Spotlight is on...RDI Part 4

Part one click here

Part two click here

Part three click here

Continuing the series on RDI from a Dads perspective...

One of the distinct differences between RDI and the other traditional ASD therapies is the concept of relationship over task. Traditional ABA (Applied Behavior Analysis) is known primarily as behavioral therapy. You change the behavior of an ASD child through tasks, skill development, etc. There is no real, strong attempt at focusing on a relationship. Remember Gabriel’s goal on saying hi to people? On the surface, it appears as if Gabriel is learning to interact with people. But what’s really happening is that he’s just learning a skill that CANNOT be generalized across all social mediums.


In RDI, one of the foundational principles is the focus on the relationship (or connection with the person acting as a the guide or therapist) in the context of a task or activity. If you stop and think about it, it sounds so simple: the common denominator for any child on the spectrum is social impairment. Rooted in this social impairment is the inability to understand social relationships, the social nuances, non-verbal cues, etc., etc., etc. If it sounds so simple, why aren’t other behavioral therapies working towards this?


I don’t know. Part of the reason may be due to the fact that therapies like ABA have a long, quantifiable, data-driven history...but from what I’ve read, success is spotty.


But how does one emphasize the relationship over the task in the context of an activity? In a word: spotlighting.


Huh? (That’s what I said when I started learning about it...)


Behavioral therapies strive to help a social impaired ASD child through discrete skill development. Once again, therein lies the problem: you cannot remediate some with ASD through the tasks or discrete skills. Think of all the skills an ASD child requires to simply navigate through an hour of lunch!


In RDI, parents (or therapists) are encouraged to come up with activities that emphasize cooperation, joint attention, and referencing (instinctive glancing at the other person to let him/her know that you’re there, and you’re paying attention). Throughout the activity, we’re equally encouraged (if not more so) to let the child know how much we’re enjoying doing the activity with him/her, how much fun it is, how cool it is to always do things together, etc. In other words, the activity or task takes a backseat to the relationship itself. In fact, it really doesn’t matter what the activity is. The spotlight is on the relationship...not the task or activity. When the guide (or therapist) is verbally emphasizes the enjoyment of the relationship, in RDI parlance, this is known as spotlighting. Simply saying “Good job” after a joint activity places the focus on the task and the skill developed through the task. Rather, the guides are encouraged to say, “I had so much fun with you!” or “I love doing (insert the name of the activity) together as a team!” puts the focus on the relationship and strengthens the connection an ASD child will have with the person rather than the skill.


The issue Edie and I have with a lot of the traditional behavioral therapy is the focus on the skill. Or discrete skill, to be exact. Coming up with novel activities complete with new toys becomes more important than relationship with the child him/herself. Logically think about this: an ASD child is already having struggles understanding and navigating through all the social nuances in this world...is a purely skill-based behavioral therapy going to address this child’s core deficits? Will a purely skill-based behavioral therapy enable the child to develop meaningful friendships?


Is there a place for skill-based behavioral therapy? I hesitantly say yes, but I think the vast majority (like 95%+) of the child’s remediation lies in RDI...the development of certain skills can develop in an RDI context. Edie likes to remind that even though it feels like we wasted 3 ½ years of the boys lives with the discrete skill-based behavioral therapy, some good did come out of it. RDI has just proven itself to be more effective and is potentially putting the boys on the path to full remediation.


Why Isn’t Everyone Doing RDI?


So, if RDI has proven itself to be so effective, why isn’t everyone doing it? I won’t get into all the political reasons, the controversies that I’ve read, the anti-RDI stances some ABA people have, etc., etc., etc. My comments here are purely from a parental perspective.


Note that this section of this entry is filled with nothing but Bun’s opinions and unsubstantiated theories based on my 4+ year ASD journey and observations. They don’t reflect anyone else’s opinions or biases in the RDI community.


1. Parents haven’t heard of RDI - the standard answer for therapy is ABA or another form of behavioral therapy. It’s what’s out there. It has history. It’s what health care providers give you.


2. It can be cost-prohibitive - if you haven’t heard of our financial ASD history...well, don’t ask! (j/k!) ASD is EXPENSIVE. After a financially tapped-out family kinda-sorta discovers RDI but discover that their medical insurance probably won’t cover it, it’s just too overwhelming to have to pony up another couple of thousands of dollars here and there. On top of that, each RDI coach charges a little differently, so the costs can vary. Either way, the bill can be pretty high, and again, for a family that’s more than likely struggling financially after being hit with all their therapy bills, why add something else on?


