Friday, February 24, 2012

Flashback Friday: Ripping off the Labels


And it's Friday, once again. Considering the news is chocked full of controversy over right to life, pro-choice, birth control and other trivial topics that are top-of-mind on the political agendas... This post immediately came to mind with my own growing frustration  with a majority of the medical professionals community that maintains a firm belief that our children, living with hydranencephaly, are incapable of living a quality of life worth fighting for... to label or not to label:

Ripping off the Labels
By Ali Harper
Original Post: Small Portion of a Life's Journey, April 4, 2011

I don't know what is worse, having a diagnosis... or not having a diagnosis?! I am in touch with MANY families of children who find themselves facing the unknown for their child, with or without a formal diagnosis. Even WITH a piece of paper that tells them the "fate" of their child, no one knows that for sure! 

I've thought about this over and over again. I personally feel like having a hydranencephaly diagnosis for my son, a condition that is rare and terminal... one that I learn more often than not is merely skimmed over in medical school... is the death sentence. The label, not the diagnosis is the grim prognosis... 

Brayden has hydranencephaly, so he shouldn't be aware of his surroundings or alive for that matter. But, he is. He also has severe cerebral palsy so he should have difficulties all of his life, but he doesn't see anything as a difficulty. He is MISSING most of that important part of his brain, the part that supposedly does most of the work, but he manages just fine without it. So, what is the point in a diagnosis? Besides for the medical community to throw him in to a bin labeled, "not worthy of my time," and continue about their day?

Point proven, today another hydranencephaly mommy just received a "formal" diagnosis for her son. Mind you, this label brings a very grim prognosis... simply stated: death within the first year. Her son, he is twenty-one years old (we love you Malcolm!!) and living happily ever after. 

But there are those mommies who long to "know" what their child has, to have the answers... that label for us doesn't bring answers, it brings only more questions. Individuals should be treated individually, despite their diagnosis or lack thereof. If that were the general medical rule, all would be right in the world!

Natan Gendelman is the founder of Health in Motion Rehab which I have long been intrigued by since they offer many of the services I want for Brayden like neuro developmental, herbal, physio, massage therapies and more (unfortunately they're in Canada). This new blog post is why I love his practice so much, and envy those who are able to benefit from his beliefs:

Why treatment should be adapted to the child first, and his condition second
SUNDAY, APRIL 10TH, 2011 by Natan

When a child is diagnosed with cerebral palsy or any other neurological disorder, people often accept that there will be certain things which he can and cannot do. Yet, what we often forget is that that this is a child which we are labeling; a child who possess his own character, will, dreams, opinions and personality. Each person thinks, communicates and makes choices in his own unique way, and that is something that both the medical and therapeutic worlds cannot predict. In fact, I think that trying to do so would be a huge, grave mistake, and I apologize to those who do not think this way.

Every child is different

Now, I’m not trying to offending anybody here. However, a lot of times we see a child’s cerebral palsy or disorder first, and the child himself second. How does this change anything, you may ask? Well, if you asked a therapist if they have seen two children with the exact same condition,the answer would be no. That is because every person experiences life in different ways and different forms, meaning that one child’s cerebral palsy will look completely different from the condition of another child.

For this reason we need to remember that there is no template, no cookie cutter, and no pure recipe for treatment which can be applied to every child. Instead what we have to do is learn from each child as much as he can learn from us. Each concept or treatment has to be adapted to his own needs first, and to his condition second. Any minor cerebral palsy can become severe if it is not treated properly through his lifetime, because it is important to adjust to the individual changes taking place with the child himself, along with his growth and development.

Creating connections

With this in mind, I find it funny how we’re always getting stuck on the individual names of the therapies during this process. When we hear about physio, we think that it just treats gross motor skills. Occupational therapy deals with fine motor skills and daily tasks, while speech language therapy only comes into play when working on speech and communication. In reality though, can we teach a child how to move without communicating with him? We can’t, so to be successful in teaching a child, we first have to try our best to connect with him on his level.

When I work with kids, I try and understand where he is coming from, what he is and is not willing to do, and the ways in which he does things. Remember, a child’s movement and function comes from the brain. So if we don’t develop the brain, we cannot develop his function. Developing the brain, or the child’s cognitive function means that when we talk to him, we are essentially teaching him important life skills. In turn, this will affect his intelligence and thereby improve his motor and sensorial function.

In adapting treatment to the child’s needs first and his condition second, you will discover just how successful he can be as he grows closer to achieving independence in his daily life.

Do you have any questions about this article? If you need any help or advice, feel free to drop me an email at Thanks, and I look forward to hearing from you!

This article was featured on Pediastaff’s blog. Thanks friends!

Also, there is mention of our bee-friend Malcolm in the previous post... sadly, he has since joined his angel friends and earned his wings on Valentines Day 2012. 
**We still LOVE you and you're forever alive in our hearts! 

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