This week’s post is a little different. A few weeks ago I responded to a Facebook post from my neighbor and friend. She was looking for a good, and somewhat healthy recipe for chocolate chip muffins for her son, who we are calling P.K. in this post. P.K. has Sensory Processing Disorder (SPD), and eats almost nothing. For him to want to eat anything other than pancakes and Ensure is a miracle, so when she told me he wanted these muffins, I grabbed my mixer and got to work.
Little Guy and P.K. are good friends and love to play together. Although P.K. struggles with SPD, he is just a normal kid to anyone that doesn’t know better. He is bright, and exceedingly curious and loves to run and play ANY sport. Like most five and six year old children, Little Guy and P.K. spend their time comparing Legos, Imaginext and Wii games. We love this kid!
The recipe follows my general rule for developing recipes for kids, but certainly takes P.K. tastes in to account more than most recipes. If you are not making this for the most finicky of eaters, you might try cutting back on the sugar a little and increasing the teff flour to half the total amount (any more and the texture will be too grainy). In my first several batches, I played around with using chickpea flour but couldn’t get past the beany flavor. I was stumped till I ran across teff. Teff, another ancient grain, is a nutritional powerhouse, and worked very well in the recipe. I used teff flour because of the amount of protein in it. Almost every ingredient in the recipe is here to provide protein. Low fat cream cheese has much more protein than full-fat cream cheese, Greek yogurt has more protein than traditional yogurt. Silken tofu is added for protein, but also helps add the fantastic cookie-dough like texture of these muffins when they are served warm. The turbinado sugar was my last addition (added after P.K. said he liked them but wished they had the crunchy topping like Dunkin Donuts). He’s right, it does make the muffin pretty outstanding. Maybe he has a future in recipe development!
I asked Jen, P.K.’s mom, to write a piece for me telling me about what it’s like to have a child with SPD. Here is the fantastic post she wrote for me.
The following written by Jennifer Jones.
Do you know me? I started to run before I walked, I slam my head on walls – or other children. I drool when I think about sinking my teeth into the nearest object to me human or otherwise. You stare at my mother like she has eight heads, she must have given me too much sugar, or maybe she just doesn’t pay attention to me? I am this uncontrollable little monster, and the more nervous you make my mother with your stares and disapproval the worse I behave. I sense her panic, pain, and anxiety, and I can’t handle the overload inside of my own tiny little person brain as it is, never mind hers too! It turns out though that my misbehavior is just a great deal of just-missed behavior. If I could only tell everyone that it was too loud, it smells really bad, my skin is crawling, I feel nothing and want to, or the lights… please someone turn down the lights!
We all have these adorable photos of our kids taking their first mouthful of food; the horror in P.K.’s eyes did not look that different than how most infants react. The difference is that six years later P.K. still has that same look of horror in his eyes when it is time to eat. I can put out the unhealthiest food choices possible and my son still runs and hides from what he feels is torture. It’s a cookie, kid — what is wrong with you?
Like most sensory kids, P.K.’s issues with food where not my only concerns. At four months old he started “crawling.” He would take his head and whip it so hard to the side that his body would follow from the force. You would hear THUD thump, THUD thump and my newborn would moving across the room. How did he not feel the pain? What was wrong with my child?!
Off to the pediatrician we went and the lectures began. Lectures to try harder, try different foods, and I was the parent gosh darn it, make him eat!! Everything I swore my child would never do started to stare me right in the face. He was still drinking from a bottle at age two because he refused every sippy cup on the market. He was still drinking formula till three because he was underweight and gagged out every kind of milk. The worst? The binkie! It was the one thing I swore my child was not going to have, yet my hand was now trained to jam it quickly back into his mouth before he found a fleshy part of a child near him to latch onto instead.
Chewelry saved my life. This funky little necklace he could wear to school and chomp on whenever he needed it. I no longer had to do the walk of shame from P.K. sending yet another pre-school buddy home with a red tattoo of his teeth.
When he was almost three I finally got the green light from the pediatrician that P.K. MAY need a little extra help. Looking back now I know he should have been in early intervention from birth but as a first time mom I trusted in my pediatrician. Our first trip was to Children’s Hospital in Boston. I tell people that I couldn’t even get P.K. through the door and they assume I mean I couldn’t get an appointment. What I actually mean is that P.K. had such severe sensory issues he actually could not go inside the building. The musical stairs, the bright colors, the noise, and the crowds of people sent him into hysterics. I left with him kicking, biting, and screaming feeling so utterly defeated as a mother.
