I had a friend long ago who I knew during a particularly stressful time of my life; I had, in fact, been diagnosed with “generalized anxiety disorder.” Eileen, an absolute angel, told me to pick one day a week and designate it “Worry Day.” If anything came up during the week that was causing me angst, I was to put it away and agree with myself that I would pull it back out and worry my guts out about it on Worry Day (but not a minute before!).

Alas, Eileen died suddenly a couple of months after imparting that advice. (Yeah, can you believe it? Boy did that year of my life SUCK.)

Not to start on a downer but that’s my way of introducing that Tuesday is now my official Worry Day because it is the day I take my son to the OT. Lately, he’s done great during his sessions. Eats and behaves like a perfect angel. I have to bring video in to show Jessica how he is with us, which is to say, not so well behaved. I have video from the weekend where it took 7 or 8 minutes to get him to take ONE BITE of quiche. A dish he’s eaten with no trouble many times before. (To be fair, he does not do this at every meal, just a few times during the week.)

Jessica analyzed the video and suggested a couple of changes to my basic approach. On the video, I can be heard reminding Hunter that he can have some more yogurt after he “takes his bite.” I also encourage him by saying “you can do it.” No more, she says, because that’s still attention. I am to tell him to take his bite and shut the heck up. She taught me a new technique for controlling the waving arms and suggested that if he’s still fussing after about two minutes, I make the bite smaller or dip it in yogurt. Just to get him started.

After that first bite, he’s usually fine. She reminded me again that he has the skills and that this is all behavioral at this point. I asked how long after they “get it” at therapy do they start “getting it” at home consistently. She said typically about a month. So we’re a couple of weeks away. Fingers crossed!

She’s recommending that we have a behavioral psychologist come into the house to observe feeding time and make suggestions. So we’re working on finding one. It’s unlikely that insurance covers this. <sigh> We weaned him off the Prevacid last week and she said to keep an eye on that because reflux can cause them to not want to eat.

But primarily, it’s a behavioral issue. And it’s subtle, small things because from what she’s observing, I am following the proper protocol. He is just super, super stubborn. And no, he didn’t get that from me. (Well, OK, maybe he did.)

How did I get here? Am I that big a pushover? What am I doing wrong? I have no idea but today is my one day a week to stress about it. Today is Worry Day.

Tomorrow, thank goodness, is another day.

I cannot believe that three weeks ago, my son was vomiting and screaming bloody murder to eat a bite of fork mashed food and today . . . well, today, he FED HIMSELF banana, broccoli, chocolate doughnut, hot dog, pasta and French toast. With his fingers. He shoved the food in his mouth and I choked back the tears. I couldn’t believe it!

Here’s how it went down: We arrived at OT and I told Jessica he’s doing fine with eating his “big boy” food as long as we feed it to him on a spoon. And by “fine,” I mean he protests for the first few bites but usually eats the rest without fussing. This is a HUGE improvement from a few weeks ago. But the only food he’ll pick up and eat with his own fingers is a cereal bar and occasionally, pieces of a Vanilla wafer (but usually only if it’s in his stroller, not in his high chair). Jessica explained that our fingers are more sensitive than our mouths and it can take a while for kids with feeding disorders to pick food up. Truthfully, I can’t stand it if my hands are sticky so if he is a little “sensory” then he comes by it honestly.

She said this might take a while but we would begin working on it. We know he likes bananas because he will let me hold that in front of his mouth and he takes bites. So we started with a banana. She put her hand over his and showed him how to bring it to his mouth. No resistance. Hmmm . . . She tried again. Easy as pie. She told him to do it and he picked it up and shoved it in his mouth.

Then we cut bits up and put it on his tray and he picked one up after another and kept shoveling them in his mouth. I actually had to tell him to slow down and chew. I never thought I’d get to say those words!

After he had the banana down, we started putting bits of other types of food on his tray. He occasionally protested but we just told him he had to do it (and rewarded him with bites of yogurt). We clapped and praised him.

Honestly, I’m still in a little bit of shock. My husband was choked up, too, when I told him about it. It was like watching some other toddler, merrily putting bits of food in his mouth. We’ll be working on this at home, but if he keeps it up, then WE’RE DONE! He’s 19 months old and finally, off baby food. And this close to being done with feeding therapy. Wow.

