Autism dad, author, and activist J.B. Handley gets RAW as he raps with us about his new book Underestimated, An Autism Miracle. His lyrical journey into unlocking his nonspeaker son Jamie’s voice using Spelling to Communicate (S2C) has we homies channeling Tupac. East Coast-West Coast rivalries aside, listen in and get inspired by Changes. “Things will never be the same” for his notoriously strong kiddo, and maybe yours too.
We were so excited about this interview. Handley is our peer and therefore has also been around the block of the autism hood more than a few times. He and his son Jamie’s love for old school rhymes made us instant homies, although we have yet to convince him that 2LiveCrew‘s depth doesn’t stop at their mesmerizing bass.
Do not miss a beat of this interview. For starters, J.B.’s tune only encourages parents to get “As Nasty as They Wanna Be” (to quote a certain double platinum album) when it comes to dealing with practitioners who do NOT “jive” with YOUR plan toward your autistic child’s improvement. Warning: EXPLICIT LYRICS followed by truth bombs. Warning: J.B. does NOT plan to change his tune. GET IT BOY! Translation: we are fans.
Please read Underestimated. Thousands of nonspeakers like Jamie are finding their voices using S2C‘s system of letterboards. The Disorderly Blondes, not known for their lack of words, intend to shout S2C success stories from the rooftops. This episode is only the beginning. Keep the needle on the record.
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Here are the questions we asked J.B. Don’t think for a second the harmonizing begins or ends with these. In fact, if you turn your volume up loud enough you’ll get an earful of exclusives. Hint: another soundtrack is about to throw down!
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BRENDA: (On the topic of rap and rap lyrics): DID YOU EVER CATCH A GLIMPSE OF JAMIE, let’s say in the car, at least bopping his head?
KRISTI: Now let’s rewind the old skool mixtape to 2019. The all too familiar vocabulary words you used to describe Jamie’s kind of autism then are quite different from the ones I just mentioned. Tell our audience about the nature of his then severe autism and that most dangerous drug you say we autism parents ingest- HOPE.
KRISTI: J.B. comparison can be the thief of autism parent joy, but we bet you’re glad you compared notes with fellow parent Honey Rinicella. Her son Vince became what’s called “open” using the Spelling to Communicate or S2C method and HOPE seeped in. Tell us about that time and what it means to be OPEN.
BRENDA: I know what I read and I believe in this process. I am not sure if this is something that would work for Dylan yet, but I am willing to try it. He might fall more under the “unreliable speaker” label. That said, I feel like you in the beginning and how you expressed yourself. That’s how my husband and I STILL speak now. You said: “We had no idea had dreams, goals, or hopes for his adult year. How did Jaime even know what dreams or goals were?” On birthdays…it’s no longer a day where I celebrate Jaime’s birthday, but rather a day that reminds me of all that’s been taken from him and the life he has missed out on” Yes, Yes! YES! The prospects of thirty or forty more years like this feel daunting. Really fucking daunting. SUPER YES! And the big one “ It may be a blessing in disguise. Jaime has the kind of autism where he doesn’t even know he has autism. My husband and I say that alllllll the time. After reading this book, and this MIRACLE, somehow the idea NOW that there are thousands of kids walking around in these “prisons of speech” (confirm that’s what Jaime called it), who are cognitively intact is both heartbreaking and fascinating. I, for one, am determined to bring this information to light as well to help as many as we possibly can.
KRISTI: Haters gonna hate, and similar to the criticism that Soma has gotten with her Rapid Prompting Method or RPM, there are those who think S2C is a parlor trick OR WORSE harmful. How do we know it isn’t? Spoiler alert, there’s a research study we can actually get behind NOT TO MENTION hundreds of spellers (if not more) chiming in on this issue. Right?
BREN: I have to say, I was surprised to read this. Dylan’s school is also ABA-based, and I can’t imagine having them turn on us! Side note, I fully intend on bringing this up soon by the way. I will have to let you know how it goes. Can we talk about the pushback you experienced from the “professionals” who became threatened by you wanting to spread the wealth when it came to S2C at Jamie’s school? With ⅓ of autistics either non or minimally speaking, why the hell not try it? IT’S JUST A LETTERBOARD. How threatening can it be?
KRISTI: You guys wrote Underestimated 7 years after the debut of Naioki’s The Reason I Jump, which at the time was viewed as a Rosetta Stone into the mind of nonspeakers. Until then parents and practitioners were NOT AWARE of the SHAME Naioki felt about the BURDEN he thought he was placing on caregivers. Jamie believed in you but what about others who feel trapped and defeated? What is it going to take to flip the script from a human rights standpoint?
KRISTI: When my almost 17-year-old J.R. received his diagnosis at age 3, I said to his then speech therapist “I know that he understands so much more than he lets on.” I was actually lying- I really had no idea what J.R knew BUT I was fishing for a compliment … she turned and said “OH NO, he understands SO MUCH LESS.” To this DAY I underestimate him BECAUSE as “scrappy” an autism mom I think I am, that statement scarred me. Where is the presumption of competence? Can these therapists not channel Tupac? “It’s time for us as a people to start makin’ some changes!” But how?
BRENDA: You included a chapter in the book about getting started with S2C. Hopefully my Dylan and I will be able to share our experience SOON. I have actually already been in touch with our local practitioner. Personally, I feel guarded as you were initially and after SO many years of trying every therapy, diet, and approach. I am still cautious on H O P E! Any words of advice for parents thinking about exploring S2C?
KRISTI: Jamie talks about a movie version of Underestimated. To answer his question, YES we are available- and by available we mean if there is no role for us BUT IF HE CHOOSES TO PLAY HIMSELF we’ll TOTALLY work his hair and makeup trailer. But MOST IMPORTANTLY: what songs can we expect the movie’s SOUNDTRACK to include?