3. Parents think that ABA or their current services are enough - I’m probably going to catch a lot of flak for this one. First off, I’m grateful to be married to a woman who completely sells out for her kids and her family. I knew something was wrong, and I thought I was seeing some improvement, but when Edie said that our boys were becoming more autistic with their ABA therapy, I had a hard time believing her opinion. It wasn’t until I read how RDI (Gutstein, really) redefined ASD that I realized that, no...our services weren’t enough. In fact, they were troubling.


4. Parents have to put in the bulk of the work - look, ASD parents are beaten down. Emotionally, financially, physically, mentally wiped out. The emotional support for an ASD family is generally pretty thin. Few people get us, and we’re generally too prideful to ask for help and explain our situation (especially us Asian folk, like myself!). We’re trying to maintain our marriages, keep our houses reasonably clean, put food on the table, advocate for our kids at church, fight the medical system, fight the school system, fight the therapy agency, balance the family budgets, stay out of debt, work hard so we’re not getting our butts fired from taking time off to take care of the kids...and NOW you’re telling me that Mommy and the Daddy are the primary therapists (or guides) and need to do the bulk of the “therapy work”? I’m sorry, but “HELL TO THE NO!!!” (Yes, that was my initial reaction.) But as I thought about it, yes...Mommy and Daddy SHOULD be the ones doing the therapy. Why? Which two people should a child trust, build a connection with, and feel safe and secure around FIRST?


5. You need a good RDI coach - just like any professional relationship, the authority figure you decide to submit to needs to be a good, knowledgeable leader who is looking out for your family’s (kids and otherwise) best interest. We are grateful to have a good RDI coach who’s been down this road before and provides both RDI and life coaching (through the Scriptures!!). She knows how to spot things, correct things, provide good coaching, bluntly tell us when things are good (or bad), encourage us, and just do life with us. I’m not going to even get into what a bad coach might do.


There are probably a few other reasons which I might document later, but these are the first five that are on my list...


Next post...the milestones that caught my attention and convinced me that something was going on.

Proverbs 16:3, 1 Peter 2:24, Isaiah 53:5

The beginning...RDI part 3, and definitely following the raw theme!

Part 1 click here

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

What the?...and RDI, part 2(gonna be kinda raw again...)

 

Part 1 is here
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.

Proverbs 16:3

A Dads reflections

Im going to take the next few posts to celebrate Dads, ( since Fathers Day is coming up),
Each day I will post an article from a Dad, one that I feel is real, maybe somewhat raw, and definitely honest!   I love that Dads blog too!! :)

Cherry Picking...and RDI, part 1

The boys went cherry picking in Gilroy on Saturday. With me. Just me. Not with their mommy and daddy. Just daddy. It was Nathan/Gabriel and Daddy time.

Why am I making it out to be such a big deal? What’s the significance of it? Why am I even blogging about this?

Last year, when we took the two of them up to Brentwood, CA to pick cherries, we planned the event 2-3 weeks in advance, slipped the “leash backpacks” onto the little critters, begged our mommy-helper to come out for the morning, and then prayed like mad that the boys wouldn’t get lost, jump in front of an oncoming car in the dusty parking lot, or just get hurt because their ASD got the best of them.

Fast forward to last weekend. I announced to Edie that cherry picking season would be coming to an end very soon, and we needed to bring a bucketful of them home before the season ended. She agreed, but we were also in the process of doing some major spring cleaning at home (we’re the proverbial family that takes a lot of stuff in...especially ASD-related items...but never gets rid of them). How were we going to do everything that we wanted to do? Especially since we were going to be heading down to SoCal on Wednesday morning for my cousin’s wedding?

With a self-imposed “finish-cleaning” deadline of Tuesday, there was only one solution. Edie would have to stay home on Saturday morning while I took them cherry picking...if that was, in fact, still in the works. At first, I was just a tad-hesitant: last year’s cherry-picking exercise required significant help to get through the morning. Could I handle them by myself?

Since I was so bent on taking them cherry picking (actually, it’s part of their therapy...I’ll be explaining more later), I decided to take on the challenge of taking care of the kids by myself for about 4 hours on a hot, dry, cherry farm located in the garlic capital of the world.

Yes, the boys had fun, and we ended up pulling in 10 lbs or so of bing cherries, but the most amazing part of the experience was that I had fun just hanging out with them, laughing together, working together on the ladder, and enjoying their company. The two kids can be quite a riot when we’re just hanging out (“Daddy, if I pee on the tree, will that help the cherries grow bigger?”). For roughly 4 hours, I completely forgot that I had two special needs kiddos. And I’m certain that to all the other amateur cherry picking families, they had no clue the boys have ASD.

