Guiding our children HOW to grow...and how some classrooms miss the mark

We know what children need to grow and learn, right?  The environment should be happy, nurturing, loving, and filled with many opportunities to learn and explore.  The people in a child’s world should be warm, caring, loving, and supportive, right?  If you walk into any preschool or elementary level classroom, there are lots of toys, colors, positive images, and opportunities to explore. 

What happens when you walk into the majority of “ABA” classrooms?

There is very little on the walls…”children get over-stimulated and can’t focus” they are not encouraged to explore, they are reinforced to ignore.

If a child turns toward the sound of someone entering the room, they are immediately corrected by having their face physically turned back toward the teacher.

If a child jumps out of their seat with curiosity and excitement about the book a teacher is reading, they are “punished” for getting up and corrected.

They must EARN their play time…and are most often left alone during that time, because they “earned” that time.  Think about that!  One of the most important parts of healthy development for every child is relationship development through play.  Many programs NEVER have that between a “therapist” and the child they are working with.  They don’t play!  This means there is never imagination, exploration, working together and enjoying each other!  Children with autism need to earn the right to play.   When they do finally earn that privilege, no one interacts with them.  Most times their play is cut short because their “therapist” says, “they don’t really play, they only stim.”  Back to the table for more trials…

When most children are encouraged to look at books, a child with autism must earn their right to see the same book.

When they want to play with their blocks in a different way than what they are taught…they are not encouraged to try and see what happens.  They are typically redirected to the script they were taught at the table.

The very essentials for positive healthy development are ripped away in this environment.  Their basic needs to establish trust, emotion, curiosity, and confidence are no longer present.

Are we teaching them to be autistic? We can control their behavior by using behavior modification. 

We can control what they know and how they use what they know.  They are only taught what we CHOOSE to teach them.  Is this really what society thinks is best for children with autism?  We take a science which has been proven through lab testing and hundreds of research articles which show we can control behavior…and we turned it into a therapy.   Is it really therapeutic? What is therapeutic about it?  

Are we encouraging relationships, independence, growth, exploration, learning how to learn?  Are we forcing children to do what we think they should be doing?  Shouldn’t we be teaching, nurturing, loving, and guiding them on how to grow?

-Stephanie Hicks, M. S., BCaBA                                              stephaniehicks193@gmail.com

Working on the child's skills from the INSIDE out

Welcome...Guest blogger, Colleague and Friend Stephanie.  She is willing to say the hard things when it comes to helping our kids...truly helping our kids!!  Its these types of conversations,  which may be hard to hear for some,  crucial in moving forward to help students become independent mindful, reflective Adults.

I attended yet another IEP meeting today trying to put together a plan for a student.  My little guy, let’s call him Henry, has ADHD and was having a difficult time learning successfully in the classroom.  The behavior consultant brought forth her plethora of behavior plans which she had attempted to use with Henry.  She then presented the graphs (insert beams of light glowing from beneath the graph as she spoke).  The first behavior plan didn’t work because Henry ripped up the self-monitoring check sheet.  The second one didn’t work because Henry said, “I don’t like this, I’m not doing it” and proceeded to crumple up that version of a self-monitoring check sheet.  The third behavior plan which included yet another self- monitoring check list which Henry was supposed to draw happy and sad faces then give it to his mother also failed because he never showed them to his mother.  Unbelievable, right?  I mean the part where the consultant kept trying to use the plan over and over again saying it failed because Henry didn’t like it.  He didn’t like it….wait, a child doesn’t want to report on how he had a hard time at school, highlight those moments, then share them with his parent….this is all crazy talk!

The consultant finally shared a graph which showed the target behavior decreasing with the use of her new magic plan.  In this plan, the teachers and the other students were to give Henry a big “X” and say “Waaa Waaa” whenever he engaged in the target behavior.  It didn’t matter that Henry was not yet able to choose a more appropriate behavior or that he had an even more elaborate plan to actually teach him what he should be doing.  So now Henry doesn’t want to record his own downfalls and share them, so we are going to just point them out for him and publicly humiliate him.  The consultant’s graphs showed his behaviors decreased immensely!  It was a miracle plan and everyone was so excited.  So what behavior was he engaged in that his graphs were so stunning?  Oh that’s right….sitting with his head down on the desk.  Not participating.  Not feeling good about himself. 

Shame on you behavior consulant!!!!  Any behaviorist….a true behaviorist could look at a child’s posture, eye gazes, movements, and listen to their silence and know nurturing, positive, development is not occurring. 

