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Monthly Archives: April 2013

To the parents and therapists on our clients’ teams: What if this was your child with autism?

26 Friday Apr 2013

Posted by kolubcbad in Uncategorized

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augmentative communication, autism, contingent access, cusp, typing, unimaginable intelligence

Before this child was known to the world as “the girl with autism who expressed unimaginable intelligence”, she was a child who used baffling self-stimulating behaviors and could not speak. She experienced support for YEARS. Her family and team supplied hours of behavior analytic intervention. Her mother describes how hard she worked to keep language in front of her child, literally in front of her by using pictures and words to label household items- all the time. Her family describes how they tried never to give in or give up hope, ALWAYS requiring her to communicate a want or a desire before accessing that thing.

To the parents of my early intervention clients whose children are not yet verbal, whose children’s hands don’t express meaningful gestures yet, whose eyes don’t make sustained eye contact yet,

This is to you:

Have you seen this? Some of you haven’t. You can go check it out for yourself and come back in ten minutes.

Some of you already have. You contacted me and we both watched videos in the comfort of our own homes. There were tears in separate houses that night as we struggled to make sense of this.

My letter is to you, parents who have a child with unimaginable potential that is often unexpressed. My letter is to you, parents who hope and see results weekly but then by Wednesday are daunted by all there is to do, and understand that there is still so far to go. This letter is to you, mothers and fathers who are taking my suggestions literally when I ask you to arrange a therapeutic environment all day.

What can we say about the years of therapy, and how they affected the future person your child will grow up to be?

The girl in the video spoke with incredible intelligence and beauty. At first her fine motor actions looked laborious, and we were not sure if she was being assisted. And then we saw her words across years, settings, situations with someone sitting beside her or not. We, her viewers, watched as with strength and persistence she typed and typed, as long as it took hunting the keys with halting hands. She began to describe her feelings about being in her body, how difficult it was to coordinate her brain and actions, how it felt to experience the sensory world, why she felt she needed to throw her body against a surface… and she joked around with her father. He agonized over this. He has his daughter back. But after all these years… imagine what he went through before her “breakthrough”, before she experienced the behavioral cusp of learning to type, which opened up new worlds of reinforcement—and access to the verbal community. Think of all the years of childhood and adolescence and more than a decade of not knowing she could understand him. How long had she understood language before being able to communicate herself, we wonder.

What made the difference for her?

When this young lady was a little girl, and even as she was learning to type, her family and team of therapists emphasized she needed to use communication before accessing what she wanted. This was not meant to be cruel- it gave her the countless opportunities to practice the experience of expressing what she wanted before she got it. Requiring it every time was difficult, I’m sure. It takes work, every day, to use naturalistic strategies to make SURE a child communicates before accessing things she needs or wants as the day proceeds. Make sure that access to preferred or needed events, is CONTINGENT on a social interaction in which the child requests the event.  Stick to it. Accept only the best approximation the child can make in the moment. Be consistent but also flexible, insuring the child can ALWAYS make a communication attempt during an interaction. (Understand that sometimes a moment is more difficult and there is more going on and you might temporarily accept less than you did this morning, knowing you will come back to the better approximation, and the child will be able to do it. If the child can look and use a word to request his favorite train, but today he is only making a sound, we can accept the sound right now. But in a few minutes we can model “train!” as we hold the train out. As he reaches for the train, wait a moment until he tries to say “train” and deliver the train.)

To support kids that may grow up to use a communication system like typing or an ipad:

We can use contingent access when they are young, to insure that when they are around adults, they get countless opportunities to practice doing something social and communicative, before their environment changes and they get what they want and need.

We need to gently let them know looking at others means good things, not bad things, are coming. We need to remember to say their names when we catch them looking at us or happily playing or engaged, not just when we need something from them.

We need to help expand their worlds, by giving them enough practice to get good at something. Practicing picture exchange once a day or twice a week won’t teach communication. Playing with a toy with your child once a week won’t build strong play skills. It’s not about the hours so much as it’s about the learning opportunities. We can teach our babysitter, the child’s grandparents, the child’s nursery school teacher, the child’s occupational therapist, or anyone- to use therapeutic interaction. Contact us (or your local behavior agency or BCBA) if your team needs more help building in therapeutic learning opportunities throughout the day.

What can we say about the children?

We hear them. We hear that they are hurting and unable to express needs, let alone express all the intelligence and beauty that is inside. We need to help them practice their best way. We need to give them a reason to express.

We want to help. We want to do our best to make sure they learn a communication system that is meaningful to them, that is the easiest to use out of all the options they’ve tried, and that allows them experience new worlds of reinforcement.

We understand that we have to start somewhere, and we know that even if the child learns to type complete sentences one day—we still needed to start here, at early intervention, with measurable units of behavior and communication that we can see changing daily.

We want to be consistent for them. We don’t want to hurt, but to support. We want to give them a way to express their pain, suffering, joy, needs, ideas. We need them to know how meaningful language is, and we have to be diligent and not give up when it’s hard.

