There’s lots of good help out there. But figuring out who you have to find is up to you, the parent. How do you even know what you need? I share why Child Decoded is the guide I would have given anything to have when we were trying to find answers for our son.
by Marijke Jones
When I was asked to be on the Child Decoded team as an editor (i.e., “take all this clinical info and make it into something freaked-out parents can deal with at 11 at night”), I jumped at the chance.
Why? Because I’ve been there. My son CJ was one of those kids no one could figure out. Exhausted and shut down by the end of the school day, he seemed completely wrung out by the whole school process…but no one could figure out why.
I heard “he’ll grow out of it” and “boys mature more slowly than girls” a lot.
Child Decoded is the book I wish I’d had. It took me years – YEARS! – to get all the answers to the CJ puzzle. If I’d gotten them sooner, think how much less stress he’d have had to undergo. His whole childhood could have been different.
So…what does Child Decoded offer?
Let me tell you.
This is what it would have helped me do differently:
#1. Get a complete overview.
The first question is: What the heck is going on, exactly?
It can take a depressingly long time to put the whole picture together. Even with a full neuropsych eval in the middle of third grade, our journey from the time CJ was five until he was about twelve looked a lot like this:
Things tend to play out as follows:
Say you have a complex kid with a lot going on. Someone (your doc or a teacher) says, “Oh, clearly THIS is happening; you should go check out THIS.”
You are relieved. You are cautiously excited. You go research THIS and find someone who deals with THIS and get therapy for THIS…and six months and thousands of dollars later, your kid is still struggling and it’s back to the drawing board until you find the next THIS.
If your kid is like mine, and there’s a whole freakin’ lot of THIS es to figure out, stumbling on answers in this fashion is going to take you approximately forever. You spend a lot of time wondering what you’re missing, and not knowing what questions to ask to figure out what.
The truth is, no one person knows it all, tests for it all, or can tell you everybody else you need to find. It’s up to you, the parent, to find all the pieces to your unique kid-puzzle.
Child Decoded has extensive questionnaires that help you pinpoint what symptoms you’re actually seeing, and then helps you identify what they might mean. CJ ended up having a bunch of things I’d never heard of, because who the heck knows this stuff until they have to?
#2. Dig deeper than the symptoms.
There can be so much going on underneath the struggles that you’re seeing.
Whether it’s biomedical issues, sensory integration issues, ongoing anxiety issues – the list goes on, and Child Decoded discusses this at length – there are some issues that affect the nervous system and brain function more globally than you may realize.
This will aggravate the visible learning or behavior problems you’re seeing. It will also make it harder for therapies to get traction.
In those cases, the ‘real’ problem is not the tantrums, the shutdown, the academic struggles. The ‘real’ problem starts much deeper.
My painful example:
For years, people would comment, “I wonder if CJ has food sensitivities.” And I would think, “Thanks, I have enough on my plate with what we already know about.” I didn’t realize the impact food reactions might have, and no one explained it.
He was 11 before our new doc looked at him thoughtfully and said, “I really think we need to do a food sensitivity/allergy test.”
After discovering sensitivities to eggs and dairy, we cut those out…and within a week, CJ reported that he had way more energy, didn’t feel overwhelmed all the time, and could think more clearly and concentrate for longer. “It was like I always had brain snot before,” he said. “It made everything feel too hard.”
The inflammation throughout his system, including his brain, had made all brain function a struggle. Even though he’d made progress, it had been uphill all the way.
#3. Do things in the most effective sequence.
“We’ve identified the issues! Let’s go fix them all!”
Well, it sounded good at the time.
Take it from me: don’t do this.
There is only so much work a kid can integrate at one time. If you take on too much, you will make your kid neurologically overwhelmed and very, very cranky, and yourself stressed and very, very broke.
Well, not if there are multiple issues on multiple levels, anyway.
But where do you start? And how does everything else line up?
Well, now that you’ve gotten the complete overview (see #1), and you’ve dug into deeper layers of neurology and biomed issues (see #2), work from the foundation up.
Biomedical issues or sensory integration issues, for example, should come first. That alone will have a huge impact on your child’s function.
Get that integrated, and then assess what’s left and how it ranks. There’s a lot more about this in the book.
I’d tell you how effective it is to do it this way, but since I did things in the exact opposite order, all I can tell you is how ineffective that was.
#4. Know who addresses what, and how.
“OK, we now know he has X. Who works with that? Are there different ways to work with it? What the heck are all the options?!”
Starting from scratch on all this research is time-consuming and gets incomplete results. I speak from experience here.
When I was told that CJ had auditory processing issues, I was given the name of “the best practice in the area.” “Everyone” went there. Yay, right?
I now know that although they do excellent testing, they only recommend ear filters, which for some kids (like mine) are only minimally effective. And they don’t even mention therapeutic treatments, which do exist.
I found all this out when I edited the book and interviewed other practitioners. And then experienced that sinking so feeling familiar to those of us trying to help our kids, when we realize that we’ve missed the boat on something.
We put together a section of “who does what” for every issue we discuss, including CAM (Complementary and Alternative Medicine), and describe how each kind of practitioner works. So you don’t have to do all the legwork and can make an informed decision about whom you are seeking for help.
That alone would have been worth the price of admission for me.
Ultimately, this book is about giving power back to the parents. It ends up being up to you anyway; at the very least, you should have a decent map to the territory.
We need more complete information, and we need it in one place, and we need it laid out in a way that helps us figure out what the heck our game plan should be. So we can spend our time actually getting help, instead of feeling lost.
That’s what we offer.
If you are interested in reading about our whole journey with CJ (who is now a happy, successful adult), you can find that here.