Thursday, August 12, 2010

Changing the Outcome

“Changing the Outcome” is the tagline that appears under the logo for our children’s hospital and until recently, it was just a cool and catchy phrase that didn’t hold much personal meaning for our family. Then something unexpected and totally awesome happened.

A friend reached out and encouraged me to become a part of the family advisory council at our children’s hospital. I attended meetings. I listened and learned and my experience as a parent of a special needs child wasn’t just valued, it was sought after and respected.

One evening we listened to a presentation about a training event for the customer service representatives that staff the registration desks all over the hospital clinics. They were role-playing interactions with tough customers: parents who were stressed out and a little less than kind during the registration process.

I asked if they had ever trained their staff to deal with difficult situations that arise with children, rather than parents. I cited an exchange my son had with a customer rep in which he climbed over her desk, cleared it of its contents, and threw his snack in her face. (Autism can be a bitch.) I explained that perhaps some sensitivity training might be in order; these wonderful people need to be prepared and feel better equipped to respond in such situations.

And the craziest thing happened! The very next day, a committee began to form with the goal of developing a mandatory training for all customer service reps. The training would be titled “Supporting Patients with Autism and Other Developmental and Behavioral Challenges During the Registration Process.” Not only did they include me on the development team; I was also asked to open the training by sharing my experiences raising a child with emotional and behavioral challenges. I talked about the issues we face and how they are magnified by anxiety and the sensory experiences of the hospital environment.

Anyone could see that the participants weren’t thrilled to be there since the training took place at the end of a long workday. Even with food and beverages provided, people grumbled about the need for such an event. They had their minds on the happenings of the day, getting home, making dinner, and any of a million other things.

Early in the presentation a slide appeared on screen with Ethan’s picture and the caption “Why We’re Here.” I stood up and very nervously introduced the audience to my little guy and his many challenges. I told them why their jobs made such a difference to us and how their patience and understanding paved the way for my son and I both to have a tolerable experience, sometimes a downright good one. We spend a lot of time in that hospital and sometimes the time spent registering and waiting for an appointment is more stressful than the actual appointment itself.

I was later told that Ethan’s story, and my experiences as his mother, were very touching and brought several people to tears. I think Ethan inspires people to be the best they can be at whatever it is that they do, and this was certainly no exception. I hope that they also walked away with a new found sense of confidence in their own abilities to relate to children and their families as well.

I got to take what has been a very difficult and sometimes painful set of experiences over the past few years and turn them into something meaningful that will hopefully open others hearts and minds to what so many of our families live with – regardless of our child’s abilities or diagnosis.




  1. It's so difficult to give a presentation to such a large group of people and it must have been even more so when you realized that many people were less than thrilled to be there. I am sure that your presentation changed their minds and that they found the time spent in the training to be valuable. I'm so glad you took the initiative and joined the family advisory council. How lucky your hospital is that you are on that council! I see this as the start of many, many great changes you and Ethan will make over the years.

  2. Congratulations! Your firsthand story obviously had a huge impact. It's great to hear about such an effective and proactive family advisory.

  3. That's wonderful! I'm curious, though; how should one respond when a child climbs over one's desk, sweeps everything off the top and throws food in one's face?

  4. Samantha - you cracked me up with that question. Since there really is no perfect way to respond to that scenario (though I got dirty looks and eye rolling), we used it as a launchpad to create tools for the registrars. Since the hospital uses the Epic data system, we've started identifying these patients (with parental permission, by flagging their record) as needing extra attention during registration and waiting. Whenever possible, a child life specialist will be there on the ready for the family as they arrive to help make the process go as smoothly as possible, or to escort the patient to an area such as a closed off room with lights dimmed and a few toys. If child life isn't available, there will be special kits behind the desks for the registrar to give to the patient and family. The kits contain hands on sensory items and visual waiting schedules among other things. So in effect we're hoping to provide tools and understanding where before there were none.

  5. Thank you for sharing this encouraging story. It's from real-life experiences like yours and your son's that others can learn, and in this way, you can help to change the world for the better. It may be something local, but it's NOT small. Your honesty and patience are having a great impact. This is hopeful indeed!

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