Category Archives: Community

Do trials always make us stronger?

18 Friday Aug 2017

Posted by in adults, Behavior Analysis, Community, dementia, resources, teaching behavior analysis, teaching ethics, trauma, Uncategorized

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Sometimes I write of success; of hope; of happy endings.

These are notable in part because so much of the time, the families with whom I collaborate are those whose children probably won’t learn to talk or bathe themselves, or whose middle aged children might die in the mental hospital, or whose children might never overcome their meth addiction—or women who, like me, wonder if their infertility might be lifelong.

And by itself, merely “facing a challenge” doesn’t do anything.

In a cruel twist, those facing stressful and often life-long battles also encounter the most unhelpful and banal clichés that range from “not comforting” to insulting or humiliating. They often come from well-meaning people who haven’t walked a mile in the moccasins of those they are trying to help. I’m sure I’ve been guilty of this and that we all will be again.

But who cares about words. The interaction between a speaker and listener, and the actions of people, matter much more. It’s not what I say in a challenge that matters, compared to what I do. I’m reminded of Ogden Lindsley’s quip that “if a dead man can do it, it ain’t behavior”: I guess a dead person can face a problem. But can he solve it?

Maybe I don’t get stronger merely by facing challenges.

In fact, perhaps I become softer, more tender.

I cry more easily.

I empathize more, and longer, with the parents who struggled for 15 years to have a child often to learn that their expensive and long-prayed-for baby has life-threatening and life-long diagnoses.

If I’m not stronger, at least I’m listening more.

And I notice something else a dead person can’t do:

Whatever skills I practice become more fluent.

I listen and get better at listening.

I empathize and gain fluency at showing empathy.

I help, and gain skills in doing helpful things.

I care, and continue to care.

And I share and feel uncomfortable, and become more comfortable at being uncomfortable.

(Sorry, behavior analysts, I’m not sure if that last one was an actual “behavior”. Similarly, I’m sure a dead man could do this one too, but it took me lots of practice to finally become quite skilled at staying calm while having my blood drawn. I would like to stop practicing now, I’m fluent, thank you very much.)

Many parents of my clients with low functioning autism, or the grandparent clients who are raising their great-grandchildren while multiple generations in between are in jail or recovery, tell me that they are tired of being called heroes. That they are simply doing the best they can, all the time, like you or me.

That often they still wish they could do more or do it better.

As I help clients – such as those whose loved ones have dementia – I discover more and more that our trials are universal, although many of them seem so foreign to young people (and to inexperienced behavior analysts in the helping profession).  Lately I have been developing tools that seem so simple, yet also seem helpful to so many different clients, like this Resource_Orienting statement tool for a loved one who is distressed and disoriented.

Whatever tools we use, what matters seems to be to keep going—and to keep holding someone’s hand when it matters.  Granny and PaPa walking.jpg

Part 5 of Trauma-informed behavior analysis: 6 ways to improve your supervision of trauma-related cases

10 Thursday Aug 2017

Posted by in Behavior Analysis, Community, Education, resources, risk assessment, supervision, teaching behavior analysis, teaching ethics, trauma, Uncategorized

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This post is Part 5 in the Trauma-informed Behavior Analysis series by Dr. Teresa Camille Kolu, Ph.D., BCBA-D.

Supervising trauma-related cases? Here are a few tips to help you nurture your team.

  1. Model how to reach out when needed, by reaching out when needed.

Does this seem obvious? Maybe. Do we do it sufficiently? Maybe not. If you want your team to do this with you, show them how you are doing it as well, with your own mentors. Read, obtain consultation, and seek mentorship. I meet rather regularly with a mentor whose experience outweighs mine in some areas (like brain injury) and donate regular time as a mentor for others who need support on issues such as supervision of clients who have been through adverse childhood experiences. It’s easier for me to say to supervisees, “don’t forget to seek ongoing supervision and mentorship when you reach the boundaries of your competence” (e.g., see Professional and Ethical Compliance Code items 1.02-1.03) when they see me doing this at the same time.

  1. Update your team’s FBA practice.

For example, are you documenting the client’s history with respect to aversive experiences, development, and the risks (see Code items 2.09c and 4.05) involved based on their history and behaviors? Are you documenting and fostering robust communication with other professionals involved (see Code items 2.03a-b)? Treating trauma is not the kind of case one does alone (and needs more than a team whose members are all behavior analysts). Cusp Emergence is doing trainings this month for teams who treat cases affected by trauma and we’d love to hear from others on how your FBAs meet the complex needs of this population. The SAFE-T model includes training for supervisors on several components of an ethical and comprehensive trauma-informed behavior assessment.