If you’re wondering how this is possible, I simply give you three letters: RDI. It stands for Relationship Development Intervention.

I’ve had numerous people inquire in detail about what we’ve been doing with the boys in the past 6 months, and since I was planning to share about it on the blogosphere, I figured I’d start now. Due to the involvement of this therapy (if you even want to call it that), it’ll take several entries to fully describe what Edie and I are doing.

I’ll start by saying this: Edie and I have tried all the other traditional ASD therapies. ABA, Sonrise, Floor Time, etc. You name it, we’ve probably tried it. Do they work? I don’t know...but when the statistics show that only roughly 21% of ASD kids who undergo those forms of therapies can lead a semi-functional and independent life, my question is, “Why isn’t the percentage higher?”

That’s the question that Dr. Steve Gutstein, the one who pioneered RDI, asked. He took it upon himself to go to the heart of the issue...to determine what the true differences between a neuro-typical child and an ASD child are. From his research, he broke down all the nuances of social relationships, how we acquire these skills as children growing up, and then developed practical and detailed steps in helping an ASD child get back on the normal developmental track so that he/she can be fully remediated.

Notice, I wrote “remediated”, not healed. That’s in large part because Gutstein doesn’t believe that ASD is a “disease”.

Why did we junk all the traditional ASD therapies? Well, I’m about to make a very strong and controversial statement: they were making the boys even more autistic. The strategies found in these traditional therapeutic systems were making kids live even more out of social scripts, and they were hyper-fixating on items even more so than when we got started. Something was wrong, so when Edie stumbled onto RDI through an acquaintance (whose daughter was on the spectrum, lost her medical diagnosis, is considered fully remediated, and is now an honor student at a highly competitive high school), she boldly proclaimed to me, “Bun, we found it. I think this is it.”

Believe me, I had my doubts...I’ve become cynical and skeptical over the past 4 years. But through a series of incidents, I became a believer.

I strongly believe that God is strongly involved in our process. We give Him credit for finding RDI. We believe that our cries to Him to not abandon us are currently being answered. Our prayers that we would get our children back are slowly being answered. There are still doubts...I can’t say that I’m this pillar of faith and strength. But there are days when I’m wowed by what’s going on.

We’ve got A LOT of work to do. But for the first time, there’s HOPE.

I mean, c’mon...I took the boys cherry picking all by myself?

Im Not broken, stop trying to fix me

*GPR is one of the key cornerstones of RDI - it is about the parent being the 'guide' to their child, as has been studied in neurotypical child development.*  GPR stands for Guided participation relationship- Read more about what this actually means here

 Im posting from a blog that was published today from a conversation on a facebook group that we all were involved in.  If you are interested in learning more about Relationship Development Intervention (RDI)  please join the RDI yahoo group at AutismRDI-subscribe@yahoogroups.com   If you also would like to join the facebook page please indicate to add you to facebook when joining the yahoo group.

So lets get started! Thanks Cecily for sharing your journey with us!

There's a fair amount of conversation out there in the world about how people with ASD (of various types) don't need 'fixing', that they're just differently wired, and that people just need to focus on their strengths, find what they're good at and enjoy the journey.......

She said: "I was very into the neurodiversity movement for a while and have always supported my son to be himself. BUT what I see with RDI and other relationship based therapies is that it's NOT about changing my son. It's about helping him be MORE of him.
I know he will always be who he is. He might become a more flexible version of himself. But he's going to keep his sweet nature and his funny quirky humor. He doesn't like being rigid either! He's miserable when he gets stuck on something. I can see it in his body and face. When I started pushing him gently toward more flexibility he started to relax. His creativity blossomed. '

Please click below to read the entire post
http://cecilypaterson.squarespace.com/autism/2013/4/1/does-autism-need-fixing.html

For more info on RDI please visit www.whatisrdi.blogspot.com

There is no such thing as a dumb question!

So why do we ask questions?  We ask questions because we want to know the answer… to something that we are trying to understand,  or we want to know the other persons perspective of whom we asked the question in the first place .  We do this, because we want to accumulate knowledge and learn.  I know for me,  Ill ask a question to save time too…like , Hey where are the keys?  That way I don’t have to spend time looking for them.  That is accumulating knowledge that someone else has for our own benefit.  Or, do you like the chicken or the fish?  I want to know the persons *perspective* that I am with to help me with my decision.

