DIR/Floortime: Becoming More Matthew by Joshua Feder, MD

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EDUCATION & THERAPIES
BY JOSHUA D. FEDER, MD
Joshua D. Feder, MD is a child and family psychiatrist specializing in the treatment of developmental and learning disorders. He is an assistant clinical professor in the Department of Psychiatry at University of California, San Diego, School of Medicine, is on the faculty of the Interdisciplinary Council on Developmental and Learning Disorders (ICDL), and was recently named a Distinguished Fellow in the American Psychiatric Association. DIR/Floortime is designed for use with anyone at any age and with any level of developmental, learning, or communication challenges. Much of DIR/Floortime is open source, including free guidelines for setting up a DIR/Floortime program and hundreds of hours of free podcasts accessible through ICDL.com, Floortime. org, and circlestretch.blogspot. com.
atthew is finishing high school. He doesn’t want to make a big deal of it. But we get emails about class rings and Grad Night, and I think about all the people who helped make this happen. I listed most of them in his senior ad, the one with the picture of the class ring he helped me design for him, but which he doesn’t want. His progress has been astounding. And his success is from Floortime. Floortime is the everyday name of the Developmental Individual-Differences Relationship-Based (DIR) intervention model of understanding and intervening to help people with developmental and learning disorders. It evolved from the work of Drs. Stanley Greenspan and Serena Wieder, and it has been around in various forms since about the mid-1970s. DIR is a “developmental” approach, which means that it looks at where the child is along the social-emotional growth curve. Recent versions of the Bayley Scales incorporate Greenspan’s SocialEmotional Growth Curve. DIR is individualized in that it looks at the child’s specific processing and learning capacities, such as sensory, motor planning, receptive and expressive
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communication (gestural as well as vocal), visual spatial abilities, and especially the capacity to have her own ideas, make a plan about them, follow a sequence in that plan, and adapt the plan when it inevitably does not unfold as expected. DIR is relationship-based. This means that the intervention is carried out through interactions with the child, ones that follow the child’s initial lead and then build on the interaction with the child to create interactions together that are always new, never predictable, but fold in the things we want the child to learn about communicating, thinking, and relating. The key concept is “affect” -- we all need to care about things to motivate
Emotion drives the person, and DIR/Floortime captures threads of emotion and weaves them into a tapestry that can support development.
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us to learn. Emotion drives the person, and DIR/Floortime captures threads of emotion and weaves them into a tapestry that can support development. DIR/ Floortime creates emotional engagement, strengthening and expanding the connection between the child and those around her. This requires that we know the individual profile of the child and work with that profile, compensating for those challenges at times, but also stretching the child’s capacities to broaden and strengthen her tolerance of the environment and ability to act in the environment. It also requires that we understand caregivers and families to support them in their efforts to help a child. Matt’s is a common story: first child born to engineer-artist types, a cranky baby who speaks a FULL SENTENCE at nine-months (“I see the bird.”) and then shuts down, joylessly lining things up. Favorite photos comforted us: lying on top of Mom, Leslie, and smiling at her in the shade of the carob tree; grinning at the camera while we “fix” the mower; looking amused as a puppy tugs his diaper. Existential irony. I’ve worked in this field since college, when I volunteered to do caretaking and behavioral intervention with congenital Rubella victims (blind, deaf, autistic), and later a painful stint teaching autistic adults with behavioral therapy. I quit after an understaffed outing to a hot, polluted beach. Then came medical school, residency and, at the time of Matthew’s diagnosis, fellowship in child psychiatry, during which I’d seen the famous pediatrician Dr. T. Berry Brazelton encourage the mother of a very challenged child to have hope, while I looked on cynically and shook my head. So, we go to the developmental pediatrician with our first concerns and I am quick to blurt: “Well, he’s not autistic.” The pediatrician, a rival of my boss Bernie Lee, who was concerned that Bernie overcalls the diagnosis, concurs with us. Leslie is less than reassured, and I remain fixed in denial. Bernie is Chief of Child Psychiatry at Tripler Army Medical Center. He has a sharp eye, and he’s been training me for 18 months at this point. This does nothing
