This blog is a place where we can join together and provide understanding, help, and resources to help one another find our way through this journey. Living with FASD is often a challenging journey with many different 'waves', 'storms', and even 'hurricanes', and we're here to help each other as we journey through these challenges, but would ask that comments remain positive, uplifting and helpful. Thank you.
"Acceptance doesn't mean resignation. It means understanding that something is what it is and there's got to be a way through it." -Michael J. Fox

Monday, July 21, 2014

Birthday Gifts

My daughter had a birthday yesterday.  We have loved, struggled, triumphed, heart-ached, laughed and cried through 14 wonderful years.  Isabella is a gift!  She was adopted- we always like to say "was" adopted not "is" because it was just a one time event.  Something that happened on certain day 14 years ago and not part of who she is- it is not her identity and neither is FASD.  FASD is just something that happened to her that has made her brain work differently.  It isn't who she is.  She lives with the consequences of FASD just like she lives with the consequences of being adopted or being a second child- but it isn't WHO she is.  She is an amazing, valiant, courageous, child of God who I believe is here to teach me.  She bends me further than I thought I could bend.  I have learned I am stronger and have more endurance and patience than I ever believed.  That is a gift!  She is my mirror, she holds it up for me to see all of the ugly, untamed, unpolished, and hidden parts of my character that I need to notice and refine.  That is a gift!   She forces me to think about things in a different way and to live more consciously.  Because her brain works differently I have to pay attention to how my brain works, how and what I think.  There is no yesterday or tomorrow with Isabella, when I'm with her I'm in the moment (I usually call this impulsiveness but "living in the moment" sounds so much better ).  That is a gift!  She makes me question things I have never questioned, she draws attention to things I have never noticed.  These are all gifts!  Fourteen years of painful,  wonderful, soul-stretching gifts!

Tuesday, July 8, 2014

Am I crazy?

One thing about living with a child with an FASD is that I often feel like I might be going a little crazy.  I think I'm a fairly sane, realistic person grounded in reality but when you are trying to get information from a child with an FASD it can rock your formally grounded, sane world.  It also makes you doubt your own senses, not in the normal funny way but really doubt them. 

Today my daughter Isabella was peeling a large cucumber, I was going to use said cucumber for dinner so I asked her if she had peeled the entire cucumber. No threat, just a question.  She said "no" but in the 14 years I have known this girl I have learned a few things and one is don't believe a word she says.  Not that she is really lying but she bends and twists the facts into an unrecognizable ball of stuff that can only make sense to her.  I think it's called confabulation but it should be call confuse-you-lation because that's what it is- confusing!  It leaves me scratching my head and saying out loud, "huh"?  

The cucumber was no different.  I asked her to show me the cucumber and when she held it up, the entire thing was peeled, the entire thing all the way to the stem.  I said, I thought you didn't peel it all.  Now this is the mind blowing part, she said:" I DIDN'T ".  Yet, I am looking at an entirely peeled English cucumber with my own two blue 20/20 eyes.  I almost wondered if I was going blind or really was losing it a little because she said it with such confidence while simultaneously displaying the evidence. It made me doubt myself, but just for a second (I'm no rookie).

This is such a small thing, it's only a cucumber, but it illustrates a bigger point that these kids can really push you to your mental breaking point.  I know I have 14 years of experience under my belt but I'm still surprised that I'm surprised by these types of behaviors.  We have dealt with lying, skipping school, stealing school supplies from teachers, stealing money from siblings, stealing candy at home, stealing candy at school, stealing candy at friends houses, stealing candy from little children (you get it) and lots of other stuff in just the past 2 months yet, and yet, I AM STILL SURPRISED!!!  That is what's crazy.

Isabella is the most charming, darling, helpful, pure, good through-and-through child.  This type of bold-faced lying stuff is not her and it's not her fault, she just says whatever pops into her head.  She doesn't have the benefit of an executive filter like we do or that ever-so-important cause and effect reasoning.  And since she is usually trying to dodge trouble or stay afloat she just says the thing that she thinks will have the best outcome for her.  It's a crap shoot for her, not a matter of what is true and what isn't.
I'm not sure she actually knows what the truth is sometimes.  Like when she told me a story yesterday about a girl (we'll call her Em). Em was Isabella's Jr. high friend for a short time but is now mean to her because according to Isabella, Em had to move to a new home and neighborhood so it has made her bitter and mean. I thought, hmmmm, that is what Isabella really believes. That's how she is making sense of this mean girl.  When I offered some other reasons that Em might be mean to her (such as she didn't like Isabella lying to her ) she was surprised and perplexed. The truth of why Em is mean to Isabella makes no sense to her.  Funny!  Ironic even!   I am surprised and confused by the "lies" that Isabella tells and she is surprised and confused by the truth!