From the Archives: Regarding Baked Rodents, and other thoughts on mothering a problem feeder

Another post from my now-defunct old blog. We’ve come such a long, long way since I wrote this in 2007, it’s good for me to remember what it was like back then. If you’re not familiar with the difference between a picky eater and a problem feeder, if you believe as I did that “if you just let ‘em get hungry enough, they’ll eat” is a universal truth, it might help to read this short article right now. There really are some children who will not eat enough to sustain themselves without some intervention and support. If you are the parent of a child like this, you get the message loud and clear that society thinks you are the problem, that you are somehow responsible for the entirety of your child’s relationship with food. Reality is, as always, more complex than our mainstream understanding allows.

Below is a letter I sent to a friend of mine in 2007, when she asked me to share some of my experiences with someone in her online support group for parents of children with sensory integration issues. One of the group members was struggling with the sort of eating issues I’m familiar with. I posted it to my blog the year after that, to keep it handy for my own future comparisons of where we used to be with where we are now regarding eating.

Since I wrote this, we’ve been able to let go of some of these accommodations (the list of eating steps, regular visits to the pediatric occupational therapist, social eating group), while others have become second nature (our table rules, prompting A to keep eating in a low-key way, the gluten-free diet, the shift in my own expectations and vision). When I wrote the letter below, A had about 12 foods in her diet; I don’t count them any more, but she had well over 45 foods 3 months into our gluten- and casein-free diet experiment. She is still inclined to “lose” foods, but we talk about this when we see it happening, and we’re working together to keep things on her “Yes, I’ll eat that” list. We have some new challenges (such as eating lunches at school, away from all prompting and cues to focus on the food), but I know it’s possible to shift these things over time, I know it’s not hopeless, and I know A will almost always eat enough at home to make up for lost caloric intake when she’s away (this wasn’t always the case). Things are better, much better.

Here’s the old letter to my friend:

Hi N -

I miss you!

It snowed here yesterday, but now it’s raining, raining, raining. I’m ready for the Chanukah lights to drive a bit of this gloom away.

Hoo-eee, do I feel J’s pain! A’s eating issues literally wake me up at night – It’s emotionally tough to be the mother of a problem feeder. Especially if you’ve been culturally programmed to equate the ingestion of food with acceptance of your love (ahem).

We worked on eating with our OT for months, and did make some progress. I’ll just ramble a bit, and hope there’s some sense it what I say…A’s primary sensory issues with food seem to be visual and scent-related, although she also has less severe issues with textures and tastes. She usually decides what she will eat based on sight alone or smell – A glimpse of stringy melted cheese, or a sniff of yogurt odor triggers her gag reflex and she loses her appetite for the next 24 hours. So, my main challenge was to find a way to get foods onto her plate without triggering her gag reflex, so she could start the long and drawn-out process of seeing, smelling, touching, licking, tasting, swallowing. It sounds like J’s son is at least working on these steps, which seems like wonderful news to me – Every one of us goes through the steps that she details with new foods, although neurotypical (NT) kids tend to master this quickly, so that the steps are completed quickly, with flow…Think of a 6-mo old NT baby who smears yams all over her body, licks her hands, licks her gums, mouths some yams, spits them out, etc. I’ve heard that a lot of PDD-NOS/ASD kids need a long, long time to work on these steps, and don’t easily develop the see-smell-touch-lick-taste-swallow flow. The first thing I had to do was adjust my expectations. I had faith that A would eventually eat enough food to grow and nourish her body & brain (because the OT told me so), although there were days when she’d only take in a couple hundred calories (at the most). When she loses foods, I tend to panic, and have to remind myself that this eating thing is a life-long process, and I need to take a loooooong view of it, and not set her up for an eating disorder like anorexia/bulimia along the way.

