Tuesday, September 27, 2016

Halloween of the Living Dead

I do not like scary movies.  I don't like scary halloween decor.  I don't really enjoy horror anything.  But parenting is not all about me is it?  It's about my kid.  And Little Man  has always had a passion for all things grisly especially the Spirit of Halloween store.  He counts down the days until it opens every year.  So no matter how uncomfortable personally or concerned parentally - I take him and we browse the macabre together.  He always wants to buy something and I have always resisted anything but the most tame.  It creeps me out enough to be in the store - I don't want to stumble across the stuff at home.  

He has recently nagged me into letting him buy this ghoulish baby doll from the store however. It is ugly as sin and says all kinds of creepy things to boot.  Believe me when I tell you that this is the last thing I wanted to plunk good money down for.  

The thing is I had no idea what was really going on.  Spending time with him there and talking with him about an item that is WAY out of my comfort zone was amazingly revealing.  You see, it just doesn't register for him that "My favorite color is red, blood red" or "I left you a surprise – it’s in your bed" are threatening.  He thinks she is being nice.  And as for her ghastly looks,  he told me he wanted her because she looks like she needs him because people have been mean to her.  So really, I ask you, what could I say at that point?  

I bought the thing.  And I felt like I was doing the right thing

Moving forward a few days.  He just adores his "Rosie" and sings to her, rocks her, wants to take her everywhere.  And he wants everyone who sees her to love her just as much as he does.  He cannot understand why people would find her scary - especially after he has reassured them she is friendly.  It hurts his feeling deeply when people say she is ugly or he is creepy for loving on her and not only can I not figure out how to make him understand.  I'm not sure I should even want to - shouldn't we all love those that are lost and broken?  How can he believe me when I tell him different isn't bad its just different, that his way of seeing the world is just as real and valid as anyone's  if I don't model it - even when it makes me uncomfortable.  

So if you see some awkward mom out reassuring everyone weirded out by her little boy loving on a grotesque nightmare babydoll - keep in mind she may not be in denial about her budding deviant.  She may be me - encouraging the kindest Little Man in the world to just be his wonderful self.  

Wednesday, September 21, 2016


Little Man has always taken intense likings to specific words or sounds.  He repeats them over and over, in high squeaky tones or low booming ones, whisper quiet or ear piercingly loud.  He's never shown much interest in the meaning or context of the current favorite.  This week however, has seen a new development. I found him yesterday spinning in circles and mumbling something I could not quite catch under his breath.  What'cha doing buddy?  I asked,

I'm REVELING he sang out, still spinning.  And sure enough revel, revel, revel was what he was repeating.  Do you know what revel means? I asked him and he stopped cold not even swaying - when I would be staggering from the constant spin.

"Sure" he says, "I'm liking it a super lot"  and off he went spinning and reveling away.

After spending time on some of the negative stats surrounding FASD again, I needed to write this.  He reminds me of my friends RJ and Savanna and their word salad just now.  I really need to get them to explain it some time as they understand it.  From the out side it looks like just tossing certain words back and forth to each other - ones that satisfy their ears and mouths I assume.

But I watch how happy it makes them and it makes me smile to see.  I see the healthy, happy, wonderful people they are and I see the reflections of them in my Little Man,

And I am reveling in Little Man's revels.

Image is children playing on metal playground merry go round

Thursday, September 15, 2016


There has been some stir lately over another blog post discussing the average life expectancy of a person affected by FASD.  The statistics currently published state average life expectancy for someone affected by an FASD to be 34 years of age. 


Let that sink in a moment.

Now an average life expectancy is just that - an average.   So by definition some people will live longer, even much longer, but some will live shorter, even much shorter.  The thing about the number 34 that makes an impact on me in a logical sense is that the average life expectancy for the general population in the US is 78 years, in the UK 81 years, Canada also 81years, but the average expectancy for persons with FASD is 34. Will some people live longer than 78- 81 years in the US, UK and Canada - sure. Will some live shorter - absolutely.  But the difference in average life expectancy is MORE than 50%!!!

To put it in an even wider perspective – people affected by FASD have a lower average life expectancy than  the average person in countries with the lowest overall life expectancies in the world (per the World Health Organization’s most recent statistics).  Sierra Leone, the Central African Republic, the Democratic Republic of the CongoGuinea BissauLesothoSomaliaSwazilandAngolaChadMaliBurundi, Cameroon, and Mozambique all have average life expectancies that fall between 48 and 60 years.  It’s no accident that these are also listed as the poorest countries in the world. 

It is absolutely unacceptable that the average life expectancy of someone with a neurocognitive disability be less than half of that of the general population of the same country.  That the difference in average life expectancy for persons living in a first world country to compare so unfavorably to the poorest of the poor boggles my mind. Especially because those with FASD do NOT have to have such reduced life expectancy. If our countries were putting more time and effort into studying the real health challenges associated with FASD and supporting the neurocognitive differences associated with it that average could absolutely be improved.

To look at the number yet another way – Autistic persons have an average life expectancy of 54 years – lower than the general population in 1st world countries but significantly higher than 34.  The average life expectancy for Autistic persons has also been increasing – at a slower rate than that of the general population but with a noticeable trend.  The statistic for those with FASD has not. 


I never would have believed that one number could loom so large.  


My Little Man just turned 10.  


If we both live out the average life expectancy for the population we fall within, my son will die 2 years before I do.  



Just, NO

I cannot and will not accept 


Friday, September 9, 2016

This Day

This day - 9/9 - I have no idea what to write. 
Those of you that know me already know what this day means. How can I say anything differently than what you hear from me every day - post after post - until you are probably tired of it all. I think about the news stories I see - the pain, the struggle and the losses that accompany undiagnosed and unsupported FASD. And I think about the strength, the resilience, the energy and dedication of the affected people I know. How they keep fighting to make a difference. I think about the absolute joy of my son. 
How can I possibly find the words to make the world see what it doesn't want to - to see how we are losing SO MUCH by not supporting all people whose brains operate a little differently - even if their differences were preventable. I see people stepping up to the plate and talking about the value of Autistic minds, ADHD minds, OCD minds. Not enough yet - not nearly enough but starting those conversations. 
Why can we not include FASD minds in that? Why must our only focus be on preventing these vibrant creative beautiful people, like James Gideon, Savanna Pietrantonio, Toya Amelia Bermudez Myles Himmelreich R.J. Formanek, my brother William, my son from existing? Why can we not spread the message that not drinking while pregnant is important but that supporting and valuing folks that are affected by fetal alcohol exposure EVEN MORE IMPORTANT. Why aren't people that actually exist right now more important than people who may exist someday?

I don’t have any answer.  I only know I have to keep trying.