Executive Functioning (or Part 2 of Who really has the disability?)

Take a look at this list of  difficulties that often are characteristic of those who have executive functioning deficits (i.e. these accompany the diagnosis of FASD and often ADHD):

Cognitive:

• Inattentiveness, distractibility 
• Absence of a plan to solve problems
• difficulty with sequenced, multi-step tasks
• problems anticipating what needs to happen
• difficulty adjusting or changing a problem-solving style when it is not working
• difficulty using feedback from others to modify behavior 
• inefficient memory process (e.g. interference, difficulty organizing information for easy storage/retrieval

Behavioral:

• impulsive or lacking initiative
• tangential (off topic or perseverative (repeating the same things over and over, getting "stuck")
• either excessively talkative or lacking spontaneous conversation
• social problems due to difficulty "reading" social cues, interpreting complex social situation, learning form social feedback and and flexibly adjusting behavior to meet changing social demands

Emotional:

• difficulty with behavioral self-control
• apathy 
• dis inhibition (inability to put on the brakes or censor behavior)
• restricted range of affect
• emotional liability (frequent and rapid change in mood)
• impaired awareness of difficulties (denial, unconcern, lack of insight)

There it is. Our life in a list. I decided to go through the list and highlight all the issues that we see on a daily basis in bold...even I was overwhelmed to see that there was not one that we don't deal with on each day around here. We are keenly aware of the lack of executive functioning in our home as the first semester of school wraps up. Watching as kids who are on IEP's exemplify the deficits that are clearly 

part of their disability...and still watching them fail classes and make choices that clearly jeopardize their future. There are two elements of this that are the hardest for me to deal with at times.

The first is watching kids who have dreams for the future that may even be attainable, but their disability gets in the way of them being able to get there. It is so difficult to watch them not only have no ability to develop a reasonable plan (or even any plan) of how they want to achieve a goal and also not be able or willing to accept the help of another person who genuinely wants to assist them. Most of the time, they have no awareness that not having a plan is even a problem. It can be heartbreaking to watch them as they become their own worst enemy...and they have no idea that they are doing it to themselves. I do believe that most teenagers experience transitory difficulties with executive processing...as part of the maturing of their brains..but if you live with a child who truly suffers with FASD, you know what I am saying when I tell you that it is different when you are dealing with organic brain damage not just lack of brain maturity. 

The second, and most frustrating element of dealing with executive functioning disorders is the rest of the world. Case managers, teachers, bus drivers, virtually everyone in our families' world. Most just don't get it. Read the list again...each one of items can be misinterpreted as not caring or not trying..as disrespect, disobedience, defiance, or diminished ability. It is easy for me to see that "they" just don't get it, but...

I forget that I often having to remind myself what that I don't get it either...I wish that I could get a grip on executive functioning deficits my kids exhibit every day. I get on the bandwagon and advocate and teach and remind myself daily what it means to live with FASD. And life at the Martindale house is much better. And then, I find myself forgetting what wagon I got on and don't keep my focus...because this wagon is not a smooth riding, quiet ride. It is a large, screeching wagon that seems to be racing down the hill that is filled with bumps and craters. Instead of finding myself on a smooth ride, I am instead hanging off the wagon with both hands flying in the wind...barely able to hold on...because I am looking at the behaviors all wrong... contributing to their frustration and my own. The wagon seems out of control and my mind is stuck in the future...what are we going to hit as we come crashing at the end of the hill?

And there it is. The root of the problem for me. Fear with some pride mixed in.  I find that I am reacting to my kids behaviors out of my own fear. We all carry so much of it. If my child is stealing now...I think that surely they will end up in prison later on...I get scared, overwhelmed and non productive. And if my fears do come true, what good will it have done to have lived in that kind of anxiety? And then would I have failed at this whole mothering thing? Would I stand before God and say I have failed at the job he gave me as if he didn't already know. If I let my fear of failure rule the way I respond to their struggles, I will have wasted an opportunity given to me by God.  An opportunity to see what God has in store for my kids who are broken and in need of Him..

And there it is, again. We all come to Him broken and needy...may I not focus so much on the iniquities of my children so that I stop looking within my own heart...and find the lack of faith that shows itself in fear and worry within me. He holds their past, their present and their future. He is more than enough...and I will delight in our need..because He will be there through it all.

Oh Lord, I just want each of my children to know you and love you and depend on you with every ounce of their being...that is the cry of my heart...