Set the Bar Higher

Recently, the father of a child with cerebral palsy asked me how to best discuss the recovery potential of his child. Here is the first part of his question.

Q. After I read your blog, “A New Way of Thinking About Cerebral Palsy” my first thought was “What is the best way to get this information to our child’s pediatrician and therapists and how do we as parents uncover the evidence of brain recovery and provide that evidence to our child’s physician? …. I think many parents feel like they shouldn’t be the ones to teach/inform their child’s physician. Who am I to tell them how they should treat my son and, even if I did, why would they even take me seriously?”

A. They should listen and always take you seriously, because you are the world class expert concerning your child. You are your child’s best advocate and you know your child’s skills and problems better than any physician or therapist in your healthcare network. My theory that many of the abnormal movement patterns of cerebral palsy represent deeply ingrained habits is radically different than the classic interpretation that these early movement patterns are evidence of permanent brain damage. In its simplest form, the theory, Habit Hides Recovery, is an attempt to explain the observed fact that children with mild to moderate levels of cerebral palsy have a range of behaviors in most skill sets. The difference in my perspective is that I look for signs of higher order, normalized movements rather than focusing on lower order, early learned movements. (TEDx Talk)

Demonstrating evidence of higher recovery potential requires documentation. When I was told that Jack could not only run, but he was playing soccer…I thought his mother was in denial. When I saw him run well and even do pivot turns on his weak, spastic leg, I had an “Aha” moment. His mother wasn’t crazy. I was not seeing all that Jack could do. It is now fairly easy to demonstrate recovery to your healthcare team and your child’s teachers. All you need is access to a smart phone, a tablet or a video camera. I described this process in the blog “Ready for School?”.

A few examples…If you look carefully at how a child walks and compare that to how they run, in just about all cases, the run is more fluid, more organized and more balanced than the walk. (How to Uncover Recovery Hidden by Habits) An even more dramatic demonstration is having a child or adult, walk forwards and then backwards. It is counterintuitive, but in a child over the age of 6 years, walking forwards is usually less organized than walking backwards. (Challenge the Brain to Change the Habit)

Parents of a child with a speech problem know that their child is able to speak more clearly at home than when stressed in a doctor or speech therapist’s office. A child with brachial plexus injury may not be able to reach their arm over their head when asked to lift the arm, but easily performs jumping jacks or hits a floating balloon. (Brachial Plexus Injury)

In each of these examples, the same part of the brain is producing abnormal movements and normal movements. The abnormal movements are habits that were learned early by the child with a damaged, but recovering brain. Higher-order skills were learned later, with a recovered and more mature brain. The key point is the same parts of the brain control both movement patterns.

What you see is dependent upon your mindset. (Mindset, The New Psychology Of Success by Carol S. Dweck, Ph.D.) The organization Reaching For The Stars has adopted a positive growth mindset and I for one, think they are on the right track. (Reaching for the StarsReaching for the Stars FaceBook ) The problem is that changing established ways of thinking has to be done one professional at a time. Each and every parent of a child with an early neurologic problem can help.

I think all parents should document their child’s best behavior. Show the professionals what your child is capable of doing at their best. Unless the professionals see what you see, they will necessarily have low expectations of improvement. We all have to remember this classic coaching principle.

“If you set your goals low enough, it is easy to be satisfied with your results.”

It is the parent’s job to set the bar higher, one professional at a time. If you have a great example of early maladaptive habits that mask evidence of a better higher order skill, let me know. I would love to create a video library of Habit Hides Recovery as an educational resource for all of us. Contact me at kep@karenpapemd.com

I have put in a lot of links to relevant blog posts, but as a first step, please watch my TEDx talk on either the home page or on YouTube.

 



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