Brenda Rothman had life for her son Jack all mapped out — the best private schools, the most competitive athletic teams, violin lessons at 3 years old. At 3, Jack was diagnosed with autism and the map quickly got redrawn.
As for Rothman, she began a blog. "Mama Be Good" is not a feel-sorry-for-me forum but a see-how-great-my-kid-is one. The blog's tagline reads: "He's beautiful. He's funny. He's autistic. Mama's just trying not to mess him up."
"I always wanted to present a balanced view, not just of the problems, but of the positive parts of my son's life and of autism," said Rothman, who gave up a law career to home-school and care for Jack. Five years later, Rothman still posts three times a week. Adults with autism are among her followers. Her blog, sometimes poetic, often edgy, has evolved into a place where debate about some of the most important and thorny issues facing the autism community takes place. (Jack, now 8, still gets plenty of ink.) To view Rothman's blog, visit mamabegood.blogspot.com
Q: Is writing about autism hard, given the wide spectrum of disorders and disability the word encompasses?
A: That is part of the challenge that comes with trying to build a community around autism. The difference even goes to how individuals on the spectrum are described with labels that aren't particularly helpful, labels such as "high functioning," which usually means verbal, or "low functioning." Someone might view my child, who can talk well and is social, as high functioning but he still has challenges with everything from tying his shoes to getting dressed to using utensils.
Q: You talk about Jack's gifts. What are they?
A: His love of learning and passion for it are remarkable. They inspire me. When he wants to explore something, he is very courageous and brave in spite of the fact that he has to work through his challenges. That Jack can articulate his passion is great. Autistics who can't have the same spark. It is going to take longer to unwrap it.
Q: How has your blog evolved?
A: It has become more of a broad view of the autism community, disability rights, the challenges that autistics have in their lives. My writing brings up some deeper, darker questions.
Q: Such as?
A: The toughest lately touches on why the public discourse around autism is an overwhelmingly tragic one. Most of the information that you hear from doctors, autism organizations, parents and the media focus on the deficits. If I asked you what you think about autism, the description would probably include words like grief, lost dream, lost child, financial burden. I am not denying the difficulties that autistic individuals have. It is not an overwhelmingly tragic life.
Q: Who reads your blog?
A: Usually parents. I have a loyal following of autistic people. I am very proud of that. They have educated and informed me. I am highlighting the fact that autistic individuals have not had a platform, a voice, even though they are the primary members of the autistic community.
Q: You said some parents with autistic children feel powerless. Do you?
A: I feel empowered by disability and by my child's autism. What disability did was give me a huge moment to reflect and see what is important, what my values really are.
Q: What is important to you?
A: The things I thought were important — material things, prestige, academics in the traditional sense, outward success — weren't. What is important is being connected to people and community, finding a passion, following that passion and discovering ways to stay optimistic. Those are the things I want my son to have.
Q: Your blog can get edgy. Do you get hostile comments?
A: I typically don't get name-calling or ad hominem attacks, although that has happened. I really am proud that I have established what I hope is a respectful platform for debate.
Q: Do you think your blog is furthering debate in a positive way?
A: The topics people don't want to talk about are already there, ones that the community needs to have addressed. You can have a community based on superficial support but then it is a superficial community and a community in name only.
Q: Are your surprised that you are a blogger?
A: I am not surprised that I am writing. My major in college was classic rhetoric and my whole career focused on writing. I never thought I would be blogging about autism or disability or that it would be a positive force in my life. I never expected that motherhood would give me so much to reflect about.
The Sunday conversation is edited for length and clarity. Writer Ann Hardie can be reached by email at ann.hardie@ymail.com.
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