Sunday, June 3, 2018

Food Therapy

It has been a year and a half since I have posted, and yet again, I want to blog about food. This one is because I think it can actually help other people with the same challenges we have struggled with. My post about my uterus adventures was in a similar light, and I have had many people contact me about Asherman's in Singapore, so I believe it was effective! (Plus a bit cathartic to get it out of my head and out there)

Other than food therapy (see below...) in the last 1.5 years we have survived, but it hasn't been easy! Samara is now 7 and in first grade, Elie is 4 and Koby just turned 3. Matt has been enjoying his work a lot. I started working a lot more - which has been awesome for me. Our parents are generally doing well, we are enjoying our house. I would say life is good. We are finally getting into a groove where we are having fun and it's not all physical labor with these kids!

But the reason for the post...Our family's life has been transformed by food therapy. Not only is Samara eating more variety (more details to come), but the boys are too. Our family meals are generally enjoyable. Eating at friends' houses or at restaurants is not NEARLY as stressful as it used to be. AND, some of Samara's sensory stuff - inflexibility around what clothes feels good on her body, doing things her way, etc - have very much improved. Here's the story...

As I have blogged about before (here and here - and possibly other times), Samara had an extremely limited diet. Since she started eating (doctor suggested at five months), she didn't accept food. She gagged. She puked. It was miserable for her. It was miserable for us. The research I did in Singapore told me to just encourage any positive behavior, but don't focus too much on the bad.  You can't MAKE her eat, right?

Then I found Ellen Satyr's book, Child of Mine (from another mom at our pre school here, probably about 2.5-3 years ago). I really liked the approach called DOR - you tell them what and when, and they decide if and how much. You always serve at least two things that the kid eats - one could be a drink. All is family style. Everyone takes for himself. Nothing gets put on your plate that you don't want. You have control - or you feel like you have control. Meals did get WAY less stressful with this approach. But then we had more kids, and my other kids were normal eaters who weren't eating normally, because they were following Samara's lead. And her diet became even more limited, as I didn't pressure her to eat anything. So she was eating nearly no meal foods. She was refusing foods I put in her lunch. She was basically down to snacks with a complete fit if anything else was suggested. Koby was 2. We were sleeping a bit more. I actually had time and space in my brain and life to figure this out. I started searching the SUPER useful Newton Parents facebook group, and I saw people recommended Children's Speech and Feeding in Needham for food therapy.

I had VERY low expectations, but I figured we had to do SOMETHING. Our meals were non-functional. We couldn't eat out (she was down to nearly no grilled cheeses and only if they had french friends, pizza from only one place - no meat, no pasta, no veggies, no fruit, NOTHING). Eating at friends' houses was so stressful - I didn't enjoy it. Shabbat dinner at shul was a nightmare (she wouldn't even eat a challah she wasn't used to). I definitely needed help. I had tried everything I thought I should do as a loving mom, and it had made things worse.

We went for an evaluation last June. They had a few month waitlist, and our insurance didn't cover it, but it seemed like we should just try it and wait. After making an appointment for August or September, they called with an immediate opening with Arden Hill, the founder of the practice for the next week. We were to bring a food Samara ate happily (cereal), a food she used to eat that we wished she ate (plain yogurt, I think?), and a food we wished she ate that we thought was realistic for her to eat (carrots). At the end of the assessment she was eating TINY bites of carrot - probably 1/32 of a baby carrot stick, or perhaps smaller (I believe I cried when I saw that - I didn't believe it. This kid had eaten one vegetable in her life, and it had been years). Arden diagnosed her with a swallowing disorder - a food sensitivity - (she gags and pukes with things she doesn't expect). She said that some was behavioral (the foods she once ate that she didn't anymore) and that the rest of was sensory (she hadn't even tried nearly everything). And she suggested food therapy for a year. She said they might have space in the fall.

We went in a few times over the summer for individual appointments where she talked to a speech therapist and worked on eating carrots and a few other things. They then got her into a group "Food University" class, once a week for 1.5 hours (5-6:30pm), starting in September.

