A Controversial Treatment

 

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Hardware in Benjamin’s leg to repair a fracture. Also, shows his dislocating hip prior to surgery.

 

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.

 

 

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6 thoughts on “A Controversial Treatment

  1. Dear Joanne,   I read this article on Sun. too and we  had a full house with two daughters and their children visiting us from distant states. I explained the issues to them as best i could and said that there were a couple of parents at Horizon School with whom I would like to discuss this topic, and mentioned you because your blog is so intelligent, well -written and thoughtful. I’ve been aware of this treatment for a long time but did not realize quite how many different aspects there are or can be (mastectomy, hysterectomy, etc.)  I knew you would have a reasonable reaction and you did. I’m glad you tackled this topic and will be interested in seeing how others respond to you.     I hope Ben recovers well from his surgery. Have you been in touch with Michelle Roth about your need for a shower chair for him? It is unfathomable that your insurance is making this so difficult. Compared to other supplies that people need, a shower chair is not even very expensive!    Bette

    From: Special-Education Mom To: bettehanauer@yahoo.com Sent: Tuesday, March 29, 2016 2:56 PM Subject: [New post] A Controversial Treatment #yiv9866579735 a:hover {color:red;}#yiv9866579735 a {text-decoration:none;color:#0088cc;}#yiv9866579735 a.yiv9866579735primaryactionlink:link, #yiv9866579735 a.yiv9866579735primaryactionlink:visited {background-color:#2585B2;color:#fff;}#yiv9866579735 a.yiv9866579735primaryactionlink:hover, #yiv9866579735 a.yiv9866579735primaryactionlink:active {background-color:#11729E;color:#fff;}#yiv9866579735 WordPress.com | joannedesimone posted: ”  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 su” | |

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    1. Thank you Bette. I truly appreciate your comment. Ben hasn’t had any recent surgeries…although there is one on the horizon. Insurance is often complicated, even when it should be simple. I believe the HS reached out to Michelle for me, but I will contact her too.

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  2. Joanne, once again you bring a measured and intelligent voice to a topic that most people would choose to avoid. There is certainly no good answer to this difficult and personal decision that parents struggle with as a result of the lack of necessary support services. Thank you for sharing your comments on this issue.

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    1. Thank you Jennifer. I do believe it warrants civil discussion. I think that even though there’s no good answer, the most important question we can ask is, “Why?” Why is this a consideration? and if it truly isn’t a good one, then the only way to change the climate and parent’s/doctor’s perspective is to directly address the reason behind this option. The same way we ask “Why?” when students demonstrate less than optimal behaviors. Change can’t happen unless we address the why factor…

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    1. Certainly, “pillow angels” is not a term I would use to describe my son. Thanks for bringing that up, because it makes a point about how children are discussed and therefore how they are viewed. No doubt, that particular phrase could be seen as derogatory…even if that wasn’t the intention. I’m not sure where the term originated, though if we take it literally I think we can make some assumptions about what it means. That’s the thing about language in general…it’s easily misunderstood…and terms mean different things to different people. For that reason, I think I tend not to focus on things like that. But my goal here is to widen the scope of the conversation. So thank you!

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