time, but her bottle was her safety net, it was packed with calories and at least I knew she was getting what she needed to grow and thrive.

Things went downhill after she gave up her bottle. Her food choices gradually decreased instead of increasing. Fortunately, the five or so things she does eat are nutritious.

We have found that there is a strong emotional component to her lack of eating, and we are exploring that route.

The hardest part of this journey has been the harsh judgment of others.

For the past nine years, this poor child has been in multiple therapies constantly. Friends seem to want to prove me wrong, that – if given the chance – they could make her eat.

My daughter has learned to fake eat, just to fit in. She really wants to eat like everyone else, she just can’t manage to do it yet.

That is what people don’t understand, the desire is there, but the ability isn’t.

Shaming and bullying her will never get her where she needs to be, yet well meaning people continue to do it. I’ve developed thick skin like an elephant by now, but it still hurts.

I hope to be able to write a follow-up of our feeding challenges success one day. I have yet to encounter another family with issues as severe as our daughter’s. But I hope our story is helpful and offers useful suggestions for any other struggling families.

– guest post by Suzanne

8 responses to “Severe Feeding Challenges: The Hardest Part”

  1. Amanda says:

    That sounds like a very difficult journey. Have you read the ashleyannphotography blog? Her daughter had cleft lip and palate and, I believe, ate only pureed foods for 6 years.

  2. Elizabeth says:

    Heart wrenching when you know there is little you can do. I’m sorry she has gone through such a difficult beginning and continues to fight to be normal. Our dd, adopted in early 2007 at 24 mos. was only on a bottle. No solids. It had it’s challenges and thankfully we overcame our struggles. Your daughter is beautiful and it takes courage to take this journey.

  3. Mb says:

    Our son thrived on pediasure and learned to accept food in preschool. Not nearly as severe as your daughter but we do understand.

  4. Maria says:

    Yes, yes. People can’t fathom this. I’ve experienced it, and no, he wouldn’t eat ice cream, or eat for someone else, or eat when he’s hungry. The combination of terror and weak oral muscles meant that he didn’t eat. No quick easy fix. Really.

    You are doing great, your daughter is doing great. Overcoming at her own pace. Thanks for telling your story.


  5. Jeunesse says:

    Thank you for sharing. I felt all these years we were the only ones that it was ongoing, that I must be missing something or doing something wrong. Seemed everyone else I read about was able to overcome it. We are 5 1/2 years in. Our daughters oral aversion is as severe as you describe and therapists and doctors are stumped. And no all kids don’t like ice cream☺our daughter doesn’t drink either though she eats a few mashed foods. She wants to eat, it’s like you said, the ability doesn’t seem to be there. Before she also did not understand how to feel hungry. Still use a g-tube for needed liquids. Same struggles with tongue control, etc. I will keep you in my prayers.

  6. Jeanene says:

    I so hear this…our boy was born into foster care addicted to Methamphetamine…and he still has major issues with SPD in relation to eating. People do NOT get it. He is my 5th child…i have had “picky eater”…this is not just a ‘picky eater”.

  7. Donna says:

    Oh, my yes, we have a daughter with very similar journey. Our daughter’s struggle is very similar. We have been working with a eating clinic in Evansville, in. That have done wonders with her over several years.not all children will eat when they are hungry. This area is very misunderstood. Would gladly share war stories and successes with you about our journey.

  8. Trina says:

    Thank you for this post! Our daughter is almost six, has been in feeding therapy since she was 18 months, and has not added a new food to her repertoire in all that time – she eats 7 foods and has a similar sensory + oral motor delay combination that baffles the therapists. I mostly tire of people telling their own picky-child-who-grew-out-of-it war stories, which, I’m sorry, is not remotely the same 🙂

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