MARCH OF DIMES | MARCH FOR BABIES | NACERSANO

Feeding Therapy

Our son, who is now 5.5 years old, was diagnosed with high-functioning Autism over a year ago. After applying for DDD services and getting all of that going, we recently started feeding therapy. Our son has extremely limited food choices and is super picky due to textures. Our ST gal has some really creative ideas. They are reading stories about carrots, painting with carrots, looking at carrots of all different sizes, and for now working on making "the crunch" sound and holding food in mouth for a few seconds. We have "I like it" and "I don't like it" colored bowls (red and green). We are working up to chewing and swallowing. We did the same for grapes this past week. We are seeing some progress, but it's slow. We haven't gone G-free because I really want to work in different foods in general before making such a switch. I'm sure there was much discussion in older threads. Anyone else experiencing this?
lvazquez

62 Replies

  • CharlieAllene's mom

    In reply to lvazquez:

    I feel you on finding a feeding therapist. When we were considering the intensive feeding program, the woman who would do most of the work with Charlie actually fought with her at the intake evaluation. Who argues with a two year old? I want to say that Charlie won because she threw the food at the feeding therapist. Afterwards, Charlie was so traumatized anytime she would go back into that room for a speech eval she would say, "No eating!"

    My recent oral surgery has really given me insight into Charlie's feeding issues. We had been baffled by them for sometime. We assumed it was sensory. But the sensory aspect is considerably better. So, since I've been existing on foods that don't require chewing, I've noticed that Charlie will readily eat some of these foods. We also wondered why she always pulled the cheese off of pizza and ate it after a few regular bites. Turns out, most of Charlie's speech and feeding problems at this point are motor based. She has a hard time chewing. Because of this, she needs much more speech than she is getting now.

    After this summer, we are headed back to working on feeding. We are going to have her therapy done at UVA. Most of the speech therapists there are fantastic with Charlie. They've evaluated her for the developmental pediatrician every few months since she was a baby. They know her. Hopefully, we will see good things. The drive is almost two hours away... but, there aren't many other options where I live. We exhausted the ones we do have.

    Thinking of you and I hope this new therapist works out.
  • lvazquez
    Last Fall, we had ended feeding sessions with a therapist who was obsessed with chocolate chips. I don't think I'll ever look at chocolate chips the same way again! So, we took a few months break trying to find another clinic with an opening. We had found one, but then got cancelled a few times. Another clinic where T was receiving speech had an opening for feeding, so we made the switch. I felt a little awkward not having given the other person a chance, but it had been so long, I just wanted to get going again.

    I don't know, but I feel like feeding therapy is really personal. It involves trust and I think you need to try and build a relationship with a kiddo to have a positive outcome. We had a total of four sessions with a few Monday holiday cancellations and out of town on our part. Right after the first two sessions, T threw up in the car on the way home! He didn't eat anything unusual those days in session. I wondered if he was reacting to the session? Sort of curious and I wondered about some other things. Dumb me, I didn't sit in on the sessions as I was trying to give the therapist some space. Big mistake. I suspected that the poker chips he uses with all of his clients weren't clean or being sanitized. Maybe those were the culprit? I suggested they be cleaned or sanitized. I think they got rinsed with warm water. T told me that there was no paper towel down on the table or kitchen towel. Could have been the table too. With feeding, I never heard any mention of hand washing either.

    On one occasion, I brought items for Ants on a Log, again. I brought Rasinets because T isn't eating plain raisins yet. Well, he made a food art face with apple slices and marshmallows (provided by the therapist), but I didn't see the celery or Radinets. When finished, I asked how the rest went. He told me that T wolfed down the Rasinets right away. Really, you just let him down the whole container?! Usually there are leftovers in the cooler. When we got to the car, I checked and I didn't see any celery stalks. I asked T in the car what had happened to the celery? He said the therapist ate it. Um, I get that feeding might be modeled, but all of it? I thought, wow!

    On a regular speech day, there was some discussion during session. T was asked about what he packs for school lunch. T was not answering. Yeah, because he doesn't pack a school lunch. That's a reminder of all things bad that happened for him at school. He attends virtually now and he has lunch between 11-11:30 a.m. depending on our therapy schedule. T eventually shared what he packed and the therapist said to him, "Gosh, that's really unhealthy." Twice. I couldn't believe it! Yeah, no joke, that's why we have feeding therapy! Okay, let's make a child feel bad. Good way to go! Grrrr!

