I re-read one of my early blogs the other day:
Now that elementary school and the first year of middle school are behind us, I thought that I would look back at all of the worries that I had that never actually transpired into anything. I remember all of the stress and chest pains I suffered as I thought about my son eating lunch for his first time at school, wondering if he would be teased for what he eats or would he go hungry.
Here are the facts as I reflect back:
Now that I will be packing lunch for a 7th grader, I thought I'd share what it looks like. On the left is a pic of his lunch in elementary school. On the right is his lunch in middle school.
Not much different except he now drinks chocolate milk from a thermos without a straw. I also have to pack more into the baggies to fill him up. His lunch typically comes back empty and he eats right after he gets home from school. And guess what? He had a 4" growth spurt last year - so amazing!
My goal for this blog post is to reach the parents of young ARFID kids and let you know to enjoy each day. Stop worrying about what "could" happen, because it may not happen at all and then all of that worrying was wasted when you could have spent it enjoying life instead :)
My son has "super hero senses". That's what I call them. Since he was a baby, he's been hyper sensitive to so many things...many related to his ARFID. Obviously, texture and taste was an issue his first year, but I also noticed it in so many other areas. When he was a toddler, he hesitated to walk barefoot on the grass. Then the sand was an issue. Trimming finger nails sends him through the roof - even at age 11 he needs me to cut them. Washing his hair...oh boy! He has to hold a wash cloth over his face and sometimes it just doesn't get done. He is getting better at doing it, but it's hard on him. Swimming lessons continue to be difficult - the temp of the water and putting his head under water. All tags on all clothes must be cut off. Smells get him ("What is that smell?") Noises get him ("It's too loud!"). And heat... one time we traveled to Arizona and when he stepped out of the car for his first time, he started crying and panicking and tried to get back in the car.
At first, I didn't piece it all together, but over time it has revealed itself to me. He is not being difficult, although it can appear that way. He is not trying to be defiant in these situations. He just has super hero senses... and he is merely reacting to his nervous system freaking him out. I'm not a doctor, but that's my assessment. And instead of working against my son and trying to push him to do these things that cause him to panic, I started to really pay attention to him and help him navigate them.
When he takes a shower, I give him an extra little towel to put over his face for washing his hair. I give him tips on how to wash his hair and talk to him about enjoying the relaxing feeling of warm water running over his head. He's started to take long showers - so I just let him use all the hot water up and learn to enjoy.
Another thing that I noticed about my son is that he scratches or "picks" at himself a lot. Usually in places where the clothes rub on him. He won't wear jeans because they are too "scratchy". He won't wear shirts with pictures or pockets on them because he can feel the picture or pocket from the inside of the shirt and he doesn't like that. His legs look like he has a bunch of mosquito bites, which I asked his pediatrician about. He said that my son feels the itch SO much greater than the average person does, so instead of just lightly scratching - he goes at it. He said that I should frequently put lotion on his legs to keep him from feeling the itch in the first place. He also said something that didn't occur to me before...he said that we should deal with the sensory piece before even trying the ARFID therapy. That was interesting to me and made perfect sense.
We have been in and out of Occupational Therapy soooo many times. We did the brushing, played with shaving cream, and so many other things, but ARFID was always the focus. I think it would be interesting to try out some therapy with sensory goals being the full focus and then see how the results impact the ARFID. I'm also curious to see how we can deal with these things at his age. I wonder if he will outgrow some of the sensory issues? The important thing I learned is to pay attention to my son and help him navigate all of these things instead of fighting him on them. This will be interesting...
I keep getting asked if I can refer parents to a practitioner. The honest answer is no. I am not very helpful to many of you because I don't live near you and I don't know what your options are. I don't know what you've tried and I don't know anything about your child. It takes a lot of work to track down your options. And parents, it is your job to perform that hard work. It is hard to know where to start. I've been there. I've run in circles with OT, Feeding Clinics, Psychologists, etc. Lots of circles. Lot's of trying different things with different people. We take breaks when it doesn't work, but we never give up.
When I started my website www.arfidmom.com in January 2016, it was simply to find other parents to talk to. For me, this was more helpful than finding a practitioner at the time...this is the best place to start in my opinion - talking to other parents. If you aren't talking to other parents, then that is where you start. There are lots of you following my FB page - use it to find each other. Post the state or major city you are near and see if there are others - then connect privately in messenger once you've identified each other. I will share it to make sure you all see it. If you don't want to post, then ask me to.