Soon after we saw someone at Tufts Floating Hospital for Children. It was a totally different atmosphere and a perfect fit for my non-verbal sensory kid. I was told by the most amazing Behavioral Therapist Dr. von Hahn in the Center for Children with Special Needs that P.K. has Sensory Processing Disorder.
SPD is a very broad diagnosis for kids who suffer from multiple sensory issues but are not Autistic. It is not currently in the DSM for a diagnosis of a mental disorder. I like to think of it as a staging ground until the doctors do give your child a more thorough DSM diagnosis. It gives you a place to start understanding why your child seems to be so very different than most of his peers. There are hundreds of books, websites, and support groups about SPD. We started with The Out of Sync Child by Carol Stock and it changed everything for us.
By the time P.K. was three he was receiving help for all of this sensory issues. I cried of joy when he rolled over, when he took his first step, but I think I cried the most the day my P.K. put down the bottle of formula and put a pancake in his mouth. He never ate the baby food, all of my homemade “I need my child to be super healthy” baby food I spent hours pureeing… He gagged and threw up all the toddler fun finger puffs, and bit any hand that tried to feed him.
Till the pancake… I don’t know if it was the maple syrup, the texture, the smell, or all of the above but we started having pancakes for every meal. It was at the same time that Jessica Seinfeld’s book Deceptively Delicious came out. I started putting everything into his pancakes. I pureed fruit, veggies, and even chicken. Every day for a year P.K. ate pancakes and drank his formula. He finally crawled out of the 13% percentile to the 40th!
We saw several feeding specialist over the years. We have transitioned from having a sticker chart, to collecting marbles, to now cash. Yes, I pay my son eat. I know it sounds horrible, but every night when we sit down to dinner there is a “spit” bowl. If P.K. feels adventurous he will try something on the table he hasn’t before, or wants to try again. 99% of the time he still gags, looks at me with those huge eyes of terror, and spits it out into the bowl. He is rewarded because he smiles and claps and because he knows now how important it is for him to eat so he can grow and be healthy. He has learned how to save his money really well from this. Teaching my son the value of money, the pride of earning it, and the skill of saving helps balance out the feelings of failure I have as a parent from when people judge me, or worse judge him. He is old enough now to tell me it’s the way it feels, the taste, and/or the smell. We have worked together to figure out that the texture is the hardest part of eating for him. So at the dinner table we encourage him to keep trying the foods that he really just hates the feel of inside of his mouth. It’s fascinating at times to think about how complex the brain is. P.K. does not feel much pain on about 70% of his body. He had a broken foot for three weeks once because he did not feel it, it did not bruise or swell, and it wasn’t till I noticed a slight limp at night that I took him to get it checked out. It’s as if all the missing sensors from other parts of his body all ended up in the poor kid’s mouth. He would take the broken foot over the cookie any day.
P.K.’s diet now at age six includes Ensure drinks, pancakes, burnt pumpernickel toast with cream cheese, lime yogurt, peanuts from a shell, one kind of chicken nuggets cooked well done, any kind of crunchy bread, crackers, and vegetable juice. Last month he took a bite of a muffin and smiled. It sent me on a mad search to make Magic Muffins to add to our list!
My amazing neighbor, Rebecca, reached out to me and asked if she could help me with this new food adventure. It’s a muffin, how hard could it be right? When you need to jam in all the protein and nutrients into his daily diet making this muffin becomes quite the task. Could a muffin be created that passed the mom’s label test and the Pancake Kid taste test? I failed miserably over and over again until Rebecca stepped in. P.K. gave feedback about taste and texture and after only a few tries did she create MAGIC!
P.K. may still enjoy his habit of rubbing warm pancakes on his face before he eats them for dinner, but he happily packs his Magic Muffin in his LEGO lunch box now for school. Eating healthy and sustainable might be a challenge for most of us, but when you add in some SPD to the mix it becomes twice as hard. Like everything in life though with the right tools, knowledge, and a little help from your friends anything is possible.
For more information on Sensory Processing Disorder: