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Learning more each year about autism

03 Wednesday Apr 2013

Posted by kolubcbad in Uncategorized

≈ 1 Comment

Tags

autism, early intervention, peer-mediated interaction, peers, social interaction, wandering

Image

Just in time for Autism Awareness Day yesterday, a new article highlighted ten things we didn’t know last year about autism. At Cusp Emergence, much of our contact is with families of young children who are either newly diagnosed, are in the early stages of treatment, or are transitioning to school placements. We are challenged by these findings daily, and we need to find new ways to help families and providers make the most of early years. You can link to the original article here. Below are some of the findings, with links to the source article for each. 

“1. High-quality early intervention for autism spectrum disorder (ASD) can do more than improve behaviors, it can improve brain function. Read more.” 

The study above examined ESDM (Early Start Denver Model) at 20 hours per week of therapy. Earlier this year we linked to additional evidence showing effects of pivotal response therapy, another set of behavioral interventions, on brain activity.

“2. Being nonverbal at age 4 does NOT mean children with autism will never speak. Research shows that most will, in fact, learn to use words, and nearly half will learn to speak fluently. Read more.”

Many students whom we have been fortunate to support, have gained language after intervention, after histories involving long-term periods of nonverbal communication.

More importantly, virtually ALL learners can make progress in functional communication, when the functions of their difficult behavior are carefully examined in the context of a strengths-based assessment. For an individual student, we discover what she needs and wants to communicate, and therapy then expands her access to, and engagement with, the world around her.

Why is it so important that we understand ALL learners can make progress with functional communication? Because it is so important to keep trying, to not give up. Years ago in a robust metroplex school district, I was an undergraduate, un-schooled, interventionist level trainer assistant for special education teachers participating in an ABA training. My first task seemed daunting: approach a student in the corner, sitting in a wheelchair alone, to discover whether she had a communication system at school, how she used it, and determine how to support teachers moving forward. This beautiful high school student remained belted in her chair looking vacantly off to one side most of the time, without a PECS system or vocal or verbal repertoire that the teachers knew of. As I built rapport with her, pairing myself with her favorite songs as we sat together in her loud classroom, I noticed she moved her hands a few seconds after I moved mine. I was practicing some basic signs as I attempted to establish communication with her. After a few minutes I noticed she was moving her hands “intentionally”, and that the signs she was making looked sort of like mine! At least, they were shape-able. We began to teach her basic signs for “music” and “eat”, and within the first week of our summer training, her teachers and paraprofessionals were struggling to grasp that this whole time, after years of sitting in her wheelchair not using expressive language, this 15 year old student was capable of sign language to communicate at least 5 basic requests. Was she capable of this the whole time? She had not used much problem behavior and, the teachers readily admitted, was not “a squeaky wheel” and did not demand much attention. 

“3. Though autism tends to be life long, some children with ASD make so much progress that they no longer meet the diagnostic criteria for autism. High quality early-intervention may be key. Read more.”

All students can learn. And when learning starts early, we often get farther!

How do you meet diagnostic criteria? By acting and behaving in ways that are consistent with the diagnostic criteria. Currently, there are no reliable biomarkers or blood tests that denote “having autism” or show where someone is “located” on a spectrum.

But while this fact is indisputable—that some children with ASD do make so much progress as to be “distinguishable” from other children who never met the diagnostic criteria—it is important to support families to understand the true life long path through supporting a family member who may have autism.

It is important to understand that there may always be new challenges that come with development, exposure to new social environments, and learning. As a parent of an 18 year old expressed to me recently, being able to plan for transitions requires being realistic and supportive even when we hoped it would all be over by now. 

“4. Many younger siblings of children with ASD have developmental delays and symptoms that fall short of an autism diagnosis, but still warrant early intervention. Read more.” 

One of the most pressing questions may be, if the delays and symptoms of younger children fall short of a diagnosis but warrant intervention, how do you fund it?