Enter Autism ( into the picture)… and questions can work abit differently.  Children with ASD can ask questions over and over again because of anxiety over a future event.   With my oldest son,  his use of questions was for a  purpose related to anxiety, but more complex.   He asked me questions all day because he wanted to feel competent that he knew where the conversation was going…in other words,  he removed all uncertainty in our conversation so that he could feel safe when he talked to me.  He asked me questions that he knew the answer too.  The interaction went something like this…  He would ask me a question, then I would try and answer him and if I did not answer him the exact way he was thinking I would,  he would then answer the question after I answered the question.  This of course meant that he knew the answer to the question before he asked me. Needless to say,  in no short time this drove me insane as I answered questions all day only to realize he already knew the answer.

I remember saying to his therapists ( This started around 6 years old )….MAKE HIM STOP! Lol  and we tried many different behavioral strategies.  It was not until he was around 9 that developmentally he was able to feel safe in the uncertainty of a *open ended conversation*.  We had been doing RDI with him for over a year at this point to help him get there.

A strategy that worked for us… I would ask him, Oh you know the answer to this!  Then I would say, so I love that you talk to me…anything you say ( decreases anxiety) and it sounds like you are trying to tell me something …Here is how you tell me something without asking a question ( and still knowing that the outcome is the same)  Then I told him how to reword the question into a *Mom, quess what* statement… Meaning to open it up like, quess what ( and then tell me instead of ask me).  This helped him to then be ok with my *answer* too, as he started to enjoy the back and forth and be resilient in not having to know the answer.  There are many different strategies hooked into this, this is just the beginning one.  However, within my own sons RDI program, I recognized at the same time we really needed to address this at its core too.  He was asking me questions because he so wanted to be successful with me in an interaction…and for him, asking the question and me answering was SUCCESS.  So who would not want to repeat success…right???  We do all the time…when we go out with a friend, etc and we have a great time,  one of the first things we say is..lets do that again!  We know though that it’s the relationship that we want to *do* again,  not the exact events and actions of the time spent. 

If your child is asking questions that he knows the answer too, try the strategy above.  In addition, here are a few beginning tips to work on a few of the core deficits of Autism- dynamic analysis, experience communication, and  Episodic memory.  Addressing competence and resilience from the ground up is crucial to help your child understand thoroughly the WHY of communcation.

Working on Dynamic Analysis-   Our kids need help knowing the important part of the interaction.  Instead of paying attention to the *answer*, focus more on the relationship ( I love when we talk to each other or I love your smile!)  Your child hears your thoughts that you are paying attention to more than just their question.  At first there may be some anxiety over you not answering them right away, but you are giving them the opportunity to process your perspective ( you have their attention as they wait for what they *want* to hear).  You can follow this up with commenting to them a great way to tell *Mom* something is hey Mom…_____________,

Working on Experience sharing communication-  When your child asks you a question that they know the answer too, use non verbals to answer them and then pair the non verbal communication with a strategic pace of any comment you make ( for Dynamic analysis). Strategic pace is pausing at the moment that is important …to highlight and say to your child…here…this is important to pay attention too!

Working on Episodic memory- look for opportunities when helping your child feel secure in his communication to reflect on past experiences of the subject that he is asking about.  Recalling past events, reviewing success and reminiscing about joint shared experiences will help your child’s motivation to want to continue to build a conversation with you,  even when he is unsure of the outcome ( an open ended conversation).  This is a great time to talk about your emotions and /or your childs emotions as a reflective process.  This helps your child see that communication is a reflective process built on experiences,  and is truly a back and forth interaction where the uncertainty is an interesting aspect of a conversation and not something to produce anxiety.

 

For more on RDI www.whatisrdi.blogspot.com

 

 

ese children need to constantly know what is coming up to feel secure. Questioning becomes a way of making the world more clear, consistent, and predictable.

2. Some children experience anticipatory anxiety (strong excitement about what is coming up) and will continually question as a way of coping with anticipation.

3. Some children who want attention will repeatedly ask the same question as a way of interacting, getting attention. This occurs especially if they either do not know how to get attention in other more appropriate ways, or if the intensity of reaction they get from questioning is much stronger then what they get for appropriately initiating interaction.

ese children need to constantly know what is coming up to feel secure. Questioning becomes a way of making the world more clear, consistent, and predictable.

2. Some children experience anticipatory anxiety (strong excitement about what is coming up) and will continually question as a way of coping with anticipation.

