Bowen is the least medically needy of all of our kids from China. He has a physical once a year and once every year he goes to see a special doctor for people with Skeletal Dysplasia. Bowen has Achondroplasia, the most common form of Dwarfism. This means he has the most visibly apparent need of any of our kids from China. You can’t tell that Tess has a heart defect just by looking at her. You can’t tell that Cate has one eye when she’s wearing her prosthesis. Unless I start signing with Gigi, you wouldn’t know she is Deaf.
Bowen very obviously has Dwarfism. Bowen started Kindergarten this year and experienced his first taste of bullying. His school responded quickly and appropriately with education and warnings to the students involved. School became his safe place. He feels very comfortable there. Sometimes, he feels too comfortable. Sometimes, people want to befriend him because he’s small. We work hard to walk the line with intentional friendships.
The world outside of school is different. People are rude. They stare. They use words they shouldn’t (midget is NOT okay). We knew this would happen. Bowen’s siblings are fierce about standing up for him. Sometimes, they’re too fierce. They’ve occasionally asked him if someone needs a butt kicking, except they didn’t use the word ‘butt’ because they’re teenagers. I have to remind them to dial back the anger and teach whenever possible. But, sometimes, I’m not great about that. I bristle when I see people openly stare at him.
When we adopted Bowen we began to save for a lifetime membership to the Little People of America for him. We purchased it late last year. Bowen will always have a community of people who look like him. He will always have people who can relate to his daily struggles and who can really understand his triumphs. Everyone needs a community.
Next week we’ll attend our Regional LPA convention. In July, we’ll take Bowen to Boston for Nationals. When Bowen is older, he will have the option to attend summer camp for kids with Skeletal Dysplasia diagnoses, a camp just for kids like him. This is so important, and not only for Bowen. If your child has a medical need, visible difference, has a home culture outside of the U.S., or is adopted, I’m pleading with you to reach out to your child’s community. Summer camp is a GREAT way to do that.
Red Thread Advocates has put together an AMAZING Summer Camp Guide for all things related to special needs and China adoption. Heritage, language and community, it’s all HERE. Some of the camps come with low cost or no cost for qualified families.
–FullPlateMom, who wants no child to feel alone.