Thursday, June 12, 2014

Our brush with Sensory Processing Disorder - part 1

There aren't too many things I won't write about. I'm more or less an open book - I'll share my struggles with autoimmunity, I'll write honestly about living in Europe (it's not all it's cracked up to be…) and I'll happily share my thoughts on even the touchiest faith-based or political topics. Not because I'm always right, or have everything "figured out," but usually because I don't. I'm like the apostle Paul and believe that God's glory is made perfect by our human weaknesses (2 Corinthians 12:9) and if I don't share, I rob Him of a chance to work through me and into someone else's life.

But, during the last two months, I've been pretty silent. About a situation we've faced that had some pretty big implications for our 5-year-old's life.

Why the silence? Because I'm so type-A it's not even funny! I like to think that if I just plan well enough, read the right books and select (and serve) the very best whole, organic foods, my kids will grow up perfectly, without any problems whatsoever. This situation was a total reminder that that is so NOT the case. No matter how much I do, I'm in no more control over the stories of their lives than I am over the weather.

After six weeks, we've come "through the woods" a bit now and I'm ready to open up, in the hope that our story inspires or helps parents who might be going through the same thing.

Shortly after we arrived back in the US, after almost three years living in the Netherlands, we started noticing that our Little Man's behavior was just "off." Compared to other children we saw at parks, grocery stores and play areas, he was completely bouncy, hyper, over-talkative and completely unafraid of anything. He also started showing a scary lack of caution around strangers. As in, he'd meet a new person for the first time and would automatically be reaching to hold hands, give hugs, etc., despite warnings and repeated conversations about "stranger danger."

At first, we chalked up the strange behavior to our recent move. It's super hard on young kids, well kids of any age actually, to make a move between cultures, even when they're moving "home" after a few years abroad. "Reverse culture shock" and repatriation  can even be more traumatic than the initial move was in the first place. So we thought to ourselves "it's not a big deal, he'll get over it. After all, Dutch kids are all a little crazy." (side note: Dutch parenting is more than a little bit different … definitely more permissive and less disciplined, resulting in rowdier kids in general … but more on that in a future post!)

However, during our "back to America" physical exam appointment with a wonderful pediatrician, we realized that what Little Man was experiencing was actually something bigger. Something with a name, a label, and big implications for his future. We learned that he was likely on the path to a Sensory Processing Disorder diagnosis.

If you want a full explanation, you can click the SPD link in the last sentence, but basically, the disorder just means that SPD brains have a harder time integrating all the stimuli received from the various senses - sight, sound, touch, smell and taste. For example, non-SPD brains can take a sip of coffee (using sight to reach the cup, touch and taste), go back to typing on a computer (sight, touch and sound of the keys) while sitting in a rose garden (using smell and sound) without anything unusual happening. The brain integrates all the different stimuli, while allowing the non-SPD person to continue the task of typing a blog post unaffected. However, if an SPD brain were to try the same task, without any therapeutic assistance, it would be much more difficult. The feel of the coffee cup would be examined, the taste of the coffee would seem to explode in the mouth, the temperature would have to be perfect and would seem overwhelmingly hot or cold …. and each of these sensations would be felt individually. Overwhelming, right? When SPD brains don't receive the proper support, they freak out. And that's when you start seeing symptoms. Like excessive risk taking, or complete lack of "stranger danger." Everything we were seeing with Little Man.

After I got over the initial shock, our doctor gently walked me a brief summary of this SPD checklist (I completed the entire form later at home) and future implications of un-dealt-with SPD … future academic problems, low self-esteem, trouble fitting in and often ADHD diagnoses ... and how misunderstood it is by the medical community in general.

But, then, because he is who he is (he's awesome!), and because he's board-certified in both allopathic (aka, conventional) medicine, as well as holistic medicine, he shared some good news. SPD is both treatable and reversible. And, with work, lifestyle choices can often make a complete difference in whether SPD progresses from a minor inconvenience to a full-blown problem.

When we left his office (after an hour-and-a-half-long conversation … have I mentioned this doc is awesome?!?), we had a specific treatment plan outlined.

