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I want to thank all of you who sent sweet comments, Facebook messages, emails, and more about the Autism post I wrote. I have read every single one, and I promise I will reply to all of you, I just need more time. Thank you for caring.
Adam’s appointment is scheduled for March 19th and I will try to keep everyone in touch with what’s going on.
I get asked quite often about Adam’s feeding therapy. What does he do there? How do they help him? How is he doing? I thought I would write a post about each type of therapy he’s in to explain a little about what he’s going through, and the things I try at home to help him as well. You can find out more about Adam’s problems here: My Little Boy is in Therapy.
The first therapy he started was feeding therapy. Adam was only in the 5th percentile for weight because he was not eating enough. When people see Adam eating they say to me, “See? he eats!” Of course, Adam eats, if he didn’t he would be in the hospital…or worse.
Adam eats, but the problem is he doesn’t eat enough. He doesn’t eat like normal children. And no this feeding disorder is not called “being picky.” Adam is not just “a picky eater.” He barely eats enough to be healthy and to help him grow. That is the difference.
The thing I’ve learned about Adam and his feeding problems is that every day is different. Just because he might try a new food, or like a food today, does not mean he will try it again or like it tomorrow… or next week. You just never know what he may or may not eat. Every day is just trying to get him to continue to eat and try new things. Every day is a struggle.
So what is feeding therapy? Feeding therapy is something we go to weekly to help Adam learn how to eat different textures and new foods.
I found a good definition from this site and thought I would share it:
“Pediatric Feeding Therapy is a combination of treatments that help children with feeding disorders. A child with a feeding disorder has difficulties related to eating or drinking. There are many different types of feeding challenges, and no two children have the exact same one.
For example, some children do not eat anything at all. These children may be fed through tubes. Some children eat very little and do not gain weight or grow. Some children do not have a healthy or balanced diet because they only eat a few or certain kinds of foods. In some cases, a child may have behavior problems during meals that cause mealtime to be very stressful for the family. Other children have problems with chewing or swallowing. Finally, medical problems such as vomiting may play a role in a child’s feeding disorder.”
Do they force him to eat in feeding therapy? No. Do they try very hard to get him to try new things whether it be just touching it or putting it in his mouth? Yes.
So what kinds of foods does Adam eat? I made a list so that I could better figure out what to buy for him, and what things to offer him for meals. The therapist had us split all of Adam’s foods into categories. There are “Desired Foods” those that he likes and will eat most of the time, “Tolerated Foods” which are foods that he may have tried or will try and chew, but not actually eat and swallow, and then “Undesired Foods” which are those foods which he will not eat or try. Here is Adam’s list:
Now, you have to remember these are all subject to brand, season, and mood. For example. Adam will only eat waffles that are frozen and he will only chicken nuggets that are frozen and by a specific brand. He will not eat chicken nuggets from chick-fil-a or muffins from a local bakery. It has to be the brand he is used to, and it all depends on his mood. Another example is yogurt. Before we left to visit family for Christmas, Adam would yogurt every morning. The entire time we were at my in-law’s house he would not touch yogurt. We know he likes it, but sometimes he will just not eat it.
Before therapy, Adam ate a lot of yogurt, crackers, and chips. I was at the point where if he would eat it then I gave it to him, even if it was unhealthy. I hated watching him not eat, it was very hard for me. The therapist set some rules and from there I have tried to put them in place as much as I could at home. It’s not always this way, but I try.
1. Crackers are for snacks, not for meals.
2. 3 meals a day at the table, 2 snacks a day at the table.
3. Offer Adam choices for snacks.
4. Provide at least 3 different foods at every meal (the desired food, a tolerated food, and an undesired food).
5. Use a divided plate.
Here’s what a mealtime looked like for Adam one day a few weeks ago:
The reality of this is that he ate most of the yogurt, only tried one piece of waffle, tried a piece of toast and spit it out, and didn’t even touch the bananas. That is what almost every mealtime is like.
So now that I have explained a lot of what goes on at home, let me tell you what we do at therapy. We have one 30-minute session each week. We go in and Adam sits in a special chair at a little kid’s table and I strap him in just like a highchair. The therapist will start off by singing a song with him while she washes his hands and face for “snack time.”
Then she uses some special brushes to put in his mouth to try to get him used to the texture. That only lasts about 30 seconds as Adam usually bites it or spits it out. Then she a special rubber toy that she gets Adam to chew on to strengthen his chewing muscles. (Adam used to have problems chewing and food would fall out of his mouth or he would have to hold it in so he could eat).
After, that she asks me what food I brought and I get it all out, and she sets it up. Every week is different. She tries different methods of getting him to play with the food and getting him to try stuff. Some days he tries new things, and some days he won’t. The goal is to get him to go from touching and playing with the food, to touching the food on his arms, then on his face, then his lips, then his tongue, then chewing, then, swallowing. Until he’s eating.
Some food he just touches. Some food he just chews and spits out, some he doesn’t eat at all. But it’s all progress. Slow progress, but progress nonetheless.
After Adam is done eating or when gets frustrated with us for trying to get him to eat new foods, then we get him cleaned up and talk about the goals for the week for me to do at home. I also have to keep a notebook of everything he eats, everything he was offered, and everything he didn’t eat. I have to bring it each week to show her.
That is pretty much it. It’s a lot of work. We are supposed to keep Adam on a tight feeding schedule so he gets to know when it’s time to eat when it’s snack time and all that. Sometimes I do it, and sometimes it just doesn’t fit into my day to do it so tightly.
