Eating

Day 20:  Eating

Since I touched on it last night, and since I singularly ate enough for food for 5 large men this weekend, now might be a good time to approach the topic of eating. 

When Coleman was a baby, he was a normal, healthy eater.  He had some issues transitioning to formula, and ended up on soy.  Other than that, things progressed pretty normally for him.  What stands out is the memory of his first chocolate chip cookie.  He had it when he was about 16 months old – it was still warm from the oven and the chocolate oozed on his lips, and dripped down his chin.  He barely looked up as he held the crumbling softness in his pudgy hands, so fascinated by the sweet taste.  It was the first and last cookie Coleman ever ate.    

The Leukemia diagnosis came a short time later, when he was 18 months old, and the rigorous chemo treatment quickly diminished Coleman’s ability to hold down food.  Initially, he was trying to eat, only to throw it all back up immediately afterwards.  And then, after a month or so, he would barely eat at all.  He would look at the food, and you could tell he wanted to eat, but was afraid to do it.  He would take a tiny bite, and wait.  And within seconds it came back up.  We tried everything, all the tricks the nutritionist told us about, but to no avail.  3 months into treatment, he had lost approximately half his body weight, and at a Friday clinic appointment, they informed us the tipping point had been reached and Coleman would have to be re-admitted for placement of a g-tube.  I was never so happy to declare defeat.  Trying to get him to eat, trying to keep the food down, was an all day, all night stress and we were watching his tiny body disappear before our eyes.  The g-tube placement enabled his body to be nourished though this tiny tube in his belly – and the pump ran during the day when went out for walks in his carriage, and ran overnight while he slept.  Within a short time, his body was re-nourished and, with help from the steroids, he actually looked chubby.  The tube remained in place for the next two years through the rest of the chemo treatments.  During this time, Coleman did not eat anything orally.  

When treatment ended, we began to work on feeding.  Coleman had developed a significant gag reflex and even the smell of food was unbearable.  He could not be in the kitchen while food was cooking, and could not be in the car if we brought in take-out food – both would make him vomit on the spot.  We began seeing a feeding therapist to help Coleman learn to eat again.  I remember the first time we saw her.  She told us it could take several years for Coleman to learn to eat again.  It did take several years, but finally, on October 15, 2012, exactly 6 years, 5 months and 7 days after he was diagnosed, Coleman’s feeding tube was removed.   

It’s been a year and a half since the tube was removed, and while Coleman eats enough food to maintain his weight, he continues to struggle with eating.   Although his eating issues clearly began with complications associated with chemotherapy, many kids on the Spectrum suffer from poor nutrition/food aversions related to textures and smells.  Coleman is very similar.  He does not like any kind of cookie or cracker, and has never had a piece of any kind of candy in his life.  He is not fond of ‘wet’ textures (sauces) and does not like very cold things either (ice cream or popsicles he will not eat).   He has a terribly limited diet – comprised in large part of waffles, affectionately referred to as yo’s by Coleman.  Most of you who know Coleman know him to always have his ‘yo’ with him. It is his security food and was his ‘reward’ food as he progressed into trying any new food. 

The process to learn to eat new foods is long and requires patience and perseverance.   But it works.  Patience I have, perseverance not so much.  Billy is much better at that than I am.    And thankfully we had Kara, Coleman’s feeding therapist, to do the heavy lifting for us.  From first being able to look at the food, then have it on the same plate as something else you are eating, then smelling it, then touching it, the putting it on your lips, and eventually eating it.  Each step can take weeks to get past.  With Kara’s help, Coleman learned to eat several different foods, and she gave us the education on how to continue the effort on our own, now that his therapy has ended.  Are we amazing at it?  No, not really.  But we are trying.  He eats a small variety of foods, and the portions of those foods that he does eat are very tiny.  And like so many of his other routine fixations, he gets quickly addicted to eating the same thing over and over.  So once a new food is introduced, we have to be sure to keep it in the mix or he will forget that he has tried it and will refuse it all over again. 

In terms of self –feeding, Coleman is not yet very adept at feeding himself.  He tries, but the dexterity of holding a spoon coupled with the motor skill to get it to his mouth is more than he can handle, and he ends up spilling much of it between the plate and his mouth.  He is getting a lot better though, and we are working on it.  Finger foods, like waffles (he eats dry without syrup) and hot dogs (cut up) he can pick up himself, but his two staple foods of Mac n Cheese and Chicken Broccoli and Ziti are more difficult.  He is particular about where he eats as well, choosing not to eat at school which is the biggest issue.  He needs the energy to get through the day, but usually will not eat more than a couple of bites for the staff.  So he comes home famished and often eats dinner at 3:30 or 4:00.  

Like so many kids on the Spectrum, there are a lot of things we need to work on at home.  Play skills, social skills, language, behavior, OCD obsessions…. Feeding and eating is no different.   And like so many parents of children on the Spectrum, there are only so many challenges you can attack each day.   So some days we focus on play skills, some days we focus on behavior, some days we focus on eating.  And some days, we don’t focus on anything at all.  Because we are human, and some days we just want to hug and love Coleman for who he is and for how far he has come.   Even if he still loves to have 8 waffles in a day.