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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. 

34

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 Congo, Guinea Bissau, Lesotho, Somalia, Swaziland, Angola, Chad, Mali, Burundi, 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 1^st 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. 

34

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

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My Little Man just turned 10.  

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

Impossible

No


Just, NO

I cannot and will not accept 

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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.  

8 out of 10

There are a lot of people touting an 80% divorce rate for parents of special needs children.  The statistic gets so widely hyped that although there is NO research to back it up its almost universally believed.  There are some limited studies showing less shocking increases in the rate of marriages failing for special needs families but honestly my heart is not in the search for an objective truth at the moment.  Because you see my marriage is going to become a part of those statistics.  That is a hard, dreary, depressing thing to type.  Knowing you have failed at something so important is, well, it's not an exaggeration to say it shakes me all the way to my core.  My very identity feels shaky.

I'm not going to talk about fault or who has done what to whom here for a lot of reasons.  I've never been comfortable with the extent to which people seem to live all of life out in the public eye these days.  And although I can see many of the mistakes or missteps that happened in our relationship along the way (on both sides) I can't quite grasp how we went from having the usual stresses and dissatisfactions that occur in any relationship to where we are now.  Finally, as one of the two people in the relationship ending - I could never be an objective reporter and airing only one side of a disagreement strikes me as fundamentally unfair.  

I will say this, our children - both of them, are not to blame for this.  No matter their issues or the stresses those issues may cause - they are children and not in any way at fault.  Fault, if blame must be laid, rests on my husband and I.  We are the adults that made promises to each other and we are the ones choosing to lay those promises aside.  I know I have not handled this well up to this point.  I've let anger and grief and fear have the upper hand.  That can't continue.  

And so I'm taking some time, to put myself back together, to find a new vision of what my future looks like, and a make a new plan for how to get there.  I'll try not to take too long.  I promise to be back.  

The Golden Ticket

There are too many things crowding my brain these days all competing for attention at the same time like a bunch of unruly toddlers constantly interrupting each other and shoving one another out of my lap before I have even registered fully which is there.  I can’t seem to impose any order there inside my head so I’m spewing them out here in hopes that on paper they will be more manageable.  That I’ll be able to order them into some understandable pattern I can then address.  I have to stay as I get started I’m not very optimistic.

Little Man told me a story this morning.  Or more accurately I coaxed one out of him based on a random comment he made to me.  As we were driving back from the grocery store he told me

“Mom I wish I could dive in the pond and swim with a fish.” 

I could have just let it go with a “Mm Hmm that’s nice honey”  (I’m ashamed to admit that many days I probably would have – I let myself get to busy with things that don’t really matter)  But instead I turned down the radio and asked him, “What would you do with the fish?”

“We would play tag” 

“What kind of fish would this be?” 

“Big….and friendly …. And white with black fins and tail.”  (This, of course, is the color of the gold fish that swims the little tank in his room) 

“And what would you do after you finished playing tag?” I asked. 

“We would eat peanut butter sandwiches and laugh and laugh and laugh.“

My brain is trying to weave all those many things that have been jumping about in my head into that short interchange; Little Man’s communication struggles and what to do about them, his trouble making friends at school. The behavior issues we’ve been seeing at school (and home),  the wider issues with public schooling in general, the need to make the world more inclusive and accommodating.

How easy it is to miss what is really important in an interlude like this if we don’t stay in tune with what is going on in each moment!  Little Man’s inner life and imagination are so rich.  Yes of course it must be frustrating for him to struggle so to share it.  There will always be time to worry that his imaginary friends dominate his life because he has so few real ones.  And time to be sad that the world is so rushed all the time they can’t slow down enough to know him.  But the real wonder here is that he stays so sweet so funny and so interested in the world that rushes by him. 

I have no idea where I am going with this post.  Trying to spill my thoughts out on paper is not making them any more manageable.  I am sad that I can’t seem to find a way to make the world work better for my beautiful boy but I’m also so overwhelmingly happy that I have him, that when I remember to slow down and really try, I can peek into his world.  It is a world of magic and whimsy.  It is such an unimaginably lovely place, one where little boys and silvery white fishies slump together in tired contentment munching on peanut butter sandwiches after a long golden afternoon’s play.

I stumbled across an artist James Browne recently – one that draws fairies and elves and magical pictures that he inserts his own little boy’s image into.  I wish I had that kind of talent.  I wish I could illustrate my Little Man’s dreams but sadly I struggle to make stick figures look presentable.  I suppose that instead of bringing his world out for all to see what I really need to do is spend more time entering into it with him and just enjoying the fact that I am welcome there.   I am one of the few, after all, that has been granted an entry ticket.

The Most Important Part

I was beyond privileged to participate in the Anishinabek G7 FASD conference last week in Sault Ste. Marie, Canada.  The conference was hands down the most positive experience I have had since starting my journey with FASD.  There was no sleight of hand or Pollyanna-ish glossing over the difficult realities that surround those affected by prenatal alcohol exposure but there was a pervasive faith in the ability of all those affected to rise above the challenges and a focus on what was needed to make that possible I have never seen at any other event.

The shining stars of the event were those that live with FASD every day.  To RJ Formanek, James Gideon, Savanna Pietrantionio, Tanya Northcott, Amy Shawanda, Julian Assinewai, Matt Sinclair, Myles Himmelreich, and Daniel Cutknife, Thank you – thank you so much for being willing to share your lives and experiences with all of us.  Your stories moved me to tears – more than once.  In fact by the second day I had given up on mascara entirely.  Never doubt the power of your words to make a difference in the world.

