Self Injury in the General Population: Will I hurt myself today?

Will I hurt myself today… Or do something (F.A.B.) instead?

Time for a Trauma Tuesday post. But this one is not what you think.

By this time, most people have heard the notion that those who have been hurt may be more at risk to hurt others.

In my work with clients who have been through childhood abuse, mistreatment and neglect, I often see the tragic pattern they try to stop, often failing because of a lack of resources, or knowledge about what to do differently.

And on our caseloads with clients with autism or developmental disabilities, we frequently treat another kind of pain, the kind that a person produces for themselves and often related to the challenging environments in which our clients live, or a lack of skill in expressing one’s needs. In our field, hurting oneself is known as “self-injury” or SIB (self-injurious behavior).

However, this post is not about treating SIB in our clients, although there are many resources for doing this, and your friendly local behavior analyst can do a functional behavior assessment to determine where to start, before making an individualized plan.

This post is about something else that is common, yet hidden.

Recently in a women’s empowerment group for supposedly “neurotypical” people, a behavior analyst was stunned when 75 percent of hands went up as the question was asked, “how many of us have actually hurt ourselves, or do this on a regular basis?”

Today, my question for us is, what about the pain all around us? What about self injury in the general population? Continue reading

Trauma-informed behavior analysis

Part 1: Trauma-informed Behavior Analysis: Beyond the immediate “function”chalk_child playing (2)

(Also see Part 2 coming later this week, on Engineering Supportive Environments)

What is trauma-informed care? Should we provide it as behavior analysts?

For any given behavior analyst, perhaps we already think of a good functional behavior assessment as “trauma-informed”. This is because a comprehensive assessment would necessarily take into account the kinds of information that makes an assessment or treatment trauma-informed.

For example, an assessment is required to take into account someone’s history before treatment recommendations are made. But how much history do we review? What are the guidelines for what to consider? When, and how consistently, are these guidelines followed?

How much history is enough?

Some assessors (or agencies) write only a few lines or a paragraph about “previous history” or “previous treatments” without fully understanding their impact, or learning more about what happened and how it contributed to current functioning. This may happen because there is not funding or hours available to look into these variables. In some cases it occurs because the records are not available to the agency conducting the assessment. This is frequent in a case in which much of the client’s family history is unknown, or when a school psychologist or behavior specialist is doing a behavioral assessment for educational purposes but doesn’t have access to (or time to find) the information.

What happens when we don’t consider history? Continue reading

New blog series: Treating trauma from a behavior analytic perspective

A new series on trauma and behavior analysis  

By Dr. Teresa Camille Kolu, Ph.D., BCBA-D

chalk_teddy (2)Behavior analysts are tasked with doing no harm. Like other professionals who adhere to a rigorous code of ethics, they are responsible for working only in their defined areas of competence, while seeking supervision and training in other areas as appropriate if needed to grow their expertise.

A new training is available from Dr. Kolu on the ethical and behavioral treatment of cases related to “trauma” (e.g., adverse childhood experiences or variables related to early disrupted caregiving). See some of the learning objectives below, check out our related blog series, and contact us today if we can support your team.

SAFE-T model Continue reading

Thanks: To a scientific grandfather I never met, and other mentors

This past week, a great man of science passed away unexpectedly. In a loss profound within the behavior neuroscience community, we miss Howard Eichenbaum. This scientist was known for his prolific work on the hippocampus, a seahorse-shaped structure shared by animals from rodents to people, and taught us much about the brain’s role in memory, learning, and emotion. One of his graduate students, Timothy Otto, became one of my own graduate mentors.

For several years until a decade ago, I spent time in his Rutgers laboratory. I learned from, studied under, and published with Dr. Otto; his criticism helped strengthen my work, hone my behavioral observation expertise first watered at UNT, and illuminate skillset cracks that I continue to work to fill.

Perhaps good mentors hope we follow in their footsteps. I think great mentors foresee that often, we will not, and still encourage us to forge a unique path—or to find the “path that has heart”. From the vantage point of my private practice serving adults with dementia, developmental disabilities or autism, and children affected by Rett syndrome, asperger’s, or foster care, I realize now how great a loss it might seem to have one’s student (although I was not all that promising) leap from the academic tower—and fall right out of the neurotree.

Yet although we are no longer tethered, we remain invisibly connected. Today my work touches some of the most vulnerable populations and is informed in a way it could not have been except for those laboratory days.

When I support foster families who raise babies exposed in utero to drugs of abuse Continue reading

Client success story

As a community behavior analyst with clients all across the age span, Dr. Kolu goes to her patients where they need her, working in their homes, schools, nursing homes, family visitation rooms, doctor’s offices, or the grocery store – wherever the challenging behaviors are worst, or where the skill deficits are most pronounced. Recently, Dr. Kolu has been partnering with community agencies that support families involved with the foster care system. One of our clients lived with a foster family who began working a year ago to learn strategies to support behavioral wellness. After removal from a drug-using and neglectful biological home, young clients often experience challenges related to toileting, eating, getting adults’ attention safely, and learning to play or interact with siblings (and more). Dr. Kolu provides social emotional support or developmental intervention from a behavioral perspective, and these services may be funded by early intervention, faith based organizations, or health and human service or other agencies. Working carefully with the child and family, Dr. Kolu provides coaching, data collection and observation, learning how a child’s past experiences have affected their current behavior and participation in their environments. Experiencing early trauma, abuse or neglect, or disrupted caregiving early in life impacts a child’s ability to communicate their wants and needs, get along with other children in the family, and participate in childhood appropriate routines, play, and learning opportunities. In this success story, we helped to teach our client how to play or talk with others instead of hurting other people, and to play safely by himself for a brief moment while a caregiver turned away. Together with the family, we learned that the typical parenting techniques successful with their other biological and foster children were not effective with this child, and used individualized strategies instead based on the functions of his behaviors and history of interactions with his previous and current environments. As the foster family learned new strategies (for example, to support the child to eat only foods, participating in meals and snacks at appropriate times instead of foraging through the trash), the child used appropriate behavior and language much more often. After about a year of working on these behaviors once or twice per month in family coaching sessions, the child’s behavior had improved so much that the family stopped needing regular coaching. The child has now been adopted by his foster family and is a happy three year old with siblings of his own. If you are interested in hearing more about Cusp Emergence and our work with foster families in Colorado, email Dr. Kolu through the website or leave a comment and we will get back to you!

“Will I have bubbles today?”

One time, I worked with a little girl who seemed to be “typically developing”.

This was a joyful experience for both her family and I, although it was unusual for a person with my credentials to have been asked to spend time conducting “therapy” or intervention for a girl who was seemingly doing just fine. It may seem unusual for a bright, well-meaning, and well-equipped family to request assistance from a behavioral doctor, when the child is doing well. In fact, many months into treatment, still months away from her approaching 3rd birthday, I heard the child say to her play partner, “At some point will you want a different color crayon?”

As strange as it seemed, this was the same child who had seemed nearly non-vocal when I’d begun therapy with her a few short months earlier. She had not been talking much. She was only using single words and very short phrases. She wasn’t communicating using her words, to get her wants and needs met, much less express her thoughts or wants during play. In fact, when it came to playing, she often spent time lining up household items, seeming to ignore many of the wonderful toys her family put in her surroundings.

Her mother found this distressing, and as a clinician familiar with the signs of autism and other pervasive developmental disorders, I too was concerned. However, as we worked together, we soon learned that she was interested in play, but didn’t know how. Toys were interesting to her when we acted interested. As soon as we worked on play, while making sure it didn’t seem like “work”, this little girl became an expert player in no time!

Children need play, but many of us aren’t sure how important it is, or how to encourage this when it doesn’t seem to be happening on its own. And what about children who don’t seem to “want” to play with toys or explore their environments? Other children seem to play in unsafe, repetitive, or non-social ways, or even lack interest in toys or games altogether. Since families with children who are otherwise “typically developing” can benefit from learning ways to encourage their children to play, coaching from a behavior analyst experienced in child development can be very helpful to these families. The child and family in this story quickly learned strategies that have resulted in her communicating more and more of her needs, growing more confident and independent each day, and learning how to enjoy playing with toys, and playing with others. But today, we consider together one of the most important lessons this young lady taught me through her amazing mother.