Here's what Little Man's "prescription" looked like when we left our doctor's office:
- Morning and afternoon intentional physical play activities - running around, swimming, etc
- 45 minutes to an hour of "nature therapy" every single day
- 12 - 14 hours of sleep each day, with an earlier bedtime (he'd started staying up until almost 9:00 pm during the move) and a nap, aided by a nightly dose of melatonin
- Twice-daily homeopathic calming remedy
- Twice-weekly "centering" activity that helps the brain develop the ability to integrate sensory experiences (we chose a martial arts class, because we'd already signed him up, but there are many, many activities, tons of them home-based that we could have used instead - here's a great link, full of resources)
- Vitamins: we had him on a daily multi and a fish oil supplement before we went in, we ended up doubling the fish oil and adding probiotics, using double the amount of probiotics called for on the label   - many kids with SPD have "leaky gut" problems (note: please don't read this and think you should do any of these immediately with your kids - find a holistic or functional medicine doctor to help you work through supplement levels based on your kids' individual needs)

We started the above literally the day we left the doctor's office. In fact, I stopped at the park on the drive home, followed by Whole Foods for the vitamins!

After about 10 days, we started seeing differences in Little Man's behavior. The excessive risk-taking stopped. He started remembering my cautions about strangers at the park. For that matter, he stopped trying to jump from the highest slide all the way to the ground. When we met new people at the park, he gave handshakes or high fives, then went back to whatever he was doing.

After about a month, we noticed that, in addition to the behavior issues clearing up, his skin looked a ton better (it tends to be really dry) and his eating patterns were much more consistent (when we first arrived, he'd either eat everything on the table or nothing at all - and we never had any idea which it would be).

Fast forward another couple of weeks and we had a follow-up appointment with our doctor yesterday. He was amazed at Colin's progress and noticed a marked difference in how Colin behaved during the appointment and in his office. Our treatment plan is working, we're decreasing the amount of the remedy we're using each day and we'll begin decreasing the probiotics as well.

Were these changes easy? Was this as simple as picking up a traditional prescription pill that a conventional doctor would probably have recommended?

No, and no. It's hard, some days, to make it to the park. And it's even harder to stay there for close to an hour on a busy day, when errands need to be run, moving details need to be dealt with and, you know, when this thing called "life" is happening. But, seeing the results in "real time" encouraged me to stick with our program and the results have been well worth the work.

An additional bonus result : at only 5 years old, Little Man is getting to see the connection between how he treats his body and how he feels about life in general. He sees the difference exercise makes for him, he's learning how to make healthy choices. And that's priceless. This whole process has also allowed us to teach him about what the Bible has to say about health and healthy choices.

So where are we going from here?
- "Nature therapy" is part of our life, as are our twice-daily physical activity sessions - our new home, on 2 acres in New Jersey (we'll be there July 1 - yay!) will serve as "therapy central" (more about that in a future post … this one's getting long!
- My passion for holistic medicine has only increased through this experience - I'm seeing firsthand results of how taking a "whole body" approach to wellness results in positive changes
- We'll continue fine-tuning our "prescription" in the coming months and years as Little Man starts Kindergarten and keeps growing up.
- Speaking of Kindergarten, school choice is critical for families with SPD brains in the house. Access to recess is vital, as is a supportive and kind teaching staff who realize that kids need to get up and move. Schools that punish kids for not sitting still likely won't work for us and we're finding we need to be particularly "choosy" when it comes to education. Ironically, as I was drafting this post, this article popped up in my Facebook feed on the subject.
- I'm going to keep trusting that God, the author of my kids' stories, as well as my own, will continue to bring the right people and communities into our lives to help both Little Man and Tiny Miss grow into the best versions of themselves possible! Believing and praying Jeremiah 29:11 over both of them constantly - I know who gives them hope and a future.

We're not really going to be "done" with SPD for a while. We're going to need to remain vigilant and watch Little Man as he grows for signs he's struggling and needs additional support. But, we truly are happy to help him in whatever ways we can, as holistically and naturally as possible. We believe teaching him to rely on his own lifestyle choices, over easy pills, is a valuable life skill best learned early.

And that's where we're at now! As promised, I'll follow this post with others containing additional details.

If you've experienced SPD with your kids, I'd love if you'd share in the comments section below and/or post any links that others might find helpful.