The Hardest Part

I was asked recently, “What is the hardest part of parenting a child affected by FASD ?”  I was rather stumped by how to answer the question.  Should I say – it’s all hard?  Because it is.   That makes it sound like it is only hard and nothing could be further from the truth.  I find great joy in parenting Little Man but there are certainly hard parts.   Besides it feels like a brush off and really it does nothing to help people understand.  So then, what do I say?  What is the hardest part?

I could talk about the sleep issues.  It’s been 7 years since I’ve been able to count on stringing two decent night’s sleep in a row.    It is better now than it has been in the past.  I can remember a time when I was lucky to get 2 hours sleep a night.  You don’t really “function” on that little sleep – in fact I can’t say you even really survive – more just exist.  It was brutal.  Even though it is better than that now it can still be very hard.  But is it the hardest?

Or is the hardest part feeling like you have to be on your toes with an eagle eye out for every possible thing that may happen next – so you have a plan for addressing it – for smoothing the way- the unrelenting  vigilance you need to maintain that feels almost like being in combat zone? 

Is it the million and one appointments, details, schedule adjustments, medications, therapies, preferences, and accommodation strategies, you need to carry in your head?

Is it the judgment you come across in the teachers, administrators,’ doctors, therapists, family, friends and even random strangers in public places?  How dare she let him get away with that kind of behavior?  What is wrong with parents these days?  I would sort that out in a weeks’ time let me tell you.   

Is it that there is no “expert” to turn to in the field that knows just how to resolve your child’s issues?  That in addition to no experts there are rarely even people more than passingly familiar.  That every place you go you have to be the one to educate.  And that in many places even though the person you are dealing with is totally uninformed your knowledge, experience,  and input will be immediately discounted because YOU are not considered an expert – you are “just a mom.”  So you have to act as if you are completely certain – so that people will listen, and even consider just a little what you are advocating, all the while you are desperately uncertain and wishing there was some certainty, somewhere you could find to answer your own questions.  Is this really what is best for him?  How do I help him the most in the long run? 

Is it the endless debate you hold with yourself and the world about to medicate or not?  There are worlds of words I could write on that alone. 

Is it the outbursts of violent behavior that happen?  Is it worst when they are nearly constant rages or when they are sudden and unpredictable storms that come out of nowhere?

Is it the medical emergencies,  the constant noise,  the  co morbid psychiatric issues, the stress, the depression, the tension on other relationships?

I think the answer is that the hardest part is the part you are struggling in right now whatever part that may be.  The hardest part changes from person to person and for any one person from day to day struggle to struggle.    We had a rough morning Little Man and I.  I was overtired and I did not cope well.  I left him at school feeling wretched.  Like I’d started both our days off on a horrible note.

Today for me, the hardest part is feeling like I’ve failed him and not for the first or last time.  The hardest part is knowing that at its very worst for me – all of this is still easier than it is for him; that while I have one small person to deal with whose mind and reactions and impulses are not intuitive to me, the whole world is foreign to him.  I deal with one small fraction of what he copes with all day, every day.  For him the entire world is too fast, too loud, too abstract, too arbitrary and too rigid.  The hardest thing is listening to him cry because “Nobody doesn’t like me.  I must just be bad all the time.”  The confusion and alienation and pain he suffers.  For me, for today - That’ I’d say is the hardest part.