6 months into treatment, I had a conversation with the child’s mom about bath time. As we discussed the routine, I learned a lot about what the family valued. I learned that as the child prepared for her bath, it was always related to nap time, and that she carefully selected and laid out the clothes she would wear after her nap, the books she would read with her mother as she laid down to sleep. I listened to them describe the bath routine with its long succession of steps, including starting the water, undressing, getting lotion and towels ready for the time following the bath, getting bath toys and clothes and supplies ready for the adventure.

The adventure that occurs each day is still full of possibilities.

And at the last minute, when the child was almost ready to undress and get into the water now running into the bath tub, her mother always asked an essential question: “Will you have bubbles today?”

Her mother’s eyes twinkled as they shared with me the warmth contained in this interaction, the predicted enjoyment of the bubbles, the compassion for her child making a selection she makes every day.

“She ALWAYS wants bubbles”, the mother said to me in a loving voice that sounded both amused and kind. “She always wants bubbles. But every day I ask her anyway. She thinks about it. Then she tells me her choice. We add the bubbles. And every day it’s a new adventure.”

The next morning, as I got in my car, I sat for a moment. I took a deep breath that contained possibilities we may ignore. Nevertheless they are there, unseen! How much of our lives is on autopilot? Do we turn on the radio and become instantly enmeshed with its ads? Do we experience unconsciously symptoms of a mind occupied by habit, like a clenched jaw, risen or hunched shoulders, and reviewing repeatedly what has gone wrong in our lives, or what we have to do today? Do we weave in and out of traffic, getting ready through the loud rock music to descend with our monkey mind into shallow breaths and feeling aggressive justification at our rage when others cut us off in the inevitable traffic interactions that follow? Do we flip to a slow song and allow our mind to drift from wonder to sadness with the whim of the dj’s successive plays? Do we turn on a country or pop station and cry along with songs we danced to decades ago, with people who no longer care about us? Do we leave our phone turned on, to blindly answer any call or text that comes, despite the needs of attending to our environment, the other drivers, the road? Do we commit ourselves accidentally before we have considered the need? Do we force habits on ourselves and others without the beauty of appreciating a moment of possibilities?

So I left the radio off. I breathed deeply into my drive. I planned ahead to practice loving kindness during my day. I noticed hawks circling and diving around me. And I practiced this repeatedly, growing grateful for the opportunity to notice a need, and compassionately meet the need. I gradually saw concentric circles of my world becoming visible to me and expanding daily as I noticed more and more of my surroundings. I varied my drives more. I took the roads less traveled that did not promise to save me 2 minutes of driving time on an already 55 minute trip. I loved the trees with my whole being. I watched the clouds. I felt joy, sadness, the feeling of having everything I needed. And I tasted the beautiful silence.

Several drives later, when I turned on the radio, it was time. It was a response to a “feeling” that I’d like to turn on music. I’d been calm and considerate to myself for much of my drive, and now I found a station that matched my mood. Instead of allowing my mood to rush headlong into descent, following the topsy turvy waterfall of changing stations, I noticed and appreciated how I stayed mindful of the intention I’d set earlier for the day.

The question: Will you want bubbles today?

The assumption: I always have bubbles. Why would I even ask the question? Yes. I always have bubbles. Why would I not want bubbles?

The answer: I can have bubbles in my bath. It’s up to me. Am I in a bubble mood? I don’t have to be. Someday, or even some time later this week, I might not want bubbles. I can have either plain bath water or bubbles. Even though I usually have bubbles, I don’t have to. So … do I want bubbles today?

Thank you for asking. Today, at this moment, I do.

What’s your story?

Today’s message: when someone wants to tell their story, let’s listen. It’s there even if we never get the chance to hear it so first, please be kind.

Here are two powerful stories from two young men who each shared a story with their classmates. They’ve both faced challenges, although their diagnoses are about as different as they could be.

Click here for a video made by a college student with Asperger’s on dating.