3. Some children who want attention will repeatedly ask the same question as a way of interacting, getting attention. This occurs especially if they either do not know how to get attention in other more appropriate ways, or if the intensity of reaction they get from questioning is much stronger then what they get for appropriately initiating interaction.

There are a few behavioral techniques that have worked successfully for me with several children I have worked with in the past:

1. Answering the child once when they repeat a question, then telling them that is the last time they will answer. From then on in, the parent gives no verbal response. They may shake their head no, but not give a verbal answer. In all cases, the parent’s verbal answer is what reinforces the child to ask again. This is discussed with the child ahead of time, so he knows the parent will not verbally answer anymore. This would probably cause increased problems for Robert.

2. For some children answering only once is not enough, so you might try answering no more than three times. Then with each answer you count them off. When you hit three that is it.

3. Some children will inhibit the response if you repeat the question to them. So the second time they ask the question, “Are we going to McDonalds for dinner?”, you say “Bobby, are we going to McDonalds for dinner?” They will usually give you the answer, and stop repeating the question.

4. For an older teen, who could read and write, we would answer the repeated question one time, then have him write down the answer and carry it with him. If he asked again, the parent would refer him to his note. Another technique that has worked is writing the answer down on a note board and referring the child to that board. This worked well, since the verbal response is what reinforces the repeated questioning.

5. This next technique is for children who find it real difficult to stop, so we gradually decrease the behavior as the child becomes more controlled in refraining from questioning. It is more complex but has worked well.

a. The parent keeps track, for a couple of days, of how frequently the child repeatedly questions during the day (let’s say an average of six times a day) and how many repetitions of a question the child averages (let’s say five repetitions of a question). Then from there we write a plan to start gradually decreasing those frequencies (the number of repetitions of each question, and the number of times a day repeated questioning occurs.

b. To decrease the number of repetitions child gives per question, if the average frequency is five, we would start by answering the child up to four times. We would tell the child that we can only give up to four responses. Each time the child repeated the question, the parent responds “this is number one” and answers the question. Then each response starts with “this in number 2, 3 or 4” and answers the question. At the forth time the parent reminds the child they cannot answer it again. If the child stops asking, the parent will praise the child, “Sally, you really please mommy by not questioning after I told you no”. If the child asked again, the parent shakes her head no, and gives the child the manual sign for “no”. The parent does not give another “verbal answer” to the question, regardless of how intense the child gets. When the child gets used to asking only up to four times, then we decrease to three times. We gradually decrease to twice and only once.

c. Now, we want to reward the child for stopping at the predetermined number of repetitions, as well as decrease the number of repeated questionings throughout the day. In this example, the child averages repeated questioning six times a day. We start at that number. We make a laminated chart with six boxes on it. We also post a picture of a few rewards that the child can earn next to the board. For each time the child engages in repeated questioning, when he doesn’t stop at four, the parent puts a cross, or frown face, in one of the boxes (with an erasable marker). The parent tells the child that if there is at least one box left by a certain time of the evening, the child will get their choice of one of the rewards. So, in this case, if the child has four or less times when he doesn’t stop repeated questioning, he will earn a reward. This way, we start with were the child is at, teach him how to earn the reward, and then slowly started reducing the number of boxes (chances) he has to earn the reward. So for step b above, when the child asks for the fifth time, the mother shakes her head no, gives manual sign for “no”, and walks over and crosses out one of the squares. If the child has at least one box left by the evening, he gets his choice of reward. If he has all five boxes crossed off, parent shows him, tells him he cannot get the reward tonight, but he can try again tomorrow.

Another way you can work this, is using the same style board, give the child a star in each box each time he stops the questioning at the predetermined amount without going over. So, if the child stops at four repetitions, the parent praises him, and gives him a star to put on his chart. Once he earns the right number of stars he earns a reward.

6. Another technique is to answer the child once or twice. Then the next time the child asks, you tell him you will not answer that question again, and ask him a simple question to redirect him. This way you are redirecting him to talk about something else. If he doesn’t answer, but asks his question instead, you continue to ignore his question and continue to ask him your question until he answers. If he answers your question and goes back to his, you simply ask another question about the issue you want to talk about and keep focusing on what you are asking him. Eventually they learn to take the redirection and converse on what you want to talk about.

Remember almost all of the techniques focuses on 1) stop rewarding his repeated questioning with “verbal answers” and 2) focusing (rewarding) him for responding the way you want him to do.

ese children need to constantly know what is coming up to feel secure. Questioning becomes a way of making the world more clear, consistent, and predictable.

2. Some children experience anticipatory anxiety (strong excitement about what is coming up) and will continually question as a way of coping with anticipation.