  1. Understand that clients affected by adverse childhood, medical, feeding or other aversive experiences may differ from your other clients– and that your resulting individualized treatment strategies and recommendations necessarily will differ.

In the next weeks, the “Trauma-informed behavior analysis” series is sharing a couple of articles related to this topic, including “When praise doesn’t work” and “Different types of adverse experiences that change us”. Behavior analysts can document how the trajectories for alternative skill acquisition, or reduction of challenging behaviors, differ depending on their clients’ histories. It can be off-putting to realize that the go-to strategies that worked for most previous clients on your caseload are simply not effective here, but it’s important to know this before you start, because what you don’t know may actually hurt someone! If you think this feels awkward to you as a behavior analyst or teacher, just imagine what this must feel like to a new foster parent of a child with a “reactive attachment” history, when the everyday parenting strategies just make things worse. (For more on this, see #6 in this list.)

  1. Teach your team how to document barriers and risks.

When your staff shares something they overheard a child say, or when your registered behavior technician walks in the house and something fishy is going on, don’t just have her leave with a disturbed feeling… you should already have documented your process for the conditions under which the staff will be required to write it down and discuss it with supervisor and team in a planned way. Over time these documented paths are more important than anyone in the middle of the problem could ever know. For those of us already tasked with reporting MANE (mistreatment, abuse, neglect or exploitation) and honoring our ethics code, it’s important to train staff on what to do with the “not necessarily abuse but definitely inappropriate and risky” situations they see and hear in their line  of work. Don’t leave them to figure out the answers on their own.

  1. Create role maps for key roles on the “trauma triage” team.

This is a tool you can create (an upcoming Resource Wednesday post shares one of ours) that documents the role of each relevant team member. Even if you begin only with the behavior analyst, teacher, and family members on the team, it’s a great start. If the behavior analyst you are supervising is new to trauma, it may be tempting for them to take on too much, to give advice when they should still be collecting data, or to initiate a behavior strategy before you have finished communicating with the social worker about the history of abuse. We can help by using role maps listing roles and responsibilities, making explicit how people can do things within their role that are helpful versus not helpful. Yes, I explicitly spell these out (e.g., if a family is divorced and I work with both sides, I share documents that say how they can help us benefit the child, who remains at the center of the family). “Makes positive statements about mom in front of child” or “writes down concerns with co-parent instead of says them out loud in front of child” are two examples from the recent role map I made for a broken family who was working together for the first time in several years. Grandparents, teachers and anyone who asks “I want to help, but what can do?” also benefit from these role maps. It gives you something to reinforce while you wait, and trust us on this: when there’s nothing specified, people fill in the gaps, often by doing other things that they hope, but that are not necessarily, helpful.

  1. Before you try to help a client affected by trauma, find ways to hear from listen to families who have been there.

There is more on this in an upcoming story, but you can start now by start now researching ways to hear from families in your neighborhood. I learned so much—about what is helpful, and what is simply hurtful and devastating—from volunteering time in various parent support groups, going to county events for adoptive parents, and hearing what foster parents or teachers of children with emotional and behavior disorders are going through. I don’t mean that at that point I was providing any parent support at all, or giving any behavior analytic input: I was just listening to the stories as adoptive or foster parents went round the room sharing from their hearts, their own pasts, and their children’s experiences. The behaviors you hear about will break your heart, and the complex needs of their families may overwhelm you. If you can listen quietly and then you still want to help and not run away, this is a start. Please don’t do this work without this important step. People don’t want to hear from behavior analysts who cannot listen.

I’m listening. Contact me any time.

 

Trauma-Informed Behavior Analysis, Part 3: Is It Ethical For Behavior Analysts to Treat “Trauma”?

05 Saturday Aug 2017

Posted by in adults, Behavior Analysis, behavior cusp, Behavioral Cusp, Community, Education, ethics, risk assessment, supervision, teaching behavior analysis, teaching ethics, trauma, Uncategorized

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This is Part 3 in a series of how behavior analysts approach “trauma”, by Teresa Camille Kolu, Ph.D., BCBA-D.

Is It Ethical For Behavior Analysts to Treat “Trauma”?

Meaningful answers often depend on asking an appropriate question.

Since this “yes-or-no” question is not the least bit appropriate for many of us to answer “yes” to without more information, let’s start by refining our question.

