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Monthly Archives: March 2013

Don’t make me eat a broken hamburger in public!

29 Friday Mar 2013

Posted by kolubcbad in Uncategorized

≈ 2 Comments

Tags

early intervention, food selectivity, generalization, preferences

ImageWhen I read the poignant story of the broken hamburger, my eyes teared up for two reasons.

At first, they brimmed with gratitude– the collective sort of gratitude of the hundreds of thousands of Facebook users who “liked” the story about the kindness of a chain restaurant waitress.

Thank you, waitress, who heard a mom apologetically request a second hamburger for her young daughter affected by autism.

The original burger was “broken”, she had said, and her daughter could not eat it.

Consistent with the pattern discussed in diagnostic manuals and tools used to assess or document the presence of autism, or behaviors consistent with that label, the young girl in the story “preferred sameness”, and had difficulty participating when the environment contained a salient difference– even when that difference was presented in the context of a hamburger (usually a highly preferred, even a ‘favorite’, food).

The young girl has not yet learned to approach– and to enjoy– a hamburger different from how it appeared in her normal routine.

And it’s critically important not to judge. First, the list of what we don’t know is long. For example, we don’t know, but it may be progress just to sit with the family eating at a restaurant. We don’t know how hard they may already have worked, how far their family has already come, or whether tremendous problem behavior used to occur during dinner, and a request for ‘new hamburger, mom’ was a triumph. Learning to request a break, help, or the little things that ameliorate our daily troubles like a snack, a special blanket, or a teddy bear, takes lots of practice and shaping. Second, peculiarities of childhood eating are not so unusual; a family member diagnosed with nothing that I know of, used to refuse to eat the ‘handles’ on her french fries. That’s a lot of wasted potatoes, but I’m pretty sure her mom was choosing battles carefully.

How we address this situation depends in part on how we frame it.

Do we fight battles FOR our children, or WITH our children? Is food refusal a temporary battle to be won at each meal anew, or is food exploration and acceptance a new path to be walked with families?

Back to the story’s intent. Consider the perspective of the waitstaff, who is tasked with responsibility of honoring most appropriate customer requests. Upon reflection, I remain touched by the waitress’ readiness to honor the request so the child might enjoy the hamburger.

But my eyes also teared up for another reason.

Sometimes, children live in an environment indefinitely where most things in their food repertoire don’t change, and as a practitioner, I’ve observed students go for years not being challenged while families suffer in silence. How many dinners will she endure waiting until getting home to eat, because the favorite dish was not on the menu? How many times will her family go out without her, or select to not try going out, because there may be no appropriate foods for her on the menu? She may not have the opportunity to encounter (and eventually approach) diversity, and avoidance may be strengthened each time her parents’ requests to make the food a certain way, are honored in front of her. She may even avoid birthday parties or the community, because the food and setting is so different, and there has been very little practice to become comfortable in “different” situations.

As parents of neurotypical learners often point out to me, and as the little girl in my family illustrated, preferences don’t have to make sense, they may be comical at first, there is a broad range of “normal”, and it’s up to each family to decide how to, whether, and when to address the issue of food selectivity. Does the child have such a limited range of preferred foods, that a nutritionist and doctor are concerned?

Here is a good question to ask: how does the child handle being “challenged” or presented a challenge food? Does the child prefer something so much she will refuse (and refuse to try) every variant, to the point of disruptive behavior?

If the answer is “yes”, no matter the profile of your learner, it may still be helpful to address.

We can provide practice situations in supportive environments when sampling and practicing and trying differences is made comfortable, expected, familiar and do-able.

To families raising children with limited variety of food acceptance, or who eat very low volumes of foods or eat around only one or two family members:

  1. Practice eating with others before being shocked and disappointed that the child doesn’t eat the first cupcake she’s ever seen at a birthday party.

  2. Practice situations that teach us broken hamburgers taste the same as whole ones.

  3. Practice variants of seating arrangements, food that comes on different plates and with different utensils, and foods that arrive “contaminated” with a sauce (to use the phrase of one child in feeding therapy).

  4. Doing it for the first time in a familiar environment also makes it easier, and then practicing little by little in “the real world” helps.

Cusp Emergence hosts “snack parties” that provides practice for children learning to eat in community settings or eat with others before it is time for preschool or school lunches and snacks.

It is often helpful during the transition phase, as our clients transition away from early intervention to preschool, or change from weekly feeding support with a therapist to parent-only support 

Bottom Line:

You can do it, and we can help. Practicing the hard thing makes it easier. And practicing across multiple environments and situations makes the new skill stronger!

If your family member is in feeding therapy, ask the practitioner how they are programming for generalization.

Don’t just train and hope… program actively for generalization.

Lessons from a Sensory-Friendly Stylist

20 Wednesday Mar 2013

Posted by kolubcbad in Uncategorized

≈ 3 Comments

Tags

autism, community, haircut, self-help, sensory

ImageIn a word, this stylist notices.

 As I sat in her chair and we talked, we learned about each other. She learned that I worked with persons with autism across the spectrum and across the lifespan. She learned that I was interested in her experiences with her own family members and clients with autism.

 And I started to learn more about “sensory friendly”.

 What does she notice? On one occasion, a client affected by autism sat in her chair. She noticed his hot neck, burning up and red, creeping up from his collar to his ears. She gave him a cool towel. He visibly relaxed and softened into his chair. As she provided more and more ways for him to be comfortable in her chair, the stylist also noticed what he was interested in. She shares his enthusiasm for Star Wars and the two discuss it whenever he gets a haircut. She joined with him in discussing something that interested him, and she “took his mind off” the haircut.

