I've wanted to write this post for awhile, but of course it took time to gather my thoughts and information and put it in a form that would be easy for people to read/comprehend.
First, I want to shout out loud how BEYOND OVER-JOYED I am about Stephen beginning to crawl (yes, I did say it out loud)!!! Some of you may have not heard, but yep yep, he did it! The first time was in therapy last Friday, by himself. It was wobbly and he didn't go far, but the excitement from his therapist and I was contagious as others walked in to see what was going on. We were literally jumping up and down with happiness!
I know to most it's not that big of a deal...all babies eventually crawl, right? Yes, they do. But many who crawl late have some sort of developmental delay. Top that off with a baby who has had feeding difficulty since birth, and as a parent, you begin to worry. If it was you, and you had gone through all we have, you'd be concerned too (it drives me nuts when people say not to worry, as if children with different needs don't exist). 12 months is the far end of the normal range for crawling, and going by Stephen's birth age, he is 11 months. Going by his adjusted age, he is 10 months or so. At 6 months, when he couldn't sit up, we weren't too worried. By 9 months, he couldn't keep from falling over while sitting up, still. Lots of people ask us if he's walking yet. When we say, "he's just now crawling," we either get looks of shock or hear "he'll be fine."
Thanks to all of the research and reading I have done, I know how very, very closely feeding disorders are connected to developmental delay and other underlying problems. Not to mention doctors have told us to our face that feeding problems and developmental problems go hand-in-hand like love and marriage. You would be shocked at the number of children with autism, cerebral palsy, etc... who are on feeding tubes or have been in the past. Needless to say, we have had to keep our eyes open for other possible problems.
So little knowledge is out there about feeding aversions/disorders that most of the time I get blank stares (and an occasional eye roll) when trying to explain why my little angel is on a feeding tube and doesn't want to eat. I still don't have all of the answers, but I feel like I can say I understand a little bit more about my son and his "condition."
I can also understand why some people think nothing is wrong with Stephen. One look at him and he seems fine. Most people think of a child having special needs as one who looks like he/she has something wrong. I've had one family member say to me "well at least he doesn't have something like down syndrome" (as if that is supposed to help...and even if he DID have that, which he doesn't, I would love him just the same)!!
In order to help those of you who can't understand, to understand, I wanted to do a couple of posts about feeding disorders/aversions...what they are, why they exist, what are the causes (if any), and the myths surrounding them. I hope that those in the category of denial or refusal to understand when I explain it in person will read this. I am going to start out with the myths. All of my factual information comes The Kennedy-Kreiger Institute and also the extremely helpful book Just Take a Bite recommended to me by Stephen's therapists. The rest of the info comes from having a living, breathing example of the subject. :)
Here we go:
Myth #1: Eating is simple. All babies/children have a natural instinct and ability to eat.
The truth about this one is that...well, it just isn't true. It's not very common that a baby is born with no desire to consume what his/her body needs to survive and grow, but it still happens. Or, a baby is born with a desire, but there are other underlying issues at hand that make the process of eating difficult. The majority of the time (and this is a fact based on research) it happens with babies who are taken from the womb when they are not ready and who are born early by C-section. Every feeding therapist we have spoken to can testify to the amount of time they have spent in the NICU trying to feed these little ones. But unnecessary pre-maturity can cause the feeding aversion/disorders also. A doctor may be ready due to convenience, a mother may be ready due to exhaustion and swelling, but if the baby isn't ready to come on it's own, that means he/she is still developing. Some babies do not develop a natural sucking ability/pattern until they are 38 weeks along. Doctors these days take babies sooner than that and call them full-term. Full-term is when the baby is ready to come.
Some children have a harder time and special needs that keep them from eating properly. Some have oral-motor dysfunction (like dysphagia, which is difficulty swallowing), some have severe gastrointestinal discomfort (like true acid reflux...not regular spit-up, which is normal), some have cleft palate and cleft lip, some have sensory processing/integration disorder, some have an increased gag reflex (which is sensory-based) and some have all of those or combinations of them. Stephen has several of these factors that contribute to no desire to eat. When eating is hard, or it hurts, or your brain can't process the feeling of hunger, even an infant is going to associate food with being bad.
Myth #2: You are a good parent if your baby is healthy, growing, and looks like a normal baby. It must be something the parent is or isn't doing right if the baby doesn't eat.
The first time I read this one, I sobbed. I still wake up every morning and look in the mirror and tell myself that I love Stephen, and it is not my fault. So many other Moms I have talked to with babies like Stephen or babies with different needs feel this way, and much of it comes from our society's expectations of perfection. We live as though all babies/children are born normal. But they are not. Also, very rarely is it the mother's fault that her baby cannot eat, or if her baby is born with something wrong. Doctors always say it's due to the mother abusing drugs, drinking alcohol, or smoking while pregnant. But out of the Moms I know whose babies have challenges, not a one of them did anything wrong while pregnant.
