Tuesday, February 25, 2014

Mommy Fail

Sigh.  I had a mommy fail this afternoon.  It was not a total mommy meltdown thank God but it was still far from my best moment.   I ask myself why and the usual reasons are not there.  I wasn’t over tired, feeling sick, or unreasonably stressed out.  I was not running behind nor was any one standing around being all “judgy.”  So why did I descend into a battle of wills over such a foolish thing with Little Man? 

I’m writing to try and figure it out so bare with me here.  I was picking him up at school and his teacher had reported he was having an “off” day, not terrible, but being a little unusually sassy and belligerent in attitude.  We both agreed that people have off days and let it go at that.  Except, did I really let it go?  Was I already starting to brood on that?  I don’t think so but until I started typing this out I hadn’t really even remember that exchange. 

The gist of what happened is this - on our way out of the school – out of nowhere Little Man reached up and turned off the lights in the hallway.  It caught me by surprise.  I said something like “What did you do?” and I’m fairly sure it was probably not in a “wow what an amazing accomplishment” tone of voice.  He went into toddler / fear mode and practically tackled me. 

I don’t know why my being any kind of upset with him affects him that way sometimes and not others but it does.  I know what works best in those situations.  Lots of hugs reassurance and snuggles until he is ready to discuss what ever the transgression was.  I KNOW THAT.  And I usually do it.  For some reason today though – I was determined he was going to turn the lights back on himself.  Now.  Not in 10 to 15 minutes.  NOW.  Soothing would come after he had done so.  The more I demanded he turn the lights back on the more (and more loudly) he refused.  In the end we landed somewhere in between -  I managed to force him to point at which switch he had touched and ask me to fix it for him.  He managed to force some closeness by locking himself in a strangle hold around my neck. 

It was so foolish, foolish, foolish to start that power struggle in the first place so why did I?  Sitting and thinking, and writing, and thinking some more I believe the answer is fear.  So much of the less than stellar parenting I do comes from fear.  I do believe it is important for him to acknowledge when he does wrong and to try to make it right.  I also believe he is going to need people to like him and be willing to help him all his life.  And so I believe if he can acknowledge when he does wrong and to try to make it right he will be more likely to have that help and support.   But I believe all of that so passionately and irrationally in specific moments because I am AFRAID.  I am afraid of what will happen to him when I am gone, especially if he is not a sweet, lovable, compliant person that people want to help.

What a long chain of if’s and when’s, and fears, and projection from that one moment in a hallway to the rest of his life.  Did I make the possible outcome of his whole life better with that scene this afternoon?  Of course not.  Hopefully I didn’t make it any worse either.   

Tonight I pray that next time – every next time – he has a hard day or just a hard moment I respond from love not fear.  

Monday, February 24, 2014


I have been talking with some other folks parenting people with FASD and, well, sometimes I think that I think too small.  This situation with the FASD Center of Excellence  could end up being a benefit to us and our loved ones in the long run.  I'm still fired up about the funding being cut to the CoE but perhaps, as part of the discussion of how that kind of got sneaked in with no discussion or debate, we can also start some discussion of how the funds have been used in the past and how they should be used going forward.

The SAMHSA FASD Center for Excellence was launched in 2001. Congress authorized the it in Section 519D of the Children's Health Act of 2000, which included six mandates).
The stated mission of the FASD Center for Excellence is to facilitate the development and improvement of behavioral health prevention and treatment systems in the United States by providing national leadership and facilitating collaboration in the field and it lists three goals:
  1. Reduce the number of infants born prenatally exposed to alcohol.
  2. Increase functioning of persons who have an FASD.
  3. Improve quality of life for individuals and families affected by FASD.

 For the most part almost all funds spent to this point have been aimed at prevention only.  “Treatment” has been focused on treatment of women with substance abuse problems which is in essence – more prevention.  I don't disagree that keeping more people from having the struggles and pain our loved ones suffer is important.  But there is almost no spending on research for how to help and support those already affected or on research into how to do that most effectively.  Surely that deserves effort?  So – in addition to outrage at the defunding of the center -  Maybe we should be shifting the conversation from "how dare you decrease what was already insufficient?"  to a different conversation altogether, something more like – "put back the money and see that it goes into the other 2/3rds of your goals!"

So I've been trying to figure out what that form letter looks like.  I have not gotten far yet but the idea is more persistent than an earworm noodling around and around in my head.  Restore funding remains an important part of the message - but we should be making our voices heard loud and clear on what to do with that funding.  Awareness and education for people working with those affected and research on effective supports / therapies across the lifespan as well as providing help and support have always been the intent of the Center.  They need to become the practice as well, because in the end both of those efforts will also end up having preventative effects.