ISSUE 30 2009
to help me see my own child objectively. Bernie reviews videotape we shot a year earlier of Matt and another little girl, Christina, both at one-year-old, in an Ainsworth attachment protocol. Christina is clingy; Matt is on the aloof side, but, looking at the tape in retrospect, Matt is more than aloof. He has very little emotion at all. Bernie sees it, calls it, holds us. At 23-months Matthew has a diagnosis of “PDD-NOS” a.k.a. autism. Leslie is 8.5 months pregnant with our second and final child. She is perplexed, stunned, and forlorn. My mind implodes. Matthew reacts to our distress, biting his hands in frustration. We are alarmed: Will the new baby have it? Leslie loses amniotic fluid and is induced, producing Madeline, Matthew’s best gift ever. Soon afterward, Bernie gives me an article on Floortime. I don’t understand what he is trying to tell me. The doctor in the article is in Washington, D.C., and we expect orders to Japan. Matt’s IQ tests in the 70-80s range, and two prominent visiting consultants recommend institutionalization: “If you keep him home, he will be like a pet.” We keep him. My detailer and friend, Lindsay Paden, arranges to let us stay in Hawaii for a year to sort things out. Matthew has multiple therapists and special preschool with behavioral programming, which makes perfect sense to me. He makes progress: he follows commands and learns a few words. But he is stuck on Thomas the Tank Engine. Madeline crawls after him; he is annoyed and says, “Moddie go a Mama!” Cute. And a full sentence -- but we don’t understand how important this is. I search the medical literature for answers. I look again at that article on Floortime: Matthew’s brush-off to Madeline -- a real response -- means hope. Lindsay arranges orders to D.C. We consult with Stanley Greenspan, MD, originator of DIR/Floortime. My new boss, Sid Blair, is a prince and allows me to do “whatever-we-need” to help Matthew. Whatever-we-need is full bore Floortime coached by Dr. Serena Wieder. She plays, helps us to play, and guides peer play with Matthew. Matt attends intense DIR/Affect-Based Language Curriculum (ABLC) speech therapy with Diane Lewis, gains better control of his body
in play-based DIR occupational therapy, has a run of Tomatis, vision consults, due process with the school district, and medication. The subtext is endless (diets, dogs, dolphins…), but the core of the intervention is DIR/Floortime. CHAMPUS insurance fails us. I moonlight to cover it all. We let the house get cold in the winter and briefly suspend cable service to save cash. Leslie starts to clean houses. This is the price of pursuing intervention. Floortime is free. Leslie works every minute to join Matthew in whatever he is doing and build on it with him, “closing those damn circles.” Matt is so attached to Thomas the Tank Engine toys that he carries a bag of them down the aisle while ring bearer at his aunt’s wedding. The circles work. Matthew is more “with” us. I cautiously intrude on him, picking up one of the little engines he’s lined up and amiably offering it back, or rolling one out of place for him to circle back, so to speak, and get it in line again. Over and over, always a tiny bit differently, playful in my motions, trying ever so gently to liven up his serious demeanor. When I hesitate a moment, getting ready to mischievously pluck one more, he looks my way and I think I see a twinkle in his eye. He knows it’s a game. He is looking at me, naturally looking at me. This is so different from behavioral intervention. I didn’t tell him to look at me. I’m not instructing him how to play. This is Floortime. It’s about his idea and how we make it into a shared moment. I’m melting. And, impossibly, he comes back for more. With Dr. Wieder’s help, Madeline becomes Matthew’s sister in the fullest, most complicated sense. It’s their saga: Madeline follows Matthew, usually communicating at him, and expects that he will help her with whatever she needs. Matt tries to help, once giving a haircut (quite a scene) and these days driving her and her friends to activities. She is kind and irritable with him, and he is kind and annoyed by her. Filial love propels their daily narrative, writing a rich story of their lives in our family. This, too, is Floortime. Fast forward. We are in San Diego and out of the Navy. Matthew is in a regular first grade class. His holiday
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EDUCATION & THERAPIES
It is about what he wants and how to help him get there, supporting ever better ability to be calm, engaged, communicate, so he can have a life that is meaningful to him. And this is meaningful to us.
