Reveling

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

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.  

Now is Not Forever and Never is a Load of Crap

I’ve been pretty busy working and “mom-ing” and just living lately (especially since school has let out) so I have not been doing much writing here recently but then I read this and this*  and this* too and  I felt like I needed to get back to writing.

So I’m trying to carve out some space to do that.  It won’t be as much as I want because all the working and the “mom-ing” and the living never stop (nor would I want them to) but this stuff – this "oh yeah we need to be speaking out – we need to be creating the future world we want for our children" - can’t stop either.  So I promise I am going to try to do better.  In the mean time go read what they wrote.  Its important. 

Its so easy to get lost in the "cants" and think they mean "never will be able to".  If I stop myself and look back though - even at 8 - even at 8 that is way behind typical 8 year olds - Little Man has already done so many things I thought he never would.  There was a time when I was sure he would never speak, and then, when he proved me wrong, that he would never speak more than one word at a time.  Now I have reached that blessed place where sometimes I wish he would just STOP talking for a few minutes.  Seriously - I am grateful for that.  (Not always in the moment of course)

I've been so worried as last school year drew to a close about him moving into third grade - in our district 3rd through 5th grade is in another building.  So he will go from being with kids who are 4- 8 years old to those that are 8- 10.  Emotionally and socially he is more similar to the 4 and 5 year olds than the 8 - 10 crowd.  To try and deal with MY stress about this (and that's what it is - mine - he doesn't appear concerned at all)  I've chosen not to really spend time on academics with him this summer.  We usually do some kind of summer program and sure we  could spend the summer trying to make sure he knows his math facts or pumping up his reading level but I'd rather spend it thinking about how he can be happy and secure.  Because his mind - his amazing, fascinating, busy brain is always, always learning.  When I can manage to take that mental half step to the side and look outside the conditioning and "things I already know" sometimes I manage to see things the way he does.  And I have to tell you - it is beautiful.  So I'm going to add my "have faith" to the far better written ones I linked to above.  Let's allow everyone to unfold their abilities in their own time.  

The world seems to push so hard at conformity of thought these days at least where we live.  I know to some it doesn't seem that way.  Each social change and advancement in acceptance of the rights of others seems to create a backlash of anger at those who are different at least for awhile.  So it is even more important that we keep looking for ways to push at the world gently to make space for and to appreciate neurodivergance.  Little Man and I are working mostly on making sure HE knows difference is just fine and his way of thinking and being is just as valid as someone else's and that the world is better off for having both.  We are reading a lot as part of this.  Two of our current favorites are Is There Really a Human Race? by Jamie Lee Curtis and Laura Cornell and The North Star by Peter H. Reynolds.**  Both are good books to start talking with little ones about people all being different and appreciating those differences.  I will say they can be a little too figurative for those that are very literal minded like Little Man.  So we read them together just as they are but I also interpret them in a more literal way when I read them aloud and we look at the pictures together.  And we talk about them.  A lot.  And he enjoys doing that.

I get caught up in wanting to change the world sometimes but its just as important being there for Little Man, helping him make sense of his world and himself.   Where he is now is not forever and saying "he will never" is a load of crap.  Where he is now is awesome.  We have "forever" to get where he is going.  And we can enjoy the whole journey.  

* I have to give credit for the title of this post to and thank Jess at  a Diary of a Mom for bringing the items I linked to my attention.  Seriously if you are looking for one place to read I always recommend Jess.

**  Peter is unbelievably awesome.  I wrote an online review of one of his other books that Little Man was having a hard time relating to and Peter actually took the time to reply to me and offer to set up a skype session to read and talk about the book.  I was blown away.  What an amazing person.  

Non Speaking

I'm having trouble composing my own words right now so I thought I'd share with you a few things I am reading.  These are primarily from the adult Autistic community.  I long for the day when more of our adult FASD community speak out as freely and prolifically.  We so desperately need their voices.  I really believe it is the voices from within the Autistic community that has finally begun to turn the conversation from how to fix or force those who are neurologically different into the neurotypical mold.  Having the adults from our community add their voices would be a powerful thing.