It is hard to take this on sometimes - the problem is just so big - which I suppose is another way of saying I'm thinking too small.  I LIKE small actionable targets.  I like things that make me feel like I have gotten something done, things I can check off as complete.  I guess I have to keep working on really embracing the messy, not ever "complete" part of this struggle.  

Fortunately another thing I've never done well is give in, or give up, so you can bet I’ll keep trying.

Tuesday, February 18, 2014

Oh Happy Day!

I usually blog about my kids but today is about my foster brother.  He also has FASD.  Today he was released on parole to my Mom's care.  I can't tell you what a relief this is.  His whole interaction with the justice system has been a text book case of how the justice system does not understand or deal with FASD appropriately.  Here's how it went

 John* was 18 hanging out with 14 to 16 year olds.  One night the group decided it would be funny to break into the garage of one of the group that did not happen to be present and mess with his bike.  The boy's parents did not find the plan amusing at all.  John was the only legal adult in the group and the only one charged with felony breaking and entering.  He did originally receive probation but at the urging of friends started skipping some of his meetings.  (Cause you don't, like, have to go to all of those, you know?)  His Probation Officer though he needed a "lesson" and revoked his probation.

John spent 2 years in a minimum security jail.  Two years.  He came out with a drug problem.

When he was first released we called, and called, and called, and wrote, and wrote, and wrote to his Parole Officer, his PO's superior, and even, the state parole board.  No one would reply.  We tried attending meetings with John but were turned away.   John was required to live in a half way house in crack central down town.  He had to take a bus 45 minutes and make three exchanges to get to his PO's office or to his drug tests.  After 3 months of successfully navigating that mine field - the PO started changing to random appointment times and moved him into unsupervised housing - still in crack central.  Within 6 weeks of the changes his parole officer revoked his parole for missing appointments and one dirty drug test.

His recommendation was that John serve the remaining 3 years of his original five at the state prison - to teach him a lesson.  Fortunately we were able to convince  his assigned defense attorney and the Judge that John's disability FASD was real and required real accommodations - which he had not received.  He was sent to a 90 Drug Rehab boot camp.   The American Bar Association Resolution on FASD was a big help in this as was the University of Washington Fetal Alcohol and Drug Unit.

I wrote endless letters and made endless calls to facilitate a better solution.  And to insure his Parole Supervision was set up for him to succeed upon release.

Today I got to speak to my brother for the first time in 3 months.  He is with my mom.  He is happy.

So am I.

*not his real name.

Thursday, February 13, 2014

Taking Chances

I feel like the journey I am on with my son is changing who I am at a very deep level sometimes.

Things that used to matter so much to me are just, well, irrelevant now.

At the moment I am contemplating making a total sea change - like "leave the career I've spent 17 years building and doing something completely different" change.

It feels terrifying but also awesome.

Kind of like the rest of my life these days.

I have not decided.

But I keep coming back to the idea.

Tonight - snuggled in and pondering "what if" while the sleep beats at the window - it all seems possible.


when I have to pay bills,

we'll see.

Monday, February 10, 2014

A Call to Action

The federal appropriation that funds the FASD Center for Excellence was cut nearly 90% when Congress and the President passed the fiscal 2014 budget bill earlier this year. The budget bill sets funding levels for federal government departments including the two agencies within the Department of Health and Human Services with FASD line items, the Centers for Disease Control and Prevention (CDC) and the Substance Abuse and Mental Health Services Administration (SAMHSA).
The SAMHSA FASD budget that supports the FASD Center for Excellence was slashed from $9.8 million to $1 million. The CDC FASD budget was reduced from $9.8 million to $9.7 million and will be unable to pick up the programs that are now no longer funded.
Please take the time contact the SAMHSA Administrator and your representative / senators and ask them to restore funding to the FASD Center for Excellence.  Not sure what to say – feel free to copy this.

Not sure who to contact?  You can find the appropriate contact information here or feel free to contact me and I’ll look it up for you. 
Please also Contact SAMHSA Administrator Pam Hyde and Frances Harding, the Director of the Center for Substance Abuse Prevention within SAMHSA, and tell them that the agency should continue to address FASD.

Thanks!  We are the warrior parents / caregivers and those living with FASD.  We need to roar!

