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.
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.