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 was invited to be interviewed as a parent voice for ARFID. See the article below.
Article by Meg Heaton of the Hudson Star Observer, 2017
Nothing is more basic to human growth and development than food, but for some, including a lot of children, that relationship is fraught with fear.
Avoidant restrictive food intake disorder (ARFID) is a type of eating disorder where the consumption of certain foods is limited based on the food’s appearance, smell, taste, texture, or a past negative experience with the food. It is a physical response to one or more foods that can feel life threatening to someone with ARFID.
Dr. Kim DiRe is a psychologist and therapist who practices near Phoenix but treats patients with ARFID from all over the country. She was recently at the Healing Waters Health Center in Hudson to meet with parents of children with ARFID and professionals who want to learn more about the disorder.
DiRe says that ARFID often exhibits itself early in a child’s life and can be associated with something traumatic that happened at birth or even in utero. It can also develop in older children and adults.
“It is a very deep fear of food and the consequences that will come if they eat it — choking, allergic reaction, vomiting. The fear is very real and they feel like they could die if they eat,” said DiRe.
One of the parents attending the training at Healing Waters was Erin, an IT consultant in the Twin Cities and the mother of a 9-year-old who has had ARFID since birth.
Erin believes trauma surrounding her son’s difficult birth, which included the umbilical cord being wrapped around his neck, is what caused him to have ARFID. He started to exhibit signs of ARFID as soon as he was introduced to solid food.
DiRe says children like him are often labeled “picky eaters,” but it is more complicated than that. Foods that trigger the disorder in a child create a physical response that includes the release of adrenalin and nervous system responses that make eating impossible.
DiRe says ARFID is a sensory disorder where body tissue stores the memory of some trauma and the tissue when stimulated sends the message that the food is harmful, maybe even fatal. “Their first instinct is to survive. The threat is not just a cognitive one but one related to heightened senses which can shut down the digestive tract among other responses, making eating a threat.”
DiRe says it is not that those with ARFID aren’t hungry, they just can’t eat food like others do.
Erin said when her son was presented table foods, he had trouble swallowing certain foods and avoided others. As he grew, his mother noticed his eating habits became more limited. The family sought professional help, but traditional therapies for eating disorders seemed to make him more fearful.
ARFID complicates life for those living with it. Erin said school lunch, outings with friends and birthday parties can create problems, even feelings of shame.
DiRe says most of the population doesn’t realize how much food and eating impacts daily life. “It is a very social activity and there can be a lot of anxiety and shame when you feel differently about it.”
DiRe’s therapy for ARFID focuses on the sensory and nervous system, using touch to calm and control the release of adrenalin. She also uses talk therapy to assess the level of anxiety and understand the specifics of what foods create the problem. The goal is to create a chemical shift in the nervous system that diminishes the threat of food.
Erin says DiRe’s treatment is working for her son and it is worth the frequent trips to Arizona for the 10-hour weekend therapy sessions. She has also reached out to other parents through her blog. She is a certified nutrition coach and hopes to inform others about ARFID and the therapy DiRe uses.
Both DiRe and Erin want people to know that ARFID is an eating disorder that is recognized by medical professionals and that it is not a choice children make not to eat.
“We tend to reward eating and punish for not eating. But that won’t work with ARFID. What we have to do is get them to place where they feel that it is safe to eat and nothing bad will happen,” said DiRe.
I've been quiet on my blog lately because I've gone to that place where ARFID parents go when they can't fix their child. It feels like a place of self-pity mixed with anger. It's not a place of "why my child?", but rather a place of "why isn't this ARFID going away?" and "what is it going to take?" and "I am trying everything, EVERYTHING!" And then we break there, in that place in our minds, because we can't break outwardly and let our ARFID children know. And we cry there. And we get angry at the universe there. And we get desperate there. And then we agree to pick ourselves up and start again there.
I've found answers during this past year and I firmly believe in them. I have faith in them. I've seen evidence that they work. But my son isn't willing and just won't "shift". It's not his choice either, which makes it more frustrating. It's almost as if he isn't ready yet. He wants to eat. He is HUNGRY. I listen to many ARFID parents say that they are waiting for their child to be "ready" to begin any kind of therapy. Then I listen to my trusted practitioners that say that early intervention is the best because the bad habits are not yet set in stone, the malnutrition hasn't started, and the medical issues have not yet begun. If you wait too long, then you are not only dealing with the ARFID, but you are also going to be dealing with medical issues as well. And maybe they can be undone or maybe they can't. I am always trying to beat this disorder to the punch. I don't want this to get any worse than it already is. But who is right? Do we have to wait until our kids are ready? Because even with the perfect therapy, if they are not ready, then will it work? Or do we have to get this solved before it gets to a point of being too difficult to undo? It's so frustrating.
