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. 

You Should Have a Blog

Someone told me today.  And I was ashamed to admit - well I do have one but its been like - OVER A YEAR since I posted.  So here I am - starting again - again.  Of course I was even more embarrassed to notice one of the last posts I did make was about how much I despised Elf on the Shelf.  Because yes - I caved in 2013 and did the elf thing.

I did make a few changes to the tradition to make it a little less stressful.  Our elf was not a sneaky little nark running back to Santa to rat my kid out every night.  Instead, Jake Hinnyminny just hung out in Little Man's room and surprised him with the new things he was doing every morning.  He also left little notes encouraging kind things Little Man could do for other people or lavishly praising kind things Little Man had already done.  Also because the original Elves are so creepy looking we went with a different kind of elf altogether.

So yes - I caved - kinda.  I like to believe I did it in a much more laudable way.  Humor me and pretend you think so too.  What can I say?  I'm a sucker for my kid and he was so entranced by the "magic" elements of Christmas this year.

Here is Jake Hinnyminny taming the T-Rex he caught.  Image is by me.