When Edie issued that bold proclamation that she had “found it”, I sneered, “Whatever...talk to the hand, please.”
We had spent thousands and thousands of dollars on the boys’ therapy (I actually added up the numbers one night, and I banged my head on the dinner table in frustration and anger). Direct and indirect. At one point, I considered going down to 2 meals a day to save money just so the boys could have an extra therapy hour or two. Our marriage was filled with tension as Edie and I snipped away at each other. We had almost no community...our church situation was an absolute mess. I was getting angry at the smallest things, and when my shingles hit, I was ordered by my doctor to take it easy. Edie and I were looking at a lifetime of no hope. Zero. Zilch. We were cognizant of this one terrifying statistic: 85% of all marriages with a special needs child don’t make it. How the (bleep) were we going to be in that 15%? And now, Edie was telling me there was this new therapy, this new method, that was not only going to save the boys’ lives, but give us back our marriage as well?
In the words of the local sage, “yeah, right.”
Everything I had read about ASD had convinced me that all we could do with the boys is get them to a place where they could be kinda functional. Where they could live that semi-independent life. Where maybe, they could use their ASD skill of hyper-fixation to focus on one specific task and then, again, maybe...they could have a job and a kinda-normal life. All while having tapped-out parents who continued to live with little hope. Sorry to say, but all along, Edie and I had a hard time accepting this kind of destiny for our kids. Really...what the hell kind of outlook on life is that?!
With all due respect to a lot of well-meaning believers, but we hated it when people told us to grin and bear it. We hated it hearing things like, “God alone will give you the strength to go on. Acceptance of your fate is the one of the first steps in finally moving along in your journey. Surrender this to God. This is the burden that you have to carry.”
Are you cringing yet? Edie and I simply could not accept the fact that the boys were destined to some life where they would be wards of the state. Call me crazy, but we were both hell-bent on exhausting ourselves until we found a solution. I pray EVERY NIGHT out of 1 Peter 2:24 and Isaiah 53:5...essentially, it’s the “because of Your wounds, we are healed”. Even when I felt like crap, I forced myself to include that in our nightly family prayer.
But...after everything failed, I had started to give up hope. 3+ years and just simple gains in their development can make a guy feel like run down and burned out. However, as I read some of the material Edie was going over, I started to think, hmmm, this RDI thing is WAAAAY different than everything else we’ve tried.
I’m no expert on RDI, so my explanations may seem elementary, and they may not do the remediation process justice, but I’ll give it a shot.
First off, every child with developmental or mental disorders is measured from the DSM-IV (known as the Diagnostic and Statistical Manual of Mental Disorders, 4th edition/version). Published by the American Psychiatric Association, it’s the official rubric that determines a child’s developmental core deficits.
For years, ASD (Autism Spectrum Disorder) has been called a social disorder, a developmental delay, a neurological disorder, etc. The DSM-IV details a child’s deficits and then categorizes a child on the spectrum as low-functioning, MR, classical autism, moderately autistic, PDD-NOS, high-functioning, Aspergers, etc. RDI seeks to reinterpret ASD and redefine it. In short, there are no “categories” or “levels” or ASD. Every ASD child has common core deficits (as outlined by the DSM-IV). The difference is in the presentation of those core deficits. RDI considers ASD to me a neurodevelopmental disorder. In other words, an ASD child, whatever the reason may be, simply has a part of the brain that hasn’t developed properly. That part of the brain generally has to do with social behaviors, relationships, etc. For those familiar with ASD, those deficits are the hallmarks of autism.
At first, I was thinking “bull----”, this can’t be. Dr. Gutstein was blowing smoke...or smoking something. How can it be this simple? As I started reading his research and considered how my kids behaved, I realized, dang...this guy is onto something. Everything he says about ASD and correcting those obstacles at their core...that just might work with Nathan and Gabriel!
Before I continue, I need to add this. RDI is controversial. It’s got only maybe about 15-20 years of data, much of it anecdotal. This is compared to all the other traditional therapies...those have years and years of data. As an engineer who thrives on data/information, I found it telling that again, only 21% of ASD kids undergoing traditional therapy were able to lead semi-normal/functional lives. Contrast that number to this: in one of Gutstein’s initial studies, they took 16 ASD kids (with different “severities” on the spectrum) around the ages of 3-5 years old and employed RDI techniques and strategies to their therapy. By 2nd grade, 13 out of the original 16 were mainstreamed in school without an aide and had effectively lost their diagnosis. The other 3 made substantial gains in their social and relational development.
