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 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.