Radical Neurodivergence Speaking

We Are Like Your Child

Just Stimming

Outrunning the Storm


Ann is one adult on both spectrums that blogs - Check her out for sure.

Living With FASD

AWESOME NEWS!!

I've buried the lead so - your going to have to read all the way to the end to get the good news!

Image is a Charles Schulz Peanuts cartoon 

altered by me so that the characters are wearing red shoes.

Anyone that knows us knows why FASD is so important to our family.  We knew Little Man had FASD when we adopted him, in many ways that made us “lucky.”  We were able to bypass the many years and many, many specialists most people have to slog through to get an answer that made sense.  What we still faced – and face each and every day - is that almost NO ONE knows about FASD.  That makes me ANGRY and SAD and just about drives me CRAZY.  FASD - is nothing new, nothing mysterious, and most assuredly nothing uncommon. The CDC may estimate FASD at 1% of the population but the DSM V says about 2-5% of the population is affected and some studies put it at closer to 12%. That means AT LEAST 80,000 babies each year are born with it in the U.S. and it is probably closer to 200,000.

So WHY doesn't everyone at least know what it is?  Why don't we all know more a lot more than that about it? Why is there no research on what prevents the poor outcomes people affected often suffer in life? Why don't we have support systems in place for them? Why don't we have specialized health care providers for them like we do for other disabilities?  Why is there nowhere in the US you could even get a degree (no less an advanced degree) specializing in FASD?

Just looking at a few statistics about people with disabilities supported by our government you would see the following:

Category                                   % of Population                         % of funding

Musculoskeletal disorders                     13%                                         32%

Blindness                                              2.3%                                         2%

Deafness                                              2.1%                                         2%

And then there is FASD.  It is not even considered a disability.  If the person affected has an IQ below 70 they may be able to qualify as intellectually disabled.  But people who are deaf, or blind, or mobility impaired do not have to prove any intellectual impairment to have their challenges recognized and supported, only those with FASD.  Comparing it with autism for a moment - 1.5% of the population is considered on the autism spectrum.  3% of government monies are spent on support for those people and there is no requirement for them to show intellectual impairment for diagnosis or support. 

I am not by any means suggesting that autism, or blindness, or deafness, or mobility impairment are unimportant.  I am only contrasting them with how consistently unknown and  unsupported FASD is.  So what is the reason for such persistent discrimination?  I believe that it is in a large part because public messages and education about FASD are universally about prevention.  The mission of the ONLY large national organization focused on it is (and has always been) prevention.  Of the 30,000+ published articles on FASD fewer than 10 focus on how to help people with it.   No one is looking at the people already affected – they are the throw-aways, the “it’s too late let’s move onto to stop the next generation” and that attitude, that stigma of being the “unhelpable” becomes self-perpetuating. 

This prevention only focus is why everywhere our family goes we first have to convince people that Little Man CAN succeed, that he’s worth the effort, and then go on to teach them about what he needs in order to do so.  But even before that, we had to educate ourselves. Because just knowing a diagnosis doesn't really help you understand what FASD is and how to help your child (or brother, or sister, or parent, or husband, or wife, or employee, or client.) Nope. A diagnosis is just a diagnosis. And resources to learn about FASD, even if you are a highly motivated caregiver for someone affected, are few and far between. 


Anyone who knows me knows that I can't just let things go.  I always have to have a plan.  I got truly lucky when I met Adrienne Elhart Bashista.  She was already hard at work setting up a nonprofit to operate nationally spreading the kind of training and awareness we really need to help those with FASD and I was thrilled to join in and help her found Families Affected by Fetal Alcohol Spectrum Disorder (FAFASD).  Parents need the training FAFASD offers, spouses and significant others need it, educators, doctors, nurses, lawyers, social workers, police and judges, counselors, employers, everyone does!!   Please visit our website at www.fafasd.org and consider making a donation to help us reach more people!!  