He did it!!! And look how pleased he is with himself. Well done, Son. Well done.

Tuesday, dreaded Tuesday. I have a love/hate thing going on with our weekly OT sessions. Love that we have professionals working with him and helping him along; hate that he has such a tough time. Much crying ensues. And after last week’s HELLACIOUS setback, I thought today’s session was going to suck. So I am VERY happy to report that we had a GREAT session today!

Hunter huddled and hid on my lap at first. He protested when we put him in the high chair. But hey, I’ll take protest over the full-on scream fest we had last week. I fed him bites of fruit, black beans, ham, dehydrated corn and peas, steamed broccoli and carrots, fruit cereal bar, and yogurt as a reward in between. He took all his bites and barely fussed.

Basically, he made a liar out of me. I had been emailing Jessica (his OT) and started the session off showing her a video of just how awful it was last week. And then he proceeded to have one of his best sessions ever.

To top it off, Jessica had asked for Liz, the social worker to sit in and give us tips on how to handle his regressive behavior. And lo and behold! He behaved great. Thank goodness I had the Flip video so I could prove I wasn’t a crazy lady.

Liz did give me some other behavioral tips and told me that they should have done a better job of informing me of the ebbs and flows of therapy. Two steps forward, one step back (OK, one mile back last week).

After the OT, we went to Buster Brown (there’s an old Buster Brown shoe store at Lenox Square; Buster Brown shoes don’t exist any more but the guy opened the store way back in the day and just kept the name). Marcel, the 86-year old sales woman, measured my son’s foot and he now has his first properly-fitting pair of shoes! And now Mommy knows what size to look for online on sale.

Great morning.

Five times a day, I feed my son. That’s five screaming, crying, twisting to get out of his seat, Mommy-please-save-me sessions. Five times a day, I encourage him to take his bite and watch him refuse, shake his head, and sob. Five times a day, I have to maintain an implacable countenance as he chokes, gags, and occasionally – like yesterday and just now – vomits. When he vomits, I have to throw a towel over it, say “that’s OK” and make him take another bite. (Otherwise, he will learn that he can vomit to stop the feeding.)

The OTs are telling me this is a regression because we moved and it is temporary. They are telling me to stay firm. It’ll be better in a week. That Hunter has to learn and that I have to be “the boss.” (As his second OT, Karen, told me today, “you are the dictator in this situation.”)

Nobody is telling me how to stop crying in the shower or mend my broken heart. I just want to scoop him up and let him drink a bottle of milk forever. I know I can’t and I know that’s bad for him but this is absolutely draining us both. Five times a day my heart breaks.

I don’t want to feel sorry for myself. I know my son’s disorder is relatively mild and that there are moms out there who are dealing with much tougher things. They are truly brave and courageous. Admittedly, I am weak when it comes to this stuff.

Give me a tough CEO prick any day. Hell, give me the BP execs. I think I can handle them better than my 19-month old.

Don’t get me wrong; I love our OT, Jessica. I just hate taking Hunter to feeding therapy sessions (and he feels the same way). Every Tuesday, I grab a shower while the nanny packs up the food we want to work with, and we head out the door to fight the last vestiges of rush hour traffic en route to our appointment.

We usually conduct our sessions on the floor, with Hunter in my lap. He was so hysterical when we first started back in January that we couldn’t get him to calm down in the high chair. We found we made more progress if I held him. But Jessica wants to start replicating the home feeding environment so he’s back in the chair. And he’s NOT HAVING IT. Crying, screaming, BIG tears rolling down, twisting to get out of the chair to me, and BIG RED SPLOTCHES on his forehead. That’s how upset he was. He had splotches.

I keep telling Jessica that she needs to bring me a margarita if she expects me to sit through this every week. <sigh>

But really, how can I complain? My poor little guy is having to do all the hard work and he’s scared to death, and mad as hell.