Once you have each other, compare notes, then find a practitioner. Typically, it would be an occupational therapist. I'm not a doctor, but that's where I would start as an ARFID mom. Someone trained in ARFID is ideal, but feeding therapy is good too. Not too helpful to start with a nutritionist in my opinion, but maybe down the road. I personally look for help with feeding therapy, sensory work, and calming techniques - because I know this is what my son needs. You know what your child needs too, just trust it. It may not be the same. Every ARFID is different.
My advice to you is to keep trying, and ALWAYS follow your gut. You KNOW when you find someone that gets it and you KNOW when you don't. Listen to it. You have to keep trying until you get there. When you find someone that "gets it" and "believes in you" and doesn't give you that look like you are a crazy person or at fault, then STICK WITH THEM. Finding someone that believes in you and understands your child is the person you want to work with no matter how long it takes. And it will take time :). If I had the cure, then I would share it. But I don't, I just have lots of experience - and that I am willing to share :). Best wishes to you all.
WHAT IF all the health and medical professionals began reporting that chips and crackers are the new "in" health foods? How would you view your ARFID child now? Would all the pressure come off? Would the nights of crying cease? Would you let go of it all and learn to relax and just love your child? Think about all of the ARFID "weight" that you carry around as a parent that you just need to let go of.
As parents, we are not in a good place to help our children succeed in life or find a place of recovery, if we are not in a good place ourselves. This is no different than the analogy of putting your oxygen mask on first. Ask yourselves, are you putting your oxygen mask on first? I know most of you are not. I used to be that ARFID mom, but not anymore.
The day I began listening to my son's body language, because he was too young to express himself to me, was the day that I let go of the ARFID. His body language was telling me that he was scared, and he was ashamed, and that he thought he was doing something wrong EVERY SINGLE DAY. And do you know where he got these ideas??? From me. Because of my stress around him. Because I would panic and cry about his ARFID. Because I would constantly tell him that he needed to eat nutritious foods or he would end up sick. I always did this in a loving way, but my concern for him was getting in the way of us living life and being happy.
Does panicking about all of the possible things that can go wrong help my son recover? No. Does being under constant stress help me be open to a possible solution for recovery? No. Does explaining to my son that what he eats is crap? No. There is nothing to be gained in all of these negative emotions and negative actions. Even if they are from a place of love.
That day, I cried for a different reason. I cried because I let it all go. I let the ARFID leave my body - the stress of it all just washed away. I made the choice to be happy and help my son be happy WITH his ARFID. We needed to embrace where we were at in order for us to find where we were going. Where we wanted to go was to a positive place of recovery. And all of us need to recover, not just my son.
Today, my son is no further along eating new foods. He still eats his chips and crackers and drinks chocolate milk. But we do not stress at all about it. We enjoy our lives together. We have fun. We don't talk about ARFID. We talk about foods and how I had to spit out a Brussel sprout the other night, because it turns out I don't like them :). He got to see that we all have foods we don't like. We don't talk about what he is lacking, rather we high five what he is getting in. We say. "good job eating that peanut butter cracker today! That's some good protein."
My son is very successful at school, he prefers his electronics over sports, but he still signs up for recreational activities, we have fun playing board games every week as a family, he brushes his teeth, even uses mouth wash now, and he gets plenty of sleep. He is a normal kid. And he is happy. I am not going to ruin that for him just because he eats differently.
I started to think about it like a food allergy. My son has a limited diet. If someone needs to know, then I just say, "he has a special diet". Most people assume food allergies, so they don't even ask about it. In fact, ARFID is easier than food allergies. Have you ever thought about that? My younger son has tree nut allergies and I worry far more about him.
Parents, I strongly encourage you to let the ARFID go. Stop letting it control your happiness. Do what you have to and find a place of joy and appreciation for what you have in life. It is so much more enjoyable to experience. The solutions will come. Our children will heal. Don't let it consume you and waste your precious time together.
Hugs to you all!
When I first launched this website over two years ago, I met an adult that had found recovery and healing from ARFID in his late teens/early 20s. He had used hypnotherapy and that is the approach that worked for him (read more at http://www.arfidresource.com/?page_id=84). After hearing his story and then meeting and working with Dr. Kim using "imagining" (watch the video) while pendulating back and forth between a food that was positive and a food that was negative, I started to see the connections. I also had used visualization as an athlete and was familiar with the positive aspects of it in sport performance, but had never really thought about it in any other aspect.
Through talking with various parents and practitioners, I started to get a sense of what was really working for people. It all seemed to point to relaxing the individual, and then once in the relaxed state, using some form of visualization to "practice" how you respond to the situation or fear, eventually training yourself to overcome the situation. In the case of ARFID, food cues are used in a progressive manner - just like many of us parents have seen used in exposure therapy (place in front of > touch > lick > chew and spit > swallow), except food is never used in the session. If you can't do something in imagination, then it will be awfully hard in real life.
