As I sit here at a desk awash in paperwork for various doctors, I’m overwhelmed for a brief moment and tears start stinging my eyes. Pull it together, get a move on, and do what I need to do – fight through yet another phone tree in an attempt to talk to a human and plead my son’s case.
How did it come to this?
We’ve finally reached that pivotal moment – the one where you finally have to admit there’s something wrong. That something is seriously wrong, and we need to figure it out fast before someone gets hurt.
For years – the last two, to be precise, we’ve asked doctors to figure out what’s going on. We’ve gotten the brush off: “oh, it’s just a stage, he’ll outgrow it.” We’ve gotten the blank looks: “what do you mean? He’s making eye contact, it’s probably just ADHD.” We’ve gotten complete cluelessness: “have you tried a different discipline method?”
There’s a point of hopelessness before the diagnosis is finally pinned down. We’re there. We’ve been there for a while, but lately things have gotten really bad. We want answers. Something! Not another clueless comment or blatant judgement.
We don’t have a formal diagnosis, but we’re staring down a distinct possibility that frankly, has me really scared. When your kid fits every criteria and then some, do you really need an expert to verify it? (yes, we do – we need that stupid paperwork that will get the school system off their “let him fail first” butts and make them offer services.)
Why is it that the “experts” tend to ignore our kid until he’s school age? The Engineer is 5. Barely school age, but suddenly the doctors are taking the meltdowns and defiance a little more seriously. It’s not new, goodness no! It has gotten worse, but this is the same kid, the same behaviours, that we’ve been dealing with for the last year.
We’ve danced around the autism spectrum disorder diagnosis (ASD) for a while but multiple doctors keep saying that it’s not a good fit. He’s borderline. But he makes eye contact, doesn’t fixate on things, and does ok socially. That’s not autism, right?
Yes and no. Turns out there’s a subset of ASD that’s called PDA. Pathological Demand Avoidance syndrome.
It’s a fairly new diagnosis with no good research behind it here in the states. The UK has recognized it for a while so that’s where I’ve gotten most of my information. It’s anxiety based – PDA kids will trigger off of practically anything that sets off their anxiety.
No cure. No treatment. No hope for any improvement. It’s a bleak, bleak future staring me down right now.