Recommendations:

  • Insure all families and practitioners in your practice or community understand that having an older sibling with autism is a risk factor for the younger siblings. Younger siblings can be referred to early intervention (in some cases, funded by a state fund in which the child can access ABA (sometimes under the label Social Emotional Support), OT, SLP, and other services to prevent falling behind in language development and social interaction.
  • Often, having an older nonverbal model in the home can prevent younger children from using skills that would otherwise emerge sooner. For example, a younger child may imitate the behaviors that result in meeting his older sibling’s needs. The younger child may imitate pulling parents around by the hand, tantruming to access food, toys or attention. The younger child also may not have adequate verbal models. So it is recommended to use powerful strategies for increasing language, with younger siblings of children with autism, even if those siblings  have no diagnosed delays.
  • Families can attend a workshop and learn skills to arrange their home environment to promote language and insure they respond consistently to behavior.
  • When families begin providing expansions and elaborations on every utterance, and using contingent access to help their children learn social interaction as a basic part of getting needs met, younger children who have been slow to develop speech, often start to talk more. 
  • If a family is considering preschool, younger siblings may benefit from a stimulating environment where language promotion and appropriate social interaction is built into the daily lives of the students. Integrated preschools for children with autism and their typically developing peers may be good options for siblings of students with autism, as the skills they practice daily at school, will be useful and powerful in their daily home lives. 

“5. Research confirms what parents have been saying about wandering and bolting by children with autism: It’s common, it’s scary, and it doesn’t result from careless parenting. Read more.”

Recommendations:

  • Families can develop a basic family safety plan that includes preventative environmental arrangements (such as latches near adult height to prevent unlocking and opening doors), preventative teaching, responsive strategies, and the family’s emergency plan. They can follow up by educating community members on their family plan, including appropriate law enforcement agencies and a responsible party in any community environment (a school, a church, a grocery store) their family member frequents. Pre-teaching can include establishing high compliance with safety instructions such as “stop” and “come here”, by strengthening these skills when it is NOT a crisis, and pre-cuing, prompting, and reinforcing appropriate behavior at all times to keep the family member ready to use safety skills.
  • Talk to your behavior analyst about how to “bring safety behavior under instructional control” and develop a plan for teaching these skills, if you have not addressed them.
  • Even though schools often refuse to initiate a behavior plan for a student with an IEP until there has been demonstrated danger, learn your rights as a parent by consulting with an advocate or reading. If elopement or wandering has occurred in the home or community, demand your student has an appropriate safety and health plan, and behavior plan with preventative components. 

“7. One of the best ways to promote social skills in grade-schoolers with autism is to teach their classmates how to befriend a person with developmental disabilities. Read more.”

If number 5 was one of the more important points for safety, THIS point may be the most powerful one in terms of potential for social interaction.

At a recent IEP meeting, we listened with disbelief to our client’s school team insist a beautiful 3 year old child simply “didn’t enjoy” his peers’ interaction, so they had given up because it was quite difficult to promote interaction. Instead, they had decided to make his school day one that was filled with 1:1 interaction with an adult. In my experience, while it is true that many children diagnosed with autism do not initially “enjoy” interaction with peers, they begin to enjoy it almost immediately when the peer is the one doing the asking! Much research supports peer mediated instruction as one of the most powerful technologies for teaching students that it is fun, useful, and easy to interact with their peers.

Teachers and schools who would like to learn easy techniques for helping peers learn to initiate to their students with autism, can sign up for the School of Play or ask their local behavior analyst for help.

 

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

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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?

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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!

 

 

Look! I’m playing with a monster from my toybox!

08 Friday Feb 2013

Posted by kolubcbad in Uncategorized

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Welcome back. 

Part 2 of Helping caregivers and teachers support children to meet fearful challenges

Last time, we met Shannon and Devon. When we first met Shannon, she was crying as a peer played with a new toy. Although Shannon’s experience has been repeated with children affected by developmental challenges such as PDD-NOS, Rett’s Syndrome, or Autism, children who are typically developing may also experience a range of responsiveness to stimuli like loud noises or strange sounds. Long-term, it’s supportive to give children resources to handle inevitable changes in their environment, startling sounds like chairs scraping, animal sounds, or other children crying- especially when entering a new preschool environment! Similarly, Devon in the story struggled to face his fears of animals. His mother was afraid to take him to a park because of his fears, and yet she also wondered what would happen one day if he was invited to a friend’s birthday party in a park, or whether he would ever be able to play sports.

