The Line on the White Board

Board Certified Behavior Analyst. Sounds pretty impressive and important, doesn’t it? We have a profound reputation for looking at everything in black and white. A behavior happens because of this….we added this reinforcement and the behavior did this….the behavior is maintained by the function of access to attention, tangible, to escape, or automatic….this problem behavior decreased while this replacement behavior increased…I do not even want to talk about diagnoses because it is just circular reasoning. Yes, I can help your child decrease his/her maladaptive behaviors, and yes, we can work on toilet training, increasing expressive and receptive communication, and independence with daily living activities. I can even teach your child to play soccer, basketball, or how to fish – if that is what you want. But before we do all that, I need to get to know you and your child and ask you a series of sometimes obnoxious and very personal questions about why your child does what he/she does. Then I will tell you why your child cannot do this or that and you will soon start to figure out on your own just how “delayed” they truly are. I will run your child through the VBMAPP, DP-3, Vineland, and ABLLS-R. I will provide you with icons, and visual schedules, tokens, timers, and programs so complex that your head will spin. I will train you and help you to understand why you should not give your son/daughter the toy that always stops the screaming, because realistically you are only reinforcing his/her screaming. In the end, I can and will promise to help make it better. “It” meaning your son or daughter’s life, your life, and your child’s and family’s future.

“Can your daughter pull her pants up?”

“No, she cannot.”

“Can your daughter put her shoes on, it is okay if the shoes are on the wrong feet and untied?”

“No, she cannot.”

“Can your daughter walk, by alternating feet one at a time, both going up and down on the stairs without support?”

“No, she cannot.”

“When presented with a bared breast or bottle, will your daughter calm when upset?”

“Yes, well… no, I mean, yes…sometimes, I, ummm, I think.”

“Does she look at you when you call her name?”

“Yes, well, sometimes.”

“Will Autumn call you by name, as in Mommy and Daddy?”

“No, everything is “Lala or Dada to Autumn.”

‘Where is this going for Peets sake?!?! I am starting to get irritated now’ I am trying hard to hide my ears under my hair as they are turning red with my frustration; red ears are usually my give away.

“Do this, Autumn” (Ms. Smart Sounding Psychologist draws a circle) – Autumn copies…. ‘Autumn is really good at drawing circles…just take a look at my walls, Ms. Smart Sounding Psychologist; let’s get on with the darned speech assessment now. What does drawing circles have to do with speech?” I irritably think to myself.

“Do this, Autumn” (Ms. Smart Sounding Psychologist draws a straight line on the white board) and Autumn just stands there and looks at Ms. Smart Sounding Psychologist, who obviously has astounding artistic abilities now, like she has three heads. Then Autumn walks away to line markers up in a long row on the floor before moving on to the dolls that will soon be naked and flung around the playroom.

My ears are now on fire – there has got to be smoke coming out of them and I feel like I am about to heave. “Oh my God, I need to get out of here – get yourself together Michelle, just keep looking at the ceiling so the tears don’t fall down your face.” I run to the bathroom in the Early Intervention building and cry my eyes out for 20 minutes. Sitting on a very small toilet made for a 2 year old with the roll of toilet paper blotting my eyes, I chastise myself while sobbing.  “We just came here for a speech and language assessment.  She doesn’t need to talk because her older sister does it for her. Everyone told me she was fine when she failed her hearing tests, not once, not twice, but three times in the maternity ward. I knew it, I KNEW IT! I knew when she just barely stood a week before her first birthday that something wasn’t right! How can I be so stupid! I did this….it’s my fault, I was on the Atkins Diet while I was pregnant, and she needed those carbohydrates for brain development. Shut up, Michelle! Get yourself together; you need to go back to Ms. Smart Sounding Psychologist to discuss why Autumn cannot draw a damned straight line. Why did she say ‘Special Ed?’ This was only supposed to be a speech assessment. You are so dumb, Michelle, you have worked in the field for years. You are a behavior therapist! You are going to be a BCBA! And you cannot even fathom that your own daughter is mentally impaired…oh no, wait, she used the ‘R’ word….mentally retarded….I can’t believe this is happening. My poor baby Autumn. I’m so sorry baby Autumn. How am I going to do this? What will happen to Autumn when I die? I will never be able to retire? I need more life insurance. She will always live with us. I will never have grandchildren from her. Will she ever talk? Is it Autism…oh God, maybe it is Autism….What was that test called again…the CARS?? The CANS?? It’s just the assessment Michelle! Get yourself together, it’s just an assessment. It…is…just…an…assessment.” I stagger back to the small classroom, where Autumn greets me, holding up a naked baby and pointing to her lined up markers happily jabbering about Lalas and dadas.  “Yes, Ms. Smart Sounding Psychologist who can draw very nice lines, I am ok. It’s okay, it’s just an assessment. This is just Autumn.”