Next, read about an unforgettable young man with Treacher Collins Syndrome and read his letter to new classmates, here. And if you’re interested in learning more, September 2014 is Craniofacial Acceptance Month.

Everyone has a story. Everyone’s story matters.

So we have this in common! We are all human beings and we all have our own stories. Do others know your story? Is there more to your story than others know? Children of all ages keep teaching me the answer is usually yes, there is more. What I’m showing you now isn’t all I’m capable of. What I’m telling you isn’t all I have to say. What I need to learn is bigger than your goal for me this year. I want to be able to do more than what I can ask for today.

“I’m invisible,” the tall lanky adolescent said out of nowhere. We were going for ice cream with his mom after peer interaction group that week. And this was something new. I glanced at his mother. She was intently watching her son, ready to comfort him or to try, or to suggest a strategy. We had worked on social interaction skills before, building on his skills little by little over several years. He had mastered learning to approach others to start a conversation, and learned to “read” their social cues as their complex nonverbal behavior telegraphed their boredom at an old, familiar topic. He learned to say “good game” instead of punching winning play partners. He had used these skills like a pro today. Had something gone wrong that neither adult had observed?

We didn’t know. Carefully, his mother said “I see you, champ! Your friends did too- you did a great job. Especially when you celebrated with them after the game today.”

“They’re not my friends. They are my peers. I don’t want peers! I want to date GIRLS!” His voice grew louder and sounded pained as he broke into a run toward the family’s driveway. His mother stopped instantly on the sidewalk and sank onto a bench nearby. She cried softly. “When he was first diagnosed, I thought he would never be able to talk. Now he talks circles around all of us, in every topic I can think of– but never in a million years considered that he might one day think about dating.”

His mom is not alone.

Sometimes our diagnosis, or a physical difference, makes us seem invisible to others.

Sometimes our diagnosis leads others to focus so much on one aspect of our whole self, that they forget about the other parts of a person. For instance, although meaningful relationships are important for EVERYONE, sometimes we forget they would be just as important for someone with Autism.

Diagnoses are sometimes used to label physical differences. For example, I know a great kid who was born with a craniofacial structure that’s really different than most. He’s diagnosed with Treacher Collins Syndrome, but his diagnosis has nothing to do with his ability to be a great friend or do well in school!

Although everyone has amazing potential, their potential—and their story—is often hidden. Not everyone gets a chance to share their story. When they DO get a chance, it might already be too late! And without hearing the story, sometimes people react to a difference. When we react too quickly, we might judge others, or make judgments about what others can do before we even get a chance to hear their story.

First, let’s be kind.

Welcome back!

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What have you been up to? Cusp Emergence has been busy in Colorado. Some of our latest ventures include consulting for autism agencies; supervising clinical psychologists seeking mentorship as they learn how behavior analysis can benefit their practices; and receiving and providing continuing education. At the same time, Cusp Emergence continues to educate community centered boards about behavior analysis and its role in early intervention and the IFSP. Here are some of the lessons learned over our past year and a few things we’re looking forward to. Be well!

UPCOMING EVENTS:

Check out the community calendar maintained by Boulder and Broomfield’s Community Centered Board, Imagine! You’ll find monthly dates for Dr. Jeff Kupfer’s free class on Building Cooperative Behaviors (the next is September 24, 2014 and attendees can use the calendar to register online). You’ll also find out about diverse events including classes from the Association from Community Living, various parent and adult support groups, yoga for children with special needs, and events from the Peak Parent Center (including an upcoming webinar series on the IEP process).

Firefly Autism is holding an 11th birthday bash at Denver Children’s Museum on September 26. This sensory-friendly night should be comfortable for children and their families and friends. Come for the cake, Mickey the Clown’s balloon animals, and fun!

Special Faith: Is this child welcome in my church?

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When Jeanie’s son was 7, he bit a peer nearby during Children’s Ministry. Many members were horrified and Jeanie felt ashamed and totally incapable of helping Jason. He had never been fully accepted anyway, she explained to the youth pastor as they discussed the painful events of the last service. “He’s very loud and moves around during the service, flapping his arms and bothering people. Although I know it’s related to his autism, I DON’T know how to explain that to others, and I’m not sure where to begin even if they want to help. Most places we’ve been, we stay a few months until an incident happens, and we’re too embarrassed to go back. What is he getting out of this anyway?”