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

  1. Resolve situations by providing the child experience successfully interacting with a stimulus he or she once feared. It’s great to “end on a good note”. Shannon’s program provided her many opportunities to push the toy away until she was doing it with a smile or even a laugh. When a given step wasn’t scary anymore, we moved on.

  2. Teach others to support the individual to resolve challenges and communicate (including asking for help) when needed, instead of minimizing the opportunities to interact with the challenge. Instead of moving an object away which looks scary, we can acknowledge what the student is feeling and empower her to do something about it. One of Shannon’s first major steps was learning to reach for a toy and push it away. Instead of screaming and laying down, she began to stay in the situation playing with her own toys. This allowed more teaching to occur. She even learned to take toys that had frightened her at first, and offer them to other peers who enjoyed them. Lessons about taking turns, offering choices, sharing, and helping friends find things, were now able to be enjoyed by the entire class.

  3. Broaden the child’s repertoire, instead of diminishing or limit it. After supportive strategies were used to re-introduce the toy to Shannon, she quickly learned different ways of using it. She eventually requested to play with the same toy that was scary at first. Similarly, instead of refraining from visiting or discussing parks, Devon’s mom learned to provide many opportunities to do park related activities, and Devon ultimately began to enjoy them.

  4. Build in learning opportunities to help the child deal with the fear, making it possible to enjoy activities that were off-limits before. Does the child have the skills to access (or ask for) assistance, a break, materials or calming activities? If the child is practicing something that is difficult, does s/he understand when this try will be over? Does s/he understand what she can do for this try to be successful? Does s/he know what will happen next? Devon had a safe space where he could sit down and take a chill out break if he became too scared to be near the creatures. He learned to request appropriately to leave the park, instead of screaming and kicking and pulling her clothes (which usually happened in the past). He also learned to stay and play for longer periods of time, and eventually was able to play in the park even if a dog played nearby.

  5. Enlist others to help if necessary, to help a parent or other caregiver through stressful or anxiety-involved times as the program begins. If a child has been avoiding or escaping fearful situations by using screaming and tantrums to refuse, it may be necessary to enlist the support of a behavior analyst or specialist to identify specific strategies and build a program helpful for the individual child and his or her history. And parents can face challenges especially when helping a child to follow through on trying a thing he previously refused with inappropriate behavior. “Helpful” community members may cause further distress when parents help their child face these fears in public. Devon’s mom introduced him to the park again during visits with a behavior analyst providing supportive coaching. But this can be practiced with a sibling, babysitter, parent or grandparent, too. Similarly, Shannon’s parents and preschool teachers were all able to implement supportive procedures after a quick review with her behavior analyst.

Bottom Line: Facing the difficult or scary thing will make it less difficult or scary, and is a great thing to model for the children and caregivers around you.

Final Notes: Care should be taken when introducing an individual to new skills, new environments or toys, or when reintroducing ones that have been paired with fear or anxiety. Individuals and their families select learning targets that are useful and valued by their family and community, with input from professionals as appropriate. Some of the additional factors considered by Behavior Analysts when developing goals and helping caregivers strengthen skills, include whether others in the individual’s natural environment will support task being taught and whether the task is needed in the individual’s life. For example, a fear of the dentist might be more important to address quickly than a fear of the dinosaur museum, although both could be addressed using similar procedures.

As always, the scenarios represented in this series are general and are not recommendations or procedures for your child. Behavior treatment should be implemented under the guidance of a qualified Board Certified Behavior Analyst or other appropriate professional if needed.

A family finds ways to honor their resolution: Increase inclusion this year

10 Thursday Jan 2013

Posted by kolubcbad in Uncategorized

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Last time, we heard about a family with three children. Their parents reported feeling pulled in all directions.

Identifying a need: better inclusion of children with special needs in their families

We asked the family to identify the biggest area we could make an impact. The family thought about it, and decided they most needed help involving their 7-year old child with special needs, in the family’s after- school routine.

