Sunday, April 1, 2007

ABA-NET and Shadows

ABA - NET by Ashley Morgan.

A contribution piece published in James Ball's Early Intervention book,
Jan'08. This is a longer, draft version


Our son, Leo, was diagnosed at two with PDD-NOS. He received early intervention services through our local Zero to Three program. About a year after the diagnosis, we realized preschool age was quickly approaching. Our exposure to other special needs children, particularly those with Autism, was very limited, yet I knew as Leo’s mom, I needed to take a look at where he
might go next, since once he turned three, his early intervention services would be provided through our public school system. I began my search for a school, thinking Leo would be placed in a special education program that would address his needs. To my surprise, the programs I looked at seemed grossly wrong for my son. I may not have had a whole lot of experience with Autism at that point, but I knew this like I know my own name. I realized then and there choices for school and a program were not going to be easy.

What was I going to do? The public school’s special ed program had no other children like Leo in it. He could handle himself in a regular environment, and had mastered basic skills. His behaviors were manageable and he was ahead academically. At three, Leo had progressed to the point that he had some language, but the social skills gap between him and his peers was widening at an alarming rate. I knew it was only time until his social deficits were noticeable to everyone. But, where did he belong?

Time was running out; I had to make a decision. Should I place him in the special ed school where he clearly didn’t belong? Or, should I keep my spot at the local regular preschool? I had signed him up when he was just one year old, before his diagnosis. I finally went with my gut, which told me the regular preschool was a far better fit (although challenging), than the special ed
program where he’s probably get away with murder and stim all day.

My big lesson? Even though my son was “high functioning”, he still needed a formal intensive program. No matter where your child falls on the spectrum, all ASD children need and deserve this.

I continued to research programs and therapies, trying to find a good match for Leo. To my surprise, I eventually found myself back right where I began, with ABA. Early on into this journey into early intervention and autism, my Zero to Three team told me ABA was a very bad approach, totally wrong for Leo. They scared me with horrible stories, and after hearing what they said, I trusted their judgment. I now realize what they were describing was just bad ABA. Crappy ABA seems to dominate many environments, I’m sorry to say! And, parents need to be aware of this. As the saying goes, “There’s more bad ABA than good ABA, and everyone is busy.”

I believed my team advisors and to their credit, they were partially correct. DTT (discrete trial teaching) wasn’t the correct intervention method to address the goals and objectives exquisitely laid out by my Yale evaluation professionals. But that didn’t mean ABA in general was wrong for Leo. I investigated further and through conversations with other ASD parents, finally
found the right ABA delivery method for Leo, one that was built on two important premises: 1) detailed, individualized and intensive goals and objectives, and 2) the right therapy for each one. For Leo, the right intervention turned out to be ABA-NET. ABA-NET is a form of ABA where intervention is delivered in the natural environment – our family room, at school and day care. It also efficiently addresses higher-level social skills like perspective taking, Theory Of Mind, and Executive Functioning – the missing piece we were looking for in a program for Leo.

At home, Leo’s one-to-one ABA therapy sessions were not at a table, but held mostly in our family room, living room, and sometimes outside. Leo “led” the play sessions with his “grown-up friend” (his therapist). Just like DTT, a Clinical Supervisor designed individualized ABA goals and objectives for him. The difference was how it was implemented (NET).

At the beginning of each session, the therapist reviewed Leo’s list of programs and any previous session notes, and began the session by asking Leo what he’d like to do. After discussing various options, the therapist would incorporate a goal into play.

For example, Leo asked to play the board game Shoots and Ladders. While setting up the game, the therapist asked Leo to guess which player piece she’d choose. She and Leo would have a discussion about how Leo could figure out which token she may pick. They’d played the game many times, so the therapist used that prior knowledge to demonstrate how history can be helpful. Does the therapist choose the same piece each time? Why or why not? Leo was also asked to recall her favorite color, as every therapist has tastes and preferences just like Leo does. This conversation worked on the program goal Prediction.

It was common that during the game, other spontaneous opportunities for learning something that applied to one of Leo’s goals could arise. For instance, during the game Leo’s baby sister woke up from her nap, crying. Leo and the therapist heard her on the monitor. Taking advantage of the opportunity, the therapist asked Leo how he knew she was awake. He had no idea. They discussed ways Leo could know this information. Could he see her? No. Could he feel her? No. Oh, he could hear her. That was it! This conversation worked on the program goal Sensory Perspective Taking.