I've done my best to remain positive in this situation. I believe that we attract what we project. And if we project hopelessness, fear, and anger, then that is what we will get. If we project hope, then that is what we will get. Being hopeful has gone by the wayside this past few weeks for me. I've allowed myself to fall into my very own pit of despair. But I tell you, it has done me absolutely no good. And it isn't helping my son either. Our kids can sense everything. And it is hard to regain the positive attitude once you've gone to that place where ARFID parents go. But I need to find that positive attitude again.
The first step for me is to acknowledge that being in that place does not do any good for me or my son. The second step is to show gratitude for all that is going well for him. He no longer has cortisol coming out of his skin in the form of eczema-looking sores all over his body. This leads to the third step, which is to FOCUS on the good things. It does my son no good to talk about how bad this is for him. It does help him tremendously to keep pointing out the good things though. Even if they are small.
I was "schooled" in the fourth step just last night. I went to a class and was partnered up with a woman. She had mentioned that she was taking the class to learn more about how to help disabled children. It occurred to me to ask her if that was her profession or if it was her own children. She answered that she has three kids - two have rare syndromes and she is currently overseeing their move into group homes. She not once complained or even looked depressed. Yet, there I stood in my pit of despair. I was humbled at this brave and strong woman before me. It was obvious that we were partnered up for a reason. That reason was a lesson for me.
So, my fourth step became clear. I need to embrace that we all have crap in one form or another that we need to get through in this life. We can't let it beat us down, but rather we must push forward persistently until we reach our goal. No matter how long it takes, because giving in to that "place" is not going to help anyone.
Each ARFID situation is different. There is no one solution that helps everyone in the same way, but staying positive and following the guidance of our trusted people, along with "listening" to what is working and not working for our ARFID kids is a way to start finding a new place for ARFID - a place of healing.
Our family just returned from a spring break trip to Florida where we stayed with my in-laws. It is always interesting to travel with someone with ARFID. I used to panic and dread it, not knowing how or when my son would get to eat, but now I have learned to relax into it and some how it always seems to work out. For this trip, my in-laws were already in FL and let us know that they do not sell his brand of chocolate milk there. This was a little unsettling at first, but we did manage to find a brand that he used to drink last year and he agreed to drink that during the trip. My in-laws had already bought all of his foods ahead of time, so we were very fortunate to drive straight to their rental and have all his foods ready!
Some of the experiences that we have had during our travels and how we worked around them are listed below:
Other situations we've encountered are overnights or weekends at a relatives, which is easy these days. We've been doing this long enough that all of our family members know the routine. I just pack a small cooler and a bag of food. When my son was younger, I had to make a schedule of what to feed him and when. But now he is old enough to manage it all for himself. You can also read about our recent weekend away for a school field trip - this was a tough one, but it all worked out: http://www.arfidmom.com/arfidblog/being-heightened-with-arfid
All in all, I think we are pretty lucky to be ARFID parents in this day and age. I couldn't imagine having to navigate around to different restaurants, grocery stores, and gas stations without having a smart phone to help me find it all! It all seems to work out just fine every time we travel, BUT I do not think we will be traveling abroad any time soon. That would be a tough one!
Hello all of my lovely ARFID Parents!
I've been getting this question from a lot of you lately.... "I live in XYZ state/country and I can't find anyone, where do I begin?"
Keeping in mind that I am not a doctor, rather I am a parent with 10 years of experience and soon to be a certified ARFID Specialist (April 2017). This is the response I give:
That's a tough question! It is hard to find the right people at first. In my experience, the combination of an Occupational Therapist and an Eating Disorder Psychotherapist is ideal. The OT can work with the sensory piece, since this is a sensory disorder and the psychologist can work with the trauma piece associated with the "fear of food". I believe that it takes a team to heal ARFID. A nutritionist is a great addition - but when our child fears food, then talking about food can be very "activating" for them - which is not helpful. So, using a nutritionist in the capacity of educating how foods help our bodies grow (i.e. what are the food groups, what does protein do for our bodies, what does the rainbow of foods look like) can be helpful.
If you are struggling to find the right people or even people that are familiar with ARFID, then there are a few options. You can find a therapist willing to learn and refer them to my mentor Dr. Kim DiRe's website for ARFID Specialist Training (www.kimdire.com). I would start with an occupational therapist, as they have been a great fit in our training classes! There is also an ARFID eBook that Dr. Kim has written that is great for both parents as well as practitioners to read. This eBook is at the very bottom of her website. The practitioner course will also be offered online this Fall if travel is an issue. Also, it might be helpful to find out if you can take the course yourself as a parent. It will greatly change your perspective and empower you to help your child!