Originally, they were concerned because their home felt chaotic every afternoon before dinner. Their child with special needs had adopted a routine of pacing around the home, using loud, disruptive self-stimulatory behavior for several hours while his several other siblings did homework together, received coaching on their math problems, and helped prepare the family’s meal. There were many reprimands provided as the child became more vocal, attempted to get attention from his mother while she assisted other siblings, and attempted to gain access to their refrigerator before dinner. The situation normally turned into chaos as the child with special needs began to self-injure, his siblings became frustrated and stormed off to escape the noise, and argued with each other as his parents tried to make dinner while managing the behavioral challenges.

Putting it together

The behavior analyst supported the family to start small, by identifying one family chore the student with autism could do to help the family.

No one had considered this before! The student had never been asked to do chores before. Different family members expressed that they didn’t know it was alright (or safe) to ask their sibling with special needs to do chores. They also expressed that they thought it would just create more problems if they asked the child to help with housework, and worried that it might even be inappropriate.

But by starting very small, and working together, the family discovered the student loved to help.

And the family gradually began to involve ALL their children in the after-school routine.

At first, only one thing changed after school: ALL three siblings were instructed and helped to select a “chore” from a new family chore chart.

Soon, the family reported they felt “more like a family”. But that’s not all!

Meaningful results

At first, the family included choices like “straighten all the pillows in the living room”. This was something the child with autism did ANYWAY! He usually did this during the evening as part of his repetitive routine.

But NOW, after he did it, his family could enjoy and discuss his participation in the routine.

Then, he learned to return to the chore chart after doing his one, easy chore, and check to see what was happening next.

Here are some other ways the student began to be involved more in his family, by altering ONE expectation in their routine:

Before After
School or IEP goals were practiced only at school The student began to practice his IEP goals at home. The opportunity to practice skills in many settings instead of one, and with all his family members instead of just with his teacher and therapist, strengthened the skills.
Greg used to refuse to participate with most instructions, and his mother had stopped instructing him to help out at home because it almost never worked. After Greg learned to participate in a single chore during the family’s routine, the family used a behavior analytic “shaping procedure” to gradually increase the amount of time he participated. He is now participating for 60 minutes with occasional breaks to run around the house. His mother is working with the behavior analyst on how to make her instructions most likely to insure success and participation.
His siblings used to roll their eyes and go in another room when their brother disrupted their homework routines by constantly running in circles in the living room while they worked. Now, Greg AND his siblings find quick “activity breaks” on the schedule between chores or homework. Now, they set a timer for 2 minutes and jog, jump on a mini-trampoline, or do jumping jacks together. Then they select their next task and everyone goes back to work.
His behavior used to seem like “a problem to get rid of”. Greg’s family learned that his behavior was not totally inappropriate- rather, it was often inappropriate to the setting. NOW, they plan in advance to provide times Greg can fulfill needs for motor movement, sensory input, or interaction. Because they actually schedule these things in their afternoon routine, Greg’s needs AND those of his siblings could still be met. Greg gradually used self-stimulatory behavior less and less, and participated in family interaction more and more.
Greg’s mother reported feeling “powerless” and “helpless” and “guilty”, facing the challenge of managing Greg’s behavior while she attempted to help her other children. Greg’s mother reports feeling “empowered”, and she now plans car trips, Saturday mornings, and family vacations with her new skills: She plans in advance how everyone will be involved in the activity, what kind of instructions or breaks or encouragement they might need, and what kind of visual tools would be helpful on the outing. She begins each family outing by reminding everyone of these expectations.

How can your family or community insure a special needs child is included this year?

Your friendly neighborhood behavior analyst is ready to help!

Of Elves and Shelves

08 Tuesday Jan 2013

Posted by kolubcbad in Uncategorized

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Tags

autism, elf on the shelf, holidays, inclusion

In the Cusp Emergence neighborhood, most of the holiday decorations have been put away.

To the families who used the popular shelf elf concept during the holidays: have you put away your elf?

Many of the families we serve enjoyed using the elf and their children enjoyed it too.

Cusp Emergence loves hearing about ways families successfully involved special needs members in their holiday routines. 

In our picture today, this family’s Elf has Autism, just like one of his family members!

Image

Thank you to OperationJack.org for sharing their photo with us!

And have you noticed? In terms of numbers, it’s pretty normal these days to have autism.

