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Operation Dining Time – Part Two

August 7, 2012 by Tim

[ I know it’s been eons since we last posted. I’ve been devoting almost all my free time to a new project I’m really excited about. Details are coming soon, but the first phase of this project involves the release of my new book! In the meantime, here’s the continuation of our Operation Dining Time posts and our rip-roaring success of helping our J-Man become a less picky eater! ]

For an introduction and the initial steps we took to start this process, go back and read Mary’s first post about Operation Dining Time (ODT). You can also read a general overview that I wrote over on Special-ism.

We set as our shoot-for-the-moon goal 26 new foods by June 30, the end of the school year. The new foods marathon (where 26 came from) was suggested by the teachers as a marketing ploy since I’ve run a couple of marathons now. 🙂 This gave us a period of about five weeks to do what seemed unthinkable. When we set the goal, he’d only tried a small number of new foods.

Remember, we started with just six foods, the same six he’d eaten for years. Since we started ODT, he’d only added a few more to that point. Shooting for 26 more on top of that really did feel like we were aiming for the moon.

But one thing we’ve learned over the years is that when you aim ‘impossibly’ high, our kids can often go even higher.

The amazing news is that we finished the marathon new foods goal with plenty of time to spare. We had 16 days left when we hit 26 foods! So, we just kept going. By the June 30 date, he’d tried by our count 44 new foods! It may even have been more than that, but we sorta lost track!

Let’s all let that sink in a minute. This child ate six foods total up until we started making these changes. He’d been stuck in this diet pattern for years.

We are as mind-blown as anyone. It really does feel like a miracle.

This doesn’t mean he loved all these foods, but he did try them. We didn’t expect him to enjoy everything he tried – who does? – but his willingness to experiment and courage to try were the most important things. We believe that with this so much more becomes possible.

The main part of the diet change for us was getting over the inertia at the beginning. Autism defenses don’t give up easily. Even if your child shows interest in new foods and a genuine desire to eat them, these habitual patterns are hard for them to get past. These patterns were established and took root over a period of months and years. Think of it like trying to uproot a tree that’s been in one place that long. Not easy.

The key is to find the most motivating and positive ways to chip away at the mountain you want to get beyond. We offered J a bite of new food followed by a bite of one of his old, preferred foods. Think of these motivations like clearing paths in overgrowth for them to walk on more easily when trying to find a way around these defenses. You have to be consistent, though. Offer the new food but don’t give the preferred reward food until your child eats the new food.

We still have to use this approach. For instance, we recently asked him to eat a few bites of corn and peas (not mixed, of course!), which at first he was not interested in. We said if he just tried a bite of either one, he could have a bite of something he liked. For an entire meal, he rejected this. So, we ended up skipping that meal entirely. This was at lunch, and he’d had a good breakfast so no harm would come from skipping lunch. At his afternoon snack, he still resisted for a short while, but eventually his interest in eating something overrode his defenses. He not only tried them but ate the entire portion of both the corn and peas. He got his preferred foods, and then all was well.

Your child may legitimately not like the new food, of course. We set the rule that he at least has to try it a few times before rejecting it as a food he doesn’t like. We note his reaction. We’re pretty good about reading his expressions, especially because he’s minimally verbal.

Interestingly, the end result so far is that he’s more or less made himself mostly vegetarian. Actually except for some cheese, he’s pretty close to vegan. He hasn’t much cared for any of the meats. We aren’t pushing any specific diet on him since our goal has been to expose him to as much variety as possible, but if this is ultimately his choice, we’ll be happy to honor it.

We tend to introduce foods we think he’ll like based on what he’s eaten before and what foods he prefers. Examples: Apples because he likes applesauce, and they’re crunchy like the crunchy foods he likes. He will go through a bag of apples every few days now! Cheese toast because he likes buttered toast. Cheese with a saltier flavor (mozzarella string cheese) because he likes salty snacks, though he hasn’t much cared for cheese on its own. And so on. We’ll occasionally introduce an ‘out there’ food that’s pretty far off the path when compared to other foods he’s tried simply to see what will happen.

Inertia and friction have a couple of lessons here. With inertia, it’s hard to get something moving, but once you do it builds momentum and gets harder and harder to stop. With friction, it takes more pushing to get a stationary object going, but friction actually decreases as an object starts moving. (See, my college degree finally is getting some use!)

