THE BLOG

Taking Away My Daughter's Hard-Earned Rights

04/13/2015 10:02 am ET | Updated Jun 13, 2015

At 10 a.m., the doorbell rang and I greeted my daughter's court-appointed attorney. Addie, my Halloween baby, turned 18 a few months ago and she celebrated with a dozen friends -- hot tubbing and pizza, followed by a horror film. She insisted on the original "Carrie." Addie made the guest list, created a Facebook event, ordered the pizza and downloaded the movie by herself. Jackie, my wife, insists her sole contribution was driving Addie to Trader Joe's to pick up pretzel sticks and sparkling lemonade. After a terrifying start to her life with catastrophic childhood epilepsy, Addie has clawed her way to a sense of confidence, grit and burgeoning independence. But there's little time to celebrate her achievement of things that once seemed impossible. We feel compelled to take away some of her rights.

My wife and I have petitioned the Los Angeles County Superior Court to grant us a "limited conservatorship." Our goal is to protect our daughter while placing the fewest possible limitations on her as a newly minted adult. Our hearing is next month. Addie's attorney, Ms. Shapiro, arrived at our house to make sure Addie understood the significance of these proceedings.

"Well hello, Addie!" Ms. Shapiro said. My daughter trudged barefoot to the breakfast table in her Hello Kitty t-shirt and gray sweatpants. Addie sat down with legs spread too wide and yawned without covering her mouth. She made no eye contact with Ms. Shapiro.

Addie suffered from Infantile Spasms as a one-year old and then Lennox-Gastault Syndrome as a little girl. These catastrophic childhood epilepsies landed our family in the "special needs" realm. In her first years, we struggled to accept that Addie might never walk, talk, feed herself, or even know we were her parents. Miraculously, clinical trials of anti-convulsant drugs worked -- not once, but twice -- and gave her brain a chance to develop. Month by month, she engaged with the world. With her iron will, Addie defied the odds and, unimaginably, learned to read when she was 13.

For the past 18 years, my family has been neck-deep in the world of special needs. We were thrust through the looking glass and learned about drug studies, early intervention, speech therapy, and programs for kids with learning disabilities. I joined the Children's Hospital Los Angeles Institutional Review Board. Jackie became the president of the board of a hospital-based therapeutic pre-school and later quit a career as a lawyer and founded The Children's Ranch, a therapeutic riding center for kids with special needs. As experienced as we had become, our daughter's transition to adulthood came with an entirely new set of unknowns. How do we protect her and simultaneously send her off on her own?

Sitting at the table with Ms. Shapiro, Addie's deficits appeared glaring once again. Addie shifted in her chair. Eye contact has always been difficult for her. "Isn't Bug Man ridiculous?!" she said, laughing a bit too loudly and gesturing to her cat. I wiped my sweaty palms on my jeans.

Although Addie does not have autism, her challenges have much in common with Autism Spectrum Disorder (ASD). Addie benefited from the explosion of autism awareness and services. From 1997 to 2008, the reported prevalence of ASD increased nearly 300 percent and the Centers for Disease Control and Prevention now estimates that 1 in 68 US children has ASD. With seventy-four million kids under 18 in the United States, over one million likely have autism. The CDC puts the number of individuals with autism who also have an intellectual disability at roughly 30 percent. Dozens of other conditions, including Down Syndrome, cerebral palsy, and our daughter's condition, epilepsy, can lead to the need for a limited conservatorship. Astoundingly, the CDC estimates that one in six U.S. children has some type of developmental disability. Of the hundreds of thousands of 17 year-olds with developmental challenges transitioning to adulthood each year, many would benefit from some type of conservatorship. But how many families are aware of this option? It is perhaps only because of Jackie's deep immersion in the field that we learned of tools like conservatorships, to ease the transition to adulthood.

As a late bloomer, there's no reason Addie would magically be ready for "adulthood" just because the calendar flipped into her 18th year. One evening her phone buzzed non-stop for hours. We discovered a mountain of sexually provocative texts from a boy who graduated last year. Addie told us she was going to "knock him out" or "have a K-9 police dog bite his ass." I applauded Addie's spunk, but I was scared. With Addie's permission, my wife called the boy and left a message letting him know she would call the police if he texted Addie again. For families like ours, a limited conservatorship can provide a crucial tool in overseeing medical decisions, financial and educational choices, and the conservatee's personal relationships.

When we explained the conservatorship to Addie, she said things like, "I'll tell the judge I can't do f***ng math," and "I want your help... I feel vulnerable." Her instant assent, in and of itself, confirmed that we were doing the right thing. Nevertheless, since we are seeking to remove an essential component of adulthood -- the right to make one's own decisions -- the court required us to have notices of our intention sent to our extended family. If any family members -- including Addie herself -- disagreed with our plan, this was their chance to share their concerns. We received no pushback.

As Addie's parents, present-day reality gives us two visions of her future. We cheer as Addie arranges her Friday afternoon Uber ride to the martial arts studio where she assists the younger children before taking an hour-long class herself. A moment later, we're triggered by a hiccup, like when Addie racked up a $324 iTunes bill for an iPhone game called "My Little Baby" and imagine a future where Addie signs a $5,000 per month apartment lease or worse yet, gets married against her will.

As my wife and I reviewed paperwork with her attorney, Addie ducked into the kitchen. With Ms. Shapiro, we discussed the report submitted by the LA Superior Court investigator, who interviewed Addie at her high school to determine her level of understanding. Did Addie know who the president is? Yes. Did she know what she wanted to do after graduation? Yes, take acting, martial arts and German language classes at Glendale Community College. Was Addie aware of what a conservatorship meant? Yes, Addie said she needed help with money, cause she's "bad at math."

Before we wrapped up the morning's meeting, Addie showed Ms. Shapiro the gourmet mushroom and feta cheese omelet she prepared for herself. Addie shared her desire to travel to South Korea to assist the occupational therapist who helped her as a child. As I poured myself coffee, I imagined a future where Addie becomes a beloved teacher, here in Los Angeles, or overseas. Giggling from the next room jolted me back to reality where I overheard Addie and Ms. Shapiro discussing the silliness of high school boys.

I stepped into the room as Ms. Shapiro extended her hand to Addie. "Well, Addie. It has been a pleasure getting to know you."

"Goodbye Ms. Shapiro," Addie said.

"Goodbye for now," Ms. Shapiro said. I shut the door and imagined a final goodbye to her, and all the Ms. Shapiros who've helped us. Someday, we hope to rip the conservatorship to shreds, and restore Addie's full rights to her.

And if Addie decides to move to Texas and marry her high school boyfriend... well, we'll just have to see about that.