cardboard gingerbread man has a red LED for a nose. We facilitate circles of interaction with peers, and we pass ideas to the school staff -- especially for the playground. Still in speech therapy and with us or “big brother” mentors spurring him on, Matthew plays, surfs, and bikes. He has a friend here and there, and suffers a bully or two. Leslie has sharp warnings for children who would dare try twice, “setting the environment” in her inimitable execution of that Floortime concept. IQ retesting puts Matthew in the 110-115 range. Matthew absorbs facts but struggles with writing. His tutor, Leah Strauss, harnesses Matthew’s passion for science and they co-create essays about Mars. In Matt’s fifth grade science fair project, he attempts to demonstrate antigravity. He patiently walks me through the design, and I maneuver Matt to wax philosophic about the possibilities of Star Wars technology and what it could do for people. He hears Harry Potter books on tape en route to Indian Guide weekends (more facilitated play), then suffers my re-reading, trying to do voices like that English guy on the tapes. We stop to laugh and share the fun on every page. He is drawn to read the stories himself! Joy fuels his effort to decode the words, the phrases, and the lilt of the voices of the characters. He belly laughs. When we jump in to hear about it, he tells us where he is and we relive the moment together (especially fireworks that spell “POO”). This is Floortime. We join him, engage with him, and work toward a continuous flow of balanced back and forth interaction. He is now using symbolic thinking to conjure other worlds and ideas, think about them, and play with them -- his social-emotional and cognitive development are advancing. Middle school brings science competitions, Boy Scouts, and Bar Mitzvah training. I am coach, scoutmaster, and cantorial trainer. Leslie constantly pushes Matthew’s emotional envelope –
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she challenges him to resist compulsive hand washing, hug the pets, cook, and be who he can be. He seeks us out, but he retreats into videogames, too. There are tough moments, including a difficult situation at Boy Scout Camp. But now he tells us, and together we figure out what to do. This process of facilitating activities, helping him to expand his emotional and sensory tolerance and range and experience, and to solve problems, is also Floortime. We don’t tell him what to do or think – this is not about compliance or what we want. It is about what he wants and how to help him get there, supporting an ever better ability to be calm, engaged, and communicate, so that he can have a life that is meaningful to him. And this is meaningful to us. High school seems easier until Matthew has to learn a foreign language. English is already his “second” language. It’s our home language, but Matthew’s innate internal dialog is a nonverbal visual-spatial sixth sense that serves as his main conduit to the universe. His notebooks blossom with beautifully sketched circuit diagrams of things I cannot comprehend. But his speech is still halting at times, and he is learning from his now longtime speech therapist and confidante, Keri Leasure, ways to slow down the banter of peers so that he isn’t left out. To meet the language requirement, I learn three years of American Sign Language with Matthew. He chooses it because it’s visual, but it still isn’t easy. We survive with the help of his classmate, Jennifer, and ASL translator, Billianne McClellan. Matthew’s banter gets better, too. Leslie has us addicted to Comedy Central, where stand up acts, new and repeated, serve as fodder for fun fast-paced family time. Matt is learning to manage many people at once and hanging out with his youth group every week. This is Floortime. Matthew is honing life skills in his quest to become an engineer. He requires this context. And he is also becoming more comfortable among the guys.
Toward the end of sophomore year, Matthew can’t find an engineering internship. To his chagrin, we create a three-kid engineering and design company. Matthew and Cedric, Matt’s partner in a robotics competition, do design work. Annie, a devoted and gregarious friend, serves as CEO. She herds the guys, negotiating direction and deadlines. Matt fears commitment, but he’s constitutionally dedicated, and it’s fun. They gab about music and goofy videos. They get a design request, work fairly consistently for a year, and file a patent for a greener lighting unit – Matt is big on green. LEDs are involved. Floortime? They are engaged in ideas of what is good and what is better -- the grey areas of life. Matthew needs extra time on SATs, so we retest him: IQ high 120s. SAT and ACT scores are superb. Getting accepted to college will be easy. But Matthew wants to go to MIT or Mudd because they pull great pranks -- so much for vetting colleges. If he really wants to go and really cares, he needs to really take care of himself: get up in the morning, remember his medication, type his own papers, and promote himself to try to get into those schools. And this is Floortime, too. He reflects about who he is and who he wants to be. Most important: We hover less, but we don’t abandon him. We wonder aloud about his progress, and Matthew asks us questions, cuddles the cats, and calls out from the front hall on his way to school: “Well, gotta go.” Matthew is connected to the web of humanity. Family names and names of minors have been changed for privacy.
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ISSUE 30 2009