I took data  the same as the districts consultant.  She saw a student not engaged in target behaviors and that was a good thing for her.  What she missed was seeing the child engaged in low self-esteem, low confidence behaviors.  So ashamed that he put his head down on his desk and completely disengaged from the rest of the class.   Is the graph a positive one?  Does the behavior actually work for the reasons we want it to?  Did this consultant have any background in child development or education?  Sadly, no she did not.  She has a degree in Applied Behavior Analysis (ABA) and a certificate as a BCBA.  Was her training helping her to focus on developing a well-balanced child?  Did she know anything about nurturing a child to help them feel confident in the skills they do well?  How about guiding and supporting him through difficult things?  Nope.  Her only goal was to be able to show a downward trend.

When I told her I didn’t need to see anymore of her graphs and we didn’t need to waste anymore time reviewing them, she simply said, “the data is how I make decisions about his program.”  Really?  The data?  So pieces of paper that come to you on a weekly basis are the only way you help to positively impact this child’s development and education?  Hmm…because I kind of think you need to meet a child, know a child, watch a child and most importantly, know what you’re looking for!!!!

Everyone around that table looked to the almighty consultant who had a plan which showed a decrease in behavior. Because you see, a child with a behavior problem no longer falls under the umbrella of “Child.”  They become a plan with black and white data on a graph which shows how we got them to do what we wanted them to do. 

I know all of you behavior analyst out there will say the plan was unethical and she was a “bad” example.  I have been to hundreds of IEPs and advocated for kids and their families.  I have yet to find another behavior consultant who wants to work on a child’s skills from the inside out.  They want to work on teaching words, flashcards, non-functional imitation skills, non-functional receptive commands…never developing trust and guidance to the point of mastery.  Analyzing milestones is never done.  Analyzing skills is done all the time.  Why is skill development more important than milestone development?  How can we be so blind to think we are doing a good thing for kids to skip over the most precious stages of development?  Does it sound like a good plan to teach them to do things because we said so and if they do, they will get something they want?  Think about it, how many years of that type of therapy and then we turn and say….well he is still not social.  He only talks if you talk to him.  He doesn’t have his own personal goals and is prompt dependent.  Don’t even get me started on prompt dependency, that is a blog for another time but I will leave you with this little diddy….prompt dependency requires two people.  The student and the teacher, guess who causes prompt dependency?  So the next time you want to blame a student for prompt dependency just remember, “it takes two to tango.”

Wouldn’t it be amazing if we looked at every child who has autism or any child with a behavior problem and saw them as a child who is still developing?  How about running back to the pediatricians and child development experts and say, “where do we go from here?” Behavior consultants are not the answser.  Especially the ones who have zero experience teaching or studying stages of development.  I get it, everyone has worked long and hard on these studies and assessments and yes, we can show improvement in skills for children. 

Dare I ask has anyone ever considered what we are NOT teaching?

 

Stephanie Hicks M.S., BCaBA

PANDAS part 2

Part one 

Mid January 2014 I discovered a group for treating PANDAS with Essential OILS.  I read a few success stories and decided to start with the two oils that were talked about.  These oils are Capaiba Oil   and Ocotea Oil.
I went out and purchased Manuka honey and off I went.  To start, I gave my son 3 drops of Capaibo and 2 drops of Ocotea oil mixed with 1/2 teaspoon Manuka honey.  The first time I gave this to him all tics stopped for 4 hours.  I gave it to him twice a day until the tics were coming back sooner.  That took about 3 days...and I increased the drops to 5-6 drops of Capaibo and 3 Ocotea twice a day.  My sons tics and brain "fog" was definitely improving.   I added Kirkmans Bio film defense ( every day) along with Enhansa three times a week and Citrus pectin once a day in the evening ( to clean up the gut).  This came from information from a protocol from Dr Usman on Bio film.  Please note I did not do everything listed, just introduced a few key components...click on Dr Usman's name for a full list.   Adding these elements only helped support my sons healing and within 4 weeks after starting with first the oils, and adding the three additional items, my son no longer has tics and is back to himself.  I stopped giving the oils orally and am now layering Oils on his feet every few days for continued healing and incorporating other oils!!   Thankfully, if strep does become an issue again and the cycle begins I'm fully armed with other oils that deal with Strep.