    T can talk a lot about his school program, subjects, and teachers. At one point, a question was asked, T was attempting to change the subject, but the therapist would not allow him to move on until he answered the question. It was turning a little into a power struggle and that's when I knocked on the door to interrupt. I told therapist to ask some leading questions and gave a few hints. The therapist was so rude and said, " Well, I don't know what he does all day! He won't answer me." That was it. I closed the door. I heard him eventually sort of take my advice and T answered more school questions. However, my mind was already made up. I don't like how my son is practically shouted at during sessions. He's not hearing impaired. I always sort of laugh in my head when people feel like they need to talk louder to Special Needs kids.

    Anyway, I was able to get back with the previous clinic. The one that I hadn't tried because we were cancelled a few times. I was so hot to trot that I didn't give them a chance. We met our new therapist this past week. There were no weird faces or eye rolls when I mentioned involving children's books that discuss food and she was receptive to my suggestions too. Best of all, it's going to be in-home, so we can really cook more. It's almost too good to be true. I hope it lasts! This person came recommended by two other families I see weekly who also work with her, so I'm going to be on my best behavior:)
  • CharlieAllene's mom

    In reply to lvazquez:

    That's awesome that he's been asking to try stuff on his own!!!

    I hope the feeding therapist works out for you. I have my fingers crossed.
  • lvazquez

    In reply to 99days:

    It's taken a few months, but I have finally found a reputable feeding therapist with an opening. It's at 8 a.m. I figure we'll just really focus on more breakfast type options. Maybe work in some whole grain items. OMG, I am still having chocolate chip flashbacks. I see packaging mentioning chocolate chips and it just gets me thinking about our last feeding person. Yikes! We were supposed to start yesterday, but something came up on her end, so next week it is. I've got everything ready to share like usual. The really interesting part here though is that since we've been participating in this research study, T has been willing to try some foods all on his own. Over the past few weeks, he has requested Pom juice. Yep, it's a sponsor of American Ninja Warrior. I'm so using that to my advantage. He's had two little 8-10 bottles so far and loves it! He has never eaten the crust on bread and he ate the whole piece of peanut butter toast! He wanted to try Domino's pizza and loved it (and ate a bit of the crust). Tonight, he ate a few cubes of baked chicken. I can't believe it! When he ate some cereal a few months ago and helped himself to a yogurt, I almost cried. Not because they were finally foods he was willing to eat, but because I know that he won't starve as an adult . . .
  • 99days

    In reply to lvazquez:

    I'm so sorry Lindsay. It is really hard to find the right match with people when it comes to feeding. I hope you find the right fit.
  • lvazquez

    In reply to CharlieAllene's mom:

    Thanks for your support on my blog too. I am hopeful we'll find someone good. I'd love to find a therapist who can do in-home:) Wishful thinking I know, but maybe there will be an opening somewhere soon.
  • CharlieAllene's mom

    In reply to lvazquez:

    That's so frustrating. I hope you find someone that is a good fit. I'm sorry you hit a bump in the road.
  • lvazquez

    In reply to lvazquez:

    We had 6-7 sessions with the newer feeding therapist. It seemed like it was okay, but then little things were starting to come up. Long story short, we are searching for yet another feeding therapist.

    Lindsay
  • lvazquez

    In reply to 99days:

    Cassie, it's so cool that he's reaching for those li'l tomatoes when you venture into your garden! I do have plans to start with one vegetable. Feeding gal really wants us to get to an orchard. We'll see. It's too hot where I am to wander an orchard for fruit. Maybe later on this Fall. T did eat (3) very tiny pieces of steak over the weekend! He about choked on the last piece, but was okay. Had to tell him and tell him to chew, chew. Trying to get him to eat meat. It's so hard to stay nonchalant when they do eat a new food. They are watching us for a reaction. A behavior specialist we worked with a few years ago asked me what our goal was with feeding. We just wanted him to eat and if he was more willing while watching tv, we went with it. Over time, we just worked up to limiting TV time during meals and getting him to stay in the kitchen near the table. It's 3 years later since we've started therapy and now he eats every meal at the table. An additional goal now is to get him to stay at the table a bit longer and talk more while everyone else finishes. My kids love the Kratt Bros. too:)

    Lindsay
  • 99days

    In reply to lvazquez:

