Seeing beyond what is...To what could be

I teach a leadership course, and one of the definitions of a vision that we provide is the art of "seeing beyond what is, to what could be". Additionally, i teach about a skills assessment called "strengthsquest"...and one of the primary tenets of that program is that attempting to only fix your weaknesses leads to failure prevention. building on your strengths leads to success.

I know that the majority of folks who read this blog are family and friends...but if there are any folks out there with kids with CP, please watch the video below. On first watch i found it mind blowing. on second watch, i found it inspiring and incredibly motivational. the video is a tedtalk from Dr. Karen Pape. she discusses the concept of "neuroplasticity" with brain damaged children:

I took notes during the second round of watching this video in an attempt to summarize the content, but i realize now that summarizing would be impossible...so instead i'm just going to share the bullets that i took away:

• Our expectations determine perception and our perception determines the way that we work with our kids
• Doctors are trained to look for problems, and to an extent that's what we, as CP parents, do as well.
• Instead of looking at correcting inabilities, we need to look at our children as elite athletes. We need to be coaches. Doctors look for problems. Coaches look for possibilities (chew on that one for a second).
• When an adult has a mild stroke we expect them to fully recover. When a child has a stroke (either at an early age or in utero) we think that there is no possibility for "recovery" only "rehabilitation"
• Kids can learn lower level skills (like walking) when their brain is still in the process of recovery...and over time that lack of ability to do something (like walk) becomes a habit. It's not that they CANT do it, it's just that they've practiced the same habits over and over again.
• We cant change habits by working the habit. Encouraging a kid who walks badly to walk more teaches them only how to walk badly better. 
• So how do we reframe teaching? How do we look at our kids in terms of potential instead of correction?

The notion of coaching vs. doctoring resonates with me. Dr. Pape shared an example of a child with hemiplegia who she expected to have issues walking...and sure the kid had some issues walking...but he could run like the wind...because NO ONE TOLD HIM THAT HE WOULDNT BE ABLE TO RUN! 

Absolutely fascinating. I've often said that we have no idea the amazing things that Gommy's brain is capable of and this video further reinforces it. I have to figure out just what "not training him to do bad better" means to me, but we'll figure it out. 

Last thing...the wife and I have a severe lack of patience in general. We're not really folks who like to wait. And I think that part of that personality trait of ours has translated into how we work with our kids...we see something that we think could help either one of our kids, and we think "well, why shouldnt we get it now?!?!" and immediately go out and buy it. 

In exploring that feeling a little bit deeper, and in discussing it with twisty, I think I've determined that having a special needs kid has led to a irrational and unnecessary sense of urgency, almost a twisted butterfly effect. We think that doing something now, meaning RIGHT NOW, could benefit him in 5 years...and the converse is true as well...not doing something right now could negatively impact him in 5 years. So of course the answer is to do it RIGHT NOW. And from reading this blog, I think you know how determined we are to do everything we can. 

But in truth that needs to be checked a little bit. There certainly is some truth to the notion of wanting to do everything we can to teach and love on our two little men...but that sense of urgency is often fueled more by fear and almost a manic desire to make sure we're parenting as hard as we can, instead of a rational sense of what today means in terms of the future (if that makes sense). It's good to be determined. I'm not sure that it's good to be impatient, so we're working on balancing the two out. 

irrrational musings

this post is irrational and i know it. so bear with me.

we went to the doctor this weekend for gommy's 9 month appointment, and he's doing extremely well. he's following his growth charts (for the most part), and has taken the slightest dip in head size.

his brother had a huge melon. gommy's was well with a normal range, but on the small size. i remember when he was born thinking that he 1) looked small and 2) looked proportional...which is different because babies normally have an orange on a toothpick for a head. but again, it was well within the normal range. the doctors didnt mention anything about it, and it didnt really register as a red flag in my mind...just one that i kind of went "huh" and moved on with.

a part of PMG is microcephaly, meaning smaller sized heads. rationally, gommy does not meet the criteria to be considered microcephalic. rationally, it's possible that his head charts are going to be off because of his time in his cranial band. rationally, there is nothing to even pay even the remotest amount of attention to in this situation.

irrationally, i should have known. i should have taken the next step in logic when i thought he looked "proportional". irrationally i should have had some sort of fatherly spidey sense that something was going on.

back to rationally discussing my irrational concerns. could we have done anything? no. the damage had been done. he's doing extraordinarily well...to the point where every doctor that we see is almost shocked about how interactive he is, and how physically active he is--and not just for a kid with CP--in general. Gommy is doing great.

but irrationally again...there are moments where i feel an extraordinary amount of pressure as a parent...which is not a bad thing really because parenting should be a huge responsibility. and the pressure doesnt manifest as a burden by any stroke of the imagination, but it feels like in order for gommy to be the best he can be, i need to be the best i can be for him at all times. and not noticing...rather not giving creedence to the thought i had about his head being proportional makes me feel like i let him down in some odd strange sick way.

and i know i didnt. i know that. but the irrational part of me hasnt stopped thinking about it since our doctor's appointment.