Faces of ARFID Series, Erin's son
Erin is from Minnesota; Erin’s son is nine years old and has ARFID. Here, she shares what it’s like to be a mom to a child with ARFID.
At what age did you realize your child had ARFID:
12 months old
What are your limitations (or your child’s limitations) with ARFID (food/friends/social activities etc.?)
My limitations as a parent – I can’t have the foods in my house that I want to. I would prefer to have organic, minimally processed foods. My son can’t eat this, so I end up buying what I would consider “junk” foods in order for him to feel safe eating.
My son’s limitations – At his age, he is very aware that he is different. Up until this year at school, he was not allowed to eat his preferred foods at “snack time” at school because they only allowed fruits and veggies at snack time. He was told he could go sit in the Nurse’s office if he wanted to eat his “preferred” snack. On occasion, he gets funny looks at lunchtime from the cafeteria workers as well as his peers. He doesn’t eat when he goes to birthday parties or other “kid” events. He appears embarrassed when he is at a day camp or other day-long events where he has to eat because the event is so long.
He has a school weekend camp coming up. I have to chaperone to make sure he is fed the foods he needs and when he needs them. Many people think this is picky eating and tend to try to get him to eat regular foods if I am not there. He also wakes up in the night because he is on adrenal overload. I am stressed out about how his school weekend camp will work if he wakes up in the night and I am not there to help him back to bed. It’s crazy. It’s a lot. This should be an easy and fun kid weekend, but it turns into a crazy, stressful, “How is this going to work out?” weekend.
Our family limitations –
We can eat out as a family, but he gets bored because he can’t eat with us, plus he gets anxious in that setting.
It’s hard to travel. We had to check a bag (at the airport) that was FULL of his preferred foods when we traveled to Disney World last summer. We stress about being able to find foods he can eat when we travel. We have to be very prepared to always have snack foods available at all times when we travel because he gets hungry frequently.
List of safe foods:
- Cold cereals (just a few select brands) - Chips (select brands) - Cookies (chocolate chip or vanilla creme) - Crackers (Ritz, Wheat Thins, Cheese Its, and other similar types) - Pretzels (only the "stick" shape) - Popcorn (plain) - Chocolate Pudding (Jello brand only) - Popsicles (red color only) - Candy (M&Ms, Tootsie Rolls, suckers) - Water - Chocolate milk (Kemps low fat only) - Frosting off the top of cake or cupcakes - Hot Chocolate (Dunn Brothers) w/ milk (on occasion) - Multi vitamin (liquid only) - Vanilla ice cream (on occasion)
What steps have you taken to try to get help?
SOS Feeding Therapy (OT) Speech Language Therapy w/ Feeding Approach (SLP) Group SOS Feeding Therapy (OT) In-Home Feeding Therapy (Ellyn Satter approach) Assessment w/ Dietician Nambudripad's Allergy Elimination Technique (NAET) Children's Yoga Classes Pediatric Behavioral Therapy w/ Psychologist Higher Brain Living Nutrition Response Testing Spiritual Healing
I am now taking the ARFID training to help him.
What is the most frustrating thing about ARFID for your child? For you as a parent?
The absolute most frustrating thing is that most doctors continue to treat it like it is treatable with exposure therapy, and it is not. The first, and only person, that I have met that truly gets it is Dr. Kim. And there is only one of her. I am taking ARFID training from her to help get a better understanding of the treatment in the MN area.
I also feel the most frustrating part is not being able to help my son. I watch him struggle and suffer nutritionally and I can’t help him.
What do you wish others knew about ARFID:
It is not treatable with exposure therapy. It is not a choice. Our kids actually believe they will die if they eat most foods. This cannot be treated by putting that same food in front of them with the expectation that they will be OK with it. It triggers their fear and that is not a good way to help them.
If you met someone newly diagnosed with ARFID, what words of encouragement would you offer that person?
I give them my website, www.arfidmom.com, because it has our story and resources. It has links to other websites and resources. It is full of people that are just like them and they need to know they are not alone in this and there is help.
What do you want society to know about ARFID?
When a family member has ARFID, the whole family has ARFID. That is so true. It affects us all each and every day. We can’t do what we want to do, we can’t have what we want to have in our house. It’s hard.
Is there anything else you would like to add?
I personally feel that when something difficult happens in life, we need to take it and do something positive with it. … There is a reason we are going through this struggle. I feel that learning and helping others is a way to move forward.