Please meet Autumn.  Autumn has large crystal blue eyes, sandy blonde hair, stands about 5 foot 1 inches and is literally a ball of energy. Autumn loves to play with dolls, on the computer – often watching and re-watching favorite YouTube clips about Monster High, Barbie, Frozen and other various Disney Movies. Any given day, Autumn and I talk about what she is going to wear for Halloween and what theme her birthday and others’ birthdays should be. Autumn loves to ride her scooter, loves to ride horses, and loves to swim, and absolutely loves to listen to music. Autumn enjoys cooking, playing with playdoh, and painting. She enjoys spending time with her mother, father, grandparents, and her sisters – “her friends”. Autumn loves to be independent with all her activities of daily living – and often will become upset when she simply just needs help. Autumn is named after Jimmy Buffets youngest daughter – and by all means “she has a language all her own.”

To me, Autumn is my baby, my world, my everything. And to me, she is perfect – to everyone else, outside of her “circle of friends”, Autumn is different. Autumn chews on her hair. Autumn drools a little – well a lot sometimes, especially when she is excited. Autumn sometimes does not smell too well as she lacks the ability to properly clean herself. Typically, if left un-prompted, Autumn will have some portion of breakfast, lunch, or dinner on her face and clothes. Autumn needs someone to help her talk to others – especially when she is excited, angry, tired, or simply just trying to say something. There simply is not a day that goes by that I don’t have to say “Autumn pull up your pants” or “Autumn, pull down your skirt”, or “Autumn turn your shirt around”. There is not a day that goes by that someone doesn’t look to me, or her father, or her sisters for clarification on what she is trying to say. And there is not a day that goes by that I don’t see where Autumn should be when compared to “normally functioning” children – I call them my reality checks. I watched her achieve several milestones in elementary school and with her fabulous speech therapist as well her OT and teacher/aide team – but at the end of the day – I still see other 11 year-olds doing things way advanced for my Autumn. I see them playing with friends, and having sleep-overs, and chatting at lunch time without the help of iPads with robotic voices, or parents in the background simply making sure their pants are pulled up or their skirts are pulled down. I see them able to complete their simple math and language arts homework without the help of a parent using timers, highlighters, flashcards, visual schedules, and M&Ms for reinforcement. At the end of the day, with all the progress my Autumn has made, she still is years behind where she should be.

Autumn was diagnosed at the age of three as having mild mental retardation. This diagnosis has since changed to a diagnosis of Mild Mental Impairment – sounds a bit nicer doesn’t it? Autumn also has a consistent demonstration of a severe motor speech disorder, characterized by inconsistent phoneme omissions, substitutions, and distortions. She demonstrates deficits in expressive and receptive communication as well gross and fine motor control. But she is simply perfect to me.

Behaviorally, Autumn would be considered stable by any behavior therapist or analyst. She does not have behavioral goals in her IEP. She does demonstrate non-compliance consistently nearly every day – but what 11 year old doesn’t? Autumn can become aggressive and on a few occasions she has tried to bite, scratch, kick, hit, and pinch others. Weekly, she attempts to pinch, push, or dig her nails into her sisters when she is upset or if she is over stimulated. Socially, Autumn scares me a bit more. She will hug a stranger as fast as she will hug her mommy. She does not understand personal boundaries or how to gain attention appropriately from a stranger or a new friend. Her stereotypy of rocking and chewing on her hair and tongue often deter same aged peers from engagement. Autumn’s inappropriate social skills such as getting into someone’s personal space, touching their hands, arms, or faces while talking to them hinders socialization even more. Add on top of that needing to speak through an ipad or vocally with barely understood speech, you can see how these small behaviors do not help her make friends easily. When she does play with others, she can become over excited, begin to drool, or chew on her tongue or simply become too loud. She often laughs inappropriately at others jokes or at a “joke” she attempts to tell. One other difficulty that can really affect Autumn is her inability to fall asleep. Often she will go days without sleeping. I also suspect Autumn does not feel satiation during meal times as she will eat – if left to – until she becomes sick…then she will request to eat again.

Autumn is fortunate enough to have her entire immediate family working in the special education services in one way or another. Being in the field for 11 years did not prepare me for the shock of having my own daughter with special needs. I completely shut down for 3 days and just cried. I mourned for my perception of how my child’s life and my own life should have been. I blamed myself for what I ate wrong during pregnancy or what I did wrong during her infancy. I felt completely blindsided by the diagnoses. Thinking back now, I think I would still feel the same way if I had another child with a disability. It is not just about something being wrong with your baby; it’s a complete life changing moment. I don’t save money for my retirement first – I save for Autumn first and foremost. I will never give up my life insurance policies – because they will be going to her.  I mourn for my parents and brother who still cannot understand her speech or her behaviors. They have lived in a small rural town for their entire lives and they just don’t have a clue why Autumn cannot or does not act like other children. I mourn for my other two daughters who do not receive as much as attention as they should. I try very hard to make my attention equally divided, but sometimes I just need to spend more time with Autumn. I grieve for their lives, knowing that when I pass, they will need to care for a sibling for the rest of their lives. My oldest knows that someday she may need to take care of her sister – I think she is still in her own stages of acceptance. And I still cry myself to sleep some nights because no 14 year old should have to think of that. It is hard to hear my youngest (4 years younger than Autumn) start to ask why she is working on the same homework that her older sister still struggles with. But the knot in my throat is quickly replaced by a smile when I see May help Autumn with her homework: still another reality check for my husband and me.