Under what conditions would it be appropriate for a behavior analyst to treat someone whose behaviors relate to their adverse childhood experiences?

The question above is one way of asking the question, and your team might think of others. It also may help to check out Tuesday’s upcoming article on Behavioral Terminology Related to “Trauma”.

I’ve certainly seen some inappropriate, well-meaning, and harmful treatment of behavior when the children and people involved have been through adverse childhood (or other) experiences.

Part of my concern is that young behavior analysts may have come from a program that did not cover adequately the experimental basis of our field, including schedule effects or concepts like the molecular or molar view of behavior.

I think young behavior analysts who are smart and curious can get these things; they need to have better exposure in their classes (and online course sequences toward certification paths aren’t likely to bring this exposure) or groups (so ask your friendly local or skype article CEU club if you’d like to read an article like this one on the paradigm shift from the molecular to molar view in behavior analysis). This is why a supportive verbal community of reinforcement is so critical for developing behavior analysts (more on that later elsewhere on this site).

(Not sure how to look up pdf’s of articles? An easy way is to first look at the online journal list (for example, for JABA or JEAB) and first enter your search terms, then when you find the article, go to the journal’s archive and click on the issue where the article was published, and download the pdf. This works for all archived JABA and archived JEAB issues through 2012.)

That was fun; let’s get back to the scary stuff: inappropriate, well-meaning, and harmful treatment of behavior.

Sometimes an inexperienced behavior analyst treats only the “local function”, such as treating a behavior in your classroom that seems like it’s related to attention with pure extinction (e.g., without conducting a complete and appropriate functional assessment). This might seem appropriate without more information, but in clients with “trauma backgrounds” or exposure to serious past (or hidden and ongoing) childhood adverse experiences (such as disruptions in primary caregiving and exposure to abuse and neglect), this course of treatment may lead to further harmful escalation, or serious risks and side effects. There are other possibly more appropriate options such as differential reinforcement without extinction, or the preventative schedule approach I mentioned in a previous article. At the least we need to base decisions on better information.

In a classroom where I observed a child who had been through a series of terrible and neglectful situations, when his behavior was placed on attention extinction, he virtually lost all advocacy skills (e.g., stopped manding for help or showing his distress), was being abused by others and never reported it, and started hiding his self-injury which became more and more severe. These were some of the risks involved of using a procedure without evaluating the possible side effects given the child’s repertoire and the reinforcement available for his appropriate skills, and without collaborating with others who had access to the child’s history and current home situation (Compliance Code 2.03b).

The teacher was using the procedure recommended by a behavior analyst, but the BCBA did not know about the child’s history or home life (and did not ask). As I’ve said before, I am NOT asking anyone to stop a function-based approach!- but to demand the information you need to understand the larger context for behavior.

So what’s a behavior analyst to do?

I typically try to think first of ethics (asking, “should I be doing this?”) before diving into strategies (“what should I be doing?”). Here are some ethical considerations:

  1. Is this in my boundary of competence and based on my education, training, and supervised experience?

See Compliance Code 1.02a). If not, it’s a good idea to first seek continuing study, training, supervision and consultation (see Compliance Code 1.02b). I think the skill of reaching out to obtain supervision and mentorship when appropriate (e.g., accepting clients appropriately) may be an important behavior cusp critical to the future repertoires of behavior analysts trying to practice ethically.

  1. I think of ethical behavior analysis as practicing within my boundaries, yet at the same time as growing my boundaries of competence so that next year I will have expanded them and will be able to take a client I said no to this year.

Dr. LeBlanc and colleagues have an article on expanding the consumer base for behavior analytic services that is available for a CEU.

  1. Consider ethics and your own experience and resources carefully, before you begin treating trauma or accepting any kind of trauma-related client.

See 1 and 2 above, and remember not to give advice that stands in for services (e.g., 1.05a). Our responsibility is always to do no harm, and at times the side effects of inappropriate treatment may be riskier than doing nothing (2.09c). It is important to develop a relationship with a mentor who has been there and can assist you to apply new information to an exquisitely sensitive set of problems and clients. If not, arrange for appropriate consultation and referrals (2.03).

  1. All this goes for supervisors too:

Just like we should be careful before we accept a client for treatment, we accept a supervisee who is treating in a sensitive area only after considering our own defined area of competence (5.01). How will we communicate about and report risks (7.02) if we are not experienced enough to recognize and communicate about the risks of our own treatment (2.09)? Agencies may be under particular pressure to accept clients when there is funding, but there are serious risks of doing this too early or without appropriate in-house supervision.

