A lovely mom I spoke with today inspired this blog. She said, “Nobody gets it. No-one understands what it’s like to have a child with feeding issues.”
This Mom is a great one. She has two children, both with a Pediatric Feeding Disorder (PFD). She is dedicated to helping her children with their feeding issues. She juggles school, medical appointments, feeding clinics, and therapy sessions. At home she conducts food play activities, cooks with her kids, involves them in choosing new foods, develops learning activities and social stories about food, and creates theme nights about new foods…I could go on. This Mom is doing everything right, yet her children continue to have severe feeding issues.
In my many years of practice, parents have repeatedly expressed to me their angst about family members, friends, grandparents, teachers, and even doctors that just don’t “get it” when it comes to their child’s feeding issues.
Unfortunately, these types of statements are all too familiar to parents of kids with feeding issues. They may be innocent and have their roots in a lack of understanding, but they undermine parents and make them question themselves and their ability to parent. The same Mom that inspired this blog, the one that is working tireless to help her kids, also said “I must be doing something wrong.” Quite the opposite, she’s doing everything right. Progress in feeding is gruelling, exhausting work and it takes time. Changes occur in teeny, weeny, tiny, little baby steps that are often difficult for parents to recognize when they are entrenched in 3 meals and 3 snacks per day, desperately trying to help their child grow, learn, and thrive.
When it comes to parenting, everyone seems to be an expert. I never received so much free, unsolicited advice as when I became a mother. I had a sick child who was followed by highly respected doctors at SickKids due to a rare blood disease, yet there was no shortage of “expert” advice from friends and family. I questioned myself, “Am I overreacting?”, “Should I be doing more?”, “Why did this happen to my child?”, “Did I cause this?” That wicked voice in the head is never louder than when you are a parent.
Going out to a family gathering or celebration with a child with PFD can be extremely stressful for parents. They dread the meal and everyone's reactions when their child is unable to eat or they have to bring a separate meal for their child.
A teacher might say that an older child in her class shouldn't drink from an infant bottle, but perhaps doesn’t understand that for this child on the Autism Spectrum there is no other way that he will accept his formula, which is critical to his growth.
A doctor may advise parents to just offer what the rest of the family is having for dinner, stating that the child will eventually become hungry enough and eat. Perhaps the doctor doesn’t realize that children with feeding disorders will often go hungry and starve themselves unless they are offered something that they can eat. Missed meals = weight loss = extreme parental anxiety.
Grandparents did things differently in their day. “We were required to finish our plate and “try” everything we were given.” Food was not to be wasted. Even the most loving grandparents can make parents feel like they are doing things wrong. Many grandparents that I work directly with in my clients’ homes outwardly question my approach and express their disagreement with my recommendations.
Friends mean well, but they may compare. This hurts. There is nothing more painful for a parent of a child with a feeding disorder than to watch other children that love to eat digging into their food with vigour. Dare we compare?…oh yes…. “How old was your child when he walked?”, “Sebastian is talking already!”, “My Brynn is potty trained already!”, “Khalil loves vegetables.”, “Jayden is growing so quickly!” These well-meaning comments are excruciating to parents of children with feeding issues and/or special needs. Enter doubt, fear, guilt, and grief yet again.
Even spouses can be misaligned when it comes to their child’s feeding issues. Sometimes they blame one another. Other times resentment develops because one parent is doing all of the feeding and feels judged by the other. They are burned-out and overwhelmed with conflicting advice from friends, family, and professionals.
Eating is emotional. Feeding your child is a way of giving and receiving love. It’s the one thing that parents feel they should be able to do successfully. When feeding is an issue parents experience loss, grief, frustration, and anger. They feel like they have failed. They wonder if their child’s feeding issues wouldn’t exist, if they had only done something differently.