He did initially lose quite a bit of weight. At first this was because of his resistance to eating what we offered. Even when he started eating much more, he kept losing for a while. Depending on your child’s current diet, this strikes me as a likely thing to happen.

J was eating tons of snack carbohydrates before, and any of you who have tried to diet likely know that carbs also make you retain water, up to three times as much water as the carbs you take in. He lost over the first three weeks or so about 5 pounds, or a little under 10% of his body weight. But now he eats a lot and has gained all that weight back plus a smidge, except now it’s with a diet better than most people we know!

The magic moment happened at his class’s end of school year party. There he was sitting at the table with his classmates, eating a cupcake just like they all were. It’s hard to express just how miraculous this feels. It was all so perfect.

Every time we’ve gone somewhere, we’ve either had to bring his snacks to eat or just accept he won’t sit at the table and eat what the other kids are. To many this would seem like a little thing. Most parents probably never notice, but this is one of the hard fought victories autism parents and their children win that they never forget.

For the first time ever, we added a fair amount of money to his school lunch account. When whatever is being served that day contains foods he likes (or sorta likes), he can get lunch with the other students. This is such an enormous victory that I can’t even begin to tell you, though many of you already understand. I honestly wasn’t sure this day would ever come, but it has.

People have asked us whether he has experienced any physiological, emotional, behavioral, communication, or learning changes under the new diet.

The short answer is, not really. I admit that this is a bit of a disappointment. It wasn’t the main reason we did all this, but we were hoping for some additional benefits along these lines.

Physiologically, his digestion has overall seemed somewhat better, though recently it seems to be getting dodgy again. For a while he seemed calmer, but that was only temporary. He seems about as fidgety and sensory seeking as ever.

He was already having a good school year so it would be hard to discern whether any improvements were diet-related or not. I imagine it had to help some. Nothing I’d call a quantum leap at school or anything, though. Same with communication – he’s still improving gradually but surely.

Like I said, while we hoped for additional benefits, that really wasn’t why we did it. We were concerned about his long-term eating and health habits. We knew that habits get harder and harder to change as kids get older and that teachers in higher grades are going to be much less likely to participate in this kind of program than are elementary school teachers. Mostly, it was simply time.

You always hope some other obstacles will break loose for him and bring about more exciting changes. Such wishing is perfectly normal. But our successes here will translate into others as yet unknown, and we have much now to build from.

It is wonderful to sit at the kitchen table with him in the morning, me with my cereal and J with his apple slices, grapes, pears, carrots, or whatever we give him that morning, and enjoy breakfast with him. These are the victories you remember, the moments you cherish, and the milestones that make all the difference as you continue along this journey.

Filed Under: Blog Tagged With: Achievements, Advice, Behavior, Celebrate, Diet, Eating, Feeding Issues, Food, School, Sensory Issues, Sensory Processing Disorder, SPD

Operation Dining Time – Week One

June 19, 2012 by Tim

[If you’ve been following us on Facebook, you know that we’ve been in the midst of completely overhauling J’s diet. To date, he has tried 27 new foods in three weeks! At the request of numerous people, we’re going to write up what we’ve done to get him to try new foods. The plan at this point is to post this in sections and then compile the whole thing in one place. You can also read a general overview that Tim wrote over on Special-ism. Stay tuned.]

This is the story of a family desperate to get their son to eat more than seven foods. Yes. Seven foods. It used to be six foods, but we added pretzels in the last year. Note that these seven foods were highly specialized – it couldn’t be just chicken nuggets; it had to be Tyson Breast Nuggets (only sold in boxes) straight from the freezer to the microwave on one special kind of plate. It had to be Tostitos Bite Sized Rounds tortilla chips. It had to be Premium brand saltine crackers. Heck, we celebrated when we got the J-man to eat the snack food from a SQUARE container instead of a RECTANGULAR container.

ODT 1

Our original, well-used, well-loved food card.