  1. Be prepared for extensive collaboration:

I’ve talked to supervisors who have taken on trauma cases without completing assessments of risks and side effects (2.09c) or collaborating with other therapists the child is concurrently seeing, and this means they are already in danger of not being able to review and appraise effects of other treatments that might impact the goals of the program (2.09d).

Why do you need mentorship, education and experience under supervision first?

This is partly because after you accept a client (e.g., 2.01) whose service needs are consistent with your education and training, experience, resources and policies, your responsibilities are to everyone effected by your behavior analytic services. For example, once I started treating clients affected by trauma, I also found myself treating foster families’ other children to deal with the abuse the affected child talked about, the primary caregiver who used to be on drugs and was trying to demonstrate she could follow a plan and get her children back, and the social workers and other team members who didn’t understand schedule effects and were making placement decisions without data on behavior.

In an upcoming article we discuss some treatment approaches and how we can improve our supervision of BCBA’s treating these serious concerns. But first, next Tuesday covers some behavioral ways of talking about “trauma”. Stay tuned!

And as ever, this information is not a substitute for mentorship or supervision. This is intended for use in supporting behavior analysts to reach out to their own networks and supervisors and mentors, growing their boundaries of competence in an ethical and responsible way.

May we all keep expanding our repertoires.

 

Ethical Friday presents: The power of a Worst Case Scenario

04 Friday Aug 2017

Posted by in adults, Behavior Analysis, Community, ethics, job aids, risk assessment, safety skills, supervision, teaching behavior analysis, teaching ethics, Uncategorized

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Picture the worst that could happen.

Can you even imagine it?

And if you’re a seasoned therapist or behavior analyst, how do you communicate about this with your students and supervisees, who almost certainly can’t really go there?

If you’re like many of us, you don’t know what you don’t know. Suppose a client wants to gift your staff a gourmet coffee gift card, or a mother wants to step out quickly to get her dry cleaning. “It’s a five minute drive, I’ll just be a second”, she calls, as you work with her child in an upstairs therapy room. “No problem”, you start to call… but your ethics bone starts to tingle. Surely you’re over-reacting. What, if  anything, could go wrong?

When the worst case scenario relates to our vulnerable clients affected by trauma, the consequences may be even more dire– and yet, those who haven’t faced the possibilities may not recognize the dangers.

Should I accept this client in foster care with severe challenging behavior and a history of abuse although I have never treated similar cases? Should my agency supervise our new BCBA to take on a new trauma case (we have funding, after all) when we haven’t experienced this situation?Danger sign

For those of us tasked with supervising and teaching others, or working with families, we can help students, supervisors or parents picture the worst case scenarios so they can better prepare for, predict, and prevent dangerous outcomes. The Compliance code helps give guidance and rules that we follow, but for those of us who have NOT encountered situations that make us keenly aware of the reasons for these, some of the code items may seem “nit-picky” or unreasonable, and may be disregarded in a dangerous way.

To support our own cases and our supervisees where it counts, we must have a wealth of experience, stellar training that exposed us to a variety of worst case outcomes and possibilities and some solutions, or a great imagination- and a few good teaching and documentation tools.

I get a new wake up call every semester I teach ethics students about the origins of Behavior Analysis’ Ethics Code, which was spurred in part by atrocious, life changing and widespread abuses by those doing “behavior modification” in recent decades.

When I ask “what do you think? Could those things ever happen here?”, Continue reading →

Resource Wednesday: How do you document risks?

02 Wednesday Aug 2017

Posted by in adults, Behavior Analysis, Community, Education, ethics, job aids, risk assessment, supervision, teaching behavior analysis, teaching ethics, Uncategorized

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Many behavior analysis supervisees, students, and even young Board Certified Behavior Analysts (BCBA’s) have not yet obtained proficiency communicating with their clients and agencies about risk assessments, and may even lack the experience or training to use or document them in their own practice. Yet, a risk assessment is required by our Compliance Code (for example, see related items 2.09 c and d, or items 4.06-4.07), and the need for this skill is evident in the Task List (see C-01, C-02, and C-03).