At Food University, the six(ish) kids (who are all 6-8ish) discuss the week, how they did, then they make a recipe together to "eat" for dinner. While the food is cooking, the kids work on foods their parents send in from home - a protein and a produce item. For new foods, they have a process of:

  • Have the food near you/on your plate
  • Touch it/interact with the food
  • Smell the food
  • Touch it to your lips
  • Kiss it
  • Take a tiny bit and spit it out (into an "all-done bowl")
  • Take a tiny tiny bite, chew it in the front of your mouth, push it to the back of your mouth and swallow it (this one was often accompanied by a gag or puke - but this improved with experience)
  • Tasting bites (starting with a few, then perhaps a few more)
  • Bigger bites
  • "Just-right bites"
They had homework every week, including the two foods we brought in and including the food they made together (which we had to make again at home). Foods they made included: chili, quesadilla, calzones, lasagna, roasted potato with egg, soup...Foods we worked on included: freeze dried apple, carrots, apple, cucumbers, peppers, pasta, boxed mac n cheese, fish sticks (home made and from a box), chicken nuggets (home made and from a box), cheese sandwich, pancakes, french toast, cream cheese many more. I focused on foods that would make her more flexible (eat out, eat at a friend's house) and variety - not specifically the most healthy ones. Homework would be something like: 1/4 of a chicken nugget two days, 1/10th of a pepper strip cut into tiny pieces twice a week, a half a black bean twice a week, a small strip of lasagna twice a week - it started SUPER small and moved to a little more but still very small portions - and this is what made it do-able for Samara. If I had given her an apple and told her to take a bite and eat it, she literally couldn't. But start with a tiny piece of apple with no peel, do the process above, make the piece bigger, add peel...and give it months, and ultimately I do believe she could do it. But it's a slow slow process.

She started with bite sizes like a salt particle. It was so depressing to think how far we would have to come to be normal. SO MUCH PATIENCE. SO MUCH WORK on her part and on my part. EVERY night (but one per week) she had homework, and EVERY night it was a fight. She had to put things on her plate. She had to do her homework that she had agreed to with the therapists. If she didn't do the homework in a certain amount of time, she lost privileges (TV, story, opportunity to be downstairs and play), and she had to have it for breakfast. This breakfast thing only happened once, and it was AWFUL. I felt like the worst mom, but once I did it once, she knew I was serious (fish sticks for breakfast sucks). Fighting with your daughter about this thing that has been SO STRESSFUL for both of you for the last six YEARS is not easy. It was REALLY REALLY HARD. I felt super alone in the struggle, but ultimately she was making progress.

I kept asking the therapists how this would translate into real/normal eating, as she was eating 1/4 of a carrot stick or a noodle or something like that, but it wasn't enough to sustain her. To be honest, I didn't get a great answer to this, but it felt like this was about as much progress as I could ever expect (it was actually beyond what I thought was possible), so we pushed on and kept going. I believe we missed one session in the 8-9 months that she was in the class - we were so committed. I had a hard time with the homework when we were on vacation, but otherwise I really stuck to it, and she did too. She felt so proud of herself when she did eat new things. There were a few things that she actually liked - a very few - but those were amazing. She got more flexible - she tried pizza from other places (they taught "pizza is pizza is pizza"). Challah from other places. Grilled cheese from other places. She tasted things I had a feeling she would like but she wouldn't try before - chicken nuggets, roasted potatoes, plain pasta, a restaurant bread roll...things that made it so we could EAT OUT OF THE HOUSE.

Now she had to have things on her plate. She had to try new foods - because as it turns out, if I left it up to her, she wouldn't try it. It turns out that I know better than a seven year old, and she cannot be left to make that judgement. Because she had to try things, so did the boys. So everyone tried dinner. We had LOTS of positive reinforcement ("great bite, Samara!" "I love how you tried that new vegetable, Elie!""Look how nicely Koby just picked up that piece of salmon and put it in his mouth - excellent work!"). And lo and behold - THEY ALL EAT!!!

Last night I made a chicken in a crock pot, roasted potatoes, roasted sweet potatoes, roasted beets, fresh cut veggies and couscous. Samara ate a reasonable amount of chicken (probably a tablespoon), a bunch of roasted potatoes and a few pepper strips. Elie and Koby ate all of it. None of them would have eaten ANY of that before food therapy. NONE of my kids at vegetables. None. Samara also asked for raisins for a snack yesterday (she hadn't had raisins since she was 2). She recently asked to try dried mango (she liked it), string cheese (she has had it a few times and likes it), fruit leather and a few other things. ON HER OWN. I DIDN'T EVEN MAKE HER TRY. She has confidence, and she wants to! It's amazing.

I make new things - big fish filets or chicken breasts breaded or roasted, pasta with something in it (they can try it or eat around it), veggies of all sorts made in all sorts of ways - and they try it and generally find things they like, or like enough to eat enough of. I literally can't believe it. Their bodies must be so so thankful. I am so so proud. It has taken so much work and so much money, but it has been so so worth it. 

We went to Brooklyn last weekend for a wedding, and Samara could eat rolls, veggies, pasta, french fries, chicken strips, pancakes, bagels, waffles, toast - even if it has seeds in it...all sorts of things, and it was NOT STRESSFUL (90% of the time)!!!

It's not like they eat anything - they're still kids. But they're NORMAL kids!!! It's amazing. THANK YOU, Children's Speech and Feeding in Needham Mass.

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