So where are we? He has two finger foods he’ll eat now, which is a big milestone: cookies and those soft cereal bars. We were at the zoo this weekend and I put little bits of cookies in the food tray in his stroller and he stuck his dirty little hands in there and fed himself cookies. I CANNOT TELL YOU HOW HAPPY THIS MADE ME.

He’s still screaming and refusing foods at meal time. My homework for this week is to regain control of meal times. When Hunter puts up a fuss, I sometimes say, “I’ll wait for you to calm down” while I hold the spoon in front of his face (as he furiously shakes his head “no!”). Apparently, I’m not supposed to do that because he can use it as a control device. Hmmm. . . who knew. So I have to make him take his bites. And when he gags and chokes – as he always does – I stay calm and remind him to chew and swallow. Jessica says he has the skills and it’s all behavioral at this point.

I suppose it won’t be the first or last time I have to break him of bad behavior but dammit, this is HARD work. Every single meal and snack. That’s five times a day if you’re counting. Thank goodness for the nanny who gets a couple of those! (And she is really, really good with the feeding therapy.)

Also, the other times I’ve worked on behavioral issues, well, they’ve been easier. It took about two days for him to quit screaming about holding my hand in parking lots. Sleep training was a breeze compared to this. . . a few nights and he had it down. This takes months or years and is a brutal, slow process. And I hear horror stories all the time about the kids who are 3 or 4 and still problem eaters. I hope my little guy sorts it out.

Tonight, he made it through a small sliver of spinach quiche. We don’t give him any baby food; just age-appropriate “real” food. I don’t think he’s getting as many calories as he was on baby food so we have to watch his weight and make sure he doesn’t start to lose weight or fall off his curve.

Still, with all the fussing and small steps, it’s important to remember that three weeks ago, the kid choked on one small bite of cereal bar. And now it’s his favorite food and he feeds himself! So we’re getting there.

Right?

Right.

p.s. – Sorry for the rambling nature of these posts. It’s impossible to collect my thoughts on such an emotional issue. I mostly put this up for other mothers who might be going through this. I had a tough time finding info on it online so I’m hopeful this will help somebody some day. There is hope. It does get better. Stick with it!

And send me a margarita mix.

Feeding Therapy from Sherean Malekzadeh on Vimeo.
I usually dread writing these posts; progress is slow. The system we’re using is what our OT calls “progressive de-sensitization” based somewhat on the SOS feeding therapy protocol developed by Dr. Kay Toomey. In the beginning of his therapy, we worked on getting him to tolerate the SIGHT of table food. I remember putting a few pretzels or puffs on his tray and watching him scream and twist his body to get away from it. If he tried to brush the food off, I had to say “food stays on the table.” I was to do that while trying to make mealtime pleasant and fun. Not easy.

So he got through that. Then we had to work on getting him to TOUCH the food. We set up “snack therapy” times where we had all sorts of different shaped food and textures and played with it. We pretended cookies were cars. We stuck pretzels in the middle of doughnuts to make wheels. Slowly, over a period of weeks, he started touching and playing.

Once he mastered that, we had him KISS the food. He’s still not crazy about this. At the end of snack therapy, he has to clean up by picking up each piece of food on his tray and throwing it away into a little garbage can. Some kids have a harder time with “wet” foods (like lunch meat) but Hunter did all right. He seemed happy to throw the stuff away! But getting him to kiss it before he tossed it – not so easy. So we had to touch it to his lips and then give it to him to throw away.

OK so we survived that and the OT declared he was no longer averse to SEEING or TOUCHING food. Now we’re working on introducing new TEXTURES. In addition to his regular, pureed baby food, we started giving him fork-mashed food like sweet potatoes and avocado. He does well in therapy with it but at home, he puts up a fuss. That’s because he has the skills but has a BEHAVIORAL aversion and thinks he can get away with more at home. So after one particularly successful session at the OT, my husband was feeding our son. One bite of avocado and he vomited all over the place. Two steps forward . . . one step back. This is typical, I’m told.

Fast forward two weeks and he can’t get enough avocado. He will eat an entire one at dinner. Yay!

He’s up to eating small bites of ravioli, spaghetti-o’s, banana, peaches, pears, potatoes – all spoon-fed. He does not want to pick food up and feed himself. And he still struggles with the table food we give him. Lots of choking and gagging but he’s learning to work through it and chew, chew, chew first.