As a consultant and an instructor for a university’s course sequence toward certification in Behavior Analysis, I use the Bailey and Burch text on ethics as a resource both for my students and for my practice. Several editions of this text mention and describe a Risk Assessment Tool which is not only necessary and required, but can also be a powerful decision making tool for teams, supervisors, agencies, and even families. When services are discontinued after barriers to service have been repeatedly encountered, supervisors and the court systems value evidence that the behavior analyst documented and discussed the risks and barriers with a family or team. Also, lives might be saved by considering the short and long-term risks before moving forward with an intervention that is at best, inappropriate, and at worst, dangerous. Risk assessments can facilitate otherwise difficult conversations about risks (or benefits) to a client, family, team, agency, system, or even a consultant’s reputation and credentials.

So what tools do YOU use, and what are those used by your team? Kolu and Winn (2017) presented tools for our work, based on something developed in our consulting practices. First a Risk versus benefit flowchart helps walk a supervisor, team, agency or family through a sequence of questions. Then the Risk Assessment Tool helps keep track of the answers, and can be used to facilitate a discussion with families and teams. When making a tough decision, it helps to ask about the short- and long-term risks of doing “the current option” or doing “something else”, and weigh these against the potential benefits. Should my family pull our child out of a school where he is not really benefiting from education but has immense social interaction opportunities? Should I stay with this employer billing in a confusing and possibly unethical way, or start my own practice? What should I consider when approached by a long-distance supervision client whose client caseload doesn’t really match my skillset?

And as the Compliance Code makes clear, we should be continuously asking, what is the best treatment recommendation, given the possible options, the current environment, resources, and the risks and benefits?

With these questions and more, a risk versus benefit assessment can be extremely informative, helpful, and may even be required. Know the requirements, and then assess, document and communicate about the risks. It might just save your credibility one day when you are called to testify. (We all think it won’t happen to us, until it happens to us.)

Need a tool to document your risk versus benefit results? Download this Risk Assessment Tool and let us know your suggestions or what kinds of decisions you use it for.

Email us if you’d like a word version of the form that you can use to fill in with your team or agency. And if you’d like to share, let us know what YOU use to document risks.

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

01 Tuesday Aug 2017

Posted by in adults, Behavior Analysis, Community, enriched environment, functional alternative behavior, self injurious behavior, trauma, Uncategorized

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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 →

Do you wonder why they wander?

09 Thursday May 2013

Posted by in Autism, Behavior Analysis, Community, elopement, safety skills, Uncategorized

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Recently Brenda, a mom and autism social media specialist, posted a story to her website http://autismbeacon.com/, originally shared by a news organization. The story led with a terrifying statistic: according to the National Academy of Pediatrics, nearly half of children with autism will run away before their 17th birthday. However, according to AWAARE, or the Autism and Wandering Elopement Initiative, a poll conducted 5 years ago found 92% of parents reporting “a tendency to wander” in their children with autism.

Parents of children with autism have had to create their own networks, do their own research, gather their own information, be their own advocates, lobby organizations for the similarly needed but unfunded support as persons with other challenges receive. Simply put, these families have had to be the change they desperately needed, which Brenda’s website (and her activity in additional social networks) illustrates. Many of Brenda’s followers have responded to her article post by sharing their suggestions, tips, and resources for elopement. I appreciate all of them, and have integrated many into my own practice or conversations with families.

So here are mine.