When they’re hurting or hurting themselves, we want to find a way out. We need them to learn how to access that way out through appropriate behavior that doesn’t hurt.

When they’re not able to express what they need to, the way WE think they need to express language, we need to find other options. These other options need to be things that don’t hurt others or themselves.

We need to collaborate with therapists and families to give our best shot at developing your vocal skills, fine motor skills, and gross motor skills, so you don’t find it as effortful to communicate whether you use sign, speech, or an augmentative device.

And we need to keep trying.

To the kids, to the students, and to the adults who have not yet found their voice:

We must keep trying. You’re trying too, and we see how hard you’re working. We need to tell you that, when you’re working hard.

We know it takes more out of you than it takes out of us, when you have a meltdown or tantrum. We want to help you not have to use this to be comfortable. We need to develop an interaction language with you, so you can tell us in advance if you really need a break, are having trouble controlling your body, need some help, want to leave, or just feel terrible.

We know that CONFIDENCE makes a big difference. We can see you on the videotapes, Carly, interacting with friends, joking with your dad, introducing Temple Grandin as your idol- we can see you blossoming and we love to see that the cusp of learning to type has given you access to whole new worlds that were closed to you before. But we also see the confidence as you are able to interact with other kids your age, blog and write about helping others, and going on shows like Larry King. You are amazing, and how hard you have to try each time you communicate through typing.

We thank you for your advocacy for others.

We read the comments on your videos and understand not everyone will “get” you. We empathize with you. We see others questioning, judging, and making trite comments without knowing how hard you have to work.

Someone wrote, as you smiled and typed interacting with your therapist, that he didn’t like the way someone was giving you chips as you practiced your hard work.

But we’ve been there, we’ve had to use reinforcement to strengthen a skill that we know we need to strengthen. If there is nothing contingent on using a new skill, we know how easily it is to give up and stop using that skill. We know that you are learning to type for the meaningful access to communicating with others that it gives you, you’re not typing for chips. J But we still snack when we’re working on a book we’re writing…

We thank you for providing your perspective on how it feels. How it feels to use eye contact, use self stimulatory behavior, or struggle to type.

You are an example, a model, someone in the world that others look up to. And thank you for talking to us, Carly. What a gift you have given.

To the parents:

Thank you for your persistence.

Never give up. 

What’s next? Join local agencies for events and trainings—often free!

19 Friday Apr 2013

Posted by kolubcbad in Uncategorized

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Tags

April 2013, autism, children, Colorado, education, events, families, May 2013, workshops

What: Cusp Emergence is joining IBHS for an upcoming FREE education and networking event for families that will recur monthly at the Imagine! John Taylor Conference center  In Lafayette. Stay tuned for more information! Meanwhile, check out some other events in our area:

What: Free training in Person Centered Thinking, courtesy of Imagine! Innovations.

When and Where: Wednesday 4/24/13 or 5/29/13 at 9-12 pm at John M. Taylor Conference Center, 1665 Coal Creek Drive, Lafayette, CO 80026

Find out more: Click here for a link to other Imagine! Events and scroll down to the date you want to attend.

What: Free presentation on Autism 101: An Introduction to Understanding Autism, courtesy of IBHS (Imagine! Behavioral Health Services) and ASC (Autism Society of Colorado)

When and Where:  Friday 4/26/13 at 10-12 at John M. Taylor Conference Center, 1665 Coal Creek Drive, Lafayette, CO 80026

Find out more: Click here for a link to other Imagine! Events and scroll down to the date you want to attend. RSVP is required.

What: All-day seminar on Empowering Families (Topics including post-diagnosis, effective communication, collaborative problem solving).

When and Where: April 27 9-4pm at Rainbow Community Center at 2140 East 88th Ave, Thornton CO, 80229.

Find out more: Contact KimNichelle Rivera at 866-213-4631 or knrivera@empowercolorado.com

What: Workshop for understanding sexualized behaviors in teens with intellectual disabilities

When and Where:  Friday May 3, 2013 from 1-4:30 pm at John M. Taylor Conference Center, 1665 Coal Creek Drive, Lafayette, CO 80026

What: Free class on Building Cooperative Behaviors

When and Where: May 14 at 8:30-1:00 pm at John M. Taylor Conference Center, 1665 Coal Creek Drive, Lafayette, CO 80026

Find out more: Click here for a link to other Imagine! Events and scroll down to the date you want to attend. RSVP is required.

What: Walk for Autism with Autism Society of Colorado

When and Where: June 9, 2013 at Infinity Park in Denver (Glendale)

Find out more here

 Still looking for more? More events  on the Imagine! Calendar include parent empowerment workshops, presentations from the Colorado Guardianship Association on Medicaid, and a symposium on caregiving and aging, all in May.

http://www.imaginecolorado.org/Calendar.htm

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.

 

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