ARFID is not widely known yet, so finding people can be tough at first. It is important for parents to do much of the learning as well. We can do a lot at home to help our ARFID kiddos to relax and feel safe by simply understanding what this is. It is also important to not "activate" our kids and make things worse. I discuss much of this on this website and blog, so please read it all through!
If you feel that your situation requires something more, then weekend intensives are offered by Dr. Kim in Arizona. I am also completing my certification in April 2017 and will be certified to offer the same in Minnesota. This is a weekend involving five 2 hour sessions to kick start the treatment. I can refer you to Dr. Kim or you can check out my website www.arfidology.com.
As a parent, I know first hand what the "points of failure" are in the home. I know what it feels like to be emotionally exhausted from this and how hard it can be to push your child at the right moments. I am working on building an app for ARFID kids and teens to go along with their therapy.
On many occasions, I will talk to parents over the phone to tell them about the therapy I use for my son and the training that I have received, as well as hear your story and give some tips, so please let me know if you would like to chat! I am always here! All you need to do is ask :) I do this often and enjoy helping parents to find some peace.
And you are most definitely not alone! I have connected with parents all over the world through my website and it is really great to piece us all together!
Erin - ARFID Mom
My son and I made it through our weekend field trip! I had spent a great deal of time planning, preparing, and packing all of his meals and drinks for the weekend. The staff was EXTREMELY helpful and made having "special" meals very easy for us. My son was also able to sneak snacks when needed throughout the day. It was very easy. All of my stress was for nothing when it came to meal time. The other kids did not comment on his different "brown bag" meals either. We are blessed with a great school and a great group of 4th graders. Even though meal time was easy for us, there still remained much difficulty throughout the weekend. This was eye opening to me, so I wanted to share what I learned.
I often think of ARFID individuals as having "super hero" senses. In the case of my son, his smell and touch senses are extremely "heightened" at all times. Since birth, he always had issues touching things with his feet (sand, grass, etc.) or being easily irritated by tags in his clothing. He also has trouble with clipping nails, washing his hair, and sneezes whenever he steps into the sun. On top of that all, he can smell for what seems like miles away! It's crazy.
As I began to learn more about ARFID, I started to figure out that these senses may be heightened because other senses were being muted. Much like a blind person may develop better than average hearing. For ARFID individuals, it can be the sense of taste that is lessened. I learned through my ARFID certification training (www.kimdire.com) that the taste sense can be quite different with ARFID. For example, things can taste metallic to them, when it doesn't taste that way to us.
ARFID individuals are also heightened internally by the over-production of cortisol in their systems. They are always "on" or "activated" or "stressed". For my son, the cortisol comes out through his skin. It's like having eczema and he picks at it like mosquito bites that itch. It's the sign that I use as a parent to gauge how stressed he is on the inside. When he is more calm internally, he rarely picks at his skin. When he is heightened, he picks a lot.
Over the course of our weekend, I witnessed my son struggle from the "inside". He was so excited for this trip and had been talking about it for months! He consciously wanted to be there and have fun, yet it was HARD for him to relax. He started to pick at his skin double-time. That was my sign to pay attention to him. I kept a close eye on him and when he came near me, I didn't talk him into going back and hanging out with his peers, I just let him hang with me. I was his "blankey".
Night time was hard. At home, he wakes up in the middle of the night and comes to find me. At first I thought I was allowing some kind of silly habit to develop, but then I learned that the over-abundance of cortisol can keep an ARFID individual from truly resting. He comes to me to find comfort and be soothed for how crappy he feels on the inside. During this weekend trip, I literally stayed awake most the night as if I was waiting for him to wander down the hall, crying for me, and unable to get to me. I even heard the word "mom" a couple times and I bolted out of bed and down the hall. But, it turned out to be a soft snoring noise from someone else that I heard that just sounded like the word "mom". Or maybe I was just too on edge and was hearing things. I don't know, but I was prepared to sleep in the lounge with him if needed.
He did make it through both nights, however bedtime was really hard. I had to be with him for 10-15 minutes trying to calm his tears and soothe him with words and songs while he drifted off. Fortunately, he was so exhausted from the busy days that he slept through the night all by himself.