  1. At any level of your involvement, know what YOU can do to prevent and respond to elopement. Families can teach safety skills and do preventative training with all family members and the community. Community leaders can advocate for mandatory training in nonviolent crisis intervention, responding to community safety alerts, warning signs in neighborhoods, fences on playgrounds at churches or schools, and awareness campaigns and meetings. School professionals can learn to not take it personally when a child’s parent demands in his IEP meeting that we need a fence around his playground because paraprofessionals might not be fast enough to prevent his running into the street.
  2. Understand reasons individuals might run away, elope, or bolt. As with any behavior used by an individual with autism, elopement often occurs to get away from a situation that is challenging, aversive, or overstimulating. Elopement also occurs to go toward a situation that is more pleasant, familiar, calm, or interesting. Does your student have a way to request visiting his favorite spot or a way to communicate that he needs to leave? Do others recognize her signs of distress that we might consider “precursors” to elopement? Do others in the family and community recognize how to interrupt a possible elopement and redirect to safety? Is everyone trained in nonviolent crisis intervention so that the child is not handled in a way that makes a dangerous situation even worse?
  3. Know which behaviors you need to teach. Teach family members to reinforce these behaviors often enough for the learner to master them.
  • Responding to safety questions: When the child is very young, we can begin by teaching children to respond to the sound of our voice. At first, it’s a safety skill to look when a parent calls our name, or to come nearer when our name is called. If your child is vocal, we can teach vocal responses to social safety questions. When mom calls “Danny!”, does Danny call back “I’m over here”? There are different levels of each of these skills, and as a student learns more sophisticated ways of answering questions, we should continue to practice safety questions. Can the child answer what’s mom’s name?  Can he answer where he lives?
  • Learn who the community helpers are in our environments, and where they are located: We can teach children to recognize community helpers, and later, what to do if they see unsafe situations.
  • Teach safe behavior: Does the child consistently look for an adult and ask prior to leaving the house? Does the child request a parent or sibling when he wants to take a walk, or go play outside? Beginning when the child is very young, we can teach him to look around and see an adult’s face before starting to do an activity where supervision is required. When one child was very young, his team placed a picture of his face on every door in the house- EXCEPT the back and front doors, and the door to the basement. On THOSE doors, we put a picture of the child with his mom. Every time we went out that door, we tapped the picture and said “We always go out THIS door TOGETHER. Where’s mom?” and we taught the child to go get mom’s attention. After that, they went outside together.  Does the student stay close when out with others? Does the student seek an adult if he gets separated from the group? Just like the research suggests, students CAN learn to do this- but they need serious practice under conditions very similar to the real thing (see this blog for an example)
  • 4. Prevent, prevent, prevent.
                      • Not once, but THREE times in the past year, I have heard a family say something like this: “I didn’t think he would leave, but after we found him down the street in a neighbor’s yard, we installed fingerprint locks on all the doors.” Listen: If we know 92% of parents report their child with autism occasionally wanders, it’s just a matter of time. If your child hasn’t run away yet, fantastic! Order locks today. There are many varieties of locking mechanisms that prevent leaving without someone else in the house hearing it. Consider whether your family needs bolts that prevent doors or windows from being opened, or other mechanisms that alert you or the police when a door is opened when  the security system is armed.

5. Research what other parents have done to prevent. Consider make an outing plan, including having a package of materials ready. If your child goes into the community, which adult is responsible for monitoring his location? Where are the safety phone numbers? Does he have activities with him that he can use to calm down if he becomes distressed or if he is in a situation he finds overwhelming or overstimulating? Where will he go if he needs a break? How will he find the needed information if he forgets your phone number? Does your community participate in Project Lifesaver? http://www.projectlifesaver.org/

6. Understand there may be help waiting for you. If your loved one is on one of the waivers supporting children or adults with special needs, they may be able to get locks or security systems funded. There are programs out there waiting to donate a fence, a lock, or even money for training.

7. Tell someone you’re concerned. Many families report they never received advice from a professional, or never discussed with their pediatrician that elopement was a concern. We need to educate pediatricians and other providers to ask about this. Primary care providers can collaborate with specialists to prevent dangerous behaviors, but this can only occur if both parties know they need to talk to each other.

8. Be aware of organizations that can help. Here is the Frequently Asked Questions page for AWAARE. You can also check out what other agencies have compiled to support families.

http://card-usf.fmhi.usf.edu/cardpubs/PLS_WanderingPreventStrat.pdf

http://nationalautismassociation.org/resources/autism-safety-facts/

http://www.projectlifesaver.org/

9. Know the research and understand that there ARE evidence based ways to teach safety skills. This article is a great example. This article shows the effectiveness of Behavioral Skills Training to teach abduction prevention skills in children with autism, and the results of teaching were maintained at follow up checks after the training had been completed. This was published in the Journal of Applied Behavior Analysis by leaders in the field of behavior analysis and used instructions, roleplay, modeling and feedback to teach a skill all children need, especially children with increased risk of running away.

 Thanks for reading. We’d love to hear your own tips and stories.

Job Aids: On Compassion, Visual Aids, and Individualizing support

06 Wednesday Mar 2013

Posted by in Community, job aids, play, Social Interaction

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A family member leaves a job aid easily followed to use technology while the "savvy" person is away

A family member leaves a job aid easily followed to use technology while the “tech-savvy” person is away

A separate job aid for turning off the system

A separate job aid for turning off the system

To begin, it is helpful to understand that although behavioral support can often be widely useful, some strategies are perceived as “for autism”, “for children”, or even “for parents only”.

At Cusp Emergence, it’s about relationships– whether with our peers, employees, employers, family members or significant others (or even ourselves).

While today’s idea (the “job aid”) is often linked with the workplace environment, this article is  about compassion and individualized support. Perhaps you’d like to experience this article as a challenge you to find yourself in one of the stories even if this week’s idea doesn’t seem immediately related to your life’s work.