3. Some children who want attention will repeatedly ask the same question as a way of interacting, getting attention. This occurs especially if they either do not know how to get attention in other more appropriate ways, or if the intensity of reaction they get from questioning is much stronger then what they get for appropriately initiating interaction.

There are a few behavioral techniques that have worked successfully for me with several children I have worked with in the past:

1. Answering the child once when they repeat a question, then telling them that is the last time they will answer. From then on in, the parent gives no verbal response. They may shake their head no, but not give a verbal answer. In all cases, the parent’s verbal answer is what reinforces the child to ask again. This is discussed with the child ahead of time, so he knows the parent will not verbally answer anymore. This would probably cause increased problems for Robert.

2. For some children answering only once is not enough, so you might try answering no more than three times. Then with each answer you count them off. When you hit three that is it.

3. Some children will inhibit the response if you repeat the question to them. So the second time they ask the question, “Are we going to McDonalds for dinner?”, you say “Bobby, are we going to McDonalds for dinner?” They will usually give you the answer, and stop repeating the question.

4. For an older teen, who could read and write, we would answer the repeated question one time, then have him write down the answer and carry it with him. If he asked again, the parent would refer him to his note. Another technique that has worked is writing the answer down on a note board and referring the child to that board. This worked well, since the verbal response is what reinforces the repeated questioning.

5. This next technique is for children who find it real difficult to stop, so we gradually decrease the behavior as the child becomes more controlled in refraining from questioning. It is more complex but has worked well.

a. The parent keeps track, for a couple of days, of how frequently the child repeatedly questions during the day (let’s say an average of six times a day) and how many repetitions of a question the child averages (let’s say five repetitions of a question). Then from there we write a plan to start gradually decreasing those frequencies (the number of repetitions of each question, and the number of times a day repeated questioning occurs.

b. To decrease the number of repetitions child gives per question, if the average frequency is five, we would start by answering the child up to four times. We would tell the child that we can only give up to four responses. Each time the child repeated the question, the parent responds “this is number one” and answers the question. Then each response starts with “this in number 2, 3 or 4” and answers the question. At the forth time the parent reminds the child they cannot answer it again. If the child stops asking, the parent will praise the child, “Sally, you really please mommy by not questioning after I told you no”. If the child asked again, the parent shakes her head no, and gives the child the manual sign for “no”. The parent does not give another “verbal answer” to the question, regardless of how intense the child gets. When the child gets used to asking only up to four times, then we decrease to three times. We gradually decrease to twice and only once.

c. Now, we want to reward the child for stopping at the predetermined number of repetitions, as well as decrease the number of repeated questionings throughout the day. In this example, the child averages repeated questioning six times a day. We start at that number. We make a laminated chart with six boxes on it. We also post a picture of a few rewards that the child can earn next to the board. For each time the child engages in repeated questioning, when he doesn’t stop at four, the parent puts a cross, or frown face, in one of the boxes (with an erasable marker). The parent tells the child that if there is at least one box left by a certain time of the evening, the child will get their choice of one of the rewards. So, in this case, if the child has four or less times when he doesn’t stop repeated questioning, he will earn a reward. This way, we start with were the child is at, teach him how to earn the reward, and then slowly started reducing the number of boxes (chances) he has to earn the reward. So for step b above, when the child asks for the fifth time, the mother shakes her head no, gives manual sign for “no”, and walks over and crosses out one of the squares. If the child has at least one box left by the evening, he gets his choice of reward. If he has all five boxes crossed off, parent shows him, tells him he cannot get the reward tonight, but he can try again tomorrow.

Another way you can work this, is using the same style board, give the child a star in each box each time he stops the questioning at the predetermined amount without going over. So, if the child stops at four repetitions, the parent praises him, and gives him a star to put on his chart. Once he earns the right number of stars he earns a reward.

6. Another technique is to answer the child once or twice. Then the next time the child asks, you tell him you will not answer that question again, and ask him a simple question to redirect him. This way you are redirecting him to talk about something else. If he doesn’t answer, but asks his question instead, you continue to ignore his question and continue to ask him your question until he answers. If he answers your question and goes back to his, you simply ask another question about the issue you want to talk about and keep focusing on what you are asking him. Eventually they learn to take the redirection and converse on what you want to talk about.

Remember almost all of the techniques focuses on 1) stop rewarding his repeated questioning with “verbal answers” and 2) focusing (rewarding) him for responding the way you want him to do.

ese children need to constantly know what is coming up to feel secure. Questioning becomes a way of making the world more clear, consistent, and predictable.

