"A Label Isn't the Focus"

Today started off really fun! I know that one of my favorite parts of MedEx so far is getting to talk to the M2s. It makes me so hopeful and I learn so much every time. Eli walked us through how to do an Integrated Practice of Medicine (IPM) and then we got to practice doing a case to see how it usually goes. We also walked through the steps of a general medical exam. It consists of the following steps: 1) general survey, 2) pulmonary, 3) cardiovascular, 4) cardiac auscultation, 5) abdominal auscultation, and then 6) peripheral edema. The coolest part for me was wearing the stethoscope and getting to hear Julie, Alliah, and Madison’s heart beat. I kind of struggled at first but lemme tell you Alliah’s got a biggo heart.

The next thing on the schedule was the SC Lend follow-up. This time it was with the family panel. Unfortunately, about an hour of the time scheduled for the panel went into fixing some technological problems. When we did start talking to the panel, we immediately fell in love with their sincerity. It was 4 mothers taking turns answering questions we asked last time SC Lend was here. I learned so incredibly much from hearing them bounce back their experiences as a parent who has a child with ASD. The first question was “what were the first signs you noticed of your child’s development and what was the process like to diagnose them?” It was to my surprise that two of the mother’s responses were complete opposites. One mother said that her child was not meeting the developmental milestones of his age while the other mother mentioned that her child was meeting the milestones way ahead of his age. This certainly speaks to the fact that “no two people with ASD are the same,” which was a constant reminder during the panel. It was also really insightful to hear from the parents what they wish healthcare providers would know when having a patient with ASD. Every single mother said to be patient. Not everyone is able to articulate their responses to questions in a timely manner. Especially in the modern healthcare world, it is almost impossible to see physicians take their time while listening to their patients. Other advice that was mentioned was to have bedside manner and to always talk to the patient, not the parent/guardian in the room. Last time SC Lend was here, I asked the question of what is the appreciative language. When the mothers took turns answering this question, I found that it was a common pattern that “a label isn’t the focus.” As a future healthcare professional I should treat each patient as an individual person, ask them for their preference, not make generalizations about groups of people, and treat each person with respect. I also learned another valuable lesson from this talk. I learned that in my future, I should not only educate my patients and their families but also have the willingness to be educated by them. They are the ones living with a specific diagnosis; meaning they may know more about what their experience is than how much I know just from reading about it in a textbook.

After a quick lunch, we had a debrief with SC Lend. Lucy, a tier-mate, was so kind to share her experience with autism. It was so frustrating to hear some of the things that she had to endure as such a young age whilst seeing her brother not get accommodated for. He too is autistic and once had the police show up because of a mental breakdown he had in class. She would see him get bullied and all she wanted to do was to protect him, except she is 7 years younger. He would be working on his homework and scream “I am not normal” every night. This scared her and made her not want to be the same because she didn’t want to endure the same thing. Lucy likes to be referred to as someone that is autistic rather than someone with autism because it is something she can’t leave behind; it is a part of her. With that being said, Lucy can’t imagine not being autistic and knows that it has brought her many gifts.

Last thing we did today was finally talk to Dr. Epright. I am so glad she has gotten better from covid and is able to stand here with us again. Today’s focus was eugenics; so we talked about Nazi “medicine.” This of course originated from the Nazis, but the concept was still used years later even here in the U.S.. For example, during the 1980s the “crack babies” was an outbreak. Black women would be targeted and tested for crack, without their knowledge and consent, with the excuse of “protecting the babies.” The women would then be arrested and the babies would be taken away. How good is that for the baby? When instead it is a much better option to listen to the mother and make the assumption that she actually care for her baby’s health. I got to talk to Dr. Epright one on one during the break about her experience with covid these past ten days. What she felt is very similar to what my dad is going through right now. She eased my anxiety about my his sickness and told me that he’ll be fine. It is just taking a little longer for him to recover because he has preexisting chronic illnesses. It was comforting to hear that from her knowing that she dealt with this at first hand just this past week.

Can’t wait for tomorrow!!