For those of you who are wondering how Adam is doing. He has gained weight since he started therapy. He was at the 5th percentile, and as of a few weeks ago, he was at the 21st percentile. It’s a start, and I’m so happy that we are getting him the help he needs. Is this something that we may be doing for a long time? I don’t know. We are just going to have to take it one day at a time and go from there.
SOOOOO happy that he is gaining weight! i know it’s a lot of work but you are doing a great job mommy!
Me too. 🙂 The dr. isn’t sure how since he isn’t eating a lot, but I guess he’s eating enough! Thanks girl. I try so hard.
Sounds a lot like what we went through (and are still working on). Your son’s “desired” food list looks incredibly similar to what my son’s list was like before and at the beginning of feeding therapy. It works, though! Keep up the hard work because it will pay off. I’ve sat at the table with my son for over an hour with him screaming because he would not put an undesired food in his mouth… which is a requirement to “finish” our meal. It can be incredibly rough and draining. Many people do not understand having a child with feeding issues and there is a whole social aspect to eating that makes it all the more difficult. I’m so glad to hear Adam is gaining weight. I’ve been where you are and I want you to know that it will get better. He will make progress. Keep up the great work.
Thank you so much for your sweet comment. I’m so glad to hear I’m not alone. i can’t tell you how many crazy comments I have gotten (in person) about his feeding issues and I feel like no one understands. The mealtime thing sounds familiar, we have spend hours at the table as well. You said putting an undesired food in his mouth was a requirement? I have talked to Adam’s therapy about making him try new foods, but they don’t want him to equal eating with stress and bad stuff I guess. I mean we try but they don’t want me to force it, which sometimes I do, just to get him to try something. Thank you for the encouragement. We need to chat more often about this!
I am so glad he is gaining weight!! Even if it’s slow, it definitely seems to be helping! He is such a precious little boy!!
Thanks Mandi. Me too, it’s a huge relief.
I just found your blog today through Pinterest. I just wanted to tell you how much I love it. My son (2 yrs, 6 months but was born 4 months premature) also has SPD. And, his biggest battle is severe feeding aversion. I think he’s still below the 10% percentile. We will know in a few weeks at his next checkup. He likes crunchy foods like crackers/cheerios and cheese, but that’s about it. He’ll also eat french fires most days. We’re TRYING to get him to eat chicken nuggets. He has eaten a few bites before but it isn’t a desired food yet. We fight him to get pureed food in him but we usually manage that. Probably 85% of his diet is smooth pureed food we have to spoon feed him.
We’re in ST, OT, DT and PT every week. It’s such a slow slow road to progress and I have to tell you, I’m overwhelmed by it nearly every day. It’s nice to know of other moms and dads out there who deal with the same problems and coping.
I hope both our kids are eating a reasonably normal diet soon(ish)!
I am so glad you found my blog and commented! Since writing this, my son has had a new feeding therapist and she has worked some awesome miracles with him using the SOS method! My son still eats a lot of the same textures, but he is starting to branch out and it less afraid to try new foods.
Is your son in feeding therapy? I highly recommend it! We also are in a lot of therapy ABA, OT, Speech, and Feeding. It’s a lot, but we just have to keep telling ourselves it’s going to be worth it someday. Good luck with your son and I hope you get the right help for him soon!
I’m so happy to hear that you’ve seen improvement with your son! Even small steps are step, right?! That’s what I keep telling myself.
My son is in feeding therapy. His Speech, Developmental and Occupational therapist are all SOS trained and that’s the method they all use with him. We’re also starting a once a week SOS Feeding Group in January. I’m hoping a little toddler peer pressure will help him try a few new things. That will put us up to 6 therapy sessions a week but as you said, it is worth it. The therapy has helped him immensely in all areas including feeding. But feeding is the one that still needs to most work and I know it’s going to be a long, long road. I dream is that by the time he’s old enough for preschool, next fall, he will be a bit further along. In the meantime, we just keep plugging away!
Yes, I agree!
That’s great! We are loving this method and I think it’s really helping. Our therapist talked about starting a feeding group and thinks it would be very helpful for us, I hope she does cause we would love to be a part of it. Let me know how that goes for you! We are at 9 total therapy sessions a week it’s overwhelming so many times, but somehow I do it. I agree.
It is a long road and at times I wonder if he will ever improve, but those small steps are so worth it! I am hoping the same as well, that by the time school comes around he will be doing much better. Good luck!!
LOVE all the info you have posted! I am a feeding therapist in the chicagoland area and I do both individual and group feeding sessions. I am SOS trained so if anyone in the area needs help please let me know. I would love to help! Thank you for being so organized and helping to spread the word on what feeding therapy is like and how it can help! I love your enthusiasm and follow through! It’s why Adam is so successful!
Can you tell me where you found the construction silverware in the picture? Thanks!
Kathryn, I just saw this page researching a chart for my nine year old daughter who also has an eating challenge we face every day of our simple little lives and I started bawling when I saw that your son and my daughter eat EXACTLY the same things. WHAT the heck is that about?!
Thank you for taking the time to blog, it meant something to me today. To know there are other Mom’s out there who face difficulties is always helpful. I have no idea how you have the time. I have a 13 year old with other issues, even more serious, but safe to say I am inspired by you. Keep doing it, you are doing great!
Irene, thank you so much for your sweet comment. First, I am so sorry you are going through feeding problems with your daughter. Going on five years with my son and three with my daughter. I have written many other posts since this one, but I am so glad you found it helpful. It can be a lonely road, but there is help. My son now has finally graduated from outpatient feeding therapy. It takes time, work, and patience, but it’s so worth it.