I participated in the conference as speaker as well as an attendee and the sessions I led were new for me.  When participating in events like this I usually confine my topics to factual information – things like specifics about FASD  prevalence, primary and secondary characteristics, the connection between brain function and behavioral symptoms, and sensory issues.  I use lots of power point slides of brain images and research studies to make points.  This time I chose to simply talk with the participants, to ask them to engage with me in imagining a world where seeing, hearing feeling things differently from one another didn’t make one of us right and the other wrong but both of us just another facet of the human experience.  I asked them to step outside the box with me, and with all of our neuro diverse brethren and just be – without needing to delineate the differences between us. 

It was very scary for me.  First of all because I am hopelessly neuro typical and I LIKE my box.  I find it very cozy.  Also because I am used to relying on my slides and facts to keep me insulated from connecting with strangers.  I am not comfortable in a large room of folks I don’t know.  So having a formal “role” with the appropriate props helps me manage that.  I believe all humans have our own strategies we use to buffer us from the parts of the world we are less comfortable with.   Putting aside my buffer felt important when I was talking about how we expect – even demand - that those who are neuro diverse conform to the boxes that make us neuro typical types comfortable.  We often describe people who are neuro diverse (be it FASD or ASD or other forms) as rigid, inflexible in their thinking, perseverative  in their habits etc. which makes it funny (sad funny not genuinely amusing) how rigid, inflexible and insistent we neuro typicals are in trying to force those that think differently into doing things the neuro typical way.

I try very, very hard to live outside my comfy box with my son every day.  Allowing him the “room” he needs to thrive without constantly bruising himself against walls that I may prefer – but do not NEED to be present in the same way he NEEDS them to be gone.  I fail often, imposing expectations that are completely irrelevant simply because they are “usual”.  Thankfully he continues to bloom in spite of my bungling.   For me the most important part of the conference was the words of one of the attendees on the fetal alcohol spectrum about my session: 

“I really need to hear your presentation again. Mesmerizing. I’ve never experienced that acceptance before. Your words are words I need to hear over and over until one day I believe it!!!”

No matter how often I fail - I cannot ever stop trying to speak and live acceptance every single day – because I want my son to know – without doubt – with no need for convincing – how wonderful he is just as he is.  Thank you to the conference organizers and all of the participants for reminding me what is most important about this journey we are all on.  

Little Moments

Watching my son write  "I love you" in the frost on my car window makes up for all the rough starts we have had or ever will have.  

The Hardest Part

I was asked recently, “What is the hardest part of parenting a child affected by FASD ?”  I was rather stumped by how to answer the question.  Should I say – it’s all hard?  Because it is.   That makes it sound like it is only hard and nothing could be further from the truth.  I find great joy in parenting Little Man but there are certainly hard parts.   Besides it feels like a brush off and really it does nothing to help people understand.  So then, what do I say?  What is the hardest part?

I could talk about the sleep issues.  It’s been 7 years since I’ve been able to count on stringing two decent night’s sleep in a row.    It is better now than it has been in the past.  I can remember a time when I was lucky to get 2 hours sleep a night.  You don’t really “function” on that little sleep – in fact I can’t say you even really survive – more just exist.  It was brutal.  Even though it is better than that now it can still be very hard.  But is it the hardest?

Or is the hardest part feeling like you have to be on your toes with an eagle eye out for every possible thing that may happen next – so you have a plan for addressing it – for smoothing the way- the unrelenting  vigilance you need to maintain that feels almost like being in combat zone? 

Is it the million and one appointments, details, schedule adjustments, medications, therapies, preferences, and accommodation strategies, you need to carry in your head?

Is it the judgment you come across in the teachers, administrators,’ doctors, therapists, family, friends and even random strangers in public places?  How dare she let him get away with that kind of behavior?  What is wrong with parents these days?  I would sort that out in a weeks’ time let me tell you.   

Is it that there is no “expert” to turn to in the field that knows just how to resolve your child’s issues?  That in addition to no experts there are rarely even people more than passingly familiar.  That every place you go you have to be the one to educate.  And that in many places even though the person you are dealing with is totally uninformed your knowledge, experience,  and input will be immediately discounted because YOU are not considered an expert – you are “just a mom.”  So you have to act as if you are completely certain – so that people will listen, and even consider just a little what you are advocating, all the while you are desperately uncertain and wishing there was some certainty, somewhere you could find to answer your own questions.  Is this really what is best for him?  How do I help him the most in the long run? 

Is it the endless debate you hold with yourself and the world about to medicate or not?  There are worlds of words I could write on that alone. 

Is it the outbursts of violent behavior that happen?  Is it worst when they are nearly constant rages or when they are sudden and unpredictable storms that come out of nowhere?

Is it the medical emergencies,  the constant noise,  the  co morbid psychiatric issues, the stress, the depression, the tension on other relationships?

I think the answer is that the hardest part is the part you are struggling in right now whatever part that may be.  The hardest part changes from person to person and for any one person from day to day struggle to struggle.    We had a rough morning Little Man and I.  I was overtired and I did not cope well.  I left him at school feeling wretched.  Like I’d started both our days off on a horrible note.

Today for me, the hardest part is feeling like I’ve failed him and not for the first or last time.  The hardest part is knowing that at its very worst for me – all of this is still easier than it is for him; that while I have one small person to deal with whose mind and reactions and impulses are not intuitive to me, the whole world is foreign to him.  I deal with one small fraction of what he copes with all day, every day.  For him the entire world is too fast, too loud, too abstract, too arbitrary and too rigid.  The hardest thing is listening to him cry because “Nobody doesn’t like me.  I must just be bad all the time.”  The confusion and alienation and pain he suffers.  For me, for today - That’ I’d say is the hardest part.