Bonnie and technology: Bonnie used to avoid technology while her housemate was away. She described herself as resentful that she was often bored, never played a game by herself, or turned on the complicated computer-controlled television while alone, and claimed she never had the opportunity to learn how. Her roommate dominated the remotes when they played together and she always felt it was useless to figure out herself. It sounded strange to her friends, she knew, that she couldn’t work it. But she never had the opportunity or need or desire to do it anyway.

Joey and laundry: Joey never did laundry. Why should he; his partner (or even their son, who enjoyed that particular chore) usually did it. Sometimes he resented his slowly shrinking jeans, and often his wife tried not to resent the fact that Joey never helped. But it was honestly quite complicated, and past attempts had not gone well, producing pink underwear for everyone in the family, or shrunken, discolored sweaters.

Benny and the restroom: Benny was 15 years old and growing, and unlike most of his family and friends, he had never mastered the final steps in his toilet routine. He attended the special education program at his local school, and his paraprofessional often needed to stand at the door asking if he needed help. He usually came out with his pants down around his ankles and was instructed and guided back to the bathroom, where he was instructed to pull up his pants and turn off the light before once again entering the classroom. Often he yelled “Go away!” and slammed the door when his paraprofessional entered to assist him.

How are these stories related?

  • First, they represent situations in the client has no physical limitations preventing him or her from accomplishing the task. In addition,

  • The stories all involve communication partners, life partners, or an activity partner completing some or all of the task involved, instead of the client completing it himself or herself.
  • In each of these situations, there was a “learning history” in which the partner had TRIED to communicate how, why, and when to do these tasks. But the communication had not been effective! Parents and partners often try repeating instructions, yelling, or standing beside their partner naming every next step.
  • Finally, these situations all hold hidden potential payoffs if clients learned to do these things themselves.

Consider:

  • If Bonnie used technology by herself, she could have a greater variety of enjoyable things to do while her partner was away. She might be able to develop individual interests. She might have time to practice alone and therefore enjoy the activity even more when they did it together later. She could feel good about being an active participant in the household.
  • If Joey did the laundry by himself, he could enjoy wearing what he wanted or needed to wear without someone else needing to do it, having to stop something they needed to do in order to fulfill his request. If he did it himself, he could have access to clean clothing that he had picked out. He could feel good about contributing to the household.
  • If Joshua finished his routine in the bathroom and came out to rejoin the group, he could enjoy doing it by himself. He could feel good about doing it himself and joining the social expectations of his group. He could immediately transition to a new activity with his friends, instead of feeling embarrassment as others laughed or pointed to his pants around his ankles.

In every case above, job aids provided compassionate, individualized assistance to bridge the gap between the need to complete a task, and the actual execution of that task.

Toward solutions

Bonnie’s partner whipped up a set of easy-to-follow job aids that helped her navigate quickly through technology that previously had seemed mystifying. When her partner was out of town, Bonnie now used it herself and enjoyed the freedom.

Joey’s partner posted easy job aids (post-it notes) above the laundry machines. When his partner was out of town it was easy to see what to wash together or separate, which buttons to push, and how hot or cold the water needed to be.

Joshua’s paraprofessional and teacher posted reminders near the bathroom door that visually reminded him to check his pants and zipper and turn out the light.

Here are some of the potential benefits Bonnie, Joey, and Joshua may begin to enjoy:

  • Ability to meet a need or want alone
  • Gain more control over their life
  • The chance to gain mastery over something they will likely need to do in the future
  • The ability to rely on themselves instead on someone else
  • Increased range of options at any one time
  • Decreased dependence on others
  • Dignity, autonomy, confidence, etc

A final note: After we begin to do more for ourselves, it is compassionate for our life partners, parenting partners, communication partners, peers, or providers to consider the importance of whether, how, when, and why they will fade out their assistance. More to come on this topic in a future post!

HELP- There’s a monster in my toybox!

06 Wednesday Feb 2013

Posted by in Autism, Behavior Analysis, Community, Early Intervention, Education, play, Rett's, Social Interaction

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Part 1 of Series: Helping caregivers and teachers support children to meet fearful challenges

Shannon’s Story

Shannon and Gina sat in a free play area near their preschool teacher. “SQUAWK!” came the loud animal sound when Gina pushed the button on a new toy. As the toy noise grew louder, Shannon’s eyes opened wider and wider until she froze, a look of sheer terror on her face. She started to back away and wailed, sinking onto the floor and crying.”Oh no,” gasped her teacher. “Put that toy away!” While Shannon cried, their teacher pulled Gina aside and said “I’m sorry, but Shannon is afraid of that toy. Next time we will remember to play with it when she’s in another room.”

