Friday, September 12, 2014

Half a Box of Tissues and Many Swear Words Later

This was not the post I had intended next.  I thought maybe something light and cheery was in order.  You know balance the challenges and the gifts but while life usually tips far, far into the range of things to be grateful for it doesn’t always.

Have I ever mentioned the little clutch of fear I get whenever my phone rings and it is the school’s number?  Usually it is unfounded but not today.  Today it is the school guidance counselor. Little Man is being bullied at school.  I start crying again the minute I type those words so I guess I am not as sniveled out as I thought.  I have always known he would face unkindness someday.  But knowing a thing and living the thing are, well, two separate things entirely.  I am both heartbroken and ragingly angry for him.  A part of me cannot understand WHY?  He is such a sweet and loving kid.  He has differences yes but he is unfailingly kind to others.  WHY must someone hurt him, emotionally and now physically?  What purpose does that serve?  To the person or to the grand scheme of things at large?

The news is full of people who hurt those who are different.  There is this horrifying story and this, and – well I could go on – and on - and on - except really, I can’t.  I just can’t.  I can’t read any more.  I can’t face any more of it. Thank God Little Man has not faced anything that traumatic.  Yet.  And there's the worst part.  He could.  Someday he may.  Because I cannot stop it.  that's what I have to face right now in this moment.  No matter how I try I cannot always be there to protect him.  And if you know me, you know that I will have to DO something in response to this incident even though I know that reality.  The only real question for me is what to do beyond cry and curse?  Punching out a second grader is not really a viable option (and the tiny shred of rational me available in this moment knows in the long run it would not help.) 

I talk about being the change you want to see in the world, and this is one of those places where the rubber meets the road.  To lash out and cause more pain and anger and maybe shame would be easy to do but it would not move us toward what I really and passionately believe is the only answer; understanding, empathy, and celebration of what makes us each unique. 

I call the school back. I know – and really believe – that all the members of his team really truly care about Little Man and his emotional as well as physical well-being.   I know they have their procedures and that the “offending party” will be “subject to appropriate discipline.”  But could we look at something else too?  Please?  Can we look at the diversity programs they already implement and add on to them?  They focus on things we can see; skin color, family differences, mobility impairment.  Can we go deeper still?  All of us have differences – and many, many of them are invisible, like Little Man’s neurological differences.   There are children throughout the school with invisible differences.  ADD/ADHD. Diabetes.  Autism. Mental Health issues.   Some in special programs and some not.  Can we address everyone about the importance and value in ALL differences, even those you cannot see on the outside?  Does a program like that even exist?  If it does, I’ll pay for it.  If it doesn’t I’ll help create it. 

Because, Because, well that’s obvious right?  I know this is not a problem I can fix but I have to do SOMETHING!  I am trying to live up to the words of a very wise friend - who is also affected by FASD.  "The question, he says, "is always what would LOVE do?"

Wednesday, September 10, 2014

Keeping It Real

First I want to say I meant every word I said yesterday with all my heart.  But no matter how passionately I believe that Little Man is a glorious gift – not in spite of his FASD – but just exactly as he is, some days I fail.  I fail to see his gifts.  I fail to live in the moment with him.  I fail him. 

We had one of those last night.  Little Man has to endure a fairly unpleasant clean out process every so often because of the damage to the nerve cells in his digestive system.  This is not an optional thing.  It’s not vitamins or some therapy that I hope will be helpful to him.  It’s required to prevent some nasty, even potentially fatal, complications from his digestion issues.  (I’m trying to avoid a lot of overt poop talk here but if you want to understand more read about it here.) 

I hate doing it. He hates having it.  He insists he won’t.  I insist he must.   Last night we both insisted down to the bitter end which resulted in him having the treatment and me having the crap kicked out of me.  Sometimes things go more smoothly.  Mostly they don’t though.  It’s bad enough he has to endure the treatment.  He shouldn’t have to manage my losing my temper over it too.  But I’m human.  Getting kicked and scratched until there’s blood drawn hurts.  I raised my voice.  A lot.  I told him “You hurt me.”  “Yes, I am mad at you.”  And he cried.

