Part two click here
My eyes were bloodshot and my face completely tear-stained. I had been crying for only a couple of minutes, but they were some of the most intense tears in my life. It’s not often that anger and joy mingle so well together. Five minutes earlier, I had heard one of the most profound things about autism and parenting.
An ASD diagnosis is a punch in the gut to the parent on the receiving end of the news. It’s horrible. It’s awful. It was hard not to blame myself for the boys’ diagnosis. It was hard not to blame God! But the punch to the gut feels even harder when you realize that all the time and money you spend on your children amounted to almost nothing because it feels like you were doing everything WRONG. That’s how Edie and I felt when we realized that all these discrete behavioral therapies were possibly doing more harm to the boys than good. And when we finished reading some of Gutstein’s stuff, we realized that we didn’t understand ASD as much as we thought we had.
The short version of the “intro to RDI” story begins in July, 2012. Edie discovered RDI through an acquaintance. We read up on it. Sounded good. We saw a video of an RDI coach and “former ASD mom” based in NJ who was giving a presentation on ASD and RDI and at the end of the presentation, she left her contact information. (Click here to watch the video) This coach has 4 kids (3 boys, 1 girl). Two of her sons were on the spectrum. Now remediated (her oldest was voted Homecoming Prince, plays WR on the football team, and was named student of the month this past school year).. Edie was intrigued. Edie called her up while we were hanging out in Lake Tahoe on Labor Day Weekend, 2012. Discovered that we had much in common. Discovered over the course of a few more conversations that she’s a STRONG believer. We connected with KD on both a professional level (trust me, she’s good...she understands ASD and the core deficits) and a personal level because she had been down this road before with two of her kids. After a few phone calls, we flew her out here to get formal one-on-one coaching some real RDI stuff. By now, we were at the end of October, 2012.
Our first assignment as parents was to slow our speech down and to get everyone who worked with the boys to slow their speech down as well. One of the biggest hang-ups with ASD kids is the inability to process speech at the rate of a neuro-typical child. ASD kids have a tendency to “ignore” people. But they’re not really ignoring you...that part of their brain that processes speech is underdeveloped, hence the slow reaction time.
For 3+ years, we had a goal with Gabriel to increase his eye contact. You’ve heard of that so-called “blank autistic stare” where the kid just looks through you like you’re a ghost? That was soooo my child. For months on end, we just couldn’t get Gabriel to make eye contact with us on a consistent basis. Every strategy we tried was an EPIC FAIL.
Until one night around time frame of KD’s visit. It was time for the boys to go take a shower, and I spoke very, very slowly to Gabriel: “Gabriel, you’re so dirty, you could use a shower” or something to that effect. Gabriel stopped what he was doing and stared deep into my eyes. But not with that awkward ASD stare; it was a “the wheels are churning in my brain” stare. For the first time in my life, my little Gabriel was staring at me and connecting with me visually. It was like he was telling me, “Whoa, Daddy...I think I know what you want...” In a matter of 10 seconds, we completely blew through the static eye contact goal. I was so stunned, I sat in my chair for a good ten minutes trying to process that moment while Edie whisked both boys upstairs for their showers. Even to this day, when I think about that one moment in time, I get tingles.
The other assignment: use declarative sentences in our speech at least 80% of the time.
HUH?!
When ASD parents are working...actually, BATTLING, with their kids, we resort to angry questions and commands. We don’t know how else to get through to them (like it’s really their fault), so we get heated, raise our voices, and start shouting commands: “Gabriel, dang it...! BRUSH YOUR TEETH!! Nathan, HAVE YOU HAD YOUR MILK YET? DRINK IT! For crying out loud, why can’t you follow through with what I ask you TO DO?!!”
Guess what’s happening? The ASD parent unknowingly, is modeling speech patterns to their ASD child. The poor kid has an underdeveloped brain...he/she can’t tell the difference when it comes to speech patterns. If you stop and think about it, a NORMAL conversation is usually made up of declarative sentences. With declarative statements, a person on the receiving end of the declaration is instinctively inferring information from the conversation. Interrogatives (questions) and imperatives (commands) are only used for the purposes of CLARIFICATION. They are NOT the foundation of normal speech patterns nor should they make up the majority of a conversation.
Nathan and Gabriel were speaking mostly in interrogatives and imperatives because that was how we were talking to them! They would ask questions in which they already they knew the answers to. They would tell us what to do and how to do it because that’s how we spoke to them.
At first, I was skeptical. So what, I told KD. They’ll pick up on speech patterns eventually, right?
Being the good engineer that I am, I ran a “test program” on Gabriel to see. I did a simple little activity with him (I actually don’t remember what it was...I think it had to do with cards), and when he was successful, I put my right hand up and exclaimed, “Gabriel, my hand is up!” (declarative statement). He looked at me, looked around, grabbed my hand, grabbed my fingers...he did everything but give me a high-five...the response that I was looking for. After about 15 seconds, he grabbed my hand, stared into my eyes, and stated very slowly, “Daddy, I don’t know what you want me to do.”
By now, I was internally freaking out. I somehow managed to teach how to do a high-five (don’t remember how), and then I immediately turned to KD and asked, “What the heck just happened?”
Her response caught me off guard: “Bun, that activity you did with Gabriel is a microcosm of his life. He’s been so dependent on commands and prompts that when you stuck your hand up asking for a high-five, and you didn’t prompt him, he couldn’t infer from the situation what you wanted. His whole life has been dependent on people telling him what to do or guiding him through questions.”
I politely excused myself immediately thereafter, walked up to my room, closed the door, and began bawling.
We really have been doing this wrong all this time. I’ve spent untold thousands of dollars and hours on stuff that really made my kids more autistic. I’VE BEEN SCREWING MY KIDS’ LIVES UP THE LAST 3 ½ YEARS.
But mixed in with those angry tears were tears of joy and relief. Because in those few minutes with Gabriel, it literally was like God, the Father...the REAL Father was telling me, “Bun...you are now going to get the tools to parent your boys appropriately in such a way that it’s time for you and Edie to get out of this messy hell.”
Like I said, it’s odd when anger and joy and mingled together in a bunch of salty tears.
Proverbs 16:3
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