After a game is over, they may play again or move onto another activity. With goals and objectives in mind, the ABA-NET therapist continues to weave learning into natural activities and experiences. Throughout the session, the therapist redirected Leo away from stims and kept him on task, utilizing positive reinforcement. Leo worked hard, but he had a lot of fun during his
sessions too. ABA is all about positive reinforcement! Snacks, sensory input, and a change of scenery may be considered. Depending on the day and duration of the session, Leo practiced some or all of his objectives. At the end of a session, the therapist filled out data sheets in paragraph-like form, describing what they did rather than reporting raw data, although some raw data was taken for stims, redirections, etc.

ABA-NET has the advantage of allowing the child some control (reinforcing in and of itself) and activities/materials chosen by the child tend to be more motivating. NET also makes it easier to utilize and/or introduce naturally occurring reinforcers (for instance, to play a game just because it's fun), which allows behaviors to generalize and persevere.

When not doing ABA-NET at home, one of Leo’s ABA therapists took the role of a “shadow” at school and day care. She facilitated only when needed, remaining in the background as much as possible. The therapist facilitated social interactions, provided Leo with additional information, and gave feedback and prompting when necessary, all with Leo’s goals and objectives in mind.

Taking the example of the program goal Prediction again, the shadow may ask Leo what a classmate may do first when they go out for recess. Will his friend Jack run straight for the swings like he did the last three days?

Leo had the ability to function in a normal setting, so this is where therapy resided, integrated into his and our lives at school and within regular home life (although we modified it quite a bit to reduce stimming and increase regular play and interests). Working in the real world, at school, at home with real games and teaching within the fluid structure of daily life events that come up unexpectedly made sense to all of us, since this is where Leo struggled. Working on the front lines with him streamlined his learning. There was no transition from “therapy” to “life.” It all meshed together. Leo flew through his programs because of this delivery style.

A typical therapy day for Leo might look something like this:

8:30 – 9am OT at elementary school
9:30 – 12n preschool with shadow the entire time (2.5 hours)
Lunch
1 - 4pm – day care setting with shadow (3 hours)
4:15 – 6:15 pm – 2 hours one-to-one ABA-NET at home (carryover issues
from school/day care, work on current programs to games and play chosen by
Leo)
Dinner and evening routine. Programs incorporated when possible.

We continued with Speech, OT, and PT. Some of the speech goals were moved within the ABA program. The ABA program drove all other interventions; it was the glue that pulled all components together. They even worked on OT and PT goals during their sessions.

ABA-NET would be difficult for a therapist or parent who is used to ABA table sessions. It’s quite different. DTT is a very structured, data-driven teaching format, and it can be challenging for adults to adopt the mindset and alter their teaching style to manipulate the environment in order for the child to think he’s in control. The child may be given several choices of what to do or play, all embedded with skills to practice! I think ABA-NET is much easier to learn than DTT, RDI, and other approaches, but everyone is different. For this reason I was always nervous about integrating a new therapist into the mix. With DTTany new therapist can just look at the data and notes, and get to work. With ABA-NET it takes a while to break in a new therapist. They have to spend time with the child, learn his patterns, his strengths and weaknesses. Only time reveals a child’s subtle tricks to wiggle out of doing something he doesn’t like or want to do, or to notice how stims impact learning. My Leo can be a great manipulator and new therapists don’t recognize his patterns right away!

A therapist has to be very seasoned in working in general with children the age of their client. Therapists with experience in regular education settings often have an advantage, since regular education interaction is the goal, if not the place where a child will eventually be acquiring skills. It can be very hard to find good therapists who have these qualifications.

As with most therapies, parents who integrate therapy into their regular life have more success than those who remain “just the parent” and leave therapy up to the therapists. Just being the parent didn’t work for me. I had an internal alarm bell that rang inside my head for about four years, continually pushing me to read anything I could get my hands on and observe most of Leo’s sessions so I could copy their teaching strategies and work them into regular life. Taking the example of the Prediction program, while waiting in line at the drive-thru for lunch, I may ask "So Leo, what do you think Mommy will order for herself? What kinds of foods have you seen Mommy eat in the past? What did Mommy order the last time we came here?" Right before feeding the cat, I may ask "So Leo, what will happen when I shake the cat food container? What will Sydney do when I show her the hairbrush? Will she frown and start to cry? Or will she smile?" I believe this is the key to getting the most out of any intervention, giving success the biggest chance of settling in, and keeping the family involved and motivated.