The really cool thing about the weekend was how calm my son was in the face of things that would typically stress you and me. When it came time for my son to climb a 30 - 40 ft tall rock wall, he didn't looked stressed at all. He tried over and over again, with little rest in between attempts, until he made it 3/4 of the way up. I was stunned. Then we went out to the High Ropes course. We were WAY up in the air. It was cold (winter) and windy that day. My son was second in line and just conquered that thing. The wood bridges, the tight ropes, flinging himself off a platform high up in the air to zip line down. AMAZING! I cried as I watched him. I have to be honest, I was shaking in my boots when it was my turn. But I remembered watching my son "own" this course, so I knew I had to. I couldn't believe that someone that lives daily with internal stress and the fear of dying in the face of food, could climb a rock wall and conquer a high ropes course without any hesitation or fear at all. I don't get it. All I can think of is that we can't generalize an ARFID person's fears and anxiety. They don't fear everything, just specific things.
Overall, this was a great weekend with much learning for me. I learned that ARFID can be less about food and more about reacting to how one feels on the "inside". I also learned that parents that have kids with special needs don't have to be "on" all the time either. I should have taken more moments to myself this past weekend and spent more time with the other parents. I think as parents, we can internalize our kids' struggles and cause our own feelings of "yuck" on the inside. We don't have to feel like crap, just because our kids do. I also learned that my son can learn to do more on his own. I don't have to be there to make him feel better all the time. This is one I am going to prioritize. Lastly, I learned that stress is not all or nothing. It can be specific and we should allow our kids opportunities to challenge themselves, because they might just surprise us :)
I was interviewed by another ARFID parent who has a blog series called the "Faces of ARFID". Check out our interview, along with many others!
Faces of ARFID - By Stephanie Elliot
My son is currently in the 4th grade. At his school, when you are in 4th grade, you are invited to go on a weekend field trip to an outdoor based "nature" camp for school. My son came home really excited one day and handed me the information sheets. He said "Mom, I want to go!" My initial reaction was fear. Fear in that "how would my son eat for the weekend?" I attended the parent meeting and the teachers brought up many times how WONDERFUL the food is there. And how ALL of the kids will be required to help with kitchen duties. My anxiety increased as the presentation went on. How will my son eat? How will he handle cleaning dishes with food, other people's food, on them? How will he handle sleeping - because his ARFID still has him waking up once a night? Will he panick, walk around crying and looking for me? This is too much.
I listened further to the presentation and found out that they are looking for parent chaperones. But they only allow so many to go, and there will be a lottery. I signed up for the lottery and wrote a note on the form: "My son has a food intake disorder. I will need to attend to assist with his meals." In all honesty, I was not thrilled about the idea of chaperoning an outdoor weekend field trip in February in Minnesota. Three days of being outside in the freezing cold does not necessarily appeal to me. But, here we go!
I was selected as a chaperone. I am not the only parent attending because their child has special needs. In fact, this is the reason many parents are attending. We are not alone. And teachers these days are so used to kids having special needs and are happy to have help and assistance on the field trip. Although I am going on the trip, the anxiety around the food is still there. I am anxious about having access to a refridgerator when needed. Small planning items that I'm sure will all be fine. I fear witnessing the feelings of isolation that my son may feel amongst his friends. My son also is introducing nuts to his diet through our therapy. This is his only protein other than milk and is VERY important. Will he be able to eat nuts in this setting? He won't let me send any to school in his lunch box. It's hard to have a child that is learning to eat a food that is not allowed in many public eating situations, a food that is so very important for healing his body from malnutrition. My younger son has a tree nut allergy, so we are used to balancing the two at home.
I think about packing for this trip and showing up to the buses with a large box packed with enough food for my son for the weekend. I wonder what they will think of that?! Where will I keep the food once we are there? My son "grazes" too. He has to. The all-carb foods that are safe for him are not very filling and he requires constant eating to keep himself full and at the appropriate calorie intake. Will he be able to eat at the frequent intervals that he needs? I also panick about the fact that he doesn't sleep through the night. He will be in a room with 7 other boys. He is so used to waking up in the night and finding me to help soothe him back to sleep. ARFID individuals never really rest. The adrenals are always "ON". It's hard for them to peacefully sleep and be at ease and comfort. I look forward to the day he can really sleep soundly. But that day is not now.
Really, all of this stress of packing, feeding, intervals, sleeping, etc....look what we do to ourselves as parents! We forget to just let go and see what happens. My son will not starve in one weekend. He will be able to eat frequently enough to be happy and enjoy his trip. If he can't eat nuts, then he will be fine until he gets home. If he wakes up in the night, he will learn to soothe himself or find a friend or adult to help him. When we are parents of a child with special needs, we forget to "not" control everything and just let life happen. It's so hard, I know. But I bet my son has no idea all of the worry and stress I have about this trip. Maybe I should just pack the food and then just enjoy myself along with my son! Like the saying goes "Don't worry until there is something to worry about."
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.