I share this because I have had a few friends contact me after hearing about my son, recalling their own child's illness and a sudden onset of OCD/Tics.  Essentially one day their child changed!  This is not just for children with Autism.  If anything I said resonates with you and you would like to talk to me more about Essential oils  I welcome you to email me at rdi4autism@gmail.com ... Every child is different but I know in the 6 months that I was dealing with a PANDAS flare, I was desperate for possibilities to help!  This may be one of those helps for you too.  I am not a doctor and suggest that you always involve a doctor when treating PANDAS... but Parent to Parent I am thrilled to be able to find something that helped my son and wanted to share my success with using the above anti-inflammatory oils along with treating biofilm.  I did this under the supervision of my sons pediatrician ...  which she could offer me little help other then antiobiotic and medication.  She wrote down everything I did...  :)  Please comment below or email me if you would like me to add you to the group on facebook to find out more!!

Update-  I have had a few requests on how to get these oils...I dont sell them...but you can buy them two ways ( retail)...or become a distributor ( wholesale saving almost 25 percent)... you can just click on this link to buy them yourself ...  Hope that helps!  https://www.youngliving.com/signup/?sponsorid=1630319&enrollerid=1630319

I never really knew what PANDAS looked like until.....Part 1

I realized my son was showing symptoms!  Switching gears for this post to talk a bit about a co occurring condition with Autism for affects many of our children.
PANDAS...  stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.  I knew about PANDAS from the Autism Conferences I had attended, but never  looked deeper.

With my younger son,  literally one day ( around late fall of 2012) he was a completely different child.  He started making these gurgling clearing throat noises which gradually got worse as a few days progressed.  At the same time my daughter told me her throat hurt.  I took her to the doctor for a throat check and she had strep throat.  I had them check my son even though he said his throat did not hurt.  He was negative.

The noises were getting more profound so I continued to explore the internet.   He was diagnosed with Autism at 18 months, and was now 11, and had overcome many of the obstacles of Autism.  The child I was told would never speak,  carries on deep experience sharing conversations with me.  He is flexible and is curious, and we typically have a blast wherever we go because of the hard work we did with RDI ( Relationship Development Intervention)   for 5 years starting at age 4.

But now, not only was I seeing different behaviors,  I noticed he started tuning out,  something I had not seen since years before as we were working through developmental stages.  I stumbled across a PANDAS site and read how the culture does not always show positive for children and that the strep is hiding out.  I did something that I don't recommend but I knew I wanted to see what was happening.  I started giving my son my daughters antibiotic. Thankfully there was enough...  and...within 3 days, after watching my son become another child, was back to his old self.  It was quite scary as I now knew there was something huge happening.

All was well,  but the more I read, the more I knew, another strep infection... would come on strong.  About 6 months later, my daughter complained of a sore throat again...and within a day, my son started having vocal tics again.  Sigh...  so this time...  armed with information I was going to tell my pediatrician what had happened and what I believe is going on.  Unfortunately, all he heard was I gave him someone else's medicine...so once I got him to move past that...he told me there was no such thing as PANDAS....and I should put my son on medication for tourettes that he could prescribe.  I asked him how that was getting to the core of my sons issue, to which he again told me,  there is no such thing as PANDAS.  The conversation continued ...and ended with a script for a lab for blood work to check to determine if he had strep.  Meanwhile so I could show them how he has consistently showed up as negative to strep, we took my son in for s throat check.  This check came out negative, however the doctor I saw ( there are a few doctors in the practice) took one look at my son and said,  he looks like he has PANDAS.  Uhh  THANK YOU!!!  Started him on Antibiotics and again cleared up.  That was spring ..so the fall of 2013 ( approximately 8 months ago) strep entered the house again because my son started ticking.  My daughter did not have strep but sudden drastic ticking from my son meant he was infected.  Another round of antibiotics  but this time they improved but did not go completely away.  Not loving the fact that my son had antibiotic more in his lifetime in the past 18 months then ever ( he was  barely sick as a child)  I wanted to just see if it would go away on its own.  The tics were few but as two months went on,  I noticed he was becoming less like himself.  Back to the doctor I go,  but this time the antibiotic did not do anything.  Clearly we discovered that 1.  He needed a stronger antibiotic and 2  he may need it for a longer duration.  While we were figuring this out his auto immune response went into full swing, and it was to the point where he was ticing every few minutes ( or worse) and the antibiotic was not helping.  The infection was clear...but the antibiotic was not helping his auto immune response.  This lovely time was happening in November-December 2013.  I started exploring doctors who specialize in PANDAS under my pediatricians recommendations...and contacted a few.  At the same time I came across many referenced to Essential oils. ( I was introduced by a friend in December before we went to Disney world)...but when I came back I started more detailed research on Essential oils.  We were in January and my sons tics were still profound...every few minutes like a barking.  He had been on antibiotic since December so 6 weeks of antibiotic with only slight improvement.  My pediatrician explained to me that his Auto immune response was in activated so the only thing she could offer me was certain medication for tourette's or blood pressure that showed helpful with tics...and that I should see a neurologist.   Part two will be posted tomorrow :)

