Published on in CHOP News
Remember back to your first meetings with some of your child’s doctors, nurses and therapists. Didn’t those appointments feel more like an interrogation than any type of medical consult or therapy session?
The rapid-fire list of questions seemed never ending and often included:
- What medications does your child take?
- What doctors does your child see?
- When did you last see Dr. So-and-so?
- Are you still being followed by cardiology? Or allergy? Or any one other specialty?
- What therapy services does your child receive?
- What is your child’s regular schedule?
- How much liquid does your child drink?
- What is your child eating?
- How does your child communicate?
As new parents to an amazing child with Down syndrome and a mildly complicated medical and therapy background, we’ve been there so many times – just like many of you.
We recently attended a course on patient advocacy offered by Temple University. The course introduced us to a novel way to manage all this information overload: It’s called an “About Me”, a short and concise snapshot of who our child is today. At first, it took us some time to sit down and write bullet points that described where our child is now developmentally, emotionally, educationally and more. But after it was complete and we saw the difference the “about me” sheets had with our daughter’s clinical team, we wish we had done it sooner!
The original concept of the “About Me” handout was to capture a concise vision for our child’s future growth, detail her strengths and current challenges, as well as detail approaches to care that worked well with our daughter, and those that did not. Initially, we saw this handout as a tool to be used in individualized family service plans (IFSPs) and individualized education plans (IEPs), primarily in school settings. But we took it a step further. Instead of just using the tool to communicate with school personnel, we also saw it as a way to communicate with our daughter’s medical providers and therapists – giving everyone a baseline snapshot of her current skills and those still developing. It has worked extremely well so far.
One of the keys to our “About Me” flyers is that they can be fully customized to address specific needs based on your individual child – which can be critical during key developmental stages when it seems like our children are learning something new each week, day or hour. Instead of updating this sheet monthly or weekly, we’ve found an update each season (or four times a year) is plenty to track our child’s progress and growth. The “About Me” handout – and comparison to previous handouts – have been a tremendous asset during Early Intervention Reviews and visits/evaluations with medical providers, therapists and even friends and family.
What’s on the Flyer?
The “About Me” flyers are fully customizable, but we found the following sections to be helpful when we used it for our own daughter and interacting with her medical team:
- Current Photo: We all love to show off our kids, and a photo helps the person reading the report connect more deeply with the child being discussed
- A Vision Statement: We try to keep these statements to four sentences focused primarily on our vision for her life, her needs, our role in helping her meet her needs, and the role of community in supporting her needs.
- Strengths: A bulleted list of recent physical, developmental and speech-related milestones achieved; your child’s preferences; things she likes to do, and areas where she excels. We’ve found this is a great way to keep a record of milestones at each stage of our child’s development
- Current challenges: We encourage parents to keep a list of current physical, developmental and speech-related goals; as well as behavioral areas currently under development. This is a good self-reminder about what we need to continue working on with our child.
- What works for your child: This is a list of optimal ways of working with your child; how best to address issues when she’s frustrated (i.e., play music, sing songs), and optimal ways to teach her new skills (i.e., modeling, showing instead of telling). Positive interactions early in a project builds healthy role models.
- What does NOT work for your child. Knowing which ways to avoid approaching patients is just as important as knowing what approaches are more likely to be successful. For example, we suggested avoiding “approaching her suddenly and closely with a lot of talking” as it can be distracting. Clinicians are using these tips to customize their approach to our child (i.e., “I know you don’t like it when people come up to you quickly and talk a lot, so I’m going to keep a little further away until you know me better.” This type of common-sense approach is working for both patients and staff.
- List of Current Service Providers, what services they provide, frequency of specialty services, and notes to share with therapists and clinicians.
- A Sample Daily Schedule: This is a table with times, activities (i.e., wake, sleep), food intake (meals, snacks and liquid intake) and medications.
Planning takes time, but the rewards are worth it
Sitting down and listing out all of your child’s medications, therapies, successes and challenges can be a painstaking process– at least at first. But we’ve found the time and energy we’ve put into creating “About Me” handouts for our child have been more than worth the time and effort invested.
By providing clinicians a snapshot of our child, we can act as collaborators with our child’s clinical team; and make each interaction, therapy or intervention more productive and successful. The “About Me” tool is helping our child grow and develop skills more consistently; building her self-confidence and her willingness to expand her skills and try new things.
- Dan & Vicki S, of Norristown, PA, parents of Abby, 2½