Together with the J-man’s teachers and therapists (aka World’s Greatest Teachers), we devised a plan to begin adding new foods to his diet. The J-man had shown interest in other foods (ABSOLUTELY the first step, or we never would have tried it. He had to be ready to do this too!). We expected it to be a very long process to even add ONE new food, since every time we tried before, the J-man simply wouldn’t try the food, or would “kiss it” or “touch it to his face” or do all those other things the experts tell you to do. We decided all the adults had to be completely invested in the process, and that we would cheer each other on to stay strong.

The J-man’s teachers came up with an amazingly structured program for him. They came up with new terms for eating that we had never used before, because we thought part of the problem was his expectation regarding word meanings – before, “taste” had simply meant “touch it to your lips” and “eat” had meant “here, have one of your preferred seven foods.” They changed it up.

Before, the J-man was a “grazer” – we didn’t have set meal times, and when he was hungry, he simply asked for one of his preferred foods, and we hopped up and got that for him. (I spent a lot of time hopping up to get someone food instead of eating my own meals.) We decided on set meal times, and had to stick to them. Most important for the J-man, we allowed him to be hungry. Really hungry. We found out that hunger was a pretty darn good motivator for him.

So, Operation Dining Time began. We started with this – and I’m copying from the actual written plan here:

  • One new food will be introduced at a time. Cheese will be the first food. We will use string cheese cut into small pieces. Teachers and parents will discuss when it is time to introduce a new food.
  • One tiny bite of the new food will be given at each dining time. The J-man must first eat the bite of new food – and then will get his designated food for that meal. If he does not eat the tiny bite of new food, then he does not get his designated food. The new food will then be presented at the next meal time.
  • Applesauce will no longer be given during meal times. (Ed. Note: we use applesauce as the medium to get ground-up vitamins and allergy medications – as well as melatonin at night – into the J-man. We decided from the beginning not to give that up, but we lowered the volume of applesauce given dramatically, and it’s ONLY given to get him to take meds morning and night.)
  • A new meal schedule will be implemented:

    8:00 Breakfast: 1 piece of toast, 3-4 nuggets
    12:00 Lunch: 5 nuggets and 1 piece of toast
    3:00 Snack: J-man’s choice of 3-5 pieces of each preferred snack food
    6:00 Dinner: 5 nuggets and 1 piece of toast

  • New language will be used for each step. Meal time will now be called “time to dine” or “dining time.”
  • The following terminology will be used for first bites of a new food:
    1. Put on tongue
    2. Hands down
    3. Munch, munch, munch (aka, chew)
    4. Gulp (aka, swallow)
    5. Clean mouth (food all gone)
  • Teachers will make visuals for each step. Visuals will be used at school and home during each meal time.

ODT 2

The table setup. Visual instructions for eating (face blurred because picture is of another child – but pretend the child is demonstrating the action); “dining time” strip from the picture schedule; First/Then (in this case it says “First cucumber, Then snack” – since we have a lot of new firsts and he can read, we just wrote out ‘cucumber’)

ODT 3

Larger version of visual instructions for eating. We had to invent a whole new vocabulary since certain words like eating, tasting, chewing, etc. have specific meanings to him, meanings that aren’t quite correct, and changing a meaning of something once it’s entrenched in his vocabulary is very hard.

The teachers also created a video of the child in the pictures actually EATING the food, while they voiced the steps one takes to try a new food. The J-man liked the video, and wanted to watch it over and over, which was fine with us! We also turned it on while he was at the table for Dining Time, along with having the picture cards above and beside his plate.

Days 1 and 2: The first 40 hours, the J-man ate only the 3 tiny bowls of applesauce. We didn’t totally restrict fluids (of course) but we did not allow him to simply drink the calories he needed either. He followed us around, asking for foods by name, because we had put away the food card. We only offered food at meal times, and always only offered the new food first. If he refused to try the new food for 10 minutes, we put all food away until the next meal time. (This is the part where you feel like the world’s shittiest parent, by the way.)

The J-man actually got kind of pale and shaky looking by the second Lunch Time, and that’s where the World’s Greatest Teachers stepped it up again. They wrote a Social Story explaining that the reason his tummy hurt was that he was HUNGRY, and the way to NOT be hungry was to “Put food on tongue.” They wrangled a piece of string cheese into his mouth and literally manually moved his jaws to get him to chew it while they held his hands… and he swallowed it. They immediately gave him a tortilla chip (reward food).