The process is exhausting for me and I can only imagine for him. He RARELY wants to eat the table food. The protocol is we have to tell him to “take your bite” and then stick the spoon in front of his lips until he opens his mouth. Well, any of you with toddlers knows what happens next, right? He smacks the spoon away, shakes his head vigorously “no,” and SCREAMS and CRIES bloody murder. In the face of all that, we are to remain calm, block his waving hands with our arms, lean in some more and hold that spoon there until he takes a bite.

It feels like forced feeding to me and to be honest, I’m not crazy about that. But what I’ve learned is that eating is a LEARNED behavior and if they don’t practice, they won’t learn. So hopefully, we’re not screwing him up and setting him up for a lifetime of eating disorders.

Yesterday, he had his first meal of entirely table food. No baby food. He fussed at first, but then ate pretty well. It’s a huge moment for us. I’m so proud of him and of course, I’m crying as I write this. We still have a ways to go – working up to self-feeding. I cannot wait to see his grubby little hands shoveling Cheerios into his mouth.

Last week, we had dinner with friends whose daughter is 12 days older than our son. I actually teared up watching her feed herself. She can pick something up and take a bite off it which I know is normal for her age but seems so far off . . .We’ll get there, I know. My little man has had to be so brave. Understand that eating anything other than baby food absolutely terrifies him and yet, he’s learning to push through his fear. I am so proud of him!

That sounds so cold and clinical, doesn’t it? “Feeding update,” as if it’s simply medical news that I have to share. It’s not, of course, that simple. Feeding — eating — are complex activities, bound up as they are in shared history, memories, nurturing, and love. I literally tear up when I see another child my son’s age greedily stuffing Cheerios or strawberries in her mouth. I wince when my friends lovingly tell me that their child was a picky eater, too, and that Hunter will grow out of it. (If only he were just picky, I want to shout!)

He still refuses to eat. I have been taking him to occupational therapy at Children’s Healthcare (CHOA) and I have enrolled him in a state-run program called Georgia Babies Can’t Wait. (Ironically named because it takes months to get in the program.) While we haven’t had a therapy visit yet with GBCW, I am excited about starting with them because their therapists come to the home. I believe Hunter will respond much better in his natural environment. He freaks out when we step into the small, claustrophobic therapy rooms at CHOA. “Let’s go in this small room where he won’t feel so overwhelmed,” they tell me and I think, “so small he can’t get far enough away from YOU.” You see, he’s still going through that stranger anxiety phase.

In order to qualify for the GBCW program, a team of occupational and speech therapists came to the house last week (week before last? It’s all a blur) and evaluated him. He had to be moderately behind in two developmental categories or severely behind in one to qualify. As a mother, this was a gut-wrenching directive. I want him in the program, but I don’t want him developmentally behind on anything! In the end, he was perfectly normal with motor skills, speech, and all other categories except feeding, in which he did have a severe delay. He’s at 6 months on the chart (instead of 16 months). <sigh> So we qualify.

In the meantime, we took him to a pediatric G.I. to determine what’s going on with his reflux. It’s important to make sure there is no pain with eating, or no structural defects, so all we have left to work with is the behavioral issues. She ordered an upper G.I., which we had this morning. The radiologist said it looked normal. They were looking for narrowing in the esophagus or anything else that might be causing him to choke and gag when he tries table food.

So that’s where we are. He’s on the highest possible dose of Prevacid for his age/weight to control the reflux. His “insides” look fine. We have behavioral food exercises we work on in therapy and at home (called “snack therapy”). We are working on a progressive de-sensitization program. Right now, we put food on his tray and encourage him to play with it, touch it, but we never, ever, suggest he eat it. (Weeks ago, he was hysterical at the thought of even TOUCHING a pretzel. Now he will happily shove it in a cooked carrot and make a tower.) We are working up to getting him to kiss the food, then lick the food . . . beyond that, I cannot imagine.

When he’s 16 and eating me out of house and home, I will not complain. This I promise you!