Or maybe “normal’s just a dryer setting”. 

But however you think about it, it can be challenging to balance the needs of all family members with the support of a special needs child. How much? How often? When is it alright to let everyone do their own thing?

Tune into our next post, to learn how one family of five faced this challenge two years ago, and resolved to learn to include ALL family members in more supportive ways.

Did you make New Year’s Resolutions?

It’s not too late to commit to finding a new way to foster inclusion in your family.

Using the Reverse Social Story during the Holidays

14 Friday Dec 2012

Posted by kolubcbad in Uncategorized

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Tags

reverse social story, social emotional support, social story

Q&A Series: Parents ask about social emotional support

Today’s Q&A: How can a reverse social story be part of family behavior support around the holidays?

A: A reverse social story helps others relate to our loved ones.

A reverse story is related to the “social story”, but it is not one that your child will use. Instead, it is one designed to help OTHERS relate to your child or loved one.

What’s a “reverse social story” for?

Cusp Emergence uses Reverse Social Stories to address physical, behavioral, social, emotional, memory or cognitive, or a combination of these needs.

A Reverse Social Story facilitates relating to your loved one by using a combination of words and pictures, depending on the audience, that tell a story.

In this story, you can

  • Highlight what your loved one is great at doing
  • Help others understand how to support your loved one’s special need or challenge
  • Name specific ways your child or loved one can be involved and participate in meaningful events and interactions
  • Review specific challenges your loved one faces, and describe to others how to:

talk about these challenges

prevent unsafe interactions

redirect challenging interactions to become more therapeutic and supportive

provide supportive environments during special times or events including:

holidays, parties, family emergencies, babysitting or respite care, trips to the community, transitions, or unexpected changes

How can circles of friends and acquaintances use the “reverse social story”?

Ways people have benefited from the reverse social story include:

  • Family members of a child or family member with special needs read it to prepare for his holiday visit
  • The boss and co-workers of a woman whose son had special needs, read it to prepare for his attendance at a company picnic
  • The preschool staff at a child’s new school read it to prepare for his transition into their classroom
  • The family members of a woman with Alzheimer’s used it to share their mom’s preferences, needs, and locations of special items, with new nursing home staff.
  • The young cousins of a child with Autism learned in advance how to include him in play and conversations
  • The aunts and uncles of a little girl with Rett’s syndrome learned ways to prevent unsafe behaviors while babysitting while visiting over the holidays

Who writes a “reverse social story”?

We can help…

As a behavior analyst and social emotional support provider, Dr. Kolu facilitates writing Reverse Social Stories for clients. Cusp Emergence offers workshops on Writing and Using your Family’s Reverse Social Story.

Or you can do it yourself.

After a brief training on how to write a Reverse Social Story, one of our clients (a mother of a young child with special needs) wrote one of the most useful, beautiful Reverse Social Stories we’ve ever read.

Coming Next: What to include in your family’s “reverse social story”

Today’s Q&A: How can behavior support help families around the holidays?

06 Thursday Dec 2012

Posted by kolubcbad in Uncategorized

≈ Leave a comment

NEW Q&A Series: Parents ask about social emotional support

Today’s Q&A: How can behavior support help families around the holidays?

Q. How can behavior support help families around the holidays?
A. Use this simple strategy: Provide extra practice with safety instructions

Ways to use this strategy:
-Embed instruction practice in games
-Find times each day to use a playful “stop/ go” game with children.
Example:
In a simple “stop and go” game, instructions to “STOP!” or “GO!” (or ANY instruction that rarely gets practiced but is important, like “COME TO ME” or “SIT DOWN”) can be interspersed with fun gross motor, fine motor, or verbal activity.
-The point of the game, is that when the parent or caregiver gives an instruction, the child practices immediately stopping, listening, and doing, in order to experience a fun outcome.
-This game can be used as “priming”, or practicing the safe behavior in a less intense context BEFORE going outside or walking across a parking lot where it is absolutely CRITICAL to follow the instruction.
-Some parents practice “stop and go” listening in the hallway before going on trips to a store.
-Play Simon Says with variations like “mom says”, “grandma says”, “dad says”, “babysitter says”, or “sister says”
-Write funny instructions down and put them in a container. Players take turns drawing an instruction and trying to do it. Players can take turns deciding what the “payoff” will be for following these instructions. For some families and children, it is fun just to choose the snack or hot cocoa flavor for when the game is over. Others may want to choose the next game, choose to earn stars they can trade for free time or their favorite chore, or earn special 1:1 time with a family member after the game.