And at last - here is the good news - WE ARE OFFICIALLY 501c3 RECOGNIZED!!!  We just got the letter from the IRS.  This means any thing you give is 100% tax deductible and we can now apply for grants and sponsorships!    

Writer's Block

There is something I want to write about but I have been tripping over my tongue trying to get it out.  I was talking about it today with a very wise friend, James Gideon, who happens to have FASD.  With his permission, here is our conversation:

Me:  I've been working on a post on how much knowing a community of adults with FASD is out there inspires me, how much hope it gives me for my son and my brother but I am having a hard time finding the right words because the inspiration I get from you guys is just so BIG.  None of the words I come up with seem enough.

 James:  Then say exactly that

Me:  It’s so important to me. I want to say it RIGHT.  I am tired of the public conversations around FASD always being about prevention.  Honestly, I don't want to hear about prevention at all anymore.

To me a “prevention only” message says that my son, my brother, you, RJ, SavAnna and all the others affected should have been prevented from being who you are.  I can’t say that.  I can’t even think that.

I LIKE you all – I even LOVE some of you, exactly as you are now.

So what I want to hear is us talking about is how to make the world work for people with FASD - how to just make things easier for folks affected

James:  Well that's what I would write, what you just told me. Write it from the heart.

I still hemmed and hawed a bit but in the end I decided James is right.  It’s more important that I say it at all than whether I say it just right.  So there you have it. 

I can’t get behind anything that says these folks are less than, or should never have been, who they are.  I do not like them in spite of their FASD, nor do I find them inspiring because of it.   I just like them. I am inspired by them because they are awesome people.  They are individuals with a lot of life experience, wisdom, compassion, energy, passion, and quirky humor.  FASD is an inescapable part of who they are but only a part.  I say inescapable because it is exactly that.  They do not “have” FASD like someone has a sweater they might leave behind or throw away.  They live with FASD and they do it very well.  I want to see us working, like they are, on making that possible for all people affected.  

You can check out the awesome James Gideon  here  if you would like to hear more of his great advice.  He's also given me permission to share some of his "FASD Tidbits" here from time to time.  Thank You James!!! 

Speaking with a Different Voice

The letter below is one my brother John wrote to his mother while he was in drug boot camp following his parole violation I wrote about here.  So many people, including me,  parenting children with FASD struggle with our feelings toward birth mom's that drank while pregnant.  We tend to be the louder voices more often than the people directly affected.  This weekend I took John to visit his mother's grave.  I wanted to share his thoughts and feelings in his own words.  With his permission of course.

Dear Mom,  

                                                                                                                                               

There are many things I never had the chance to tell you for closure.  I know we talk every night when I pray but my thoughts are always very scattered and I wanted to write it down so you can see it in some type of order.  First I would like to say I love you and miss your presence very much.  You always knew how to brighten up a room in every room you walk in.  That to me was an amazing gift.

No matter how many times you left me that hope you would come back to make everything bright always remained. Every night I prayed for you to get better and every day I waited for you to win your struggles with addiction right up until you finally left this earth.  Never was I mad at you, Mom.  But when alcohol and drugs finally took you my hope was crushed.  That hope was the thing that held me together.  Not once was I mad at you.  Even though your addictions caused us a lot of hardships.  In my heart I know you did your best and you did everything you could to make us happy.   So never in the world would I have changed any of you.  You were so beautiful and such a free spirit.  I could tell that even when I didn’t see you from those photos of you with that crazy hair style. 

I know I may not always have been the best child or easy.  It was so hard to trust you whenever you came back but I always would in the end but it never would work out. And I have my own struggles now, Mom.  Most of the reason I am writing you is I can no longer hold your baggage and my own both.  That same weight that kept me together before, I fear it is tearing me apart now.  Today, I feel strong enough to heal and be happy.  I can work on my problems with addiction.  I can accept my disabilities from your addictions.  Being strong has allowed me to remember the good times with you. 

I will never know how you knew your time was up but I am so glad you came to me and I thank you for those last moments with you.  Those are moments I would like to remember so I could share them with my younger siblings and hopefully my own kids sometime in the future.  I feel stronger now because I can accept the bad and the good.   I can let it be past and make a plan for my future.   I am ready to forgive you and keep you in my heart with me forever.  I love you, John.

