Tonight at dinner, my son was sitting with us at the dinner table for his usual 7 mins. He sets a timer using Alexa and he asks Alexa repeatedly, "how many much time is left?" It isn't perfect, but it is so nice to have him at the table with us every night. I just love it as a mom!
I set him a place with the exact same plate, glass, and cutlery that I set for the rest of us. He also has a second plate that is for his foods. He is to dish out one thing onto his plate and touch it. Recently, we are working to bring one food to his lips. We also talk about what the food is called. All of this gives him knowledge and experience. Even if he never eats it, he will know what it is. If he isn't comfortable bringing a food to his lips, then I ask if he will put it in his hand. We keep it easy and simple.
Last night, we had tacos. My son made a taco (wow!) There is not one part of the taco that he will eat. He was repulsed by the meat and made a comment regarding that. I suspect that he will never eat meat, and that's ok. The point was not to get him to eat it, but to see what's in a taco and engage in the meal. I was so proud of his taco. It just made my heart sing! It sounds so silly, but I was the proudest ARFID mom in the world last night at dinner and just smiled at this little taco.
I think he was a little proud too. As he gets older, he is more engaged in his healing. He "wants" to be like everyone else and these are small ways that he gets to be a part of it all. Sometimes it is just that simple.
I see posts about ARFID parents being upset by negative comments, lack of support by friends and family, and doctors not understanding what they are going through. I'm here to tell you this, "Don't go there."
I understand you fully. I've been there and still am there.
When my son was much younger and ARFID was not yet an acronym, I watched my son suffer as a therapist force fed him food. I watched him cry and beg for food at the cupboard while his tummy grumbled because I was told to not feed him his preferred foods until he ate something new. I had one therapist try to misdiagnose my son with Autism so that they could explain why the therapy wasn't working. I watched him kick and scream as he was carried into therapy. I was told my son was the "most challenging" feeding clinic patient they have ever had at one clinic. I too have seen those comments at the end of the ARFID articles written by people that don't understand and trust me, smoke came out of my ears. I even had practitioners look at me like this was my fault. One doctor even started to fall asleep as I explained ARFID to him. I cried and felt like crap most days. The list is endless.
Then one day, I decided to ditch the negativity.
I decided that if I was going to have a child with ARFID, then he was going to be the happiest ARFID child there is and I was going to be happy too. I let go of the need to try to make people understand this. It just isn't explainable. There are people that have opinions even when they are not qualified to be making them - so let them, but don't engage. Just tune out, it's not your job to make people understand. Don't get angry, because that is engaging. I know you think this is hard, but it's not. It's all where you choose to focus. If you focus on the problem, then that is where all of your energy goes. If you focus on the solution, then that is where all of your energy goes. You can't focus on both at the same time. It isn't possible. You can't be positive when you are feeling negative.
As ARFID parents, we have very little power over the ARFID. But, we do have power over what we choose to focus on. So, I challenge you to deliberately focus on the positive and by that I mean to focus on the healing. Focus on what is working for you. Focus on the successes of your child. Focus on being happy each and every day. If you currently have nothing positive related to ARFID in your life, then just focus on your beautiful child :). Let the positive thoughts flow!
If you can find peace with this today, then you will find a happier child before you and you will be happier too! It takes focus and practice. If you catch yourself going to the negative side, then just notice it and tell yourself, "I don't need this. I've got better things to focus on!"
My best to you all!
In my recent poll, I asked parents if their ARFID child takes supplements or do they refuse. The results were - 59% said "yes" and 41% said "refuse". The reason I asked this question was because of the 17 year old boy in the news recently that has ARFID and has lost his vision due to nutritional deficiencies. Although blindness is considered an uncommon complication of poor nutrition, as stated by Deanna Paul of the Washington Post, it certainly is an opportunity for all of us parents to inspect our ARFID child's daily nutrient intake.
The article noted that he was deficient in vitamin B12, copper, selenium, and vitamin D, as well as reduced bone mineral density and high levels of zinc (read the full article here). I found this very helpful information and a good starting point as I inspected my own son's nutritional deficiencies.
I've stated in earlier posts that I am a certified holistic nutrition coach. This is something that I no longer use professionally, but I use every day in the choices that I make for myself and my family. I am a true believer that organic, minimally processed, whole foods are the way to go - which makes it very hard to be an ARFID parent.
I've been having my son's blood drawn for Iron for years, but now I have other vitamins and minerals to request tests for. My son shows no visible symptoms of ARFID. He is average height and weight for his age, with a healthy BMI and he even had a 4" growth spurt this past year. So, he "appears" healthy. But as ARFID parents, we can't accept that as good enough. We need to be more diligent.
My son had rejected supplements for most his life. As a young child, I was able to get the Flintstone chewable in him, then we moved on to Pedisure, and now he takes the below supplements - vitamins and fiber daily, Iron is once per week:
I worked very hard to find to healthiest, most natural supplements I could find that he would intake. His Iron went deficient again this past year and he WILL NOT take a pill or liquid, so I give him the patch. It goes on his back once per week while he sleeps. The fiber he actually tolerates, but I have to give it to him in a syringe or he won't take it. The fiber has some kind of an orchard fruit and garden veggie blend acting as the fiber, which is the only fruit or veggie that gets into my son. For the fiber, we started out slow as his body needs to adapt and water is a must with this! The ChildLife multi-vitamin he has taken in liquid form for a couple of years, typically with a refusal - but he gives in - and always with a glass of water and she crackers to get rid of the taste. All of the supplements that we give him we first discussed with his pediatrician. I even called his doctor 3 times to get the Iron dosage right. I don't care if I am annoying, because getting the dosage wrong for a child can be "not" good.
It is a circus act daily to get the supplements in. But it is an important thing that we do. I talk to him about what he needs and why. He is old enough, so I tell him what Iron does for him and what will happen if he doesn't get it. He understands.
The thing about supplements is that they are not regulated by the FDA. I learned that when I was in school studying nutrition. That means that what the company puts on the label isn't necessarily what is in the bottle. Which is a bummer. There are supplements that are third party verified and that is a good thing. That means that the company paid another company to test and verify the ingredients. You may see "USP" on the label as well. USP is a dietary supplement verification program. My child won't take those supplements, but maybe yours will :).
So, the Iron "patch" is cool. But again, not third party verified. So, my way of determining how effective it is is to give it to my son and have his iron levels retested at 6 months. If his iron levels improve, then I would say it is working. So, we will find out in a few months. PatchMD also has a patch for multi-vitamin. But, I find that the ChildLife multi has more of certain vitamins than the patch, so I am still giving him the ChildLife for now, but may switch after further study. My son's pediatrician says he has no experience with the patch, so we will learn together.
I also looked at what my son eats each day without a doubt - 1 cup of Multi-Grain Cheerios and 3 cups of FairLife Chocolate milk. So, I wrote down each of the vitamins and mineral amounts from those so I could see how he was doing. Then I told him he had to have these every day for sure and the less healthy crackers and chips after that.
At his next doctor appointment, I will print the article of the 17 yr old boy off and give it to his pediatrician, then ask for more bloodwork in addition to the Iron. It's always good to share knowledge.
My hope is that you take away 3 things from this post:
1) Don't panic, it's uncommon for the worst to happen
2) Be diligent, find a way and find what works for your child
3) Talk to your pediatrician, get approval for supplements and ask for bloodwork to get the big picture!
Best wishes to you all! Stay positive!
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!
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.