Why hasn’t this caught on? In the ASD community, Gutstein is a polarizing figure. People complain that he’s in it for the money and not entirely altruistic. Um, yeah, he is. How else is he supposed to make money for a living? They find him arrogant, and they hate the fact that he’s proselytizing his methods over the “tried and true” therapies. Don’t get me wrong, I believe that the traditional therapy systems have some significant benefits, but there are limits to what they can do for a child. But, in my opinion, I think it boils down to money. Many of the health care providers are locked into the traditional therapies because they’re allegedly measurable, quantifiable, and data-driven. And they’re safe and accepted in the ASD world because as data-driven therapies, they can “measure” a child’s progress up against the DSM-IV manual. If you were the CEO of an HMO, why wouldn’t you align yourself with something safe rather than a “system” that comes from a polarizing figure? Your HMO’s risk of getting sued drops dramatically.
So, what is the difference between RDI and a traditional therapy like ABA? Why is the Lau family drinking the RDI Kool-Aid?
RDI focuses on a concept known as dynamic intelligence. In RDI parlance, an ASD child has static intelligence. If you think of a basic conversation with someone, you’re always adapting to that person. He says something, you respond based on what your friend said, and so on and so forth. Your language is rich and full of description. Each conversation is unique given all the variables you encounter each day with people. Your conversation is flexible and does not follow a set script. That’s a very basic example of dynamic intelligence and activity.
ASD kids are static because they can only focus on one thing at a time. They can’t adapt. And when they’re trying to engage in a conversation, they’re stuck on the same topics again and again and again. Hyper-fixation is known as perserveration. Nathan and Gabriel perserverate on cars. For awhile, they could ONLY talk about cars. They had no flexibility to their thought, words, actions...everything centered around cars. Hence, their static world was cars. Their social scripts centered around cars.
Our concern with ABA (the therapy currently employed by our therapy agency, ESBA) is that they were teaching our boys how to be more static. That’s why we tell people that the boys’ therapy made them more autistic. ESBA developed measurable developmental goals for the boys and utilized different strategies to help the boys hit those goals. In their therapy sessions, the therapists would track how successful the boys were at achieving those goals. If they were successful 80%-90% of the time, they would considered it a point of “mastery”, and the goals would be updated/re-written.
It sounds awesome on paper, but there’s only one problem (well, many, but here’s the kicker): ALL of the goals are static goals designed to build in scripts and discrete skills into the boys with absolutely no thought of teaching them how to be adaptable or flexible in a social situation. In other words, no dynamic intelligence!
Case in point: one of Gabriel’s early goals was that he would be able to say “hi” when someone else said “hi” to him. I know, it sounds so elementary, but he didn’t even know how to greet people when he was 4 years old. They got him to say “hi”, but get this: one day, someone greeted Gabriel with a “Hey Gabriel! What’s up?!” My poor little kiddo was completely stuck and had no idea what to do. Teaching him “hi” was in fact, a static goal. Consider all the ways we greet each other! He couldn’t infer from the person who said, “what’s up” that it was a greeting. He only knew how to respond to a “Hi”. Isn’t that sad??? A dynamic goal would have been “Gabriel would know how to reciprocate a greeting and initiate a greeting when appropriate.” Perhaps it sounds vague, but it’s meant to be dynamic.
If you could amortize ALL the goals these boys were receiving over time, you would quickly get the idea that ABA was doing nothing but building a social and relational database in the boys so that they could someone function in this world. The “hope” was that they would be able to start to generalize based on that database. Again, another problem: my kids were SOOOO static, that generalization was darn near impossible. This database was going to be finite, not infinite. I’m sorry, but no matter how hard you try, you can’t intentionally build an infinite social/relational database in a static child to handle the rigors of life’s social component.
While Edie and I were folding our laundry tonight, we were talking about the weekend’s events (and yes, I was going on and on about picking cherries with the boys!). We’ve noticed how much more tired the boys are at the end of the day because we’re doing so many RDI activities with them. The funny thing is that it can be kinda subtle...you wouldn’t even know I was “RDI-ing” you unless I told you. But to the boys, it’s stretching them; it’s extremely hard work for them. Six months into the remediation process, the progress is now undeniable. While RDI has been the framework for the boys’ expedited development, the final credit needs to go to God. And that’s something that Edie and I are not ashamed at all about sharing.
Tomorrow’s post: the RDI incident that both shook me up and convinced me that this was the right thing to do. Why more people aren’t doing RDI. And the different elements of social/relational development that RDI got us started on at the very beginning.
For those who missed it, where can we find Part 1?ReplyDelete
Here is part 1 along with all the others!ReplyDelete