That was going to be it – he was going to get to eat ANY preferred food he wanted for the rest of that Dining Time period. The original goal was 1 bite of new food, then say, a plate of nuggets, or a container of snack, or a full piece of toast. Instead, because he’s just awesome, the J-man assumed he had to eat another piece of cheese to get the reward food, and so he DID! He ended up eating almost two whole pieces of string cheese that day, with reward foods following each bite. Tim and I were called to the school to watch the magic happen during Snack Time, and to make sure that the J-man would eat for us as well. And so he did, although he did test us first to make sure we would also make him eat the new food.

We went the next couple of days, adding in grilled chicken and apple slices. The J-man tried a new tactic – holding the chewed food in his mouth until someone wasn’t looking, then spitting it out. We and the teachers waited him out. Waiting him out seemed to be a common theme. We found that grilled chicken wasn’t his favorite protein, but that he would eat it if hungry enough.

By Friday though, we sent in 2 more new foods – baby carrots and strawberries – both foods he had shown an interest in before. And, he tried them. He liked them both. But he would still only eat a new food with a snack food as reward. Nuggets were not a big enough motivator for him. So, World’s Greatest Teachers changed it up again.

And that is a different post.

Filed Under: Blog Tagged With: Achievements, Advice, Behavior, Celebrate, Diet, Eating, Feeding Issues, Food, School, Sensory Issues, Sensory Processing Disorder, SPD

Strategies to Help a Child Drink From a Cup – Crowdsourcing Time!

June 26, 2011 by Tim

[I’m promoting this question from ‘onlyash’ from her comment in another post. Hope she doesn’t mind.]

Here’s a great question from ‘onlyash’ that I wanted to try to crowdsource.

“I am a mom to a former micro preemie and I have contacted you before and your suggestions have always helped me, she is 4 now and still drinks water from a bottle. Do you have any suggestions or tricks you have used with the J-Man that you can share here.”

I’m not sure I have much in the way of great insights to share, but I’ll take a stab at a few from our experience. Those of you with particular experience with this, please share your wisdom in the comments.

We had a roller-coaster of results with bottles back in the day. Our J-Man was an ‘extended nurser’ in that he still breastfed a little until he was around preschool age. When Mary worked outside our home, I fed – or tried to feed – him pumped milk from a bottle for a long time. Sometimes this would work great; many times he’d go on bottle strike. This became an urgent problem because he really wouldn’t eat much of anything else. His diet was limited to a small number of pureed things, and even then what he’d eat or whether he’d eat them at all varied depending on mood. We were regularly frightened that he wasn’t getting enough vitamins, calories, or much nutrition in general.

We started feeding therapy with him when he was nine months old. His oral sensitivities and aversions are the stuff of legend. Getting him to let us put anything at all in his mouth took months of therapy. Even now, what he will eat is very limited.

Most of that journey is another story entirely, but with respect to drinking liquids back in those days that weren’t pumped breastmilk from anything other than a bottle, we tried all sorts of things. One thing worth noting here is that he never did sippy cups. This wasn’t because of anything we did. He just hated them and wouldn’t have anything to do with them. We’re all pretty sure it was from the ‘I don’t want anything weird in my mouth like a spout unless it’s attached to Mama’ kind of thing.

Now he drinks from these plastic, kid-sized, open travel cups. (We don’t use the spouted lids at all.) They’ve gotten him to take some drinks from different cups at school, but he’s pretty attached to our cups. Also worth noting that he almost solely drinks lightly-sweetened, decaffeinated, iced tea. Very recently he’s agreed to take a few sips of milk.

Here are some things we’ve tried.

* We eventually got him to experiment with a cup by getting acrylic shot glasses from a party store. I think they were like a dollar apiece. They’re indestructible and only hold about an ounce of liquid. If he spilled whatever was in it, no big deal. Plus it was smaller and fit better in his hands and mouth. He was probably about 18 months give or take at that point, but this is something worth trying for just about any age.

* We played with cups (started with those shot glasses and worked our way up) in the bathtub, tried to pour some water around and on his face some, and occasionally got some on his lips. We let him experiment with the cups, too, filling them with water and pouring them out, etc. Obviously we did this before soap or shampoo got in the water. We tried to make a game of it or at least make it as fun as possible. It took a lot of time, but eventually this started helping his comfort level and willingness to experiment with cups.

