PT 1 - 3 STEPS TO SPD

In your dark days, just turn around and I’ll be there. And maybe I won’t have more light to give than what you already have. But I will take your hand and we will find the light together.
— JM Storm
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PREFACE:  Often I feel like I should have been more aggressive with seeking questions early on.  I always considered Deacon’s maturity and level of comprehension when it involved “what to do next”.  It was important that the decisions we made to support him were appropriate to those two factors.  I also believed that if he understood the plan, that the plan/initiative/therapy would be more affective. I was always concerned due to my personal development delays and learning differences. As a child I was diagnosed with dyslexia and a speech delay. I received some intervention in my early years of elementary.  Therapy outside of school wasn’t really a thing so the message I received at home was to “slow down” as a way to support my dyslexia. Chase was diagnosed with ADD and dyslexia as well.  I felt like the odds were against him. 


Due to my upbringing, I had developed this mindset that he would “grow out of it” as I didn’t know differently.  Although I wanted to believe that he would “grow out of it” my gut told me otherwise.  It was difficult to figure out how to move forward with my instinct.  Much of the research I had read pointed to either ADD or Autism. Yet neither one of theme completely represented Deacon. His ability to engage with others was present and he sought social interaction.  Reading social cues was difficult but he strongly displayed empathy. In my eyes, ASD wasn’t it.  And it was too early to diagnose ADD.  As a result, I respected what our doctors advised— “Let’s keep an eye on it”.  Our story isn’t the same for everyone but I hope our experience can guide some people in the right direction.

Deacon at 3 years old  Photo by  Emily G Photography

Deacon at 3 years old

Photo by Emily G Photography

A common question I get asked is, “How did you get started? What did you do to support him?” The getting started, I would say,  were made-up in 3 Phases — diet, evaluation and media-time.  It was a progressive process that spanned from the ages of 3 to 5 but, I believe, these 3 STEPS supported his ability to become successful.  Below are some milestones to better understand the context of the steps we took.

1 year - primarily communicated via sign language with limited vocabulary in ASL and English.

14 months - he finally started to walk. Not uncommon but still left me worried.

2 years - his vocabulary and speech wasn’t developing and this would continue till his diagnosis at 5. ( I was a late bloomer myself when it came to speaking.)

3 years - behavioral concerns became more apparent—hot/cold personality, inability to focus and aggression were some of the symptoms 

5 years -  sensory stimulation became more evident in a formal classroom environment

STEP #1  -  DIET

A little after his 3rd birthday, Deacon experienced an allergic reaction that would result us going to urgent care.  After a panel of blood work we discovered he was allergic to eggs and the pediatrician requested a follow-up.  I scheduled accordingly (even though we had a separate primary pediatrician).  Instinctively, I felt like we could receive some additional answers. I’m glad I did because this would be our first big step in the right direction.  

During our follow-up appointment I addressed my concerns with speech and his arising behavioral concerns. I received the typical, “This is normal lets just keep an eye on it” in response to his speech. And then I heard a “BUT!!!” My ears perked-up and I was intrigued. Due to his allergen to eggs, the doctor asked me to outline Deacon’s everyday diet.   I didn’t think much of it because Deacon has always been a good eater. I never considered food being an attribute to his behavior.  I regularly cooked at home so there very few items he ate that were highly processed. The Dr. explained how many behavioral things can be inflicted with an unhealthy gut .  He recommended a 6 month trial for an elimination diet and supplements - extra vitamin D, Omegas, and probiotics.

What does an elimination diet mean?  6 months of elimination and re-introduction of diary, gluten, artificial/refined sugar and all artificial food coloring (especially red food dye). The first month would be cutting out all factors ENTIRELY.  After the first month, re-introduce one category. If he reacted negatively, eliminate the category and continue with another 30 day “cleanse”. 

Back in 2013, gluten, diary, sugar and egg free items just weren’t as accessible are they are today.  It felt like a NIGHTMARE figuring it out but within the first 30-days I saw a massive difference.  He was more consistent with his bowel movements (a fancy term for pooping), less irritable/aggravated, a calm(ER) temperament and more engaged.  I was seeing a whole new side of him.  The overall trial took a little bit longer than we had anticipated because we tested out different types of sugar.

OUR FINDINGS:

  • Absolutely NO RED FOOD DYE! The side-effects of consuming it was instantuous.  Extreme hyperactivity, radical behavior and became emotionally hypersensitive. 

  • Gluten was ok within moderation.   Consuming gluten wasn’t an immediate response the same way red-dye was.  It took a few days before the side-effects became apparent.  The side effects from the gluten was more so his temperament. As soon as he took a couple days off from gluten his body would reset.  He was able to bounce back pretty fast from it.

  • Dairy.  This surprised me the most.  This flared up his stomach resulting in some serious unhealthy pooping.  What was more surprising was how angry it would make him.  Luckily, he rarely consumed dairy products so it wasn’t difficult eliminating it.

  • Sugar I think was the hardest component.  So many “kid-friendly” snacks and condiments are processed with high fructose corn syrup and refined sugar.  High fructose corn syrup definitely trigger is hyper activity whereas refined sugar didn’t appear to effect him.  

As the years have gone by it’s been easier to apply these guidelines. Accordingly, gluten and sugar are given to him in moderation. We’ve eliminated dairy and artificial food coloring with a strong emphasis on red food dye. Luckily, Deacon was able to grow out of his egg allergy and we were able to re-introduce it back into his diet a couple of years ago. With so many natural food companies developing, the variety of options have made it easy to fit within these parameters.  I always kept in mind that Deacon was a kid. He was aware of what he could or couldn’t eat but sometimes we had those “cheat days” for special occasions like birthday parties. We’re not perfect!! Everyday has had it’s up and downs.

The success of the elimination diet provided almost 2 years of steady progression in his development. Based on my observations, since his body wasn’t fighting against what he was eating he became more perceptive to progress. I also believe that since he had to be so cognitive about what he was consuming at such an early age it allowed him to mature more. Best of all, his behavioral episodes weren't as frequent and in some ways I was hopeful we were “out of the dark”.