Seeing Through Different Eyes

A guest post from an adult with FASD, Leighann Ford.  I saw the piece below she had written and it moved me so that I had to get her permission to share it.  I am so grateful to the affected adults I have met.  They are incredibly generous sharing their thoughts and experiences.  They make me a better mom and advocate for my Little Man.

******

I think the saying that should be emphasized with FASD is one we''re all familiar with; "don't judge a book by its cover."
Sure, I look capable now... 
And for a short while I may be... 
But I cannot guarantee that long term I'm gonna be the woman for the job.

Don't judge me based off of the articulated roll of my tongue or the calibrated written word I put forth.

I will likely fall short of this as time drags forth.

And the thing I don't think people realize is how hard my self esteem is battered when I don't meet the milestones or the standard set forth by peers, teachers, parents, colleagues or spouses.

It breaks down my confidence and self esteem and I disappoint you, the person I so want to please more than anything.

I wish you knew how painful it is.

It can make or break me.

In both your eyes and my own.

I am hard on myself because I know my limitations.

I strive for MY best NOT yours.

Too bad they are both so different for if u could only see it through my eyes you'd really be amazed.

*****

I thought Leighann's words expressed perfectly what I have been trying to explain to Little Man's school.  (And what I seem to always have to remind myself of!)  The fact that Little Man knows things some times or can do a task sometimes does not mean he can do it all the time.  There gaps in his ability to retrieve information.  He's not being stubborn, or willful, or lazy.  He wants to do it.  He WANTS to please.  That is his nature.  Sometimes he just cannot.

Unintentionally we punish people affected with FASD for their successes by not seeing that it may not  be a sustainable state (or consistently achievable task) for them.  The variation may perhaps be caused by memory issues or perhaps because the tremendous effort it takes to produce that result is just not sustainable for long periods.  Either way its damaging to set them up for failure that way.

I am using Leighann's words to remind me (and my son's team)  to do two things:

First, compare my son's achievements only to himself.

And second, remember that he is not going to produce the same results consistently.  

And really, who does?  We are, all of us, humans not machines.  Neurotypical people may have smaller variation between their "on" and "off" days - but we all have "off" days.  Compassion and help really ought to be our default setting.

He's not a Fixer Upper

This isn't strictly speaking a “new” post since I've already shared some of these thoughts on Facebook and cribbed others from an extremely talented writer you should really check out.  I have her permission to share them and her approval on the few alternations I made, but even though she focuses on Autism not FASD you should still check her out.  There are enough similarities between FASD and ASD that her thoughts and posts are always extremely relevant, in addition to being lyrical and uplifting in a way I cannot manage to be.  I’m angry and snarky and fight off my fears with a bitter kind of humor.  It’s what works for me.  We all have to find our own way.

This particular post isn't going to be funny or snarky either though.  Just raw and I hope real.  First the part I want to share from Jess’s blog:

My child is not typical.

Trying to force him to be something that he’s not doesn't work. 

Let’s play a game, shall we? You, reading this, you need to have FASD now.

What?  But you don't have FASD?

Don’t worry; we’ll show you how. We’re going to give you therapy to give you FASD.

But I don’t have FASD.

Not really relevant.

But ..

We’re going to teach you to ACT like you have FASD.

ALL

THE

TIME

But ..That’s not who I am.

Yeah, we know, but you’re going to have to get used to it.

But it’s NOT…WHO....I....AM.

No, it’s not and it hurts to be told that who you are is not okay. That how you experience the world is .. wrong. That how you act is … wrong. That how you feel, think, express excitement, show fear, communicate joy, share sadness, and, and, and .. are wrong.

It is a life of No.

It is an environment of negative, toxic energy.

No. No. No.

Here have a gummy bear for not being you, a sticker on a chart for acting like something you’re not.

It is exhausting. It doesn't work. We cannot be who we aren't.

Even if we can pretend well enough to convince the panel of judges.