2. Some children experience anticipatory anxiety (strong excitement about what is coming up) and will continually question as a way of coping with anticipation.

3. Some children who want attention will repeatedly ask the same question as a way of interacting, getting attention. This occurs especially if they either do not know how to get attention in other more appropriate ways, or if the intensity of reaction they get from questioning is much stronger then what they get for appropriately initiating interaction.

There are a few behavioral techniques that have worked successfully for me with several children I have worked with in the past:

1. Answering the child once when they repeat a question, then telling them that is the last time they will answer. From then on in, the parent gives no verbal response. They may shake their head no, but not give a verbal answer. In all cases, the parent’s verbal answer is what reinforces the child to ask again. This is discussed with the child ahead of time, so he knows the parent will not verbally answer anymore. This would probably cause increased problems for Robert.

2. For some children answering only once is not enough, so you might try answering no more than three times. Then with each answer you count them off. When you hit three that is it.

3. Some children will inhibit the response if you repeat the question to them. So the second time they ask the question, “Are we going to McDonalds for dinner?”, you say “Bobby, are we going to McDonalds for dinner?” They will usually give you the answer, and stop repeating the question.

4. For an older teen, who could read and write, we would answer the repeated question one time, then have him write down the answer and carry it with him. If he asked again, the parent would refer him to his note. Another technique that has worked is writing the answer down on a note board and referring the child to that board. This worked well, since the verbal response is what reinforces the repeated questioning.

5. This next technique is for children who find it real difficult to stop, so we gradually decrease the behavior as the child becomes more controlled in refraining from questioning. It is more complex but has worked well.

a. The parent keeps track, for a couple of days, of how frequently the child repeatedly questions during the day (let’s say an average of six times a day) and how many repetitions of a question the child averages (let’s say five repetitions of a question). Then from there we write a plan to start gradually decreasing those frequencies (the number of repetitions of each question, and the number of times a day repeated questioning occurs.

b. To decrease the number of repetitions child gives per question, if the average frequency is five, we would start by answering the child up to four times. We would tell the child that we can only give up to four responses. Each time the child repeated the question, the parent responds “this is number one” and answers the question. Then each response starts with “this in number 2, 3 or 4” and answers the question. At the forth time the parent reminds the child they cannot answer it again. If the child stops asking, the parent will praise the child, “Sally, you really please mommy by not questioning after I told you no”. If the child asked again, the parent shakes her head no, and gives the child the manual sign for “no”. The parent does not give another “verbal answer” to the question, regardless of how intense the child gets. When the child gets used to asking only up to four times, then we decrease to three times. We gradually decrease to twice and only once.

c. Now, we want to reward the child for stopping at the predetermined number of repetitions, as well as decrease the number of repeated questionings throughout the day. In this example, the child averages repeated questioning six times a day. We start at that number. We make a laminated chart with six boxes on it. We also post a picture of a few rewards that the child can earn next to the board. For each time the child engages in repeated questioning, when he doesn’t stop at four, the parent puts a cross, or frown face, in one of the boxes (with an erasable marker). The parent tells the child that if there is at least one box left by a certain time of the evening, the child will get their choice of one of the rewards. So, in this case, if the child has four or less times when he doesn’t stop repeated questioning, he will earn a reward. This way, we start with were the child is at, teach him how to earn the reward, and then slowly started reducing the number of boxes (chances) he has to earn the reward. So for step b above, when the child asks for the fifth time, the mother shakes her head no, gives manual sign for “no”, and walks over and crosses out one of the squares. If the child has at least one box left by the evening, he gets his choice of reward. If he has all five boxes crossed off, parent shows him, tells him he cannot get the reward tonight, but he can try again tomorrow.

Another way you can work this, is using the same style board, give the child a star in each box each time he stops the questioning at the predetermined amount without going over. So, if the child stops at four repetitions, the parent praises him, and gives him a star to put on his chart. Once he earns the right number of stars he earns a reward.

6. Another technique is to answer the child once or twice. Then the next time the child asks, you tell him you will not answer that question again, and ask him a simple question to redirect him. This way you are redirecting him to talk about something else. If he doesn’t answer, but asks his question instead, you continue to ignore his question and continue to ask him your question until he answers. If he answers your question and goes back to his, you simply ask another question about the issue you want to talk about and keep focusing on what you are asking him. Eventually they learn to take the redirection and converse on what you want to talk about.

Remember almost all of the techniques focuses on 1) stop rewarding his repeated questioning with “verbal answers” and 2) focusing (rewarding) him for responding the way you want him to do.