It is horrible for someone to blame the parent for a child's medical conditions or expect the parent to fix it. Nor is it wise to pretend that there is nothing wrong with the child if there is. Not all babies (or adults) who have medical conditions actually look sick. But the child may be struggling anyway. Parents of children who don't eat must face this fact every day and cannot live in denial. It is harmful when others who are needed for support do live in denial.
Myth #3: If you just make the baby eat, he'll learn to do it and eventually like it. A baby will not let him/herself go hungry or starve to death.
"A popular daytime talk show host recently presented his views on 'picky eaters' stating that 'children will eat when they are hungry, and they know how much to eat and when to stop eating.' He went on to say that 'children will not starve themselves.' Finally, he suggested that children who are 'picky' are in a power struggle with their parents and that the parents need to 'win the battle.'" (Just Take a Bite, p. 42)
Although this type of mentality is common, it is a huge roadblock for children with feeding disorders. In some cases, with babies who are born early, the sucking-breathing-swallowing pattern will develop, the baby will learn to eat, and yes, eventually like it. In rare cases, the baby has a difficult time out-of-womb learning to suck-breathe-swallow in order to eat. Again, there can be underlying problems for this, and the most common are oral-motor dysfunction and sensory disorders. As stated already, forcing it will not work. A baby will learn to distrust the breast, bottle, and food if made to eat. Therapists call it "force feeding." It will cause further oral/feeding aversion and create more problems. This is why Stephen is on a feeding tube. By forcing him to drink from a bottle, we were making things more and more complicated. One day he just shut down and decided he wasn't eating anymore, even if it meant he would starve. This happens with the majority of children with feeding disorders if they are forced to eat. They will shut down and will go hungry if need be.
Lots of people say to us that if he was their child, they would make him eat. Unfortunately, we did that. Force feeding only made the problem worse, and furthered the sensory issues he has as well. It breaks my heart some days knowing we were only exaggerating the problem when he was so little. But we didn't know what was wrong, and I guess as a parent, when it's your responsibility to feed your child and ensure their growth, you have no choice but to do what you can. At least now when I feed Stephen in public, I don't have to force it down him, even if I still get looks that make me believe any moment someone is going to come up and wrap a banner around my shoulders that reads "Worst Mom of the Century...Can't Feed Her Baby."
Myth #4: Food tastes good and feels good, so all babies and children should enjoy it.
Unfortunately, food doesn't always taste good or make one's tummy feel good. Children with severe gastrointestinal discomfort, food allergies, or inability to feel hunger may be terrified of eating because it does not feel good. Eating is associated with pain of some sort, and the child does not want to eat from fear of the pain.
Myth #5: Children who are "good eaters" are good children.
I have heard this one, and it is just plain mean. Parents, family members, doctors, and anyone else cannot judge the worth of a child based on his or her eating patterns. Our society does this with all children (just sit in a school cafeteria for lunch one day), and when you have a baby with a feeding disorder, it is even worse. The most humiliating thing for us (DH and I) is when we have people we know try to get Stephen to eat table food, although he isn't ready for it (and is barely eating baby food). The looks of disappointment are obvious, and then we feel sad and disappionted as well. It is better to focus on the wonderful accomplishments of children with feeding disorders/aversion, rather than what they cannot or will not do normally (eat).
Myth #6: Medical conditions that make a child not want to eat can be fixed with medicine or therapy.
In some cases, yes, medicine and therapy can greatly help. However, it doesn't always work, especially for children who have behavior-based feeding problems (like children with autism). Also, it is not a quick fix. With Stephen, we have determined that his feeding disorder is directly associated with his sensory disorder, and though sensory problems can be overcome, it may take a long time. We have to re-program his nervous system that was jolted from birth, to help him not be afraid of food, to help him realize it won't hurt, and to help him feel a desire to eat again. When Stephen stopped eating altogether, we did not understand that a 4-week feeding program would not fix the problem because we did not know the depth of the problem we were facing. We also do not know why all of the acid reflux medicines, along with surgery, did not correct the gastrointestinal problems, though they have helped a great deal. Finally, we still don't have all of the answers and may not have them until Stephen is older.
Well, before this post gets WAY too long and overwhelming, I am going to stop there and continue in part 2. I really appreciate those of you who took the time to read this, and I hope it helps some of you have a better understanding of what feeding disorders are.
Until next time...