Pretending to be someone you aren't isn't a life.

It hurts.

And it hurts no one more than him.

I will not strive for normalcy for my son. It’s an asinine and dangerous goal.

Low self-esteem. Depression. Alcoholism. Drug abuse. Suicide.

No.

My son is not ordinary. He is not typical. He is not a standard-issue human. He is unique. He is himself.

I will do everything I can to arm him with the tools that he needs to get by in a world that doesn't fit. I will teach him what will be expected of him in every situation I can think to include.
And I will tell him, by word and by deed, that his quest is not to make others comfortable, but to find the space in which both he and others can be as comfortable as possible, together. That it is not a one-way street. That he has every right to say, in his way, the fact that I don’t fit the mold doesn’t mean that I’m the wrong shape. It means that we need a more flexible mold.

I once believed that normalcy was our goal. No more.

When I read this on Jess’s blog it made me cry.  And rage.  And cry some more.  This is what my son and all the others who have neuro cognitive differences deal with every.damn.day.    I saw something posted by a very wise adult with FASD recently that was saying essentially the same thing.  I don’t have his permission to post his words right now so I am not.  But I hope he will allow me to link to them or quote him after we have had a chance to talk. 

What scares me into my bitter tirades and snarky humor is, as a parent, how do you find your way?   How do you balance arming your children with tools to survive in an unkind and inflexible world with allowing them to just be their awesome selves?  Because my son IS awesome.  He is not “awesome in spite of his disability” he is just flat out awesome.    And I don’t want to change that. 

Incredible People – part one

You know I spend a lot of time complaining about how there are so many people that just don’t understand FASD and or just don’t care that I thought, now in November, maybe I should make a real effort to highlight some of the really superb, knowledgeable, caring people that are out there that I am so thankful to “know”*.   I’m going to start with one I have mentioned before, Diane Malbin. 

Diane is the executive director of FASCETS, a private, non-profit 501(c)3 organization dedicated to prevention of FASD and to preventing secondary defensive behaviors and improving outcomes for people who have FASD (by increasing understanding of FASD as a brain-based physical disability).  She was recognized by NOFAS in August of 2012 for her outstanding contributions  to the efforts to combat FASD.

Diane is also a clinical social worker, program developer, and consultant who provides information and services for individuals, families, and agencies dealing with FASD.  She has written two books, Trying Differently Rather than Harder  and Fetal Alcohol / Neurobehavioral Conditions: Understanding and Application of a Brain-Based Approach - A Collection of Information for Parents and Professionals.  I own two copies of the first book.  I use one to loan to teachers, doctors, therapists and others that work with my son.  The other I reread myself regularly as I mentioned here because it is just that good.  I am eagerly awaiting the two copies of the second book which I currently have on order.  I fully expect it to be just as good.

I first had the opportunity to hear Diane speak as part of Jeff Nobel’s Caregiver Kickstart program.   Her approach to linking the specific brain dysfunctions suffered by those with FASD to the behaviors those dysfunctions produce made automatic sense to me.  It was one of those “A-Ha! Well Duh!” moments you have when presented with an idea that is brilliant in its simplicity.  Like a lot of things that are brilliantly simple – applying the neurobehavioral paradigm Diane proposes is not as easy as it is seems.  The change in thinking can be very hard to do, which is why I am so absolutely thrilled to have the opportunity to meet Diane and speak with her in person later this month!!!

This is what I think makes Diane such an amazing and outstanding person.  A stranger (me) contacts her out of the blue and asks for her time and her answer is, “of course”.  You’ll probably see me writing more posts about Diane’s neurobehavioral approach as I work through some of the material she sent me to look at in advance of our meeting.  I think my understanding and ability to talk about and really apply it will be much enhanced by that meeting.  But that doesn’t change my earlier recommendation – if you deal with someone who has FASD – go get a copy of her books.  Heck, get two of each – they are more than worth the price. 

*For most that means “know” in the virtual sense.  I’m not a big web surfer but for finding information and support on FASD the internet is a powerful tool.