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Kentfield teen creates website for parents and siblings of children with developmental disabilities

Marin Independent Journal - 10/23/2023

Oct. 21—Growing up with a younger brother with developmental disabilities, Anya Ryan always felt grateful that she had support from her family and beyond to help her navigate what she was going through. But when he left for a time to go into a therapeutic boarding school last year, it put things into a new perspective.

What began as a research paper on how to support siblings of children with developmental disabilities in her AP seminar class at Redwood High School led the senior to create Colored Glass (coloredglass.info), a curated website for siblings and parents of people with social, emotional and cognitive challenges. The site, which she felt addressed a lack of resources in this area, features the 17-year-old Kentfield resident's more than a dozen interviews with therapists, special education consultants, parents and siblings, as well as other resources, such as studies, articles, books, podcasts and more.

Q How did your brother going into the therapeutic boarding school impact you?

A When he left, there was just such a shift in my everyday life and the environment of my household. I think it really sparked like a period of reflection of how his presence has impacted my everyday life, positively or otherwise. I hadn't really realized the extent of what it was like to have a brother with developmental disabilities and when he was not with me every day, it was really hard. It was just really different. And so that led me to want to research the topic. I knew before I started the project that I wanted to do something about the experiences of siblings of those with developmental disabilities and how to support them.

Q How did the website come to be?

A I researched mainly the general day-to-day experiences of siblings of someone with different developmental disabilities. And then for it, we also had to create a solution. As I was researching existing solutions, I just felt that there was really a lack of support and resources for the siblings of people with developmental disabilities. I just felt that if I create a website with different resources that could be really beneficial to them.

Q What's the reason behind the site's name?

A When I was doing my research, the term "glass children" came up and I thought it was really interesting. It basically was saying how a lot of the siblings of children with developmental disabilities feel like they are seen as really strong and while they are, they have a lot of struggles that people might not be aware of. And so they're kind of looked through in that sense and they're more fragile than people realize. We are strong and we all have different experiences, but generally speaking, there's a lot of challenges that comes along with having a sibling with developmental disabilities. So it's like coloring the glass and making the siblings feel seen and then also helping their parents, as well for other people to see them and what they might be going through.

Q Through your interviews, is there someone's story that really struck a chord with you?

A I interviewed one sibling my age and she just had a really interesting viewpoint about growing up with her sibling who has cerebral palsy. She gave me a really interesting perspective of equity and equality in her household and what that felt like and what she's understood now that she's gotten older. ... This project was all about having as many perspectives as possible and I really wanted to bring empathy and compassion to this.

Q Did you feel like you built a community by doing this?

A For sure. I've really enjoyed the process. A lot of siblings feel alone and I haven't felt super alone because of my support, but I feel like just hearing specific things about their lives that was really similar to my everyday life and how they felt about those experiences was therapeutic. Some of them I could feel like they were definitely excited about the fact that someone wanted to talk to them and know about their experiences, because, of course, their siblings' experiences are very important, too, but often no one is like, what is your everyday life like?

Q How'd you find some of these other resources?

A Some of them were resources I had looked at in my own time and then also through my research project. And then also I volunteer for nonprofit Willows In The Wind. I help with their social media. Part of my role was finding different resources, especially for parents.

Q What's a nice memory you have of your brother?

A He is really into creating things, so we've always enrolled him in a lot of makers classes. It's his passion and it's really cool to see. So much of his confidence comes from his creativity and his ability to make things and his love for coming up with different ideas. So I would just say there's a lot of memories of him just being so excited to give us something that he made on his own or in a maker class.

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(c)2023 The Marin Independent Journal (Novato, Calif.)

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