Ashley in her wheelchair, 2006.

Ashley is a nine-year-old girl who will never grow up. Her parents have made sure of it by having her uterus and breast tissue removed, and flooding her with hormones to ensure she remains in a child-like body.

Why would her parents do such a thing? Ashley has severe brain damage and developmental disabilities. Her condition has left her in an infant-like state, unable to sit up, roll over, walk, or talk. Her parents, who believe Ashley’s condition will never improve, decided to undergo this radical “growth stunting” procedure so that Ashley would forever remain “small and portable.” Ashley will never grow larger than 4’5” and top out at a weight of 75 pounds – about a foot shorter and 50 pounds lighter than a typical adult female.

“Ashley’s smaller and lighter size makes it more possible to include her in the typical family,” her parents wrote on their Internet blog. Her parents also say that keeping Ashley small will reduce the risk of bedsores and other conditions that can afflict bedridden patients. She’ll also never go through puberty, so she won’t experience the discomfort of periods or grow breasts that might develop breast cancer, which runs in her family.

Supporters of The Ashley Treatment make their case.

Medical “Ethicists” Weigh In >

Since news of “The Ashley Treatment” broke earlier this month, medical “ethicists” and news pundits around the globe have debated the issue. Some feel Ashley’s parents are horrible monsters that are playing God for their own convenience. Others support their decision, claiming it is both a sensible and humane way to ensure their daughter lives the most comfortable life possible. As Ashley’s parents point out, the only people who have the right to comment on their decision are other parents of disabled children. “Unless you are living the experience, you are speculating, and you have no clue what it is like to be the bedridden child or their caregivers,” they write.

Well, I’m the parent of a child with permanent disabilities; my son has autism. While this is far from the “bedridden hell” Ashley and her parents must endure, having an autistic child is still quite a challenge. My wife and I hope that Rocco’s autism won’t be permanent – we’re trying everything possible to recover our son. One of the mysteries of autism, especially when your child is young, is that you don’t know how it’s going to turn out, just how disabling this disability will be. Autism is a spectrum disorder, meaning some people are deeply affected by it, others only mildly. Rocco’s future is uncertain, as are the futures of many children with autism.

Rocco is also an exceptionally cute kid. Like, baby-supermodel cute. I sound like a boastful Dad, but it’s true. Rocco’s a handsome little boy. Frankly, I think Rocco’s good looks have helped him overcome some of the barriers of autism. His blue eyes and brilliant smile get him extra attention from the “ladies” in his life: his Mom, his teachers, and his female classmates. Chicks dig Rocco. If he needs extra help with something, he always gets it.

But this might not always be the case. I’ve met autistic children of all ages. The trend seems to be that the young ones are really cute. But by the time they hit adolescence, they start to look…different. They look like there’s something wrong with them. The gap of social acceptance becomes wider, grows along with the rest of the delays, and gets harder to bridge. The breaks that come to all the beautiful people in this world stop coming.

“Pillow Angels” and “Forever Children” >

So, if I knew Rocco was never going to get better, that he would always have the mind of a child, would I keep him in the body of a child, too, if given the choice?

I don’t know. That’s a hard question to even consider. Part of me thinks I’d do it; I might keep my child a “forever child” if he were never going to get better.

But another part of me questions “The Ashley Treatment.” What will the mental and physical effects be as Ashley ages but doesn’t grow? What will the psychological and physical effects be on her family? Ashley’s parents are betting that the long-term benefits to their daughter’s overall health and quality of life will outweigh these potential pitfalls. They’re making choices now that permanently affect their daughter’s life forever. They’re making hard choices.

To a certain degree, this is the job of every parent, whether your child is typical, special-needs, or severely disabled. You have to constantly make choices—about what your kid eats, where they go to school, what they watch on TV, etc. Sometimes these choices reverberate, affecting your child’s life for years to come. Sometimes you don’t know you’ve made a bad choice until it’s too late. You try to make the best decisions you can; fill your head with knowledge, and keep your heart wide open. That’s what Ashley’s parents did. You don’t have to be an ethicist to see these people are doing what they believe is best for their child.

That’s all anyone can ask of a parent.

-30-