It is essential that the individual have the strong desire to overcome the circumstances. I felt that my son had shown those signs, so I started bringing him to a hypnotherapist a couple of months ago. At first, the therapist worked with him to "let go" of the trauma that caused his ARFID. Whether it was at child birth, or after, he needed to understand that he has grown into a fun loving 10 year old, with no major medical issues, and he did not die all of the times he thought he would during the past 10 years. His 10 year old self talked to his baby self and said, "See how big we are? We are big and strong and we survived."
After a couple months of this, going once every two weeks, we talked to him about his eating and asked him the question, "What do YOU want to eat?" It is all in his control - it has to be. He wants to eat an orange or a strawberry. He has shown he has the desire. So, we talked about the orange, introduced the idea in hypnotherapy, and then physically put it by him at home. Then we played catch with it a couple weeks later. Next, if he wants to, we will cut it open and touch it or smell it. But only if he wants to. This is his ARFID, not mine.
He really likes the smell of the orange from the outside. This is an opening for him, so we can cut it open and just smell it. Then we will introduce bringing it to his mouth in hypnotherapy. Then eventually bring it to his mouth outside of therapy. It's all in stages that he wants and can handle. And he calls the shots.
Recovering from ARFID is like training for the Olympics. We can't go buy a patch and slap it on their arms to fix this. We can't give a pill, or hypnotize them into recovery. This is a journey. Recovering from ARFID is as much work as training for the Olympics. We have to find coaches to train with, training partners to share resources with, then practice, practice, practice! We must visualize our performance over and over. We must put in the hard work and the hundreds of hours of sweat. Then, in the end, we win the gold. Our gold, is a new food that can be eaten on a regular basis and pave the way for more.
Somedays, I wish there was a patch. It sure would be easier, but all is not lost. The time that I have spent with my son through this journey is priceless. We have a wonderful bond that we may not have made the time to create if he didn't have ARFID. Since the Olympics is just a couple of weeks away, now is as good a time as any to renew our ARFID spirit!
So, this has been interesting...
My son has enough trouble brushing his teeth on his own and going to the dentist has always been a challenge. The worst part of the dental visits has been when they brush the fluoride paste onto the teeth and then my son has to sit with that awful taste in his mouth. We had to decline the fluoride for at least a year until he was ready for them to finally brush it on.
As my son grows, he fits in the profile of most kids these days, which means he needs orthodontic intervention. We began at one clinic that instructed us to have 4 teeth pulled. I thought my son would never recover from this. These are the situations that I can't even tell him about or we will not be able to get him in the car. So, I say just enough to prepare him and hope that the universe will take care of the rest.
We went to a specialist to extract these teeth (luckily one fell out on its own first, so we only had three to deal with). They began with the novocaine shots and he panicked like nothing I had ever seen. I made the decision to allow them to use the gas to put him under for the extraction. This went very well and he didn't remember a thing. They told me that he could only eat soft, pureed foods for a week or two - which always makes me laugh, because the answer is "no" to this. My son will eat his foods even when he has 3 craters in his mouth, despite the advice of the professionals. It is what it is.
Once we all recovered from this, the orthodontist told me that he will need two more teeth pulled. Needless to say, we switched to a new clinic. The new clinic told us that what we were undergoing at the previous clinic was called "serial extraction" and it was old school. Whew! There was another way! We immediately signed on and began the new leg of the orthodontic journey - a jaw expander.
So, my son's jaw is too narrow and all of his beautiful teeth are crowding one another. Rather than pull them, this orthodontist has a plan to spread his jaw wider so that they can all have room. I completely agree that this is a good approach. But....taking the mold and inserting an expander into the mouth of a 10 year old that won't even put food in there...ugh. But, my son made it through the creating of the mold with the incentive of tokens that can be put towards gift cards :).
He had the expander in for 4 months. He was told to only eat certain foods...yet again, he continued to eat his foods regardless. The first 2.5 months went fine, but he would panic - seriously panic - when he got food caught in it. With only 1.5 months to go, I noticed that he quite eating many of his foods. When I asked him about it, he said that they would get caught in the expander and he just couldn't deal with it, so he stopped eating all of the foods that would get caught.
This was devastating to me. He only eats crackers and chips begin with. Now, he was down to almost nothing. He was starting to get skinny, so I called the clinic to see if it could get removed sooner. The answer was "no". I knew that he would be fine though. This was not a matter of life or death, but I had to ask. He would make it and then he would eat his foods again, but it was rather scary for a few weeks. Some days, all he had was chocolate milk and a handful of chips.
