When Your Child’s Diagnosis is, “We Don’t Know…”

Be honest. You know without a shadow of a doubt that your child is the smartest, cutest, funniest, fill-in-the-blank-est kid in the world, right? Of course, you do. How do I know? Because so is my kid. Every parent knows their own child—their flawless offspring—is the next Einstein. The next President of the United States. The next Michael Jordan. The next Simone Biles. No other kid in the world looks that cute with spaghetti sauce all over her face. No other one-year-old digs into a smash cake like your kid. And definitely, no other kid can wipe themselves after going #2 like your kid can.

We all believe our kid is unique. We love their uniqueness. We revel in it. We want them to be one-of-a-kind.

Except when it comes to a diagnosis. Except when you’re sitting around a table with a team of experts trying to put together a plan of action for getting your kid caught up to some kind of “normal” timeline.

No Instruction Manual

I recently sat through (endured?) my 4-year-old daughter’s third ARD meeting. That stands for Admission, Review, and Dismissal. I sat around a table with her speech therapists and other educators to talk about “the plan” for how to best tackle her apraxia. She’s been with these specific therapists for 9 months now. They’ve seen tremendous progress with her. She can now produce an ending “T” sound in CVC words (consonant-vowel-consonant) with about 50% accuracy. This is huge! This specific goal has been on her IEP since she was 2. So that only took 2 years. Whew. Apraxia is a beast.

So I’m encouraged by her progress. Her therapist raved about how hard she is working and the new sounds she is able to produce. Then we get into more specifics. Her therapist says she definitely has many markers for apraxia, but several inconsistencies as well. It could be a phonological processing disorder. It could be a malformation of the velum—a fancy, little muscle that is supposed to separate your oral cavity from your nasal cavity when you speak so that air comes out of your mouth and not your nose. This malformation is called a velopharyngeal insufficiency and yes, I had to Google that. Of course, it could be an actual malformation or it could be a case of mislearned oral processing merely parading as a vellum malformation. One requires surgery; one does not. Her doctors feel she is still too young to do the proper testing to determine a real malformation and too young for surgery. And then there’s the fact that she still has not successfully passed a hearing test in her right ear, so we still have to consider hearing impairment as well. The therapist’s exact words were,

“There’s just no instruction manual for how to treat her.”

My heart sank. I looked at new IEP goals with tears in my eyes. How are we going to meet these goals if we don’t know what’s really going on? Trial and error, they say. Lots of trial and error. We’ll try this method for three months, then we’ll either keep it up or move on to the next method. We’ll attack the apraxia, we’ll attack the phonological processing disorder, we’ll wait until she’s a little bit older to test for the vellum thing. Trial and error.

Living with Uncertainty

I know what all this means. It means we’re still a long way off from “normal.” It means heading back to the ENT for more tests. It means a lot of unknowns.

The unknown is hard to navigate. But what I used to fear I am now learning to appreciate. This is our journey and it’s not quite like anyone else’s, but uncertainty is not limited to families living with special needs. Every family, everywhere on the planet lives with uncertainty every day. We just don’t know what tomorrow holds. Let’s be honest, it’s all trial and error. Your kid probably didn’t come with an instruction manual either, right?

The good news is we get to walk this journey with the people we love and figure things out along the way. I’m taking it one step at a time, one day at a time, and trusting a God who does know the future.

Not Normal, And That’s Okay

When I sat down around that table with the experts that I trust with my child’s verbal development, I wanted better news. I wanted them to push some papers across the table and say that they were blown away with my child’s progress. I wanted them to say that my child was doing so awesome in speech therapy that she would likely be dismissed in a few months. Of course, I knew they wouldn’t say this. I hear her talk every day.

But I did think that after more than two years of tests and meetings and research, we might be a little closer to nailing down what this thing is that won’t let her just talk like other “normal” kids. We still don’t know. And that’s ok. We’re on this journey for the long haul, whether we figure it out this year, next year, or never. She’s our one-of-a-kind kid.

So yes, I know what all this means. It means more tests. It means more appointments. It means more therapy. A lot more therapy.

It also means a lot more patience. And a lot of waiting.

And it means our kid really is unique. (So is yours.)

We already knew that though.

 

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