Ask your friendly local BCBA or Social Emotional Support provider which programs they recommend strengthening or practicing the month before and during holidays or a visit that is out of the ordinary.
Game players can practice skills they will need during the holidays.
Examples:
“go get mom and tell her something”
“find a family member who is hiding”
“follow 2-step instructions”
“tell someone you need a break”
“find and use a chill-out space at a holiday party”

Let others know when you see them doing what is expected or needed for a given social situation.
-Remind others how to listen (or be safe or be helpful) before it will be required.
Example: 6-year old Bobby is about to attend the holiday parade with his family. His babysitter reviews with Bobby while they park the car. She says, “This will be fun! There are a lot of people around. I want you to hold my hand anytime we stand or walk together. That way we’ll all stay safe. What do you need to do?” Bobby says “hold hands.” Babysitter says “that’s right! We’ll hold hands.”
-Family members can repeat back the “need” or the “rule” or “expectation” in their own words.
-Most families find it helpful to state expectations before the event (remind children and others what is needed or expected to be successful and be a part).
-Families need to use words that their members can understand, and that help them practice the social skills that will contribute to family harmony. It’s really important to hear these words often BEFORE the social situation where they really need to be used.
Example: Young children might need to hear “we stay in our seats at dinner”, or “let’s sit while we eat”. Older children might need to hear “if someone is telling a story at the dinner table, we can help (be a supportive big sister) by looking at them and then asking a question about the story.”)
-Use only positive instructions: Use “we can” and “let’s do ___” language. Say what we CAN do. Instead of saying “no running!”, say “we can walk in the house.”
-If something is “forbidden” (like “running in the house”, make sure you find times and places where that thing IS okay. Example: “We can WALK in the house. We can GO OUTSIDE (or go to the basement) to play running games.”

Benefits of using these strategies
-Builds the skill with less stress for parents or caregivers and child or client
-Gives child (or client) the opportunity to receive teaching when the parent (or caregiver) is focused. Parents get much better at this the more they do it.
-The child receives practice hearing and following the instruction at a neutral, non-threatening time. Children get much better at this the more they do it.
-Research provides lots of evidence that teaching does not occur in a crisis situation; learning how to use an alternative behavior takes lots of practice.
-Gives family members practice noticing and “reinforcing” the act of listening to an important instruction and following it right away.
-Gives family members lots of practice listening to others at neutral times. All this practice can make it easier to follow a safety instruction that is given “when it counts” (at a critical time).
-Builds practice and skills with MANY people who might act as teachers or caregivers, instead of just “hoping” a child will listen to a new teacher or caregiver
-These strategies are not new, hard, expensive, or strange… but effectiveness requires practice.

Bottom Line: Find the strategies above that your family can do, and do them often.

Payoff: That way, WHEN IT COUNTS, it won’t be as difficult to insure a child follows through, listens, or helps out, if s/he is already practicing it and receiving lots of feedback on it.

Stay tuned:
Our upcoming Q&A in this series deals with holiday travel and meeting new family members:
Q: How can I prepare my child for interacting with extended family for the holidays?
A: Use The Reverse Social Story!

NEW Q&A Series: Parents ask about social emotional support

06 Thursday Dec 2012

Posted by kolubcbad in Uncategorized

≈ Leave a comment

Tags

autism, behavior support, holidays, social emotional support

Stay tuned for posts in our new Q&A series, “Parents ask about social emotional support”.

Today’s Q&A:

Q. How can behavior support help families around the holidays?

A. Use this simple strategy: Provide extra practice with safety instructions

Then, stay tuned for more Q&A on topics such as supporting holiday travel, keeping behavior support consistent during the holidays, and more. 

Finally, check back often to see the Q&A.

 

Want to suggest a Q&A topic? Send a comment or call us at 720.263.CUSP. 

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