The Diagnosis Battlefield

Amalah is currently on maternity leave. In her absence, however, she’s just as tethered to the computer as ever, and will be using this space to ask you — our intrepid Advice Smackdown Commenter Crew — questions. What’s been baffling her, as a parent, you may wonder? Why, she’s so glad you asked!

Dear Internet-Wan Kenobi,

So we’ve been dealing with a myriad of developmental hiccups, special needs, therapy plans, interventions, and diagnoses (and the myriad of family-and-friend REACTIONS to all those things) for almost four full years now. I’ve been openly blogging about a good 90% of that stuff for almost four full years now too. We should be champs at this, right? Or at least not…cowards about it, right?

But here’s the thing: No one in our family was very, well, familiar with a lot of the labels and thingies we were dealing with, especially once we moved past the relatively simple realm of “speech delayed.” Sensory Processing Disorder? Dyspraxia? Hypotonia? Oral defensiveness? Pervasive Developmental Disorder Not Otherwise Specified HUH WHAT NOW?

So for the most part, family members whom we have regular interaction have with more or less trusted our judgment and guidance when it came to All Things Noah, from discipline to approved foods and activities and all that. But along the way, we’ve certainly gotten an earful about Other Children and Other Parents and Other Diagnoses — namely, ADHD.

My in-laws have a lot of opinions about ADHD. The first and foremost being that it doesn’t exist, that it’s overdiagnosed by parents and schools looking to drug up children, that it’s almost 100% caused by a bad diet and eating the wrong things and toxins, that ADHD children simply aren’t given boundaries and are spoiled, etc. etc. etc. Oh, no matter how many times I’ve told her that she’s repeating some kind of special education urban legend, my MIL is convinced that public schools are allowed to “force” you to put your child on Ritalin, against your will and even your doctor’s advice.

So…we haven’t exactly told them that Noah was diagnosed with ADHD yet.

Now, here’s the thing: We aren’t in any rush to try medication. It’s not something we will rule out in the future, but it’s not on the table right now, at his current age and grade level. We HAVE made significant changes to Noah’s diet already (zero food dyes, artificial flavors, preservatives) and are currently experimenting with an elimination diet targeting refined white sugar and flour. And several homeopathic remedies that may or may not be a load of overpriced snake oil, but hey, they’re worth a try. Noah will be seeing a therapist regularly to help him with his anxiety, attending OT summer camp, starting kindergarten with some really fantastic supports and accommodations in place, basically: WE’VE GOT THIS. And I think we’ll do a pretty decent-ish, open-minded and educated job.

But I don’t think it will ever be enough for them, you know? I’m terrified that once they “know” the new “label” we’ll NEVER HEAR THE END OF IT. The undermining comments, the takeover-y diet attempts (they still don’t believe us that yes, we tried it, but no, it’s NOT GLUTEN), the sending us books and links that support the more — ahem — quackery end of ADHD and ASD treatments, the overstepping with discipline…gah. Stuff we’re already seeing more and more lately and have been struggling to re-draw the boundaries around Noah and his health and behavior ALREADY.

So…I don’t even know what my question is, exactly. Does anybody else have a similar experience? What did you DO? Or say? Did you ever just…stop offering information about your child’s progress? Or did you continue to send your own books and articles and hope that eventually the person in question would accept YOUR approach and stop pushing so hard for their own?

Leave your thoughts, suggestions, sympathies and counterpoints in the comments section.