My son has a scarce team. So I turned to the internet.

Apart from the apartment, our situation was less predictable. When I tied my son to the carrier to the carrier and walked around the city, his first meetings with strangers were accused. His language usually rested outside his mouth and sometimes interpreted it as a provocation. People spent his languages ​​on him, and then laughed at the confusion when his back did not pull him. They shouted behind us when we left, looking for the size of the language. They approached him in a park or pharmacy and said: “Whoa!” Is “Is he ailing?” When I put his passport application under the automatic post office, the employee with a abrasive pushed him, saying that the government would not accept a photo of a child taking a language. I buzzed in rage at these meetings and helplessness that they revealed in me. I felt unable to represent my son in the world. I had to determine how to accept his BWS, preparing for the suffering that this could cause.

The pediatrician, with whom Marc contacted, suggested that we would consider joining the parents’ support group. I was looking for them on Facebook and immediately asked for access. When they unlocked their door, I slipped inside with gratitude. Only the size of the groups – they had thousands of members – they kept me. Parents shared stories, fears and photos of their children, in illness and health. The groups were not plain. They often increased with uncertainty and pain. But they comforted deeply how they allowed me to redistribute the burden of my private worries.

Parents in BWS groups told stories about how their children were perceived. Any unsophisticated comment can be entered in our secret book: Pediatrician at a meeting who said: “He may not go to Harvard”; Grandma in the aquarium, who said: “This child looks delayed. “ Each word seemed torpedoed straight to my son. I met the word “delayed” only since junior high school, but now it seemed that he was following me. Most BWS children did not have intellectual disabilities, but some other children with huge languages, such as children with Down syndrome. Grandma in the aquarium said: “Oh, I’m sorry you heard me, but your child with my son. “ The huge language was a petite human difference, but insult was a blunt reminder of the punishment required by every suspect of the difference.

Although BWS was scarce, the world of social influence was extensive enough that I found a handful of relationships in which my parents wrote about the children who had them. I followed them and watched them play our fresh life in the form of burlesque. I was not interested in this deliberate broadcasting of our family, but I also knew that we would watch whether I like it or not. I looked at these influential BWS so that the messages about the messages that I can send, perhaps without realizing. The parent who baked the theme of apocalypse danced during gesticulating their daughter’s symptoms in floating text bubbles, making a blouse normality of this state, even when they explained it. The father of the extreme family who bought items on severance pay and resold them on Ebay and Amazon, set BW of the fourth child as a kind of motivational project. Diagnosis, he said in a film entitled “Never give up !!”, set “on the way to couponing”, and the extended stay of their son did not stop them. “We bought more things,” he wrote. “We coupled harder.”

I followed the mother of Pennsylvania, who published on Tiktok under the name @largerthanbws, and watched a movie that she published under popularity “Show her child as a newborn vs. Now. “ It opened with a shot of a newborn, sleeping on his knees, sucking her large tongue, as if it was a natural teat, just like my son. Then – pop! -He became a mop little boy with a toothed smile. In this trendie Tiktok, movies with the most dramatic transformation moved further in the application, which was watched over four million times. I chose comments that stuck to him like elderly chewing gum. There were emoji hearts, emoji laughter, emoji skull. Some expressed confusion, asking why these paintings confronted them in their channels. One person said: “I would send it back. “