My thoughts of Autumn’s future, I am sure, are similar to other parents who walk in my shoes – I am petrified. I am terrified that when I die, something will happen to her? If something happens to her father and me – where will she go? Can my parents raise her? My brother? Her sisters?  I feel very confident that Autumn will be able to have some sort of structured workshop placement after her IEP ends. She will also more than likely be able to be home alone if I structure her day well. My goal is to eventually return home on my family’s land, close to my brother, where she can maybe have a small house to herself. She can help take care of the farm animals and get paid for this employment. She has so much potential that only continues to grow.  She does have a bright future, but I am just scared of the what-ifs.

I am often asked why and how I became interested in Applied Behavior Analysis by students I supervise toward their board certification. I often note how I love what I do. I love teaching children to talk and to give them a voice. I love to see the smile on a mom’s face when she sees her son request for the first time using not words but sign language. I love teaching other people, like my students and therapists, how to do what I do. I love the goose bumps I feel when I know that I changed that child’s life and their parent’s life. More importantly, I love being a part of something truly good. Something truly miraculous occurs when a parent sees and feels the hope that they have not felt in years. And I love being part of a team that can provide parents with that hope…that not all is lost. That their child is going to come home and will be able to communicate and live with them. That with the right support, their child can be a productive member of society. The hope, that their child could have a job when they grow up, even if they need extra support at that job. Everyone needs help, and I love being the one who can help.

Most of my students and therapists know that I am one of those parents. I was a parent who had no hope. I lost it the day that Autumn could not draw a line on the white board. Hope evaporated when Autumn was diagnosed with, what was then referred to as Mild Mental Retardation. Did I become a BCBA because of my daughter’s disability? No. I was already down that educational path. I am simply fascinated by behavior and how beautiful it is, even when it is at its worst. What it communicates. What it means. What it makes people “feel”. Having a daughter with a disability only made my profession very real for me. I do not leave ABA at work – I live and breathe it every day. I do not “practice” ABA on my daughter, but I do use my knowledge of behavior to give her the best education and skills she has. This education of behavior and IEP law I am blessed with, where the majority of other parents unfortunately are not. I love sharing my knowledge with them – knowledge is power, and this power will give their children the services they need. What having a daughter with a disability did for this BCBA mom was to help me connect to the trauma that parents of children with disabilities live with everyday.

I am very fortunate to work for a company that has cultivated change within the behavior healthcare industry by grasping trauma informed care by the horns and leading the charge to better therapeutic care and treatment for individuals with complex disabilities. One facet that still needs attention within the behavioral healthcare industry is the trauma suffered by the parents of these children. Trauma that I have suffered….trauma that my family still feels, remembers, and lives. Trauma that is purely psychological, yet still bleeds each time a new assessment is administered to my daughter, forcing me to relive how “delayed” she truly is. Rehabilitation is mainly focused on the child with disabilities, yet to truly heal and promote growth, the parents also need rehabilitation, patience, and understanding. I understand this trauma. I feel the need to grieve and often still long for a life that will be very different than those of my closest friends and colleagues.   I use this grief and understanding to help other parents through this process. I want no one to feel the same way that I did when I sat through that initial assessment. My experience as a mother of a child with a disability and my education in behavior and developmental assessments has helped me to help other parents through this very difficult time. Relating to the loss of hope, the terror, and the feelings of helplessness acts as an ice breaker for many of the parents I work with. As I have grown as a mother and as a behavior analyst, I now know to build that trust in the parent and to foster hope before even thinking to ask assessment questions. Letting them know that everything may not be okay now, but with a lot of work, many tears, and someone who knows what it feels like to lose and then find hope by their side, anything can be accomplished. How does this mom start an ABA assessment of a small child? I start by embracing the trauma these parents have endured and by having a discussion with them about their child, their hopes, and their dreams; and by showing them the line on the white board that grew into a flower, with a butterfly fluttering toward the sun in the sky.

Michelle is a parent, advocate and champion for the highest quality of trauma informed services for individuals with special needs.  She has over 13 years of experience working at Grafton and has held various roles in her tenure.  Currently, she is the Clinical Program Manager for Grafton’s  Elm Street campus located in Winchester, Virginia.