Our OT typed up a great list of Table Rules w/ her social stories program, which we laminated and keep at the table. We also have a social story drawing of all the steps A will take when she meets a new food – There’s an eye for “A looks at the food”, a nose for “A smells the food”, a finger for “A touches the food”, a tongue for “A licks the food”, a mouth for “A tastes the food”. Taste does not imply swallow; that’s the next level, and wasn’t something we expected in the beginning – Even having an icon for swallowing on the page probably would have produced way too much anxiety. Armed with these pages, I helped guide A through the steps in a low-pressure way.  As in “Hey, there’s a carrot on your plate” (positive but mellow voice) “Let’s start with the first step.” As we worked through the steps, both looking, smelling, touching, etc, I’d say “A, you are always trying new things”, or “A, you choose such good foods for your body – You are really getting strong!”, or “A, you are so brave!” in my best OT tone.

She really did start to take pride in her exploration of new foods, and I didn’t force anything too horrible on her – One of the table rules is that she doesn’t get to take foods off her plate or the table, and she cannot tell others what they can/can’t eat. I started eating yogurt at the table again (although I haven’t given her any), after going through weeks of baby steps to get there – Buying yogurt at the store with A in tow, taking it out of the fridge, opening the container, eating it while standing in the kitchen, eating it at the end of the table, eating it across the table; each of these steps done alone on a day, sometimes repeated for a few days if necessary. How tedious to type, how tedious to read, how tedious to live – But tiny steps forward in the minutiae do add up.

We only “worked” on eating at breakfast, lunch, and snacks – Dinner became The Meal When No One Mentions Eating. It’s all about being together as a family, not about food, not about eating – I make sure there’s one food that A is likely to eat, I assemble her plate w/ small servings of everything we’re serving, and we only discuss food if she brings it up. This is a challenge for D, who has to fight his ingrained desire to say helpful things like “So help me, you’re going to try that broccoli!”, or “WHY WON’T YOU JUST EAT?”, or “If you don’t eat your dinner, there’s no bedtime story!” It’s a challenge for me, too. I have to work hard to keep my focus on my own plate, not on A’s.

At the same time that we were working on this at home, and with the OT each week, we were also more careful to rotate the foods she would eat – If she had a quesadilla on Monday, she couldn’t have one again until Wednesday. I didn’t serve endless helpings of a favored food at a single meal, because problem feeders will binge on a preferred food and then reach a sensory burn-out and lose the food – not just for weeks like typical kids, but for months or years. We have to prevent binges, which means meal planning, and a lot of extras hidden in foods to keep her from starving. I do a lot of baking with whole eggs, fats, and pureed veggies hidden in muffins and cookies, tofu popsicles, kale smoothies, etc. I also let go of my vision of my daughter as an adventurous eater – I grew up in a family that is all about food, the stranger the better, and I liked to think A would follow in my footsteps. I had to realize that she is extremely adventurous, it just doesn’t look like it if you use NT-Vision; I think her sensory issues make eating a grilled cheese sandwich the equivalent of me sitting down to eat a whole baked hamster, or maybe a bowl of eyeballs. I had to make my peace with the possibility that my daughter would grow up to be That Woman Who Only Eats Plain Quesadillas (cooked with no butter until barely brown and sliced so no cheese is visible) and Grapes.

Removing the anxiety at dinner (the frustration and genuine worry coming from D & myself was more than palpable), and working on things a tiny step at a time, coupled with finding some new ways to get calories into A started to pay off. She ate meat for the first time this past summer, and although she hasn’t found any of her lost foods, she has actually added a few new foods, and started to take in larger quantities of the ones she will eat.

Recently, we’ve seen some sort of amazing changes – 3 weeks ago, I removed all dairy/casein from our home food (next step is preschool, etc), and this past week I started to take out gluten, too. We won’t know if this is what’s behind the changes until we’ve eaten GFCF for at least 3-6 months, when we can re-introduce casein & gluten to see what happens…It could be the new diet, it could just be one of those surprising, seemingly spontaneous, steps forward (to be followed, of course, by another regression?). Only time will tell, but the past week has been very, very different. A is telling me that she’s hungry (a first!), she’s actually chewing and swallowing new foods the first time she sees them on her plate, and liking some of them, and even asking for more (another set of firsts!). She’s not a typical eater by anyone’s standards, but at least she’s eating, the dark circles under her eyes are less pronounced, and she actually has rosy cheeks.

