Caleb's Journey

Caleb with his adoring big sisters - January 2012

Our son Caleb was born in March of 2009. A beautiful, blue-eyed blessing that stole our hearts immediately (and those of his two big sisters!). We always commented on what a laid-back and easy-going baby he was. However, by the time he was nine months old, it became apparent that he was not hitting the major milestones in the areas of gross and fine motor skills and communication & speech. That started our family on a unique journey of learning, discovery, heartache, and celebration that continues today.

Caleb has extreme muscle weakness (hypotonia = low muscle tone). This means that though he is almost three years old, he is too weak to go from lying down to sitting up on his own. He cannot crawl or walk yet, and has yet to perfect the "pincher grasp" which is needed for picking up small items between the thumb and forefinger. He cannot chew yet, so he can only eat foods that have been pureed or are very soft. He does not have any words at this time, although he has a couple of hand signs he can do. 

Caleb doing his favorite thing...making music

In October 2011 I decided to put Caleb and I both on an elimination diet. While Caleb does not yet have a "diagnosis" at this time (not for lack of trying...we've done almost every kind of testing there is!) he does show some of the mannerisms of autism. There is a lot of research out there showing a correlation between a GFCF (Gluten-Free Casein-Free) diet and improvement in children with autism, and while Caleb does not have an official diagnosis, I felt it was something I should try in the hopes that we would see behavioral improvements and possibly developmental improvements. I eliminated gluten, wheat, yeast, dairy, eggs, corn, soy, peanuts, shellfish, sugar, and artificial sweeteners/flavors/colors from his diet. I fed him a mostly plant-based diet with lean meats. 

Within about three weeks, Caleb already seemed like a happier kid. He had struggled from birth with terrible constipation, and even when he wasn't constipated he often seemed like he was in pain (and I wasn't sure why, but suspected intestinal issues). Eliminating the most common allergens from his diet (which I was doing for myself at the same time) seemed to bring him out of a fog. Suddenly, we realized we were seeing the best version of Caleb on a daily basis, rather than only catching glimpses of that Caleb on occasion. He was happier than I had ever seen him in his life. His appetite grew (and he grew!) and his pain lessened. His constipation was less of an issue. 

At the same time, he began making advances developmentally at a rate that was faster than we'd ever seen. He grew by leaps and bounds in the areas of fine motor skills and sensory therapy. He grew exponentially in his communication skills and began to do things like drink out of a straw...something that comes so naturally for typical kids, but it was huge for Caleb. And then, he became more physically independent; not crawling, yet - but he figured out how to scoot on his bottom and use his arms to help propel himself forward. This made for an even happier little boy. 

Caleb's first time drinking out of a straw! Yay for Jamba Juice!

Over the last couple of months, I've allowed some sugar to creep back into his diet, and I've seen a change for the negative in him. More autistic-type mannerisms, more in a fog. I've just cut him off from sugar officially - again - indefinitely. I am currently researching diet options and bio-medical treatments, as we are nearing the end of the traditional diagnosing and treatment methods that our HMO offers. I have met with a lot of resistance in trying to get him tested for allergies through our HMO, so I'll be headed to a naturopath soon. 

It is emotionally draining and time-consuming to do the research and testing required. It is hard work to learn a whole new way of cooking and eating. This journey is not a sprint...it's a marathon. But when it's your child...you find strength inside that you didn't know you had. God knew what he was doing when he made mothers! 

Throughout this process, I am feeling empowered. With God's help, I'm learning that I CAN do this. I can make a difference in his development. I can do more than just sit back, at the mercy of my HMO, feeling helpless. By simply changing Caleb's diet, to start with, I can affect my son's future. I can affect my whole family's future!