Client success story

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

“Will I have bubbles today?”

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

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

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

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

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

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

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

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

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

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

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

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

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

The question: Will you want bubbles today?

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

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

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

What’s your story?

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

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

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

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

Everyone has a story. Everyone’s story matters.

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

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

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

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

His mom is not alone.

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

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

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

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

First, let’s be kind.

Welcome back!

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

UPCOMING EVENTS:

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

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

Special Faith: Is this child welcome in my church?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Free networking event and presentation for Broomfield providers

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This announcement comes from our partners at the Broomfield Early Childhood Council

“The Broomfield  Early Childhood Council is hosting an event on Tuesday June 18th (6:30-8pm) and Thursday June 20th (12:15-1:45pm) at the Mamie Doud Eisenhower Public Library in Broomfield to learn about the work in health integration and care coordination, along with building partnerships between health providers serving Broomfield children and families.

 
This event will be catered and all are welcome!  Guest presenters are:  Colorado Department of Human Services presenting on the grant application for health integration with an objective to mitigate toxic stress in infants and toddlers; Adam Bean from the Regional Care Coordination Organization (RCCO) presenting on the work of care coordination for Medicaid patients; and Dr. Nancy Greer from Broomfield Pediatrics presenting on the vision and importance of care coordination between local providers and her work to ensure comprehensive care.  
 
This is a great opportunity to network with health providers from all disciplines and understand what the Broomfield Early Childhood Council and health partners are doing to create a comprehensive system of care for early childhood!
 
Please RSVP to jessica@broomfieldecc.org.  Look forward to seeing you there!”

Do you wonder why they wander?

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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.

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

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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!

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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

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