I hope some of that helps – I have no idea what I’ve written, and I’m just going to send it off while I can!

xo,
R

From the Archives: Why Labels Aren’t Necessarily Bad

I am in the process of closing down my first blog, but there are a few posts I don’t want to lose. Here’s the first one from my blog archives, an essay I read as my contribution to a panel about autism at a local health expo last year.

I left out one important detail, because I knew that the brilliant Michele Bombardier, who was also part of the panel, would bring it up: There is solid evidence that parental concern about a child’s development is highly predictive of the existence of a developmental issue. In other words, any time a parent is worried because their child doesn’t seem to be developing typically, their health care providers should perk up, take that seriously, and start gathering data to illuminate the truth about that child’s development. Sadly, it seems to be common for doctors to say things like “Don’t worry” and “Let’s wait and see” and “Oh, no, I’m sure everything is fine” in response to parents’ concerns. I will link to the studies re: parental concern and developmental issues as soon as I have time to track them down again – They really do exist.

I love public speaking, and I used to be able to breathe and speak and enjoy myself while talking away to a roomful of strangers. But whenever I talk about this topic, I struggle to breathe, to keep my voice from wobbling, to read my own words without stumbling over and over them. Anyway, here’s what I shared:

When my daughter was almost 5 years old, after many years of asking her various doctors for explanations and assistance, she was diagnosed with Asperger’s Syndrome.

I was so accustomed to being told that my child would “grow out of it”, or that my first-time-mother eyes were over-reacting, I fully expected to leave the neurologist’s office with more of that same message. Still, I can’t say this diagnosis was much of a surprise to me. It explained the things I’d been pointing out to friends and family starting during her newborn days: Her active avoidance of eye contact, her lack of babbling, her obsession with ceiling fans, the long lines of plastic animals stretching across the living room (arranged by species, color and size, feet all perfectly aligned), her very negative feelings about playgrounds, play dates, and parties. The afternoon we drove home from our diagnostic appointment with the pediatric neurologist, I was filled with overwhelming relief, and a sort of giddy happy-sadness, or was it sad-happiness…I’m sure there’s a German word for this complex emotion, but everything I felt was shot through with relief: Relief that this label would bring with it access to all sorts of professional help; relief that now I’d be able to focus on articles, studies, and ideas that would help me understand my child; relief that there would be no more midnight Googling of keywords and fragments of the whole that brought terrifying misinformation; relief that I would finally be able to help her to be a happier person, to have a happy childhood.

I know that not everyone wants an autism spectrum diagnosis for their child, but the idea of a label didn’t scare me. I was more worried about the labels my child was already getting from her peers, teachers, and family members in the absence of a more official explanation. We needed help, and I was open to anything that would articulate how my child experiences the world, how to meet her where she was, and how to help her realize her potential. Being diagnosed on the autism spectrum didn’t change my child, and it didn’t change my love for her. My goals as a parent are the same as they were when I first felt her rolling like a sleepy, tangled eel in my body, or when I first held her glowing body in my arms – I want to be the sort of mother who can help her become a happy person, a person with a love of learning, with a love for other people and trust in their love for her, and a love for the world that translates into acts of loving-kindness, a person who has a rewarding and happy life.

Fortunately for my child and for every other child diagnosed today with ASD, there has never been a better time to be growing up with autism. There are professionals in a wide variety of fields who will not give up, who are researching and working and experimenting, thinking in new ways, and this has brought us concrete help. There is a vibrant ASD community that is connecting people with ASD to each other in new ways, and that is helping those of us in the neurotypical world to understand that everyone, even someone who is non-verbal, has plenty to say, that everyone matters. There are other parents who are traveling the same path, parents who really do know what I mean when I say that our trip to the bulk department of the grocery store didn’t go so well, and who share my deep joy when things do go well at a birthday party.

All of this has added up to mean that my child is much happier today than she was 3 years ago; it means that she is growing up in a society in which autism is no longer invisible, and she benefits from this increased awareness, this growth both in compassion and in research; it means that I am a better parent because I better understand my child, and have found ways to nourish her, body, mind, and soul.

Please, if you suspect that your child may have autism, don’t give up – Be assertive, be bold, know that you are not alone, your child is not alone. There are people, out there in the wider world and right here, who will stand with you, who can help in many ways.