* He was very reluctant to let us put the cup near his mouth (as he is with about anything), so this took a lot of patience. Like many things, he wants to be in control of what is near him.

* We eventually tried heavier glasses like small jars that could withstand being dropped. With the J-Man’s sensory issues, he responds better to heavier objects. The weight often calms him. For the longest time, this was all he’d drink out of, but hey, he was drinking out of an open cup! Eventually he worked up to the travel cups.

FYI – The above are mostly from before he turned 3.

* When we want to attempt something new, we try to structure it with some sort of visuals and/or social story. With new foods or drinks, we’ll either use a written schedule-type story to indicate what he’s expected to do or use a visual that shows the same. For instance, for the written story:

1. J-Man is going to drink some milk from a new cup.
2. Take a sip.
3. Take a sip.
4. Take a sip.
5. Take a sip.
6. Take a sip.
7. J-Man is finished!

Seems redundant perhaps, but the point is that every time he takes a sip, we cross off that step. You can obviously do this with pictures, too. For instance, every sip they take from the cup you want them to drink from, you could remove one of the pictures. When all the ‘take a sip’ pictures are gone, they’re done.

I think both the structure and knowing when they’re going to be done with this task they clearly would prefer not to do helps get them started and actually doing it. Even that may take time, but persistence and much patience can pay off. The hope is that they will realize it’s not so bad and perhaps even like it.

So how did you get your child to transition to cups, try new drinks, or taste new foods? Please leave a comment and share your wisdom!

Filed Under: Blog Tagged With: Behavior, Eating, Feeding Issues, Food, Sensory Issues, Sensory Processing Disorder, SPD

The Second Time Around – Having a Child Not in Therapy

March 18, 2010 by Tim

I realized the other night that the second anniversary of what we’ve called Diagnosis Day is upon us. On that gray, March day two years ago, the doctor said the words “diagnosis of autism”, and we jumped down the rabbit hole into this grand adventure. It’s hard to comprehend how far we’ve come in those two years.

But really it started long before that. The J-Man began feeding therapy at 9 months old. We had an evaluation just before that through our county’s child developmental services agency because he was showing significant sensory aversions not only to food but to all sorts of other things. He seemed ill at ease with many things around him. Something just didn’t feel right to us.

The evaluators referred us to a feeding therapist, and off we went on a road of diverse therapies that’s run the gamut of acronyms and has continued ever since. A little over a year-and-a-half after we started that first feeding therapy, we took the on-ramp onto the autism highway, and here we are.

Dale Jr. is now about 10 1/2 months old. It has been like learning how to parent all over again. He eats everything in the house; there’s almost nothing we give him that he won’t eat. We still catch ourselves being completely amazed by how well he eats. He even self-feeds finger foods. He mimics us, uses a few words and signs a little bit, intentionally asks for some things, and shares his interests with us. He’s proving to be quite a daredevil, he explores everything, and he wants to be the life of the party wherever he goes.

We’ve noted many times how very different they are. It’s a wonderful thing to have two such complex, wonderful, and unique little people in our house!

And he’s about the age we started the J-Man in therapy. This fact isn’t lost on us. We are so programmed at this point to look at every part of our day in terms of the therapeutic that we sort of don’t know what to do when things are just moving along fine with one or both of the boys.

I realized that we’ve been at this a while when I praised the baby for his skillful bilateral coordination and object transference and developing his pincer grasp so rapidly (which is wonderfully useful as he eats Cherrios on his own while we do kitchen chores). I have no idea most times whether he developed any of these or other skills ‘on time’ or not, though from a few years of therapies I know the technical names of many of them.

The term ‘developmentally appropriate’ is usually lost on us. I’m not sure we’d know it if it bit us. Perhaps we’re becoming more at home with the mystery of it all. Our two boys have changed us in very different ways, and we know we have more mysteries still ahead of us than we do behind us.

