Over the weekend, I read an article in the NY Times titled Should Parents of Children With Severe Disabilities Be Allowed to Stop Their Growth? I remember the story of “Ashley X” in 2006 whose parents chose to stunt her growth through surgery (think hysterectomy, breast nodule removal) and hormone therapy. This intervention is as controversial now as it was then. Comments range from (I’ll paraphrase) God bless the families faced with such hardships to Therapies that mutilate children and strip the rights and voices of the differently abled are 100% unacceptable. It’s a heated debate and parents are in the hot seat.
Here’s what I’d like to bring to the conversation because the assumption is: Parents are choosing growth attenuation for their own convenience – that children can be cared for more easily at home if they are kept small.
Nothing is that simple.
For those who think this type of treatment seems radical, unethical, let’s think about the pervasive lack of support that brings families to this. For example, I have spent the last three weeks trying to convince my insurance company that a rolling shower chair is medically necessary. They seem to think it’s a comfort item for Benjamin, and a convenience item for me. I disagree.
Benjamin is 100% dependent for all means of daily living. He cannot assist us physically for transfers. At 17 years old, he has severe spastic quad cerebral palsy, osteoporosis, uncontrolled seizures, and a laundry list of other medical diagnoses. A shower chair is as medically necessary as a wheelchair because he requires proper, supported positioning. I haven’t won the insurance battle yet, and you can’t always apply logic to insurance issues. When we moved from NY to NJ, we lost Benjamin’s Medicaid Waiver eligibility. I was told, “He’s not sick enough to qualify.” My greatest support comes from the school system because at home I have zero daily assistance.
Perhaps if the whole system changed, my entire family would have a better quality of life. Our limitations are real. I truly understand the pro-growth attenuation folk’s perspective. I don’t know if I would have done this type of thing, had it been presented to us, but I would have thought long and hard about it.
Even though Benjamin is a happy child, nothing is easy for him. Forget my caregiver issues for a minute. Ben’s growth has been difficult for him. His bones have grown longer and weaker and his muscles tighter and all the treatments/orthotics in the world can’t fight it. Dislocating joints and fractures have been his reality as he’s grown. I’d argue he would have been more comfortable if his limbs hadn’t grown so long. Perhaps he would have required fewer surgeries.
On the other hand, having been a special educator before I had my children, I completely agree that it’s difficult to assess a young child’s cognitive functioning, especially in the non-verbal. Growth attenuation treatment is geared towards children considered to have low cognitive functioning, I assume, because frankly they won’t ever truly be afforded independence in the eyes of the law. When Benjamin turns 18, I will have the unfortunate experience of standing before a judge to declare my son incompetent. Thus, legally striping him of so many rights we often take for granted.
I hear what disability advocates are saying regarding the need to protect civil rights, and no, I don’t know what it’s like to be disabled myself. And yes, the world needs to adjust their thinking and embrace inclusion. I hope we get there, but that’s not today’s reality.
To deny the need to consider even the most seemingly drastic measures isn’t the answer.
I’d like for those who are inclined to judge to know, some children are not the miracle stories the media like to portray and parents are doing the very best they can, making decisions they’d rather not be faced with. All the time. When you have a medically complex child with low cognitive abilities and a fragile life span, here in the US, the doctors hand over a lot of responsibility to the parents…because there are no certain medical answers.
I’m just conflicted about the direction the arguments have headed. As a parent who has made difficult medical and educational choices for both my sons, I have been at odds with doctors and teachers. I try to listen to both my children as best I can to improve their quality of life. I want to look to adults with disabilities as a guide for parenting my children, but I keep running into groups who define parents as a bunch who aim “to fix” and dehumanize their children whether it be by medical treatment or educational therapies.
When did parents become the enemy?
We absolutely need varied, passionate, open-minded voices in order to move our society forward. Angry, bitter voices create defensive audiences. I fear the current debates take us off course and aren’t helping anyone.