Why do children with Autism Wander?

Why do children with Autism Wander?

by April Choulat

 

A new study found that 49% of children with autism wander/elope from safe settings and 62% of families with children who elope were prevented from attending/enjoying activities outside the home due to fear of wandering. Half of parents of children who elope report they were never given advice about elopement from professionals. (Pediatrics, October 2012)

Why do children with autism wander? One of the hallmarks of autism is a limited ability to self-regulate using social referencing. Social referencing develops in very young children and is one way that babies and toddlers learn to process the environment. When presented with uncertainty or potential danger, the toddler can look to mom or dad to gain more information and decide what to do next. This is a cognitive process and depends on the ability to recognize uncertainty and process nonverbal communication from the parent. The vast majority of children with autism and Asperger's Syndrome do not use social referencing (or if they do, very rarely or in a rudimentary way).

A famous experiment of social referencing was done by Joseph Campos, and is shown here:

http://www.youtube.com/watch?v=p6cqNhHrMJA

How can we prevent wandering? In addition to normal precautions such as door and window locks and alarms, fencing and tracking devices (which some children need), it IS possible to teach children with autism how to self-regulate via the parent-child relationship.

The RDI Program offers parents a systematic curriculum which aims to restore the emotional feedback communication system between the child with autism and his or her parent. Not only is this ability to use social referencing necessary for safety reasons, but it is also a critical foundation to real-world success in managing stress and adapting to change as well as making and keeping friends (the real kind that don't require prompting in highly structured therapeutic settings).

Another component to wandering, which may be more of a challenge with some children than others, is the issue of perception of danger. A child who has very poor body organization and awareness of space may have a limited ability to accurately perceive and process danger. Children who often climb to the highest point or who bump into walls and people may fit into this category. In these cases parents can learn ways to support their child's recognition of danger and increase their sense of wariness. Without wariness a child with autism is prone to wander off from caregivers, not tethered by the invisible thread of emotional connection that social referencing provides.

As a consultant, countless parents I have worked with using the RDI protocol have reported significant improvements in their stress level as a result of their child learning to reference and regulate with them. Everyday activities like going to the grocery store or walking on a sidewalk no longer trigger panic for parents who previously worried about their child's safety in such situations. It is my hope that one day all parents will know that their autistic child can learn to connect with them on such a foundational level, and perhaps prevent some of the tragic accidents we hear about in the news; accidents that happen all because the child with autism does not experience a sense of wariness and/or disconnection from their primary caregiver.

The above article can be found here-

http://www.rdiconnect.com/blogs/rdi-culture/archive/2013/02/20/why-do-children-with-autism-wander.aspx

This question was just posted to the Autism Guide Facebook page by a friend

With the recent tragic stories of several more drownings of children with autism who wandered away, I wonder how many parents feel that the RDI program helped their child stop wandering. I know it helped in the case of my son.

And here are some replies

Mine first…as this did help my son and as I work with families I make sure this is a high priority goal if their child wanders!

 same here there were many times that Jesse was down the street, especially at night and one time I remember I found him because of his light up sneakers.... the next block over, stimming away in a yard! We dont live far from water....Once we worked on co reg and social referencing, he never wandered again! He is now the kid who goes outside, mows the lawn , bikes, etc. I do think wandering can be helped tremendously by the set of goals in RDI!!!

Another reply!
I hadn't thought about that. My son had almost graduated from his ABA program before we switched to RDI. At the start he didn't reference me at all and after a year of RDI he referenced and coordinated himself with me. I wish all kids had access to RDI!

This mom says-  I had a runner. Now i have a kid I can send down the street on his bike, knowing that he'll wait for me safely to cross the road with him. He can go to the shop on his own and buy bananas or milk or whatever. He's never run away from school.

 

 

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