For those of you new to this issue, here’s what went down at our first appointment with an occupational therapist. Our 2nd visit was much more productive. For starters, we saw a therapist who specializes in feeding issues with infants (vs our first visit with one who did not). She explained some of the reasons why this happens: one of the most common causes is infant reflux (GERD). Basically, as our son started trying finger foods, he choked and gagged. She said that chewing is a learned skill and he “learned” that it’s more trouble than it’s worth because it caused him discomfort.

She likened it to an adult getting sick from eating undercooked chicken or drinking too much. We’d avoid the offending food or beverage for a very long time!

The protocol to “fix” this is a 6-12 month program with weekly visits. <sigh> I don’t mind really schlepping him out there weekly. I just mind that he has the problem. Poor little guy. I worry that we’re setting him up for a lifelong uncomfortable relationship with food – something I thought was primarily the domain of women! (Only half kidding.) Is he going to hate food? Love it too much? Undereat when he’s older? Overeat? Use food as a weapon, a comfort, or something else? And how am I the one qualified to help him through this? I totally stress eat or stress starve.

This is not good.

We were told to do homework:

1. Put finger food on his tray at every meal. Do NOT try and offer it to him. If he throws if off the table, we are to pick it up and say “food stays on the table.”
2. Feed him only easily accepted foods. Don’t try anything too textural or that we know he won’t eat.
3. After the meal is over, have him help us “clean up” by picking up the finger food and throwing it into a little trash can (paper cup or bowl).
4. Then, we do an “exercise.” They gave us a thing that looks like a toothbrush, except it has bristles all around the tip. (Like a miniature blow dryer round brush – the size of a toothbrush.) We are to touch it to our lips three times, saying “Mommy’s turn . . . 1, 2, 3,” then touch it to his lips saying “Hunter’s turn . . . 1, 2, 3.” We have to do three sets of this.
5. When this is done, we are to recount what we did and praise him. “You ate your yogurt and helped Mommy clean up and did your exercises. Good job!”

So how’s it going? Well, much better after a VERY rocky start. The first few days, he screamed and cried every time we did the brush. It got to where he would scream and cry as his meal was ending because he knew what was coming. Now he lets us do it and even occasionally smiles during it.

He also showed an interest in playing with his baby food. OK, so he still won’t touch a Cheerio or a puff (except to throw them in the “trash”) but at least he’s touching food! Christopher (my hubby) thought he looked like Pooh with his hand shoved in the honey pot.

We have our next appointment tomorrow. I’ll let you know how it goes.

Look at that cute face. It’s a chubby little face. You’d never guess that this boy won’t eat anything that isn’t pureed. (Sorry; I can’t figure out how to put the accent on “puree.”) And I mean nothing. We’ve tried:

• Cheerios
• Puffs
• Every fiddlestick, cruncher, toddler finger food thing-a-ma-bob
• French toast
• Cake, muffins, pancakes
• Cheese
• Cottage cheese (this is even too lumpy for him)
• Soft cooked veggies
• Teeny, tiny bites of strawberries
• And dozens more

He refuses, cries, and if I get the food in there, he coughs, chokes and spits. He has acid reflux (or had it; I’m still giving him the medicine for now just in case) and it’s possible that foods with more texture irritate his throat.

We were referred to an occupational therapist who specializes in feeding issues. It took four weeks to get an appointment. Four long, agonizing weeks while his non-eating habits solidified. The day of his appointment, they called to say the therapist was sick and the earliest they could reschedule us was three weeks out. So we waited. That day came – last week – and my phone rang. This time, the therapist had a family emergency, and would I like to reschedule?

NO THANK YOU VERY MUCH I WANT TO BE SEEN TODAY!

Actually, the scheduler was very nice and jumped through hoops to find someone to see us that day. The problem was, the therapist we saw usually works with older children, not infants, so we left feeling about as confused as when we arrived. We’re scheduled to go back next week to meet with someone else. <sigh>

In the meantime, we have to do a food challenge once a day. We are to take a pureed food, like carrots or sweet potato, and put chunks of the same veggie in it. We tell our son to “take his bite” and wait for him to take it. We’re supposed to ignore the tears and if he puts his hands up (which he sure does as he tries to bat the spoon away), we are to lay our arm over his arms (push his arms down; don’t restrain his hands) and insist he take his bite. If he still refuses after 20 seconds, we are to smear the “bite” on his mouth (I guess the thinking is he’ll lick it off, which my son never does). If he takes his bite, we’re to praise him and offer a reward of food or a toy.

