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!

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 3^rd 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.

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.

In her post on autism and wandering, Brenda Kosky Deskin shares a family-oriented perspective on 20 practical ways to insure the safety of loved ones with autism. Some of the ideas are also applicable to our loved ones with dementia.

Thanks, Brenda, for linking to our recent post about this topic too!