Date: 06/21/2023

This is a PSA to normalize physical differences without feeling the need to comment on them. Last week someone made a comment to Jason regarding this photo they saw of Asher, about how dry his skin was, he reminded them he has ichthyosis. They said yeah but don’t you put lotion on or something? Yes, well that is a very temporary help. His skin soaks it up and dries out within anywhere from minutes to an hour. It depends on his activity, the weather/climate, his hydration, his surroundings, the season of the year, how close to a season change it is, inflammation, how close he is to an illness or has come from an illness and TONS of other things.

Asher’s skin regenerates 300 times as fast as ours. So, it is forever drying, flaking off and regenerating. It gets tight and taut and wrinkly and scaly. It has a look. Sometimes in a perfect scenario he can look smooth and balmy right after a bath and removing scales. And, he’s comfortable and we all cherish those rare moments.

90% of the time he’s dry and itchy and his skin is rough and he’s uncomfortable. But, he has learned to live with it because he has no choice. It’s a disease that has no cure. This is one of many, many examples of rude comments about his appearance. People stare all of the time, people comment frequently about the dry skin and the redness. We get comments about “ooh poor baby is sunburned” like we don’t protect his skin from the sun. When in fact, not only is he allergic to sunscreen and gets a fever if too hot, but he is red as a baseline. He turns red quickly from warmth or cold even when protected by SPF clothing or shade. His body can’t sweat, nor can it regulate its own temperature. None of these things can be known or seen from the outside. Same goes for anyone with any physical “difference” from what you perceive is typical. You don’t know the why or their story.

So, the best thing to do is not comment on it. If you know us, you know we pour 200% of ourselves into caring for his skin. I’m sure Asher will deal with more than his share of kid comments in school. As adults, let’s set a better example!!!

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