Ben Lovejoy
The father of an autistic child with Down syndrome has said that an iPad
with a speech app has made more difference to his son's life than the far
more expensive dedicated device offered under state programs.
The piece highlights the gap between what will most benefit kids with
special needs, and what healthcare and education programs are willing to pay
for .
David Perry tells the story of his son in a piece in The Verge.
block quote
My son is 15. He is also an autistic boy with Down syndrome. From the moment
he was born, well-informed experts, well-intentioned fellow parents, and a
whole universe of marketing suggested that technology would provide answers
to many of the problems we'd end up facing [.]
Technology can provide disabled people with wondrous new tools, but only -
as with so many kinds of innovation - when they are married to systems that
take into account our complex and varied humanity [.]
My son's most significant needs relate to speech. By the time he was three,
it was clear he was not going to predominantly use verbal speech, though he
was learning to communicate in a wide variety of ways. His speech therapist
at the time quickly sent us to a world-class facility to assess the best way
for him to use tech to talk.
block quote end
What they hoped for was a $250 speech app, and an iPad on which to run it.
What they got was three thousand dollars' worth of the lowest-tech you could
possibly imagine.
block quote
We tried a wide variety of devices, but because he had the manual dexterity
to operate the simplest one, that's the one the state would pay for. Within
a few weeks after having it prescribed, we had a plastic box where you could
literally cut and paste pieces of paper with words and pictures on it, and
then use your voice to record sounds that then my son could press to play
out loud. It was over a foot long. It cost over $3,000 [.]
We wanted Proloquo2go, one of a number of programs that can reproduce words
or phrases by selecting from an infinitely customizable menu. It cost $250,
which we didn't have, and needed to be on an iPad, which we also couldn't
afford. The price would have been much lower than our state-funded arts and
crafts box, but at the time the system wouldn't pay for medical programs on
non-medical devices.
block quote end
Fortunately, a donor stepped in to provide the iPad and app. Not only has
that provided the teenager with the much-needed speech app, which he's able
to use at school, but it has also given him access to much-needed visual and
auditory stimulation - key to an autistic child.
block quote
Like many teens, he watches YouTube or streams music on Amazon. His favorite
videos include music and video from the Just Dance games and the entire
corpus of Sesame Street's Ernie and Bert, which are amazing short-form
explorations of emotion, language, humor, and daily living. Sometimes he
watches them in German or Dutch. He used to watch superhero movies but has
lately shifted into a creature-feature phase, finding clips of monster
fights from the Jurassic Park and King Kong franchises. He could stream the
movies of course, but he likes to skip to the good parts and re-watch them.
In all cases, he likes to dramatically re-enact his favorite dances, fights,
and puppet skits in the room as he watches [.]
As I'm writing this, my son is downstairs watching YouTube videos. When we
have dinner, he'll stream music on an iPad, typing song titles into the
app's search box either from memory or from a list we've written down (at
his insistence) on paper.
block quote end
The other items that most helped? Straws, velcro straps, rubber bands, and a
$3 hand mirror so he can see the shapes his tongue is making when working on
forming words.
Perry says that there's no single solution to the communication challenges,
but an iPad and app has clearly achieved way more than the more expensive
yet laughably crude device they were offered.
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