My son didn’t want a scientific miracle, he simply wanted an iPad

My son is 15. He can also be an autistic boy with Down syndrome. From the second he was born, well-informed consultants, well-intentioned fellow mother and father, and a complete universe of promoting urged that expertise would offer solutions to lots of the issues we’d find yourself dealing with.

This isn’t the technological future we had been promised when he was born. We thought by now we’d have gadgets, apps, and prescription drugs that may assist him study and talk extra simply, whereas additionally retaining him safer in a hostile world. Technology can present disabled folks with wondrous new instruments, however solely — as with so many sorts of innovation — when they’re married to programs that take into consideration our complicated and various humanity.

It’s true, after all, that he depends closely on expertise — although possibly not the sort of tech that first involves thoughts. When it involves entry, a very powerful gadgets are plastic straws and velcro straps on footwear. Elastic waistbands are additionally fairly nice. He used to depend on plastic Mardi Gras beads to stim with, motions that the truth is make the world extra accessible by giving him wanted enter. These days he uses rubber stretchy strings which have a extra pleasing weight. When it involves remedy, he’s doing wonderful work creating verbal speech with a collection of colored tubes and shapes that signify particular sounds and can be utilized to cue him (by inserting them on his lips and tongue) to place his tongue so as to make the sounds he needs. He additionally makes use of a $3 hand mirror we purchased on the native drugstore, laughing as he watches his personal face.

Like many teenagers, he watches YouTube or streams music on Amazon. His favourite movies embody music and video from the Just Dance video games and your complete corpus of Sesame Street’s Ernie and Bert, that are wonderful short-form explorations of emotion, language, humor, and day by day residing. Sometimes he watches them in German or Dutch. He used to look at superhero films however has recently shifted right into a creature-feature part, discovering clips of monster fights from the Jurassic Park and King Kong franchises. He might stream the films after all, however he likes to skip to the nice components and re-watch them. In all instances, he likes to dramatically re-enact his favourite dances, fights, and puppet skits within the room as he watches. Honestly, it may be a bit loud, however what teenage boy doesn’t annoy his mother and father along with his media decisions and quantity generally?

Tech is only a software or a plaything for him like another. But we had been promised greater than that — we had been promised a future by which expertise would mediate between my disabled son and an ableist world. Instead, what is out there to my son is pushed extra by arbitrary programs than by his wants and his character.

My son’s most important wants relate to speech. By the time he was three, it was clear he was not going to predominantly use verbal speech, although he was studying to speak in all kinds of the way. His speech therapist on the time rapidly despatched us to a world-class facility to evaluate one of the simplest ways for him to make use of tech to speak. At the time, Nico’s healthcare and training prices had been coated by the “early intervention” applications in Illinois — statewide programs funded by federal, state, and native {dollars} supposed to assist kids underneath three years of age meet “developmental milestones.”

We tried all kinds of gadgets, however as a result of he had the guide dexterity to function the best one, that’s the one the state would pay for. Within a couple of weeks after having it prescribed, we had a plastic field the place you could possibly actually reduce and paste items of paper with phrases and photos on it, after which use your voice to file sounds that then my son might press to play out loud. It was over a foot lengthy. It value over $3,000.

There had been a lot better, and way more costly, devoted speech gadgets available on the market, lots of that are the truth is a marvel of engineering, and don’t require exhausted mother and father to do arts and crafts. But what we wanted, we thought, was a speech app; they had been simply changing into obtainable on cellular platforms like iPads. We wished Proloquo2go, considered one of a variety of applications that may reproduce phrases or phrases by deciding on from an infinitely customizable menu. It value $250, which we didn’t have, and wanted to be on an iPad, which we additionally couldn’t afford. The value would have been a lot decrease than our state-funded arts and crafts field, however on the time the system wouldn’t pay for medical applications on non-medical gadgets. We in the end bought each the pill and the app because of a donor.

I’ve by no means forgotten the expertise of slicing out little squares of phrases, attempting to make them match on his ultra-expensive gadget, understanding for certain that he was by no means going to be carrying this round as a youngster, not to mention as an grownup. What he’d be carrying, I assumed — even again within the Dark Ages of 2009 — was a cellphone with apps, one thing versatile and multi-functional.

Nico nonetheless has the label “functionally non-verbal.” For us, which means he speaks on a regular basis. Sometimes he makes use of phrases he makes along with his mouth which might be recognizable as such — extra so if you recognize Nico properly sufficient to be fluent in his expressions. Sometimes he makes use of jargon, strings of sounds that aren’t recognizable as phrases, although once more, individuals who know him can usually discern which means. We assume which means is all the time current, whether or not we are able to discern it or not.

He makes use of plenty of signal language, principally for nouns (meals, folks, locations, and many others.). Behaviors are communication. If he takes his pill, goes upstairs to his room, and closes the door, the message is completely clear. He nonetheless makes use of Proloquo2go, however principally in school. When I attempt to get him to load up his app and inform me one thing, he stares at me, says, “no,” then proceeds to talk his thoughts with phrases or signal language, or generally simply level. He is aware of I perceive him. He’s not going to make use of tech simply because I say so.

There are different high-tech options being despatched our method, and they’re in all probability helpful for somebody. But in a society the place assets are scarce, even when that shortage is arguably synthetic, are they one of the best use of money and time? Pharmaceutical initiatives on bettering reminiscence and studying for folks with Down syndrome have commanded important funding with few results. Google is attempting to train AI to better understand verbal speech from folks with Down syndrome.

Meanwhile, we’re simply attempting to get our native Medicaid to cowl “functional therapy,” which focuses on talent improvement, independence in activities of daily living, and participation locally. He’s been receiving the remedy all yr and it’s been wonderful for him, however the funding for it has since been exhausted. If Medicaid received’t decide up the invoice, I’m unsure the best way to pay for it. I’m optimistic, however there’s loads of paperwork forward. I wager I might get him one other $3,000 speech gadget quite a bit sooner.

As I’m scripting this, my son is downstairs watching YouTube movies. When we’ve got dinner, he’ll stream music on an iPad, typing music titles into the app’s search field both from reminiscence or from a listing we’ve written down (at his insistence) on paper. He’ll eat whereas stimming, apart from when he takes a dance break.

There’s no app, drug, or gadget that’s going to remodel my son or his interactions with others. And that’s simply high quality. He’s doing nice and anybody who chooses to hear, who chooses to place in a little bit work, can meet him the place he’s.