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!

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.)

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.

Reaching Out

Hey guys I need a hand.

I’m struggling my way through finding a new way to see FASD.  To appreciate its gifts as well as see its challenges.  For me words are the way I shape my thoughts.  So I've been trying to be more careful with my words.  There is one thing I keep stumbling over – and I’d like you to help me shape it define it – name it.   I’ve noticed that among the community of folks with FASD they use the term “Neruo Typical”  (or NT for short) to describe what neuro-typical’s like to label “NORMAL”.  I really like this – I've adopted that as my new term.  It doesn't carry the same baggage for me as “normal”. 

What I am struggling with now though is what is the opposite term?  What is the right term for “Not Neruo Typical?”  I mean is it just that – not neruo typical?  I’m searching for a word that indicates a difference without heaping a judgment of good or bad on the difference and I’m coming up blank.  I think we need this for making a paradigm shift.  I KNOW I need it.  So I figured I ‘d ask for help.  And I am ashamed to admit the first place I was going to as was other parents of kids with FASD.   That’s right other NTs.  And I realized I still have a lot of work to do on myself in terms of being ready for this future I imagine, one where people with neuro cognitive differences are recognized as equally valid, different but not less than neruo typical. 

I know all this angst over the distinction in words may seem picky or even silly to some people.  But I’d ask you to think about the difference between calling someone an “Indian” verses a  “Native American” verses a  Sioux.  One was a wrong (Columbus never made in anywhere close to India) label ( and I'd argue applied with clear derogatory intent), one was intended to be neutral but still externally applied, and the last is the name a people gave themselves.

So I’m asking people affected- how do you define this –what words do you use? What words should we all be using?   I see affected people connecting – forming your own communities in person and on line.  You should have a voice that is heard and respected.  Hello, my name is Tina.  I’m neuro typical.  And you are?

Biting My Tongue

Today – you are getting a rant.  I’m working slowly on crafting a better response but first, I need to let off steam.  I was speaking with a person yesterday, bless her little heart, who told me in all seriousness that she agrees with me “WE need to be doing more to make a place for THEM in OUR world.” (emphasis mine)

Yeah – Let’s just sit with that a second.    WE, THEM, OUR WORLD. 

!#$@!$@#$!@$!

NO, NO, NO.

!#$@!#$@#$@!$%

I can’t scream it loudly enough on paper.  There is no THEM – only WE – an all inclusive WE.  And it’s not OUR WORLD  (“us” being the neuro typical people that think we own it)  it’s THE WORLD.  EVERYONE has a right to it – all of it – not some tiny part someone is willing to set aside.   How is this not segregation?  How do people not HEAR the fundamental wrongness of this shit as they say it?  Can't they taste the foulness of it on their tongue?  Can't they feel the blistering corrosiveness of it of it on their skin?

My temper went from zero to 60 in less than a second.  I wanted to say, “Fuck you.  Fuck your sensitive little condescending narrow mind.  How about I make a place for you?!?” 

But I didn't.  Be proud of me because it was very, very hard; but if I am really committed to making a difference, it’s not about how mad something makes me.  It’s not even about being right.  Its about being successful.  And I am committed to making a change in how the world deals with neuro cognitive diversity.

My dad and I talked about the difference between being committed to something and just being involved once.  He told me the difference was breakfast.  (Breakfast you are thinking?  The man was off his rocker.  It’s OK– I thought he was at first too but you are wrong just like I was. )  The difference between being committed to something and just being involved he said is bacon and eggs.  The chicken was involved but the pig was committed.  (Yeah, I just kinda called myself a pig.  What the hell, you can’t change the world without getting dirty. )

Sometimes, I’ll get to thinking about the way the world is now and if my son is going to be able to navigate it and it’s all so frightening I go into mommy  rage mode.  (For those unfamiliar with mommy rage - it’s kind of like a steroid rage only much, much scarier.)   What can I say?   I am capable of constructing a well thought out analysis of what is wrong and how we should fix it (problem solving is what I do for a day job after all) but to do that takes time and a lot of thought and some emotional distance.  Doing that when the issue impacts my children is not natural to me. Natural to me, once my emotions are engaged, is very simple - feel and react.  ( Hey - Not so different than my son operates come to think of it.  Now there is an idea worth exploring at some point.)

That natural reaction isn't very effective but I can’t always just suppress it.  Sometimes I really need the venting of a good rant to let me settle and think so I can construct the better crafted and convincing argument.   And whenever you are trying to change something – you need a convincing argument. 

 Like Machiavelli said “It ought to be remembered that there is nothing more difficult to take in hand, more perilous to conduct, or more uncertain in its success, than to take the lead in the introduction of a new order of things. Because the innovator has for enemies all those who have done well under the old conditions and lukewarm defenders in those who may do well under the new. This coolness arises partly from fear of the opponents, who have the laws on their side, and partly from the incredulity of men, who do not readily believe in new things until they have had a long experience of them.”  

 (Yes, Machiavelli may be part of my strategy - make no mistake I’m out to win on this one people! ) 

OK – When is she going to be funny?

Can I confess that just two days into restarting this blog – again – I am already feeling pressured.  Not by you guys, you haven’t said a word.  (And yeah, about that, I really do better with some interaction folks, I mean it’s not like you HAVE to comment or anything but it’s easier to maintain the energy to keep going when you know someone is out there.  Just sayin’)   

But I feel pressured by myself.  I have perfectionist issues.  I think I do a decent job of not projecting them onto my kids but I self-flagellate with them ALL.THE.TIME.  (I know – TMI, right?)  The thing is I still hurt my kids with that perfectionism even if I only turn it on myself.  It’s what makes me hyper and stressed and leads ultimately to me going all psycho mama.   So I’m working on it. 

That’s one of the things they don’t tell you about in the mom handbook – which I never got my damn copy of by the way - that you have to work out your own crap if you don’t want to give your kids the same crap to deal with.* Maybe they left it out because they figured it was kind of obvious but in my opinion it’s of often the obvious stuff we over look.  And besides, even if you reason out on your own things like – I should not expect my kids to be perfect because it really screwed me up when my parents did that to me - A LOT of people are not going to get that by continuing to tote around your own baggage you will mess your kids up in the same damn way you don’t mean to. 

Because we are all going to give our kids some crap to deal with right?  But you’d at least like it to be different crap.  Hopefully a lighter load of it too right?  So I’m reminding myself once again – I don’t have to be perfect.  Not here, not at work, not at home.  My kids need to see (not just hear) that its ok to screw up sometimes, and it’s what you do after the screw up that matters more.  They need my example of being kind to myself so they can be kind to themselves.

There for I am giving myself permission to not have anything witty or interesting to say today.  Sucks for you guys but hey that’s life.   Hopefully, it will help me be better in the long run.

* How do I know it’s not in there if I don’t have the handbook you ask?  Well aren't you just a nosey little parker.  I do have friends you know.  Some of them are so together that it is obvious they got the book.  I ask them!!

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.