I should have asked the therapist to show me how to do all this, not just tell me cuz I’m not sure I’m doing it right. Plus, our little guy just swallows those soft chunks. It’s just like a Level 3 food. He doesn’t chew. (She did test to see if he could chew and he does know how, so that’s something.)

We reward him with yogurt because that is his favorite thing in the whole world. There isn’t much he won’t do to get his yogurt at dinner.

It went well the first two nights, but has been awful every night since then. I was so exhausted at the thought of it last night that I didn’t even try. My husband did it one night and he said he clenched his jaw so much that his neck was sore.

This is not fun.

I’m confused and unsure if we’re doing the right thing. I hope this next therapist is better. I’ve heard that there are groups that come into your home and work with your child. If this next appointment isn’t more useful, then I will look into that . . . and probably have to wait forever to get an appointment again.

Anybody out there who’s been through this successfully? Care to share your insights?

And what causes it? Could this all be stress-related because we moved when he was 10 months old? He got a new nanny at the same time so there were a lot of changes. And then he started cutting molars, caught a cold, then a stomach virus, then another cold, and an ear infection. All within about 2.5 months. Can that much stress cause a baby to delay his development in one area? He’s on track with everything else, I think. He used to eat puffs and gnaw on teething biscuits or cookies – not often, but he did do it occasionally. Just will not do it at all now.

Here’s the other frustrating thing about this food challenge program. He’s not really doing anything different by eating chunky sweet potatoes than if he were eating a Level 3 food (which he eats every day). All I’m doing is pissing him off by making him wait for his yogurt. If I gave him the yogurt first, he would then eat those sweet potatoes like no big deal.

The therapist didn’t teach us how to get him to take finger food, which is the real problem. I don’t want to force his mouth open to shove a puff in there. I guess we’ll learn that next time.

Reader Marie posted a comment last time I blabbed about this that she is going through the same thing with her son who is two months younger than mine. One of the great things about the Internet is the opportunity to connect with people like Marie to share our stories and swap tips. For those of you who are going through this, too, we’ll keep you posted on our progress!

Obviously, he doesn’t look like he’s starving because he eats baby food, but he will not put one bite of finger/table foods in his mouth. He’s about to turn 13 months old and the doc is referring us to an occupational therapist. Anybody had any experience with this?

We’ve tried everything: those melting puffs, Cheerios, CAKE, small bits of cheese, cookies, and more. When he was younger (7 months till about 10 or 11 months), he would gnaw on a teething cookie or those little Arrowhead cookies but he won’t even take that now. He used to eat the puffs, occasionally. He refuses it all and freaks out if I try and force it, which I suppose I shouldn’t do. About a month ago, I could force the first bite and then he usually would eat more bites, but I can’t even get him to do that now.

He eats Level 3 foods but prefers Level 2. Since he has eaten some table food before, I’m guessing it’s not structural (as in, an underdeveloped gag reflux or something) but he gags and chokes and coughs like it’s KILLING him when we try to get him to eat anything not pureed.

We have an appointment with a specialist next week (speech pathologist) who works on feeding issues.

I’ve read that babies need to get off the baby food because the table foods help them develop chewing muscles which helps them with speech, plus it’s easier to get his nutritional needs met. I’ve also read that this is slightly more common in babies who’ve had reflux, which my son had (maybe still has; I’m not sure).

Or could it just be that he’s a little behind? He didn’t crawl until 11 months. We did just move and got a new nanny. Maybe he just wants “comfort food” and for him, that’s smooth, pureed foods?

I literally couldn’t sleep the other night because this was worrying me so much. I’ll postpone the worry until we see the therapist next week. The pediatrician did say they see this texture aversion often and it’s correctable. I just don’t know anybody who’s dealt with it before. Do you? Let me know if you know anything!