From his voice, you wouldn't know Shannon Rose has a life-threatening disorder called Ehlers-Danlos Syndrome. And after speaking with him, you'd know that he doesn't let this diagnosis get in his way. Rose says, "Since the age of birth, I've always had an interesting life." Rose was diagnosed at age 2 with Ehlers-Danlos Syndrome, or EDS, an incurable disorder that affects the body's connective tissue. EDS is characterized by fragile skin and unstable joints as a result of faulty collagen; it is collagen's duty to act as a "glue" in the body. EDS is a rare disorder, and the general public (and even healthcare professionals) is uneducated about it — which is why Rose has set out to "talk about what's not known." Rose recalls trips to the emergency room: "I tell them I'm a national spokesperson, and they tell me I'm crazy." Then he tells them to look him up on Wikipedia, and they know he's not insane. Rose goes to schools and talks on the radio and television to spread a "message of hope," he says. "No matter your disability, don't let doctors tell you that you can't do something." Rose has a history of fighting what doctors say about him. At age 10, he lost his voice for a year, but that didn't stop him from participating in his school choir. "I was lip-synching before it was cool," he says. At age 13, both of...

Shannon Rose, with Ehlers-Danlos Syndrome, thrives as a wrestling announcer, defying medical odds and spreading hope.

Announcing: Shannon Rose and Triumph Over Adversity

 From his voice, you wouldn't know Shannon Rose has a life-threatening disorder called Ehlers-Danlos Syndrome. And after speaking with him, you'd know that he doesn't let this diagnosis get in his way.   Rose says, "Since the age of birth, I've always had an interesting life." Rose was diagnosed at age 2 with Ehlers-Danlos Syndrome, or EDS, an incurable disorder that affects the body's connective tissue. EDS is characterized by fragile skin and unstable joints as a result of faulty collagen; it is collagen's duty to act as a "glue" in the body.    EDS is a rare disorder, and the general public (and even healthcare professionals) is uneducated about it — which is why Rose has set out to "talk about what's not known."   Rose recalls trips to the emergency room: "I tell them I'm a national spokesperson, and they tell me I'm crazy." Then he tells them to look him up on Wikipedia, and they know he's not insane.   Rose goes to schools and talks on the radio and television to spread a "message of hope," he says. "No matter your disability, don't let doctors tell you that you can't do something."   Rose has a history of fighting what doctors say about him. At age 10, he lost his voice for a year, but that didn't stop him from participating in his school choir. "I was lip-synching before it was cool," he says. At age 13, both of...

Shannon Rose, with Ehlers-Danlos Syndrome, thrives as a wrestling announcer, defying medical odds and spreading hope.

Easy to Love, but Hard to Raise is a collection of essays from the parents of children with "invisible" but very real disabilities. As these parents share their stories, a sense of empathy and support emerges until the reader comes away feeling that they, too, are not alone. There are other people who have done those good and bad things they never thought they would do in the process of raising their children. They've expressed doubt and screamed out in frustration. These parents have been judged by those who don't understand because they have never faced the challenges of loving a child and yet feeling the need to apologize for them everywhere they go. In addition to the 32 parents who have written about their experiences, 25 experts give insight into topics ranging from ADHD to homeschooling to a child's social IQ in each chapter's question and answer sections. This book is an excellent resource for parents who take comfort in the very real accounts of others who have been “in the trenches.” Those who pick it up take their places in a support network for parents of children with invisible special needs. Below is an essay titled "Dominoes" excerpted from Easy to Love, but Hard to Raise. It was written by one of the book's editors, Adrienne Ehlert Bashista. "Butthole dickhead asshole poopy head." My eight-year-old son turns over the dominoes. "Asshole son-of-a-bitch my butt is a big buttcrack. I'M DONE!" he yells. "COME PLAY!"...

Book shares real stories from parents of kids with 'invisible' disabilities, offering insights and forming a support network.

Book Excerpt: Easy to Love, but Hard to Raise

  Easy to Love, but Hard to Raise  is a collection of essays from the parents of children with "invisible" but very real disabilities. As these parents share their stories, a sense of empathy and support emerges until the reader comes away feeling that they, too, are not alone. There are other people who have done those good and bad things they never thought they would do in the process of raising their children. They've expressed doubt and screamed out in frustration. These parents have been judged by those who don't understand because they have never faced the challenges of loving a child and yet feeling the need to apologize for them everywhere they go. In addition to the 32 parents who have written about their experiences, 25 experts give insight into topics ranging from ADHD to homeschooling to a child's social IQ in each chapter's question and answer sections. This book is an excellent resource for parents who take comfort in the very real accounts of others who have been “in the trenches.” Those who pick it up take their places in a support network for parents of children with invisible special needs. Below is an essay titled "Dominoes" excerpted from Easy to Love, but Hard to Raise. It was written by one of the book's editors, Adrienne Ehlert Bashista.  "Butthole dickhead asshole poopy head." My eight-year-old son turns over the dominoes. "Asshole son-of-a-bitch my butt is a big buttcrack. I'M DONE!" he yells. "COME PLAY!"...

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Special Needs
Articles

Announcing: Shannon Rose and Triumph Over Adversity

Book Excerpt: Easy to Love, but Hard to Raise

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Special Needs Articles

Announcing: Shannon Rose and Triumph Over Adversity

Book Excerpt: Easy to Love, but Hard to Raise

Find Providers Near You

Special Needs
Articles