Caring for an individual is no small feat. But when someone has an extreme disability, eating, sleeping, communicating and most normal daily activities are considerably more difficult than many of us could ever imagine. Most people with extreme disabilities require nearly 24/7 care and that begins from day one with their parents. For many, this constant care from their parents extends beyond the normal ages of childhood to the length of their parents’ life.
But as a child grows, it becomes increasingly difficult for the parents to take care of them. Gone are the days of coddling for comfort, bathing in the tub, pushing in the stroller and sitting with ease in the car or at the dinner table. As the disabled child grows, the care becomes the task of not one, but two people. And as the parents age, their mobility and strength decline and inhibit them from caring for their child as they once did.
This may sound brash at first read but, what if there was a way to keep your child at a more manageable size—keep them from growing, from physically developing? What if there was a medication that would chemically stunt your child’s growth so you could hold them in your arms for the entirety of their life? Would you seek out this treatment for your child?
According to an article, Small Comfort, in the New York Times Magazine on March 27, 2016, there is a way to stunt your child with an extreme disability’s growth. More research has found many parents making the choice to have their child under go the treatment. Since 2006, doctors in the U.S. have been administering a treatment now coined as the “Ashley Treatment” or “growth-attenuation therapy” to result in both a shorter and lighter child.
As you can imagine, this treatment and whole idea of stunting a child’s growth has created great controversy. But this treatment has remained low profile as many families and doctors do not feel comfortable speaking out about their child’s receipt or their administration of the treatment out of fear of ridicule.
This treatment is a major ethical decision because the ‘what if?’
This treatment is a major ethical decision because the ‘what if?’ ‘What if my child turns a corner and becomes more highly functioning?’ or ‘What if science finds a cure?’ Even with all of the technology we have in this day and age, both of these outcomes are such unknowns.
Despite the controversy that has been sparked among doctors and the steady increase of parents making the decision to give their children this treatment, it is interesting to me this story is just hitting the media. Is it because the treatment is so controversial or because many doctors refuse to admit they perform the treatment? This treatment is life altering. When a grown healthy individual makes the decision to have plastic surgery or undergo a gender change, it’s all the talk. But for someone with a disability, our society handles it quite differently. It’s interesting.
As I try to place myself in the position of a mother with a child with an extreme disability, I wonder what my instinct would tell me to do. Is this treatment one I would be almost ashamed for my child to undergo. If I chose the treatment for my child, would that decision be selfish of me and rob my child of the off chance that he/she would make some sort of recovery? Or if I chose to bypass the treatment would I be subjecting my family to an expense of outside extra care when I am no longer physically able to care for him/her on my own?
When I first read about the “Ashley Treatment” I was stunned. I have been left questioning who I am to make that kind of life altering decision and wondering what I would decide when and if the time ever came. I must say, this is an ethical decision I can’t say I’m upset the media has left alone.
Read about the “Ashley Treatment” and see if you can decide what decision you would make for your child.
Cover photo taken by Sasha Rudensky from The New York Times; captioned: Ricky Preslar, who has undergone growth-attenuation therapy, in his bedroom.