Devon’s Mom’s Dilemma

Devon and his mom Jenny walked down the sidewalk with their next door neighbors. As they neared the playground, Devon suddenly grabbed his mother’s skirt tightly and shrieked. “NO BIRDIES! NO DOGGIES!” At this, Jenny’s face grew red as she picked up Devon and held him tightly. She looked at her neighbor helplessly and apologized: “I’m just so sorry… We can’t go any further with you. He’s been doing this every time. He has this issue with ducks and dogs and birds now. I think even if we don’t see one he’ll be afraid one might get him.”

Toward more supportive, long term strategies

At first, it may seem supportive to shield a child from their fears.

But both teachers and parents want and need solutions that will ultimately help children face and overcome challenges. So when there is a question, especially when a particular strategy feels good or soothing or produces relief in the short term, it’s a good idea to ask ourselves, “is this procedure also supportive in the long term?”

If not, how can Shannon’s teacher and Devon’s mom learn a more therapeutic approach? And why is that important? Let’s review these scenarios again, to better understand why and how to take a supportive long term approach. What might Shannon’s interaction with the toy, and Devon’s interaction with park creatures, have in common?

First, these scenarios are similar in how they are resolved.

In both interactions, a pattern is being established: the child first encounters a fear, or “fear inducing stimulus”, and then others respond by helping the child to escape or avoid it.

Second, these scenarios are similar in how they affect other people.

From the perspective of Shannon’s peers, her inability to play with that toy meant that they couldn’t either, at least not when she was around. From the perspective of Devon’s neighbor, the neighborhood kids couldn’t play with Devon in a park. This concept, the idea that Devon can’t play in the park, and that Shannon can’t play with toys that make animal sounds, limits interaction opportunities. It also risks changing the way peers think about approaching Shannon and Devon.

Third, these scenarios have similar “reductive” effects on the children’s “repertoire” or world. Have you ever met a family member or caregiver who says, “we used to love to do ___” but we can’t anymore”? Perhaps a family used to go to the movies, or out to dinner, or have friends over, or go to museums, or go hiking. During the initial conversation with families, that blank is filled in by all the things they need to avoid now because of fears of how people will react, fears that it won’t go well, fears that it will be too difficult, embarrassing, or noisy. Often those fears are REAL at the time! Perhaps people DID stare and talk at church when a family’s child loudly refused to stop standing on the pew. Perhaps all the teachers and mothers DID stare and talk in the parking lot as a child disrobed in public and threw a tantrum before leaving the store. Perhaps it WILL be difficult, embarrassing, or noisy. But keep reading. We can do this together.

Fourth, understand it’s a cycle: handling scenarios by allowing “fear habits” to persist, allows learners to skip learning opportunities and continue to repeat old harmful habits instead.

If Shannon and Devon can’t play with certain toys or in certain places, they have reduced opportunities to learn about those things and places, and no opportunity to learn that they are NOT scary.

Fifth, if these scenarios become habits, they make it more difficult for the child to handle or face similar or other fears in the future. These situations do not teach the child how to be more successful in coping with scary, new or different events.

Bottom Line: Instead of stopping or thwarting learning opportunities, we can expand them.

Come back Friday to learn how!

Build-Your-Own-Workshop

04 Tuesday Dec 2012

Posted by in Autism, Behavior Analysis, Community, Education, Uncategorized

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Cusp Emergence is excited to offer a Build-Your-Own-Workshop feature to families, groups, and communities.

1. Consider what your workshop will address, and why you need a workshop.

  • Need to learn general ways to provide social, emotional, and behavioral support?

  • Need to practice behavior management for specific behavior challenges?

  • Need to teach your family or group about managing a particular behavior challenge?

  • Need to support a student or family or community member with cognitive or developmental challenges?

  • Want to know more about how social-emotional and behavioral wellness relate to physical health?

  • Want to learn a particular technique (for example, for teaching skills or shaping language, appropriate behavior, play, or social interaction)?

    2. Think about who will participate, where you’d like the workshop, and how long your group would like the workshop to be

    3. Contact Cusp Emergence!

CONTACT CUSP EMERGENCE:
720.263.CUSP