When Brian and Danielle Ford learned their son, Benjamin, had albinism, they didn’t quite know where to begin. Brian shared his experience with APH FamilyConnect, writing about the diagnosis and the pursuit of getting Benjamin all the resources he needed.
One of those resources was Melisa Matthews, a teacher of the visually impaired (TVI) who was Benjamin’s teacher before joining APH ConnectCenter. It was through Melisa that the Fords were invited to attend the National Organization for Albinism and Hypopigmentation (NOAH) bi-annual conference in July, courtesy of APH FamilyConnect. Because the conference is family-friendly, the Fords brought Benjamin, who is now four years old, and their two-year-old son, Elliott, who is sighted.
“It was four days just packed full of knowledge,” Danielle says. “They had little information sessions all day long, and because there were multiple sessions at a time you could pick what pertains to you. Brian and I split up, so we could get more information and then compare notes.”
For Benjamin and Elliott, there were all-day sessions where they could make crafts such as a teddy bear, and get to know the other kids there.
“Benjamin loved it,” Danielle says. “He met a little girl named Junie who had white blonde hair and glasses, so then every little girl he saw he said, ‘There’s Junie!’ He’s very much a social butterfly.”
Soaking up knowledge
One thing the Fords learned from talking to other families is that Benjamin can see a little better than most kids with albinism. They also learned a lot more about how albinism can affect someone’s vision.
One of Danielle’s favorite sessions was called “What do I see?” It was led by a young woman with albinism, who explained that it’s hard for her to answer when people ask, “What can you see?” because it’s what she’s always seen. So, she and one of her sisters set up a table with a variety of objects on it. Being an artist, the young woman placed her easel increasingly closer to the objects and painted what she saw.
“It was like a 1950s TV compared to a brand-new high-definition TV,” Danielle says. “Many of the objects were clustered together because she couldn’t make the distinction from one to the next, or she only saw colors.”
Brian spent much of his time at in-depth sessions on research about the condition and the genetics involved.
“They had a lot of very informative speakers there that are highly respected in their profession,” he says. “I learned so much more than I ever did just reading things on the internet. And with research, things are always evolving, which is great. It’s not a dead end.”
The Fords also learned about the assistive technology that’s available when Benjamin is ready for it, as well as how to advocate for a better Individualized Education Program (IEP) for him.
Making connections
One of the biggest things they came away from the conference with was connections to other parents who are on the same journey they are.
Danielle attended a small mother’s workshop her very first day, and befriended many of the women she met. They stay in touch on Facebook and through group chats.
“There’s a sense of community there, for sure,” Brian says. “I came away from the conference with a whole new way of thinking.”
The Fords attended the conference before COVID and plan to attend again. But they are both grateful for APH’s assistance in attending this year.
“It’s kind of given us the drive to get to the next one,” Danielle says, “because in two years we’ll see what’s changed and what’s available then.”