It wasn’t easy getting on board with the number of hours any intensive therapy requires of parents and the entire family. Leo’s ABA program began at 10 hours per week; at most it topped off around 30 hours per week. Generally it was at least 20 hours each week, and lasted over several years. Once he entered the public school system, shadow time at the preschool and day care took up the majority of the hours of Leo’s therapy. When he wasn’t in that setting, however, we spent all of our time integrating learning into regular life. We knew his programs inside and out. If I didn’t, we’d research it until we did. It didn’t make sense to allow him to stim or play inappropriately when he wasn’t in therapy. We wanted him to learn new, appropriate skills and behaviors; we thought it would be too confusing for him, two sets of behavior rules: one while in therapy and another for all the other times. I spent all of my extra time learning how to teach Leo the skills he was working on, and planning for the next set of programs. Our goal was to not waste any moment of waking time. After all, learning happens everywhere! And, the therapy was a big financial burden for us. But, so were other therapies we had in place. I have come to
believe that what you do for your child, within your own family circumstances, is a personal decision. Some families are willing to sacrifice more than others. There’s no right or wrong, just parents doing their best with what they have.

Some parents have family support systems who jump on board when a child is diagnosed and early intensive intervention begins. With our family, no one was involved except myself, my husband and Leo’s younger sister. Unbeknownst to her, she was instrumental to Leo understanding others’ perspectives, a concept that is so challenging for our children. Our dog even played a role too. Today as I write this, I still marvel at Leo comments. He is telling me our dog is watching the neighbor’s new dog. “His tail is straight up and he isn’t moving at all, looking down the hill at the neighbor’s dog, mom.” Funny how Theory of
Mind takes hold in our kids. Even notices it in the dog.

Even though intensive ABA therapy can be challenging at times, ABA-NET gave me new insights into myself and my relationships with my family and friends; I understand human behavior on a whole different level now. It was agood match with our personalities as parents overall. This therapy was nothing but a positive influence on the quality of all our lives.

After years of living the life of a square peg, we adapted to NET pretty quickly. Looking back, I now realize the early years, when we were trying to make other styles fit our family, were actually the harder part. Everything we were supposed to do for Leo seemed opposite to my parental instinct. I coined the phrase, “Counter-Intuitive Parenting” to describe to new parents the feeling they get during those first few months post diagnosis. Watching your child’s first several therapy sessions can break your heart. It’s all so foreign, so opposite to the way we feel learning should naturally occur. If you find yourself in that situation, take some time and learn about ABA-NET. Rethinking “therapy” as life-integrated learning does wonders to smooth this transition for everyone, especially the child.

I am happy to report we eventually stopped therapy because Leo has mastered all the concepts he needed in order to learn from his environment. We continue to monitor him, and if he requires assistance in the future, we’ll step in and find instruction to address his needs. If I could do it all over again, the only thing I’d change would be to begin ABA-NET earlier, at two of course!

My Leo today is not the same boy as the child who existed before we began ABA-NET. Then, Leo didn’t know how to play with other children or with other adults. He had chronic anxiety and wasn’t a happy child. If left to his own devices, he would stim about 80% of his day. His language was limited to pointing and making simple requests. About three years later, Leo no longer
met the diagnostic criteria for PDD-NOS, and today, he no longer requires any therapy. He leads the life of a typical third grader, with no label, no modifications or help of any kind. He doesn’t have an IEP, and his current teacher hasn’t even an inkling of what he’s been through. He is today judged as an individual, not a label. His third grade teacher describes him as a confident child that other children seek as a friend. He is always willing to contribute, even when the topic may be challenging. He gives it his best shot. Although he is not the best test taker, he is a solid B student at the top of his class on all subjects. Best of all, he is an active, involved part of our family and the special relationships that bind us together. He makes us all crack up regularly at home, his sister thinks he is the sweetest big brother ever, and to us, he’s our beloved son. I wouldn’t change a thing. Life is good.



Ashley Morgan is a full-time mom working part-time as a teacher. She also
maintains an Autism website focused on social skills and mainstreaming.
Ashley's goal is to "pay it forward" by supporting newly diagnosed parents, or
parents at a crossroads. She welcomes comments from readers, and can be
reached at www.hiddenrecovery.com