 

Independence day = INTER dependence day

Independence day= “Inter”dependence Day

As we commemorate the 236th anniversary of our Declaration of Independence, taking a look back at  our history helps remind us of our successes,  and where we need growth.

Today is a day to celebrate independence…to celebrate those who fight for our continued independence, and to remember those who gave the ultimate sacrifice so that we can be here, free, writing whatever we wish to write.  While it is easy to take these freedoms for granted in the day to day, today is a special day to give a shout out…as Americans, to say THANKS to all of you who fight for freedom,  in any arena!

The older I get,  the more I realize the war on maintaining freedom extends to many different areas of our lives,  both collectively and individually.  While acknowledge the big guns of freedom, I also wanted to take my own personal thoughts on a battle very real to parents every day, the freedoms for our children…with Autism.

A few weeks ago, in New Jersey I stood before Governor Christie asking for that freedom..the freedom of choice for parents to choose which intervention they wanted for their child and have the same funding options for their choice.  This freedom was crucial for my own 2 boys as our family remediated Autism in their lives.  I was fortunate to be able to show the logic of funding to my school district years ago,  which of course they are reaping the benefit now as my son is in High school, with friends, and will live an independent life ( when I was told he would not).

But we all have heard the professionals tell us what our kids will not be able to do.  We as parents have a choice to let their words define our babies future, or to let those words spur us on to make sure that is not the future for our children!

This is the same spirit, that independence is built on.  The declaration of independence…. to pursue hope, on their terms.

The lessons of interdependence leads the way for crucial understanding of true dependence.

The basic thought that guides these specific means of national recovery is not narrowly nationalistic. It is the insistence, as a first consideration, upon the interdependence of the various elements in all parts of the United States – a recognition of the old and permanently important manifestation of the American spirit of the pioneer.

U.S. President Franklin D. Roosevelt, First Inaugural Address, 1932

...for many of our white brothers, as evidenced by their presence here today, have come to realize that their destiny is tied up with our destiny. And they have come to realize that their freedom is inextricably bound to our freedom.

Martin Luther King Jr., I have a dream,

This is a huge topic for me because with my own two boys, about 7 years ago I had come to a crossroads.  My then 8 year old could do a bunch of things by himself, as we worked for years to get him to that point…but missed the whole point of sharing the experience and reactions of anyone around him.  He successful went through a program to teach him how to act, but not understanding WHY! I kept saying, if he could just talk, it would be ok,  then he did but it was only for his needs.  Then if he could have a friend, it would be ok,  but he couldn’t, because he did not *get* the social nuances and minute by minute steps that it took to have that back and forth relationships. For my younger son, who was 4 at the time, I was able to learn from that, and turn the tides for him , and his older brother to concentrate more on interdependence FIRST, to have that TrUE sense of independence, emerge right before my eyes. To help them from the bottom up… Our kids with Autism, blossom with taking their need for  static “independence” ( leave me in my own world so that I am safe and nothing changes) and changing that to concentrate on the relationship of interdependence.  This is where in fact I had to start with my own kids.  This quote, speaks volumes for long term thinking…interdependence is necessary to success in marriage, family and organized realty ( LIFE that does not go as planned day to day)

Independent thinking alone is not suited to interdependent reality. Independent people who do not have the maturity to think and act interdependently may be good individual producers, but they won't be good leaders or team players. They're not coming from the paradigm of interdependence necessary to succeed in marriage, family, or organizational reality.

Stephen Covey, The Seven Habits of Highly Effective People, 1989

Think of your own child with Autism.  Do you find yourself working on skills and behaviors,  yet still there is that missing piece and you wonder if there isn’t a more pro active way to address the goals? There is…through guiding our kids through the developmental stages of  Interdependence… it is worth fighting for in our children and will bring them to an understanding of the experience process in relationships.  My youngest son, diagnosed at 18 months, severe infantile Autism,  understands reactions, perceptions and perspectives, as well as independence in the exciting things he can do as an 11 year old.  It is a complete, balanced package that typical children already have in place…so we cant skip the core importance of INTER dependence, otherwise we are on that hamster wheel in trying to fix this behavior or that one.  Interdependence allows our kids to have that intruistic motivation that relationships are rooted in beginning at birth!!

So Happy Independence day…rooted in interdependence J

Kathy Darrow

Click here for my younger sons before and after- http://www.youtube.com/watch?v=jakn6_RqHB8&feature=plcp

Check out my other blog at www.whatisrdi.blogspot.com