    I don't know how I forgot to respond to this! Sorry. We've had a lot of family over this summer and constant stuff going on. It sounds like you have worked really hard on getting T to come to express his likes and dislikes in foods. It is amazing how many people really push it with their kids and don't let them come to it more naturally. We continue to offer it and encourage smelling and a little lick if he is nervous. It is amazing how much progress those little steps can have.
    All of those tools you have used are a great idea too! Bruce isn't very motivated with stickers at the moment so we've tried other things like tiny plastic animals for potty time. We have backed off from it for now though. I think all the attention was making him more stubborn and frustrated.
    I try to introduce new foods by eating them in front of him and not offering them at all. He gets more interested in them for some reason. So oppositional! The garden has gone crazy and he's eating little cherry tomatoes right off the plant. That is the best to see him eat something with a tougher skin and actually swallow it. We are still going to his OT and she's been working with wiggle seats and tongue exercises during the feeding part. He needs to build up his strength still in his tongue.
    Don't you love it when they finally love a new food. Even if it comes only once in a while. Bruce will associate foods with certain shows even. Bagel and cream cheese goes with Wild Kratts (the raccoon one). He's so goofy. Still a focus on tv here, but I hope we get to that place where you guys are with less tv during feeding time.
    If you want to start a garden, pick one plant that grows easily in your area and start with a small bucket. It would be fun for T too.
    Cassie
  • lvazquez

    In reply to 99days:

    Cassie - You were a teacher too? What grade(s) did you teach? I taught high school French for 10 years. The last 6 of the 10 were part-time. Now I'm a SAHM and both of my boys are learning online. We did public school with my older son for a few years and got through full-day Kinder with T, but it was very challenging (see older blog posts). So, when we initially started feeding therapy, it was in-home. T was 4.5 yrs old at the time. The therapist observed a meal with us and because she was also his speech therapist, she already had established a bit of a relationship with him. I think that helped A LOT. She also used childrens' books to help give the food item some context/visual for the kiddo.

    Starting off slowly with new foods, we used "I like it" and "I don't like it" cards and bowls. Green was a plus and red was a no. We started using the kiss, lick, bite, chew, swallow. He was kissing a lot of foods and getting him to lick unfamiliar ones was a challenge. They worked at our kitchen table for about 45ish minutes and took breaks in between. She had all kinds of apps on her iPAD that he loved to work for and earn (3-4 minutes), then resume. She also used a token board at times. I made my own with old checkers, half of a binder, and velcro stickies. I use that a lot with school work too when I need it.

    T has autism. He was constantly moving around and at first, getting him to remain in one stop for a given period of time was super difficult. We had ABA training after we received the diagnosis. The folks at his school not so much and it made Kinder a very long year. We had to decide what was most important to us: eat at the table or just eat? We wanted him to eat in general and it didn't matter to us if he ate at the table. Doesn't go over so well at grandparents house, but we've made progress since then. We did the same. He'd tend to eat more when a show was on, so that's what we did. I think when he started to show interest in other foods like mac n' cheese and spaghetti, we moved him to the table because it was so messy. He'd wander a bit and come back. We slowly worked up to having him sit at the table and join us. A few years later, we can all sit at the table and eat a meal and the tv is off. It's wonderful. We can go to a restaurant now too. At the moment, he only likes Chili's.

    We've had two more feeding therapists since then. The one we were seeing last year was fabulous too! She used the iPAD a little, but her office had other cool games and things that we didn't have at home. She really worked on chaining with him. T worked well for those and she also had a calm voice and was really positive. She is expecting her first baby this Fall and we decided to make the switch while we could still grab an opening at another clinic. Our new gal has over 20 years experience. She is big on the whole grain thing. We've made a few items with her so far. She tends to put chocolate chips in almost everything. It's kind of weird. T doesn't need it.

    I definitely rotate the breakfast options too. I have the portioned bowls and we used those for awhile. He seems to acquire a new food every few months, so while it's not happening super fast, I'm just happy he's adding something new here and there. It takes time I guess.

    I think we all feel like that at times. It's so easy to be hard on ourselves. You are doing a good job:) Your variety sounds good to me! There's a lot of varied fruits in there! I need to start a garden. That was suggested to us as well. She really wants to focus on where food comes from. Okay, I guess . . . I'm more 20 years down the road in my head sometimes. It's more important to me that T knows the grocery store well, can shop for the food he is willing to eat/prepare, pay accordingly at checkout and not get jipped, leave said store with ALL of the groceries he's purchased, and make it home in one piece with those items.

    Lindsay
  • 99days

    In reply to lvazquez:

    Lindsay,
    It sounds like T is really making progress with preparing food. That is so awesome! Bruce will help make a smoothie, but other things don't seems to hold his interest. He doesn't seem afraid, just not interested enough to choose over playing. What has helped you guys the most from feeding therapy. Does T willingly do the practice? Bruce tends to get upset or not want to "practice" when I try. What is your feeding routine? I will let Bruce know that we will be eating in a few minutes and have him set up his little table in the living room. He'll pick a show while I prep the food. I will give him two options for the main part and a few for the fruit. He will usually eat most of the fruit and only a few bites of the rest.