He learned to tolerate haircuts in his chair and now occasionally turns down the cold towel.

How important is it to be “friendly” as a business? Maybe it doesn’t seem like a life-or-death situation.

But as any parent whose child screams bloody murder at the mention of a haircut, or a dentist, knows– it feels like it sometimes. And postponing dental work until a child can be put “completely under” is expensive, and doesn’t teach coping skills for going to the dentist through the lifespan. I know many parents who do their child’s haircut in the basement, where no one can hear the screams, and where the sensory stimulation and its fallout is more controllable.

We’re fortunate in the Boulder and Broomfield area to have several excellent pediatric dentists in our area who practice friendly supportive dentistry. There are “sensory friendly” films, and autism supportive places to eat.

How is it in your area?

If you’re a business, is there a small way you can “be the change” you need in your neighborhood?

Thanks, Felicia at Finishing Touch Spa and Salon! 

 If you’re a community member, can you advocate for those small changes and value them when you see them? (The website myautismteam has a provider list and online family network).

Closing comments

“Sensory” and “Behavior” are both misunderstood concepts, especially when people equate “sensory” or “behavior” to something intrinsically negative, or when people use “sensory” or “behavior” as an explanation for something else. When someone says “he had a behavior” or “it was sensory”, we haven’t explained anything.

Perhaps when a behavior analyst pays attention to how a person interacts with his environment, that behavior analyst is interested in the sensing of stimuli.

Perhaps when a sensory friendly teacher pays attention to how a student is affected by sensory stimulation, that teacher is interested in behavior.

The sensory-friendly stylist paid close attention to how her client’s facial expressions, body rigidity, tenseness, nervousness, fidgeting, breathing, and rapidity or fluidity of speech changed when she modified or provided sensory input.

 In a word, she noticed.

Got PRT?

13 Wednesday Mar 2013

Posted by kolubcbad in Uncategorized

≈ Leave a comment

Tags

autism, evidence-based treatment, pivotal response treatment, pivotal skills, PRT, social interaction

Behavioral intervention can impact brain function! Does your BCBA, school, or home behavior team use PRT?

Image

Have you heard?

Many of our community partners recently shared the new article on how behavioral intervention for children with autism can impact brain function. But what kind of behavioral intervention was actually studied? This was NOT 20-40 hours of discrete trial therapy per week. No, the children benefiting from behavior intervention received 8-10 hours weekly PRT, or Pivotal Response Treatment. Does your BCBA, school, or home behavior team use PRT?

What is PRT? PRT stands for “Pivotal Response Treatment” or “Pivotal Response Therapy”.

PRT is making news again because of growing evidence that while effecting change in the lives of children, it may also correspond to changes in their brains. But it’s not a new treatment and has been used for decades to support learners with autism. PRT uses the child’s own interests as motivation for learning more. Using PRT, students can learn how to learn from their environments and find social interaction more meaningful. PRT involves using naturalistic, family-friendly, strategies to strengthen skills that are “pivotal” for the child’s development. For example, a therapist or parent may strengthen skills that are critically important in many contexts, such as responding to multiple cues, initiating activities, and making social initiations. Outcomes of targeting pivotal skills include widespread improvement in additional areas of development, including social interaction, communication, and behavior. Ultimately, PRT is a well-studied component of behavior analytic treatment that can be used in natural settings and implemented by family members, and therapists can easily assist families to integrate PRT into their daily activities.

Learn more about PRT

An earlier version of PRT was known as the “Natural Language Paradigm”. Developers of PRT, Dr. Robert L. Koegel and Dr. Lynn Kern Koegel, have consistently produced research showing the effectiveness of strengthening pivotal responses important to social interaction and motivation. To find out more, please see their website (http://www.koegelautism.com/) for information, articles, resources, books, materials, and educational opportunities.

So how are the brains of children with autism changed by PRT? And does PRT take years to show effectiveness?

 Avery C. Voos, one of the lead authors involved in the study, stated: “The cool thing that we found was that these kids showed increased activation in regions of the brain utilized by typically developing kids.” This is consistent with reports of parents of children involved in PRT, who often notice improvements right away as they learn to incorporate the strategies in their daily lives. Corresponding changes in children’s brains likely occur that support the lasting changes in their behavior, but only recently has research directly supported this notion. Voos noted that “[a]fter four months of treatment, they’re starting to use brain regions that typically developing kids are using to process social stimuli.” The study collected information before and after children received 8 to 10 hours per week of pivotal response treatment. Although the study had many limitations, it contributes to a growing body of pioneering research exploring how and why behavioral intervention can have long term beneficial impact. To us at Cusp Emergence, one of the best reasons to use PRT is its social validity and acceptability to the parents and children with whom we’ve consulted.

Bottom Line:

Family members are easily trained in the paradigm by trained professionals or a combination of using manuals and coaching. Workshops in this technique are offered worldwide, but your local behavior analyst is often familiar with these techniques. Know a school, behavior analyst, team or family who could benefit from additional training or consulting to develop their PRT skills or apply them for a particular learner?

Contact us!

 

 

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

06 Wednesday Mar 2013

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

≈ 1 Comment

Tags

individualized support, job aids, neurotypical, visual support

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!

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