“And It’s not going to hurt. Mama will be with me the whole time.” Grace repeated this line probably eight times at a recent audiology appointment, and I beamed with pride. We have attended innumerable physicians’ appointments over the years. If you have a loved one with DS, chances are you have had a similar experience. As Grace has become more aware, and often more afraid, of various physicians, I have discovered some simple strategies that we use well before appointment time to make our time in the doctor’s office run more smoothly and with less anxiety for all of us.
1. Prepare ahead of time
For very involved appointments or procedures, I try to start preparing Grace a couple of weeks ahead. But for routine appointments, especially “no-hurt” ones (see below) talking about it a day or two beforehand seems be enough for her.
Social stories are a useful visual tool to prepare for appointments and procedures. I also like to bring the story to an appointment and use it as a visual reminder of what is coming next. Having photos of the patient in is ideal, but let’s face it, it’s usually not possible to take photos while you’re wrangling a kid at the doctor. Boston Children’s Hospital has pre-prepared social stories for a variety of procedures.
YouTube has many “what to expect” videos for various medical specialties. While some are aimed at parents, the visuals are still beneficial. Many, however, are narrated by and aimed at children. Grace routinely and repeatedly asks for these over cartoons or songs. The sleep study one below is one of her favorites. At the end of this post I’ve included links to some videos and tips for finding others.
Playing doctor is another good way to prepare. A good toy doctor set can help patients become familiar with some of the tools they will see at a routine appointment. Medical-themed pretend play is popular in our house and is often modeled on the videos mentioned above. It seems to give both of our girls a sense of routine and predictability when it comes to doctor appointments.
2. Distinguish between “hurt” and “no hurt” appointments
I used to avoid talking to Grace about appointments where I knew she would experience pain. We had had several botched blood draws in a row, and I would physically shake each time we headed to the next. One day, I just felt terrible lying to her. So, I calmed myself and explained that the blood draw would hurt, but just for a moment, and that sometimes the doctor needs to hurt us a little to help us stay healthy. I always assure her that I will be with her the entire time, and when she is done, we can get a special treat. (Mom gets a special treat for a job well done, too!)
So now as we prepare for appointments, we distinguish between “hurt” and “no hurt” visits. I’m not sure how much this eases the hurt of painful procedures in the moment, but I know that like the audiologist appointment I mentioned above, “no-hurt” appointments are easier because Grace has less apprehension about what is coming next. And I feel better about not tricking her into the painful appointments.
We are fortunate that aside from a few blood draws per year, we have few “hurt” appointments. Maybe that is why this works so well for us. But thanks to a fantastic phlebotomist and (I like to think) this strategy for preparing Grace, she hasn’t even shed a tear in the last two appointments. In fact, after her last draw, she was dancing in the middle of the room, exclaiming, “I am fierce!” Sure, I’ll take a little credit for that.
3. Make a patient fact sheet
Staff at Cincinnati Children’s Hospital developed a strategy called adaptive care plans to improve the health-care experiences of children with developmental disabilities. These plans information such as past health experiences, communication preferences, sensitivities, responses to pain, and coping strategies. Although child-life specialists there interview caretakers for this questionnaire, which becomes a part of each patient’s electronic file, you can create your own factsheet about your loved one based on the prompts provided here.
Creating a similar “About me” sheet for physicians can be invaluable for patients who may, among other things, have memories of past health trauma and be unable to communicate traditionally. Contact a nurse or child life specialist at your facility to learn the most efficient way to present this information for physician review before an appointment, so that she may better understand your loved one and hopefully adapt her care appropriately. A trained nurse, my friend Katie, at rise2me has two other examples of fact sheets she uses for her son during pre-op/hospital visits, as well as some other really great information about preparing for surgery.
Medical and therapy appointments are a prominent and often stressful part of life for many individuals with Down syndrome and their caretakers. I hope you can find some easy, practical ways to help reduce anxiety your loved one may feel when going to these appointments. Granted, these strategies may not leave him dancing around the room after an appointment, but hopefully they will at least make things more bearable for all involved.
Resources: Medical “What to Expect” videos for various specialties
Below are links to a variety of videos showing patients what to expect at various appointments and procedures. If you don’t find something you need below, try searching YouTube for “’pediatric [specialty or procedure]’ ‘what to expect’” or “’children’s hospital’ ‘[specialty or procedure]’.” For older patients, you can omit pediatric or children’s.
- Audiology 1, Audiology 2
- Dentist 1, Dentist 2
- Electrocardiogram (ECG) 1, ECG 2, ECG 3
- Echocardiogram 1, Echocardiogram 2, Echocardiogram 3
- Ophthalmology 1, Ophthalmology 2, Ophthalmology 3
- Placing/removing a cast
- Sleep Study 1, Sleep Study 2, Sleep Study 3 (This one features a patient with Down syndrome!)
- Surgery prep 1, Surgery prep 2
- Swallow study 1, Swallow study 2
- X-ray 1, X-ray 2