The greatest day was the day the expander was removed! But that was rather traumatic for him - and then came the molding for the retainer - and then came the temporary retainer. It was all so hard. All of this messing in the mouth of an individual that has a HUGE oral aversion to begin with. There is no easy way about this.
Now we are a few weeks into the retainer and he wears it about 50% of the time. We are working on that, because we certainly don't want to go back to the expander. And after that was removed, I sent him to the dentist for a cleaning. But guess what? He has a cavity right where one of the orthodontic wires is. He had plaque build up from the wire and he is so panicked about brushing that. So, now we have our next thing to deal with. Does this never end?
We decided not to allow him to have the gas for this filling procedure. We hear a lot about unnecessary deaths from this gas at dental offices. We are paying to go to a pediatric specialist/dentist for this, in hopes they have a method that will suit him better. So, my son will have to endure his greatest fear yet again. It seems so simple for other kids, but it just is not easy for ARFID kids. It will be very traumatic and may have the potential to set him back in his eating.
I find it so ironic that my son with ARFID has SO MANY mouth issues. It's almost as if he is being tested by the universe, or prepared by the universe. You would think that after all of the hands, needles, and appliances in his mouth, he would be ok with food in there. Sigh.... I know one day this will get better, but this has really been one heck of a year! In the end, he may need braces after all of this.
Just know that if you have ARFID kids that need orthodontics, it can be done. They can get through it :). It will be tough, but it can be done! It has helped me quite a bit to send my husband to these appointments. I can only handle so much and he does better than me when the tough appointments come around. I tell you all one thing though...I will take a tough orthodontic appointment any day over a throat culture for strep throat....
My best to you all!
A month or so ago, I was standing in the kitchen next to my ARFID son. I was asking him what he wanted to eat. He had some hesitation as he answered me. At that moment, it occurred to me that he feels bad about what he eats. Furthermore, he feels bad because we (parents, practitioners, peers, society, etc.) are always commenting on it in a negative way. I recognized what his body language was saying to me and I immediately said to him, "All food is food. You eat food. You are growing and there is nothing wrong with you, so your food is not bad. Your food is good. All we are doing is simply wanting to ADD to what you eat, not take anything away or tell you that what you eat is bad. We are just wanting to ADD and expand, so that you have more choices."
In the beginning, I called the foods that my son eats his "Safe" or "Preferred" foods. I still have some of that thinking in my past blog posts. That's what I called it. I didn't have another name for it and it made it easy for me to explain to people. It never occurred to me that calling my son's foods "Safe" or "Preferred" indirectly implied that all other foods were "Unsafe" or "Non-preferred". I was putting negative labels on foods that were not negative.
The negative labeling, combined with everyone implying that what my son eats is not good, only makes the ARFID situation worse. It is not helpful in any way to think or speak this way, even if we are not trying to. A better approach is to call what my son eats simply "what he eats". I don't like to eat all foods. I have foods that I like and don't like. Granted, I don't have ARFID, but I do have certain foods that I prefer and I don't call my foods that I eat my "Preferred" foods. Everyone has foods they like and don't like and we don't label them in the way we label our ARFID child's foods. I believe that it is helpful to just quit the labeling of it all together. Keep from implying anything negative and focus on the positive.
I also believe that it is helpful to tell our ARFID loved ones that what they eat is just fine. The goal is not to make them feel bad about that. They have no choice in the matter. So, why not focus on adding to what they eat, instead of focusing on stopping them from eating the unhealthy foods and getting them to eat healthy foods.
As an ARFID parent, all I really care about is my son trying something new...and then another something new...and so on. At this point, nutrition is second to simply trying something he has never tried before. I would be THRILLED if my son tried a yellow Starburst, because he will only eat the red ones. That would be huge for him. It has nothing to do with nutrition at this point, but simply releasing the fear of the unknown and new foods.
Ever since that day in the kitchen, I have changed my perspective. I make sure to imply positivity and make sure my son knows that he should not feel bad about what he eats. Eventually, we will be past all of this and I want to be able to look back and see it as a positive progression for him.
Stay positive everyone!
Pumpkin carving and trick-or-treating....every little kid's favorite things to do in the Fall. This Halloween, I took note of what goes on in my ARFID son's world during this holiday.
The first thing I noted (which was not new news to me) was that his costume selection is greatly influenced by his ARFID. He does not want any make-up on his face and nothing around his neck. He did select a giant Panther mascot head as his costume this year, but he mostly carried it around and did not wear it. We finally settled on safety pinning it to the hood of his jacket so that it was tilted up with his face exposed. It seemed to work and gave him the appearance of wearing a costume, so he was happy!
