Understanding, Support, and Accommodation First

I’m going to say something very unpopular in this post.  If you disagree feel free to tell me so but please avoid personal attacks and egregious use of inappropriate language.

I think it is time we put aside FASD prevention.

For the last 20+ years the primary focus relating to FASD has been prevention.  I’d argue that most of that effort has been unsuccessful in moving the dial on the number of alcohol exposed pregnancies per year.  A big part of that failure is probably driven by the huge cultural role of alcohol (not just here but around the world).  We have alcohol at sporting events, alcohol at celebrations, alcohol at wakes, wine at the Lord’s Supper, cocktails at fancy events, champagne to celebrate the New Year, kegs at university parties.  Tennessee Whisky, Scotch whisky, Russian Vodka, German Beer, French Wines, Japanese Sake, Peruvian Pisco - We are awash in spirits.   No matter what studies are published, what statements by scientists and the surgeon general are issued, no matter what print, radio, or broadcast ads are run more alcohol exposed children are born every year.

I’d like to see us, all of us involved, persons affected by FASD, those that love and care for them, those that work for or represent them, those that lobby on behalf of prevention groups, all of us stand up and demand that the funds that are not achieving results in prevention be redirected  into other efforts, like diagnostic services.  And not just for kids but across the life span.  Let’s detail the loss of human potential, and economic productivity.   Did you know more people are affected by FASD than by AIDs at the height of the AIDs crisis in the USA?  Where are the lapel ribbons or the movies about people fighting for FASD sufferer’s dignity, worth and civil rights?  Let’s uncover how big and pervasive this issue really is.  Let’s take those numbers and start lobbying for the same services and support that are given to those with hearing, or visual, or mobility impairment.* Let’s demand that equal moneys be spent on FASD as are currently being debated for re-authorization  earmarked toward Autism. 

Maybe once the magnitude of the problem is no longer swept under the rug and the cost of the issue is there right in everyone’s face – then the conversation about prevention might be able to have an impact.  And if not, hopefully life will be improved for the millions who are currently suffering the effects in silence. 

*I am by no means saying that folks with other disabilities have it easy or have all the support that they might need.  Only that there is much more focused on support and accommodations for those recognized physical disabilities.  I want our focus to mirror theirs.

Must See TV (ok videos really but it sounded good!)

Check out this video - hear people affected by FASD telling their own experience:

Living with FASD

Or this one with Alan Mountford and Diane Malbin talking about children with FASD and School

You Never Know Who has an Invisible Disability

Both are awesome.

Reactionary

So I saw this quote circulating today “If you focus on MANAGING someone living with Fetal Alcohol rather than trying to CHANGE them, you'll get better results. “ and almost clicked back into ranting angry mama mode.  (As you may recall I’m trying to be more positive here because I believe it’s best for me, for my son and brother, for all the folks affected by FASD and well just for the world really, right?)

 I find the statement that we should be managing folks with FASD just as wrong-headed as the idea we should be changing them.   (or focused only on preventing them from existing)

How is “being in control of”, “directing” or “commanding” (all synonyms for “manage”) really all that much better than changing a person as a goal? 

What I try to do for my son and for my brother is to love them and to really know them.  I appreciate their strengths, and I accommodate their needs.   I work to manage their environment, the expectations placed on them and my own reactions to them.  What our society ought to be focusing on for all people affected by FASD is essentially the same.

We do not seek to “manage” other persons with physical differences.  We don’t “manage/ control/ command” those who are not mobile.  We understand their needs then provide accommodations like wheelchairs, or scooters or other equipment as appropriate to their general and specific situation.    We do not expect that they walk up stairs.  We make ramps or curb cutouts or elevators available.  We uphold their basic human rights and offer reasonable accommodations.

Persons with FASD should be treated no differently.  It’s just that simple.  Isn't it?

Happy, Happy, Happy

Little Man is just making progress all over the place at the moment.  I used to be the person always looking to the next challenge instead of enjoying the now.  My son has taught me to savor the moments like this week when I heard him self advocate for the very first time.  He has said something cute about wanting to go to Disney world and both Nana and Daddy started asking him to repeat it and to recall all kinds of moments from the trip we took there 2 years ago.  I could tell they were overwhelming him but before I could step in and try to slow them down Little Man threw up a hand in the classic "stop" pose and said, "I don't want you to talk more right now.  Its too hard to think."

Wow!!  Just wow.  We talk to Little Man about how all brains are different, about how his need more time sometimes and mommy's needs more quiet than his does and daddy's brain doesn't work good early in the morning.  We talk about asking for what we need.  "Hey buddy mommy needs a little quiet time ok?"  "How about you and I go for breakfast and give daddy some more sleeping time?" But I've never been sure how much of that he understood or was taking in.

How totally awesome to see him reflect it back and make it work for himself!!  I'm doing a fist pumping boogie over here.  This is even bigger than the shoes!!

Image is from the baby fist meme all over the internet

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!!! 

Taking the Bad with the Good

That's what life is made of isn't it, the light and the dark and all the shades between? We've had developments at both ends of that continuum this past week. I don't know about you but I like finishing on a high note so let's just get the low point out of the way first shall we?

Those that know us will recall that Little Man has ongoing issues with being able to pass his stools. To short cut for those that don't, Remember those old "Buns of Steel" exercise commercials?  I don't know off the top of my head what metal is stronger than steel but all of Little Man's lower digestive tract is made of whatever it is.  Without an enema he will never give a shit. Seriously. Never.  (Sorry for the rude language but really how could I let that one go by?)  we've been to all kinds of specialists and tried more therapies than you can imagine. Where we are at is what we've finally come to as the best of the bad choices we have.

In spite of being the best of the worst, the weekly dosing needed to cause a bowel movement is still a truly miserable time for all of us.  He lets loose both ear and heart shattering screams during the administration process.  After that he wants me to kneel by the throne and hug him while the medication does its thing. Aside from the unpleasant location and the unbelievable stench that comes with passing a weeks’ worth of waste, there's the extra helping of guilt that layers on when he wants me to comfort him from the misery I just inflicted. 

 And now, just as of last week, to make the whole business more painful (literally) he has officially become too strong for me to manage on my own. I hobbled away from our last encounter with 3 bruises, each more than 2 inches in diameter, that blossomed into a gruesome black green yellow combo and a fairly impressive knot on my head. Thankfully, I was able to complete the procedure without inflicting any return damage but I'm pretty dang sure that this has just become a two man job from here on out.  Trying to find the silver lining in this my darling husband pointed out that all the physical therapy Little Man has been doing is really starting to show results in improved strength and gross motor control.  I let him live.  I'll need him for next week's unpleasantries after all.

Moving on to the more pleasant developments, Little Man has started TYING.HIS.OWN.SHOES!!!  This is huge for us, like beyond just my faux all caps shout.  It needs to be in letters 50 feet tall covered in glitter.  Most folks faced with serious fine motor control issues and problems with motor planning would just go for the Velcro or slip ons but that is not an option for us.  Little man has some real problems with his feet and he has to wear custom orthotics (you don’t even want to know what those suckers cost) and lace up shoes to insure his foot problems do not get worse.  We’ve been working on shoe tying for, well forever really, but seriously with his OT at school and in private sessions and at home for a year and a half now.  And suddenly one day he just did it.  I am so proud of him!  Not just for the new skill but for the patience and perseverance to keep at it for so long.  He just rocks!

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.