J's Feeding Therapy

Today was a good day. I brought french fries to J's feeding therapy and watched as she licked and pretended to chew from behind a magic mirror.

I decided today that part of this blog will be used to call attention to a problem that is becoming more and more prevalent. My daughter, almost 3, is in feeding therapy. She DOES NOT chew her food. She has what is called tactile defensiveness. More to the point, she has a problem with texture. Hates anything crunchy or lumpy in her mouth. Will not touch certain foods. She will only eat smooth things like yogurt, pudding, applesauce, baby oatmeal, etc. For the longest time, she was eating ONLY baby food. Pureed jars of baby food.

I noticed something wasn't right when she was about 8 months old. She had no interest in cheeries. Wouldn't touch them. She would gag if I put them in her mouth. She would gag if they were in MY mouth. I tried other things like cheese or pasta or even bread, but she wanted nothing to do with any of it. My pediatrician kept saying it's no big deal. She'll get there. Give her some time. So I did.

On her first birthday, things were no different. I wanted so bad for her to taste a piece of her yummy vanilla cupcake but she refused. Wouldn't even lick the icing. Any time I tried she would scream and cry. Needless to say I never got the face-full-of-cake picture I was hoping for.

Still my pediatrician said, "don't worry." She was gaining weight so there was no cause for alarm. She's just picky people tried to tell me. I knew it was more than that. She didn't like the way the grass felt on her bare feet. She hated finger paint and sand. She would have a tantrum if the sun was in her eyes. It was drivng me crazy that these things were upsetting her and everyone kept saying it was normal.

So, at her 2 year checkup with the doc, I said I wanted to see somebody. He suggested a feeding therapist. I went to see her and she also suggested getting her evaluated by Early Intervention, which I did.

She qualified for both and has been receiving occupational therapy and feeding therapy for a little less than a year now. The progress has been EXTREMELY slow going. The worst part for me is not having anyone to talk to. I know absolutely no one who has ever had to deal with something like this. I searched the web but the moms I found had kids who were either autistic or had downs syndrome and my daughter has neither. In fact, she is super bright. And that's part of the problem.

I could never trick her or bribe her or force her to eat. When I did get past the fear and anxiety and get her to eat a spoonful of macaroni and cheese or pastina, she would gag and throw up. It is a vicious cycle.

I've gone from feeling hopeful to desperate and finally back to hopeful.

In her session today, she actually tried french fries!! A HUGE step! She put them in her mouth and pretended to chew. She would suck on them and even break off small pieces and put them in her mouth. It might not sound like much, but if you know how we've been struggling for the past year, you'd be proud.

The tricky part now is achieving success at home. She won't do the same things for me that she does for the therapist.

So I'm going to keep updating you on J's progress and if you know anyone out there going through the same thing, please tell them to come check me out. Maybe we can start a support group or something. Lord knows I need it!!


Wendy said...

I can't believe I didn't respond to this already but i think your daughter & my son are going through the exact same thing - in fact, at one point last fall, we were admitted to St. Joe's in NJ for their pediatric feeding clinic but the stinker started eating LITERALLY that day - so we have kept that as a last resort but let me tell you, I understand what you are going through - it is very very very hard...

Lisa said...

I wanted to say that while my daughter doesn't have the feeding issues that you mentioned we did/are dealing with PT for a condition called torticollis. Her therapy has been slow going as well (she's been in it since she was 6 weeks old -- she's 11 months now). In the last few months I have seen a dramtic improvement but it's been a long haul for me one that I have felt I have been going alone. So even though I haven't experienced your dilemma I do understand feeling alone and needing support. So you have mine and good luck with your feeding therapy.

Anonymous said...

There must be another reason for your daughter's defensiveness. Has she had a full work up by a gastroentrologist, ENT, neurologist, etc. I know that this sound scary, but you can't fix a problem when you don't have all the facts. I am a speech pathologist for 23 years specializing in birth to five children. I would strongly recommend Children's Hospital of Philadelphia if you are in south jersey and St. Joe's if you are in North Jersey(I prefer CHOP), but both are great. You need to do this as soon as possible so that you can get the big picture. Do you have an OT that is working on a sensory diet? Is the ST/feeding therapist working with you and your child together? Good luck.

Em said...

I've found you!!! I have the **exact** same problem with my daughter... She was in feeding therapy too and will still only eat pureed/smooth foods (eg, yoghurt, custard, pureed fruit and vege). She is now 3.5 years. I've basically given up... but would love to share ideas/thoughts and commiserate with you. You can read more about my daughter on my blog.

Meredith said...

I don't have the exact same issue, but I wanted to let you know you weren't alone! My son (16 months) has been in PT, OT, and seeing a developmental counselor with Early Intervention for the past 6 months. We had some feeding issues too with oral aversion for a few months and had OT for that as well.

I tried to find other moms dealing with special needs kids and failed to find more than one in Real Life who would talk to me.

Anyway, just wanted you to know you are not alone!

Anonymous said...

I'm glad I found this. I feel exactly the same way so alone. My daughter is 1 yr old and I'm going through the same thing except the opposite. My child will only eat crunchy things and her formula. She cries when I come toward her with a spoon. How are things with your child now?