    It is so hard to find food that he will consistently eat. It is so funny how bad his meals look. They at least include fruits that he'll eat (nectarines are a new favorite, blueberries, watermelon, grapes, strawberries, and bananas). Each day is a different choice. I was so surprised that yesterday he actually ate the homemade zucchini bread that I made! It was zucchini from the garden too. Our garden has helped quite a bit. Cherry tomatoes, zucchini, blueberries, strawberries, sugar snap peas (tries but can't seem to swallow).

    I was a teacher and my day felt so structured and in control. With a 3 year old I often feel like I am just trying to make sure we get out of the house and move our bodies so we don't get bored. This doesn't always create the best food situations. I bring a good variety, but everything is more exciting than eating. At home we do best if I put on a tv show and he will sit longer to eat more instead of run away to play. I don't always feel like a great mom, but it seems to work for him. Not the best long term solution though.
  • lvazquez

    In reply to 99days:

    Cassie - Feeding time can be stressful. I'm making meal plans and then I stop and think, "What is T going to eat?" We are always having to consider the meals for him and it's exhausting. T was a 34-weeker. He'll be 8 in another 2 weeks here. He is tall and weighs more than his older brother! We kept him on formula a little longer because he had absolutely no interest in the baby foods. Once he discovered those puffs, he was more curious about foods. At the time, we didn't understand his sensory needs. Meals were hit and miss. We found out that he liked pizza, but only certain brand, Mac n' cheese, cheese, chocolate-banana milkshake, and hard salami. This was pretty much his diet until we got his diagnosis and a variety of services started for him. We have used a Z-Vibe in feeding therapy to awaken his mouth. Sort of helps.

    Since the feeding therapy, we've been able to add similar to what you have mentioned: pancakes, waffles, some cereal, cheeseburger, muffins, orange yogurt, quesadilla, PB&J (no crusts), tortilla, taco shells, grated cheese, peeled apples. He likes treats and we really make him earn his dessert. We've done a lot with food groups (Food Parade). I used to sneak kale or spinach into his smoothies. Now, he does it himself and that's huge. Willingly drinking water is another one we have added to our list. We invite him to help in preparing our meals too so that he is smelling what we are making. Running away to bedroom is not an option. He has to stay and describe to me why it's "gross" or deemed unacceptable. T likes to cook and so we are using that to our advantage. Some might say that it has been a slow process and at times it has felt that way. There is more progress to be had for sure as his list is still quite limited. He's making progress in his own time and I'm learning to accept that:)

    Our feeding therapist is really obsessed with whole grain and healthier options. I get that, but I just want him to eat in general.

    Lindsay
  • 99days
    Hello! I'm new to the group. I have a 25 week preemie that is now 3.5 years old. He too has feeding issues and has since day one. Each step was hard for him to transition. At least now we are mostly done with the chew up and spit out food. He only seems to do that when putting too much in or extra crunchy non-dissolving foods (carrots, snap peas, nuts). He is willing to eat some foods but his volume is so low.
    Do any of you get excited to watch other kids eat. I feel like a nut, but my friends' kids eat and I just keep handing them more in amazement of their intake.
    Bruce is still supplemented with Pediasure 1.5 (two bottles twice a day about 8oz each). He's still small, but finally on the charts (about 7%).
    We go to occupational therapy and were going to feeding therapy before that. We have been trying the jigglers massagers, the sucker and tongue exercises and other tongue strengthening exercises. Hopefully he will be able to swallow better.
    Does anyone else feel like a crazy mom when feeding their kid? Our foods consist of fruits (at least healthy) chocolate, milk, tortillas, cheese, mini pancakes, and other soft and usually not healthy foods. Our quote is usually, "calories in!" I think it just makes us feel better.
  • Hunter and Randi's Mom

    In reply to CharlieAllene's mom:

    Lindsay - I hope they get the toaster soon. Why do these things take so long??? Good luck with the waffle trial!

    Rebecca - I am so happy that Charlie is doing better! That is really great! Hunter really likes strong flavors too...spicy mustard, ginger, garlic. Hunter doesn't have sensory feeding issues but let me know if you need any more tips on oral motor feeding related exercises. I can think of a few more candy-related exercised now that Charlie is a bit older. I used to joke with our feeding therapist that, with all that candy, she must have had a deal with our dentist.

    Marissa
Related
Related Tags