Thursday, March 6, 2014

Oh My God – They are all LOOKING at me!!!

(Is that worse than no one looking?  I don’t know.  Pull your self together.  Head up.  Shoulders back.  Smile.)

Today I received an e-mail that made me laugh and cry at the same time.  I’ve been going through a rough patch and so when I received a draft of the post that  A Diary of a Mom  will be posting tomorrow I desperately needed the validation and spirit boost it offered.  We are currently staring into another round of surgeries for my son to correct physical birth defects caused by fetal alcohol exposure, adding to that stress is the crushing indifference both our latest FASD fundraiser and training class have been meeting with locally.  (We are doing better in other locations but to be so dismissed where I live is demoralizing)  Our family also continues to struggle with lack of understanding at school for Little Man’s sensory needs.  Oh, and just a few days ago, I experienced a computer crash that has wiped out 2 years’ worth of work, personal and professional.  Yeah, you might say my spirits have been “a bit” low so the incredible generosity from Jess, whom I both respect and admire, overwhelming me?  Not really a surprise. 

What was surprising was the rush of fear that followed that lift.  Diary has a huge audience.  Not only is the scope of the audience daunting but, well, Jess is an awesome writer.  She blows me away with just about every post she writes.  (I actually would like to be her when I grow up)  Anyone that came from her page would be comparing me to that.  OMG!! What have I done?!? Is the web page ready?  I don’t know.  Maybe.  The blog is not ready. I’m sure of that.  It’s not well edited enough. There are not enough posts.  It’s not persuasive enough.  There are no colors or visuals.  It doesn’t have enough factual information.  I’m not qualified enough for this.  I’m not eloquent enough. I’m not anything enough. (Danger! Danger! Whirling red lights.  Blaring sirens.  Panic attack in process.  Total system shut down imminent!)

As I slowly resurfaced from that that moment of sheer terror something crystalized into conviction for me.  Too much of my parenting, too much of my LIFE, from the moment I finally accepted Little Man’s FASD diagnosis and started researching it, has come from fear.  This is not a new thought for me.  I had already brushed up against that topic here

Anyone researching FASD runs into statistics that range from grim - about 40% of individuals affected by FASD will not finish school, to terrifying - 70% will be institutionalized in their life for alcohol and drug problems, mental health reasons, or crimes committed due to their impulsivity and vulnerability.  But it is time to think beyond those statistics.  It is not time to bury my head in the sand (been there done that) or even to just say “No way not for my son” (been there for a long time too) but time to find things to say YES to,  things for me as well as for him.   Fear is not where I am willing to live anymore.  If you get back from the world what you put into it I have to stop living from a place of fear, negativity, isolation, and anger because that is not what I want for my son, our family, or for myself. 

“Be the change you want to see in the world” Mahatma Gandhi says.  I want a joyous, positive, connected life for my son, and for all of my family.  So I have to start living from this place:  My son is enough.  He is more than enough he is a wondrous gift to me and the world.  I am enough.  I am, in his words, the best mommy in the whole world.  There is enough for us to make a change; enough love, compassion, connectedness and enough people willing to help.  Those horrible statistics are what has been true but they are not inevitably true for the future. 

And in the spirit of living in a world where there is enough and I am enough,  instead of rushing to change, update, correct, and otherwise scramble to be worthy of the generosity Jess has extended,  this blog – as it stands - is what I have for you in all its imperfection.  I hope you will consider taking action on the advocacy letter.  And I sincerely hope you will come back from time to time.  


  1. Thank you for allowing Jess to share your story, Tina. I work in special education and don't actually have any autistic students in my current class, but reading DOAM has still offered me so many insights applicable to our shared world. I look forward to learning more about FASD and I am sure I am not the only one who will benefit from your imperfect work!

  2. Katy Thank you for coming by. If you teach - you teach , have taught, or will teach children affected by fetal alcohol exposure. If anything I write helps you understand and support them then I am very very happy to have been of some small help. Most kids on the FASD spectrum are never diagnosed and only about 10% of those affected actually have any physical characteristics. All children affected have brain differences though (varying along the spectrum of course. It makes me crazy (and a little negative) sometimes how little awareness there is of FASD but I'm trying to learn from Jess. Her writing - its positive, inclusive and uplifting power are an inspiration. I hope you will stop by again from time to time - and talk to others you know about FASD too.