Jeanie and Jason are a combination of many families, and many children.

Many members or former members of faith based communities have shared their experiences with us, and often those experiences were challenging and devastating. This secret of families often comes to light during a family behavior assessment, when we ask about activities they used to enjoy, but no longer get a chance to participate in. One mother started to cry, and shook her head in embarrassment as she described the reactions of others who had seen her child’s repeated, seemingly uncontrollable, tantrums. These events and others had really “turned her off” from trying church with her family again. At the same time, she felt sad, ashamed of stopping taking her family to church, and totally alone.

This challenge may result from the difficulty managing a child’s behavior in the community. But in a church or faith based environment, it is not all up to one parent. This is because the reactions of community members, the organization of the physical environment, and the schedule of church routines, can all contribute to how challenging a child finds it to participate in a service or other church activities.

Do your church members know how to support children with special needs? If you’re not sure, it could help to consider these questions with a core group of parents and leaders, or ask the members of the community.

Do families with special needs come a few times, and seem to drift away?

Do members of the faith community understand that occasionally challenging or loud behaviors may occur unintentionally? Do they understand supportive or non-harmful ways to respond if this happens?

Do adults and helpers understand how to help children feel comfortable who can’t use words to talk?

Do adults and helpers understand how to help students learn the “organization” of church or faith-based routines? Are adults patient? (Can adults understand it’s important to help students build attending skills gradually, instead of expecting someone to be well behaved during an entire service without practice or foundational skills?)

Can adults be flexible? If a new Sunday school student can only sit for 5 minutes without using disruptive behavior, are helpers able to design a more variable schedule and make a safe space for the student to learn the routine?

Is there a quiet safe space students could go to “take a break”?

Are other children supported to learn helpful ways to be a friend to someone with different needs at church?

Do churches provide connections to resources for those who need help navigating large crowds, or who need an alternative to loud music, long periods of sitting still, and potential sensory challenges?

When children come to mother’s day out, day care, preschool, Sunday school, or children’s ministry, those with autism or other challenges occasionally try using unsafe behavior to get what they need or want. Do adults and helpers understand how to keep children safe while building alternative skills?

These questions, and more, can be answered by consulting with a person skilled in both community interactions and behavior based supports of learners with autism, or individuals with other special needs. Some churches find it makes sense to build a volunteer or paid position in which a member acts as special ministry liason. That person, or a core group supporting families in their church, may receive consultation from a behavioral provider or special needs educator with experience in this area. Consultation from a behavioral provider can insure your staff contributes to preventative schedules for individuals affected by special needs. We can assist staff to arrange a supportive environment in which behavior that is perceived as “challenging”, can be minimized while communicative, safe interaction is supported. We can help by paying attention to growing skills of the individual with particular needs. By valuing and growing ONE individual within the faith based community, it can create a safer more harmonious environment for ALL members of that community, and attract more families to a space they can be welcome and minister to others.

This article is part of our “Special Faith” series in which we’ll be exploring topics related to helping family members with special needs, to participate more fully and joyfully within their faith based communities.

In case you don’t have a consulting behavior analyst who does community support in this way, many organizations are currently working in this area of ministry. Check out the links to read about some of those ministries, as well as stories from individuals (including mothers of children with intellectual disabilities, autism, and other challenges) sharing their experience of the church.

http://speaking4sam.wordpress.com/autism-and-the-church/

http://www.autismspeaks.org/blog/2013/06/25/partnering-black-churches-raise-autism-awareness

http://www.christianitytoday.com/women/2011/january/is-your-church-open-to-autism.html

http://dce.oca.org/resource/2087/

http://crossmap.christianpost.com/news/autism-and-the-church-how-to-serve-autistic-children-2482

http://blog.chron.com/sacredduty/2013/04/lakewood-church-expands-ministry-for-children-living-with-autism/

http://thinkingmomsrevolution.com/autism-and-the-church/