Jax has had two (nearly three!) good days as I sit down to write this.  Not perfect, but good.  I have to write these things down too, not just the struggles.  We’ve played games after supper the last two nights, and wow, has he ever improved on being patient, taking turns, listening to the rules, and following them instead of making things up as he goes along.  It was actually really fun!    It feels good to spend that time just being a family laughing and cheering each other on, not just managing behaviors through an activity, or worse, having to end a fun, family time because there is just no cope left.

One of the most prominent challenges of a person living with an FASD is a deficit in working memory and executive function.  In simpler terms, they just plain cannot remember what they’ve learned the first time they hear it (or the second or the gazillionth sometimes).  Or rather, they cannot access what they do know, and therefore cannot execute on their own the functions of daily life that others can without thinking twice about it. People living with an FASD often don’t know what they know, and can’t find what they know in the places in their brain where they store information.  Picture this.  This filing cabinet in your office is organized alphabetically.  Every piece of information you need to keep has its place.  That is the way an uninjured brain works most of the time, well at least in the typical.  Most likely for my Jax, his brain is like a filing cabinet, but all his files are flung to the floor. Once in a while he is able to grab the right file and come up with the right answer. But most of the time, he just can’t get to the information that we all thinks he should know because we’ve explained it over and over and over again.

This is a disability in executive function. (The link explains it MUCH better than what I can!).  For Jax, this affects many areas in his life, his ability to organize and remember and make sense of even the simplest rules at times (that’s why playing games can be hard), to manage his frustrations and the resulting emotions, even regulate his inhibitions to keep up from getting himself into dangerous situations.  He’s not thoughtless or defiant or out of control.  He just can’t manage all the activities of daily life like the majority of people can.

I think more people struggle with this disability on varying levels than we think.  The ability to focus on a task for a long period, or manage time well, or understand the sequences to a task, or even listening for long periods of time… all this and more are a part of executive function.

What does this mean for Jax?  Well, now it means that Mom and Dad and other important people have to help be his organizer and regulator for the time being as he learns to compensate for some of these struggles.  It means that he may never be completely independent, depending on how much he’s able to retrain the areas of his brain that still work.  It means that he’ll always need us.  And for his Momma, it means I can’t die young.

It also means our family adjusts our life some according to this.  The four of us all are learning to work together to help each other help Jax.  Emme is especially good at helping him when his frustrations get the best of him.  I’m really good at knowing what tasks he needs reminders on.  Hubs is really good at helping him focus at times when he struggles.  And we’re so grateful that Jax’s teachers, support workers and therapists all understand (or are beginning to) that it is not a matter of bad and inattentive behavior, but rather for all of us to find ways to help Jax accommodate for the areas where he has challenges.

For today, I celebrate TWO good days!  TWO in a row!  So thankful…

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