It wasn’t long before he was back to his sunny self. I told him I was sorry for yelling.  He told me he was sorry for hurting me.  We kissed and snuggled for story time before bed.  We talked about it again this morning; about how important it is he have his clean out so he doesn’t get sick, about how it would go easier for him too if he didn’t fight with me during it, about how even if it goes very badly and I am angry I still love him forever and always.  He seems fine about it now but how much did I add to his fear and stress about it next time? 

I can’t know the answer to that.  And no matter how I try I can’t be perfect.  So I draw comfort from things like the advice from Mary Anne Radmacher “Speak quietly to yourself & promise there will be better days. Whisper gently to yourself and provide assurance that you really are extending your best effort. Console your bruised and tender spirit with reminders of many other successes. Offer comfort in practical and tangible ways - as if you were encouraging your dearest friend. Recognize that on certain days the greatest grace is that the day is over and you get to close your eyes. Tomorrow comes more brightly...” 

Tuesday, September 9, 2014

HAPPY International FASD Awareness Day!

Happy?!? You say?  Yes HAPPY.  Look at any writing on happiness and you will find some version of psychologist Mihaly Csikszentmihalyi’s words, "It is by being fully involved with every detail of our lives, whether good or bad, that we find happiness, not by trying to look for it directly."   Or the words of author Jerry Spinelli “Live today. Not yesterday. Not tomorrow. Just today. Inhabit your moments. Don’t rent them out to tomorrow. Do you know what you’re doing when you spend a moment wondering how things are going to turn out?  You’re cheating yourself out of today. Today is calling to you, trying to get your attention, but you’re stuck on tomorrow, and today trickles away like water down a drain. You wake up the next morning and that today you wasted is gone forever. It’s now yesterday. Some of those moments may have had wonderful things in store for you, but now you’ll never know.” 

Happiness, when studied at any length is almost always found to be caused by a life spent IN THE MOMENT.  This is one of the gifts of Fetal Alcohol Spectrum Disorders.  Yes, I said GIFTS.   The same neural changes that cause many of the difficulties of life with FASD also help folks affected live in the moment.  And that IS a gift.  They have tremendous capacity for joy “not in another place but this place...not for another hour, but this hour.”*  We seem to spend days and weeks and months and years talking about the challenges of FASD.  But FASD is more than those challenges.  Because FASD IS PEOPLE.  It is the people whose neurological make up is shaped by prenatal alcohol exposure and it is all the people whose lives they touch; the mothers and fathers, sisters and brothers, friends, lovers, husbands and wives, employees, employers and coworkers.  And while we spend so much time and energy looking at the pain and problems involved in a life touched by FASD we rarely spend time on the happiness.  So today on FASD Awareness day – I choose to look at not pain but JOY, not challenges but GIFTS. 

When I watch my son lose himself completely in a simple activity like dancing in the bubbles and I hear his unrestrained giggles and I am reminded of the words of Henry David Thoreau “You must live in the present, launch yourself on every wave, find your eternity in each moment….there is no other life but this.”   My boy brings that same capacity for joy to each and every thing that he does.  He can let go of the past, no matter how fraught with fear or anger it may have been, in an instant.  He does not fret and worry over the future.  At 7 he already knows,  “The purpose of life is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experience.”** 

I am and will be forever grateful to my son for the way he constantly widens my understanding of life. Learning to see and experience the world as he does continues to force me to step outside my own little box, to truly look for and see the beauty of difference, and to appreciate how rich the full range of human capability is.  Little Man has enriched my life in more ways than I could ever count, including most especially, the numerous people also affected in some way by FASD he has brought us in contact with.  I am proud  of my boy beyond any any means of measuring and I thank God (and yes his birth mom) every day for blessing me with the privilege of raising him.***

*Quote by Walt Whitman
**Quote by Eleanor Roosevelt
*** This paragraph was inspired by something I read by Jess at Diary of a Mom.  I cannot remember which of her wonderful pieces it was but if it sounds kind of like her - that's no accident.  I love her writing and it often lingers in my mind.  You can find links to her work on the Useful Links tab.