What's Actually Worked
Issue #2: Not advice. Just a record.
I want to be careful with this one.
Because when you have a nonverbal child, everyone has something that worked for their cousin’s neighbor’s kid. Everyone has a protocol, a diet, a therapy, a supplement. Everyone means well and most of it is noise.
So I’m not writing this as advice. I’m writing it as a record of what has actually moved the needle for Artnez, in our house, with our kid. Take what’s useful and leave the rest.
What has not worked: trying to make him more like us.
The early years were full of interventions designed to get Artnez to do things the way other kids do them. Sit still. Make eye contact. Use words. Some of that has value. A lot of it was us chasing a version of him that wasn’t him.
The shift happened when we stopped asking “why won’t he” and started asking “what does he need.”
What has worked: following his lead on communication.
Artnez doesn’t use words. He uses everything else. The way he moves toward something he wants. The sounds he makes before he’s overwhelmed versus when he’s content. The specific way he comes and finds one of us when something is wrong.
We had to learn his language before we could teach him ours. Once we did, things got quieter. Less friction. More connection.
What has worked: writing everything down.
This sounds simple. It isn’t. When you’re in survival mode, documentation feels like paperwork. But the log of what he ate, how he slept, what happened at school, what triggered a meltdown and what didn’t. That log has been more valuable than any single meeting with any specialist.
It’s also the reason I built IEP Compass. Not to sell something. Because I was tired of walking into meetings with a bad memory against a team with a file cabinet.
What has worked: Zuli.
I’m not going to pretend I’ve done this alone or even close to equally. Zuli sees things I miss. She noticed patterns in him months before any eval confirmed them. She built the mascots for the app at 11pm after putting him to bed. She is the reason any of this exists.
I’ll write the marriage piece separately because it deserves its own space. But it belongs in this one too, because none of what has worked with him has worked without her.
What is still hard:
Most of it. The uncertainty about what his life looks like at 15, at 25. The meetings that feel like they’re about a file and not a kid. The days when communication breaks down completely and you don’t know if he’s in pain or scared or just done.
We don’t have that figured out. We’re still in it.
But we know him better than we did. And he knows we’re paying attention.
That’s the work.
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Forward this to a parent who’s walking into their first IEP meeting. That’s the whole ask.
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