As they say, “‘Normal’ is just a dryer setting.” We get the privilege of experiencing a completely new parenting adventure, and we have two wise little teachers who will help us learn and value all the diverse and beautiful gifts that make us human. The J-Man does things that boggle our mind. He’s only beginning to manifest many of his incredible gifts, but he has already changed the lives of so many for the good, especially ours. And Dale Jr. is quickly following him down that path.

We have two boys who share perhaps the most important gifts of all. They are loving and kind, they brighten every room they enter, and everyone who meets them loves them immediately. Regardless of where the adventure takes us next, we start from this foundation, from which anything is possible.

Filed Under: Blog Tagged With: ASD, Autism, Baby, Developmental Delays, Doctors, Eating, Family, Feeding Issues, Medical, parenting, Perspective, Reflections, Sensory Issues, Sensory Processing Disorder, SPD, Therapy

What's Your Autistic Toddler Like Now? (Part 2)

February 22, 2009 by Tim

This is Part 2 of our series “What’s Your Autistic Toddler Like Now?”, a journey through what’s happening these days in the life of our autistic 3 1/2-year-old son and sequel to our very popular original article, “What’s Your Autistic Toddler Like?”.

Note: Wherever you see “DSM-IV” below, this means that attribute is part of the diagnostic criteria for autism spectrum disorders in the Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition or DSM-IV. In medical terms, a specific combination of those DSM-IV criteria is what brings about a diagnosis of autism.

Same obvious disclaimer as before: We are not advising you on how to evaluate your child. Go get them evaluated by professionals with extensive experience with autism. Don’t just rely on some random people on the Internet – namely, people like us.

If you haven’t already, go back and read Part 1. If you have, let’s continue on!

Characteristics That Are Significantly Present (continued)

Difficulty with social awareness (a bit better but a lot to work on) – I don’t know whether this has an official meaning, but I think of social awareness in a very broad sense as being aware that there are people around you and that they can be engaged with at some interpersonal level. For some time, we referred to other kids in the room as ‘part of the furniture’ as our son didn’t interact with them much differently than any other object in the room.

School has helped him in this regard in that he has regular time every school day with the same children and is involved in activities with them on an ongoing basis. You still get the sense that he’d usually be content without them, but often the emotions of an autistic toddler are inscrutable.

He does enjoy watching other kids do funny things, but watching rather than playing with children is one of those possible signs of autism, and this is a fairly accurate description of where he is right now.

That said, it is nice to see that he’s aware that other people have names, and he can use a name to refer to a person, though usually now that’s only with some prompting.

Continue on with Part 3! [Read more…]

Filed Under: Blog Tagged With: Achievements, Apraxia, ASD, Autism, Behavior, Clothes, Communication, Developmental Delays, Developmental Therapy, Eating, Evaluations, Favorites, Feeding Issues, Food, IEP, Internet Resources, Introductions, Learning, Medical, parenting, PECS, Perspective, Picture Board, Preschool, Reflections, School, Sensory Issues, Sensory Processing Disorder, Sign Language, SPD, Special Education, Special Needs, Speech, Speech Delay, Speech Therapy, Structured Learning, Talking, Therapy, Words

What's Your Autistic Toddler Like Now? (Part 1)

February 20, 2009 by Tim

Many times over, our “What’s Your Autistic Toddler Like?” post is the most read article on this site. It’s also the post people most often cite as the reason why they write us and become regular readers of our blog. We are gratified by your response to our story about our son and hope all this has been helpful to you and your family.

In celebration of the 1st Anniversary of our blog, I decided to write a multi-part series, revisit that popular post, and update it for what the J-Man is doing now almost 9 months later. The original “What’s Your Autistic Toddler Like?” gave you a snapshot of what an autistic toddler might be like – or at least what ours was like – about three months before his 3rd birthday.

[Read more…]

Filed Under: Blog Tagged With: Achievements, Apraxia, ASD, Autism, Behavior, Clothes, Communication, Developmental Delays, Developmental Therapy, Eating, Evaluations, Favorites, Feeding Issues, Food, IEP, Internet Resources, Introductions, Learning, Medical, parenting, PECS, Perspective, Picture Board, Preschool, Reflections, School, Sensory Issues, Sensory Processing Disorder, Sign Language, SPD, Special Education, Special Needs, Speech, Speech Delay, Speech Therapy, Structured Learning, Talking, Therapy, Words

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