Thursday, February 6, 2014

My Problem is ...

not a lack of ideas but an over abundance.  I've started at least a dozen posts, some funny, some serious, but they compete with each other for space in my brain.  I can't seem to get one more than just barely started on before another is intruding.  And on top of that there is my day job and my actual children looking for my time too.  (By the way the kids win - hands down - all the time.  I'm not sure it is a good thing that they always win - I need some time to be me, but, well, they do.  That's just how it is.)

Here is one quick thing I can share though that I think is awesome.  I want to do something much longer and expand on it - but this will do for now.

I am reading The Resilient Parent by Mantu Joshi and I just came across this gem:
"What would it mean to think of yourself as someone living an extraordinary life, rather than a burdened one? What would it mean to claim the challenges before you as worthy of your extraordinary skills?"

I also happened to attend a speech today by Mr. Alex Zan.   Mr Zan is one of the Charlottesville 12, the first black children to attend a "white" school in the state of Virginia.  He was talking about how all people matter, how we all have the opportunity to do something great with our lives.  He said he and his mother (who was the driving force behind him attending the integrated school) were a part of changing history and yes it was hard, but really they changed history JUST BY LIVING their lives guided by their beliefs.

These two things came together for me in a mix of feelings and ideas can't really put onto words very well yet.  Not coherently.  But I know that being involved in the basic right of all people to matter, all people to be respected, is now a part of my parenting journey.  This is not just for my son's sake.  Yes that is part of it but it is for my sake too.  I have a set of God given skills and abilities.  I've felt for a very long time, long before I ever had children, that my life lacked a purpose, that there was something I was supposed to be doing with those gifts.  I wanted to be passionately pursuing a meaningful purpose but I had no idea what it was or how to uncover it.  I wanted a calling but didn't hear one.

I believe I may have started down the right path at last.  To really stretch an over used metaphor - I've been wandering lost down all sorts of roads, not bad or wrong roads, just not MY road and that is why things have felt so pointless and the journey so hard.  I understand that the road to respect for neurocognative diversity is not a short or easy path.  All you have to do is look at the struggles of any other marginalized group throughout all of history to know that its a very long, very hard road and I myself may never see us arrive but finally, finally I feel like I've found its the path I'm meant to be on.

(Yes, yes you all will probably have to point me back at this post many many times when I lose heart or lose my way.  You've kept me going though many tough times.  I promise this one is going to be different because this time I am not trying to logic myself into caring - I already feel it in my head AND my heart.)

Sunday, February 2, 2014

Comic Relief

Comic Relief

I've been so desperately earnest here recently I thought I should lighten up.  Someone in a Facebook support group I participate in was sharing an embarrassing moment.  I decided to chip in with one of mine as well.  It seems I don’t know how to do anything on a small scale so this is more than just a little embarrassing but here it goes.

First, I need to share some embarrassing background.  I used to take pole dancing lessons - you know back when my ass was skinny enough to haul up a pole. And yes once upon a time long, long ago it was that skinny.  And just in case anyone thinks this means I was less of a kick your ass feminist back then I was not - this was about feeling rock your world sexy for myself after my divorce. I even sent my ex a video of a routine to "Don't Cha".  You know the one that goes, don't cha wish your girlfriend looked like me. It really frosted his cookies.

So, back to my embarrassment.  I was getting ready one morning for our very last social worker’s visit.  We were completing our post placement report. My “gear” from the pole dancing class was in a bag in the back of the bedroom closet. (Do NOT ask why I still had it - that is just TMI - we are not going there) Anyway, I was running around like a loon trying to make sure the house was clean enough to perform surgery on the bathroom floor without antiseptic and my two and a half year old son was playing quietly in his room just across the hall from me. I thought.

When the doorbell rang I went rushing to open it lest a millisecond delay reflect poorly in the final report.   The social worker steps in and suddenly there is my son coming down the hall with a red silk thong around his neck, a tasseled pasty stuck to his cheek trailing a red and black feathered boa.  After a single stunned heart beat I turned to the social worker and said, “Sorry - we were celebrating his home coming and the strippers were running late.”  Thank GOD she had a sense of humor!!  Either that or she could tell I just wanted to die and took pity on me. Or who knows maybe she was blinded by the shine on the bathroom floor and didn't get a good look at him before I scooped him up and went to destripper him.  (These days I'd just tell her that OT, PT, and Speech are f***ing expensive so I do what I have to.  Of course, these days no one would ever believe anyone would pay to see me in a thong and pasties.)

In case anyone was wondering, the possible location of the only remaining copy of the alleged video is highly confidential. (My ex's girlfriend thoughtfully returned the copy I sent him burned to a crisp.)  I like to consider that a compliment on how hot I was.