Reflections of and on a probably Asperger's parent parenting an Asperger's kid (or 2)!

dragon pups

dragon pups

Friday, March 16, 2012

On Grief, Guilt & Grace

I have had this odd thought for a while now, and recently read several posts from various circles about how special needs parents feel that brought this idea into focus.  While clearly each one of us, as blogging special needs parents, is finding sharing with the communities we've built here cathartic, it becomes clear there is a pattern here.  A post will come up about parenting guilt, and 2 days later one will come up about special needs grief, and 2 days later there will be one about seeing the blessings, and 2 days later guilt will show up again.  Even though each of us works through our thoughts, out emotions with this (basically) public journaling, it doesn't seem like we are "through"... it keeps coming back.  It's as though the grief, the guilt, the finding joy through the pain is a ...constant, as though we just keep seeing more reasons to keep going through that process over and over again.

So here's my crazy idea, and maybe you can see if I am off base in this association with the guilt/ grief/ grace cycle.  There's lots of background story building here (in typical Asperger's fashion, I cannot assume that my "common sense" is entirely "common"), so bear with me:

I consider myself a Christian, but it is probably safest to say that I am "non-denominational" since what my heart/ soul perceives as Truths are not commonly held in the modern Christian church, but I DO believe that basic tenet of Christianity:  Jesus was the Divine incarnate, the Son of God here on this Earth, and that he was a living sacrifice for the sins of all people, and that he conquered death and ascended into heaven.  I am absolutely convinced of that as a Truth, so lets start there.  One of the most quoted versus is that "...He gave His only son...".  One of the things I admire about the Christian Bible is that it goes out if it's way to tell parables, to put ideas into a context that demonstrates the idea in action, uses a language that would be familiar to its hearers.  While I certainly identified with the story-telling as a child, I really figured it out when I had a nursing infant and the reading at church used language describing how man seeks God like a nursing infant seeks a mother.  Oh yeah - now that was understand able.  Then I realized that even the language of the "only child" was supposed to elicit that level of understanding.

Certainly Isaac had an only child to sacrifice, and God spared him (both), but it is easy to keep that barrier between you and the story, to think "well, I am not THAT faithful, so I do not identify with Isaac".  But in the New Testament, it's about God's son.  A son who saw his share of danger and threat as an infant, and yet was able to survive to adulthood - he got through the "worst".  Worst, you say?  This is where the historical perspective comes in.  Think very, very carefully about your own family histories... my grandfather was one of 7 living children.  My great grandmother was one of 13.  My grandmother has an infant sister in the family plot, my husband has an infant brother buried in the family plot.  I was surprised how many miscarriages there are (because people don't tell you until you are pregnant/ a parent - they just don't identify that information with you).  Why so many children?  Sure, we can talk about farm economies and free labor, but the Truth:  most families lost a child before they grew to adulthood.  This, today, the current generation is the first generation to believe that parents should outlive all their children, ever, in history.  We have "eradicated" childhood diseases that kill and maim, we protect them with softer playgrounds, and closer supervision, and protective gear.  I would say that public discourse makes it clear that parents are supposed to die first.  The public coverage of things like children being kidnapped or missing just proves that.  I remember hearing/ reading many, many times the lament that a parent should never outlive a child.  Yet that is EXACTLY what God does.  His child survives that dangerous, questionable period of childhood, and then his "life's work" takes him in the "line of fire".

Now I grew up in a police officer's household.  My dad worked as a street cop in Los Angeles for 25 years.  He was on the streets during the Watts Riots and the Rodney King Riots, he lost a tooth in a gang fight, and I don't even know what else (he is trying to protect me from that reality).  I can only now imagine how my grandmother felt, but I can tell you that as a kid, we knew the risks he took, and we accepted them as part of him, part of the package that made him into what he was meant to be.  He was an adult, making the conscious choice to endanger himself for the sake of others.  It's kind of a "love me, love my flaws" kind of thing.  God made Jesus to die, and Jesus owned it, he chose the mantle.  Good man; he's got the gonads to own his purpose. That's Jesus's contribution to the event, to carrying the sin.

Does that make losing a child easier? I have not yet lost an adult child, so I don't know.  I deeply honor the sacrifice of other officers and military personnel.  Theirs is a road I did not choose; I did not step up to that burden.  But I have watched my infant die in my hands.  The baby came back with resuscitation, but he DID die.  The burden came to me.  And Lord, the guilt and grief!  I replay the whole incident nearly weekly now, after 7 years, admonishing myself for not giving the rescue breaths sooner, for not knowing how to get to the hospital faster, looking for whatever I could have done to have prevented and lessened the impact.  It doesn't help, AT ALL.  I have finally come to the conclusion there is nothing I could have done differently (though, of course, my heart does not accept that), that it was "meant to be" - that it was an event that helped shape who we are as a family.  The grief part is in the later development.  The neurologist told us that that oxygen deprivation probably triggered the autism, and my child turned into an alien.  I remember asking my husband and my mother, "Where is my son?!  What happened to the child I knew?"  I see that same lament over and over in MANY autism parenting books, & blogs, & comments.  I had to know it was OK to grieve from a stranger before I allowed myself to do so.  And I have worked very, very hard to alleviate that grief with advocacy.  I have tried very, very hard to watch my little alien and try to bring the world to him and him to the world, to be the liaison, the interface, the interpreter, the facilitator, the warrior mommy, and also to give him space (more than many are comfortable with) to create his own terms with the world.

I can NOW understand MUCH better this idea that God gave up His only son, that he saw a success sacrificed, that he turned his living son into an "alien"  - and there are many ways to look at that.  And I NOW understand how to love an alien, how love is GREATER than whatever else, why Jesus says that the new commandment is to "love your neighbor as yourself".  I can justify that I am an alien too, that we are all weird in our own ways, that we each survive in our own peculiar perceptions of reality, but the Truth is that justification does NOT change that LOVE IS BIGGER THAN THAT!

And this is only a "Christian" spin on that insight, my personal history trying to come to terms with my personal experiences.  There is a LARGE group of people in this autistic community that have a more nebulous (to me), more "fringe group" type of understanding of this same Truth.  They talk about UNCONDITIONAL LOVE, and how it will set you free, and you will be able to see and harness energies around you and through you.  It's "intuitive" or "psychic" or even "telepathic" for some.  And I can say that I have seen events justifying all those ideas in our Autism Journey too!  (I'll try to give examples later.)

SO, my point is that the spiritual nature of this "Autism Thing" is undeniable.  There is a Divine purpose to the event.  An autism diagnosis, or a family member touched by it, or even public discourse about the condition, these things are divinely purposeful, even if the hearer is fighting the significance.  I can tell you how it has played into MY faith journey, and I am seeing lots of other parents demonstrate how it is playing into theirs in their blogs and stories.  The vocabulary we are using is about guilt, grief and grace.  The stories are each singular, each specific, but there are universal themes.  Just like parables...

How humbling to think I am living my parable, the one story that will help me see the main idea...

I hope my insights help you see your parable...


  1. I agree that autism is spiritual in nature and that there is a divine purpose working here. I often find myself reflecting on John 9:2-4: 'His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
    “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him. As long as it is day, we must do the works of him who sent me.'

    Anyone who gets to know my child tells me that the works of God are being displayed in him - especially non-religious people!

    1. thank you! It's nice to hear the comparisons that show we are not "alone in the wilderness". I KNOW it, but it IS nice to hear it.... THANK YOU :)


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