The second thing to note was the carving of pumpkins. My son had no problem touching the pumpkin when it was whole. He picked it out of the pumpkin patch without any troubles, but wouldn't touch it after that. He found a picture online of what he wanted his pumpkin to look like carved and presented it to me. He then handed it over to me to do the carving and gutting of the seeds. He couldn't handle touching it once it was cut into. He was happy to let me do the work, but I wondered if he felt like he was missing out. I wondered if he would be carving his own pumpkin one day and how fun that would be to observe!
The third thing to note is the candy. My son is SUPER excited to collect candy! But that is mostly where it ends, with collecting it. He has very few kinds of candy that he will eat - certain suckers, M&Ms plain, red Starburst, and Hershey's chocolate plain. But he thoroughly enjoys collecting it and walking around with his bag of it! And he has plenty of candy to negotiate trades with his little brother :)
All in all, it makes me happy to know that my son truly enjoys this holiday. If I really think about it, there are costumes and make-up that non-ARFID kids don't like. Pumpkin carving is kind of messy and yuck for a lot of kids. Who wants to touch the pumpkin guts anyway? And there are plenty of pieces of candy that my non-ARFID son won't eat and can't eat (and he has the tree nut allergy too), so is it really any different?
Rather than worrying about all of the differences and pointing them out, I found it rewarding to just blend him and his ARFID differences into our traditions and just let him be his ARFID-self. We had a really enjoyable Halloween this year and hope you did too!
I was contacted to participate as a parent voice in a podcast about ARFID. There are adults with ARFID also interviewed in this segment, along with practitioners. Very good insight!
Lord of the Fries: When it's not just picky eating
Hello ARFID Parents,
I am back from my pit of despair. I've been doing some practicing lately. I've been practicing a new approach on positivity and "getting ready". Like I've said before, I believe that where your focus lies, also lies your experience. So, if you focus on the positive, then more positive will come. If you focus on the negative, then more negative will come. That has proven itself over and over for me and my son. It's like trying to convince your child to try a food...if you focus on pushing and pressuring them, then they just push and pressure back (and completely shut down in the process). So, we are starting fresh, with a positive approach on getting ready.
I have found many solutions for my son over the past 10+ years. And I always wrote them off as "not working". But, I'm starting to think that is not true. I was so excited and convinced by the most recent therapy, that I took a year of certification courses and became a "Certified ARFID Practitioner". Now, you may wonder why a Certified ARFID Practitioner can't help her son. I wondered too. But now I understand, because my son has shown me...he just isn't ready.
The most perfect therapy in the world can be sitting in front of our ARFID kiddos and it will not help them one bit if they are not ready. But the trick here is that they cannot get themselves ready, because their perspective is one of tremendous fear. As parents, we are in the perfect position to help them get ready. And what are we getting them ready for? We are getting them ready to try therapy again. Any therapy that feels good to them.
At this point, my son does not participate in meals. He doesn't use utensils, etc. He basically needs to learn how to eat from the beginning with both food and being a participant of a meal. Right now, forcing him to sit at the table is pointless. He is not ready. So, I work to help him find the foods and the environment that he is most comfortable in. If that means sitting on the couch while eating, then so be it. And I don't really care what any one thinks about my parenting. Because my goal is to get him good where he is at, so that he is ready to take the next step. Maybe the next step is eating at the table. He will tell me through his actions and reactions what is next.
Now that we are good where we are at, we are getting ready for the next step - which we don't know what it is yet, but we are getting ready. So, I wrote some words on an index card (see below) and I have my son read it once a day when he is eating. After he reads the card, I ask him, "Do you believe it?" He always says yes. I don't know if he does believe it, but as long as he keeps saying "Yes" then we are working in the right direction. Here's what the index card reads:
I am full of appreciation and joy now that:
- I eat and drink whatever I want without fear .
- I eat the same meals as my friends and family.
- My body is healthy and is growing big and strong.
This is where we are at. We are getting ready to start therapy, but only when my son is ready. We are working to get him ready with a gentle approach of finding what's comfortable to him and then working to expand those boundaries through positive thinking. Once we've sat here a little while, I will talk to my son about what can we do next. We may even draw up a plan of the steps that we will need to take to get him to the goal of eating. He can come up with his own steps as to how we can go from getting him from the couch to the table. Then slowly, we will take a step and get ready for the next. It has to be in his control, or we will never progress.
This is our plan...getting ready for therapy. I will keep you all posted!
I am an ARFID Mom. I am the mother of a 12 year old boy with Avoidant/Restrictive Food Intake Disorder (ARFID). I have become the "expert" on my son's feeding issues. I am here to share what I've learned.