Acceptance vs. Grief

I enjoy reading blogs from folks on the spectrum. They have a lot to teach me as a parent, and give me a lot of food for thought.  One of the things that has struck me, though, is their dislike of parents' grief. Some say that grieving your child with autism is a rejection of the child.

I reflect on this quite a bit, because I have grieved my fair share. And, of course, being an aficionado of guilt, this gives me one more reason to have parental guilt.

So here are my thoughts on grief, with a dollop of Buddhist philosophy thrown in.

Grief according to Buddhism is a form of suffering. Suffering is caused by telling ourselves things should be other than what they are.

When our children are diagnosed there is a wash of emotions, most of them negative. Grief for the child we had imagined (while most people do not have the child they had fantasized, they have 15 or 20 years to adapt, not a few hours in a doctor's office.). Fear for the future. Angry/Guilty questions of who or what is to blame. Guilt over not recognizing sooner. Confusion over which therapy to use. Fear that if we choose the wrong therapy our child will be less than what they could have been.

After a while we settle into a routine, which is constantly changing as our child grows.  We try some different things.  People introduce us to things that seem doable and possibly helpful.  (We started GFCF actually on the recommendation of an Aspergian who lives in the UK who felt that being GF made his mind feel clearer.)  We feel the need to DO something to help our child, as any parent would.

For me and my husband, we would have liked to settle back and Attachment Parent as we had in the beginning.  Life had been a wonderful series of just sharing the world with our son.  But suddenly we were faced with the fact that our child was nonverbal and had an extremely uncertain future in front of him.  When faced with the prospect that our child could wind up in a group home, without communication, at high risk for abuse, with self-abusive behaviors?  Of course we went into warrior mode.

(Side note: As much as I disagree with some of the therapies that are being used out there, I always urge folks to ask themselves a series of questions before starting them.  Do they have potential for harm?  This includes more harm to your pocketbook than is healthy for your family.  Do they seem reasonable?  If they are being tried for EVERY incurable disorder (MS, AIDS, Cancer, Alzheimer's, etc) that is a warning sign for a snake oil treatment.  If they pass these tests, then by all means try it.  Maybe it is placebo.  But if it makes you more hopeful and thus more willing to work with your kid, it's worth it.)

But life is a developmental process.  And our kids being Developmentally Delayed, by virtue of their diagnoses, they are constantly failing to meet their mark.  For my second son, I had signed up for one of those emails that comes once a week and says "Your 18 month old is now doing _______."  And he wasn't.  I finally stopped those emails because it was so painful to be reminded what he wasn't doing.

Birthdays are painful.  An artificial mark in time that reminds you of how much farther your child is behind peers.  Special events are painful because they are a time of expectations and comparisons.  Last year was the first year we couldn't visit relatives for Christmas, because of Nathan's 17 hour/day aggressive/self abusive behaviors.  So in a 9 month bipolar bonanza of horrible behaviors, that was one time that sticks out in my mind.

School is painful.  Signing up for school we were told "We don't take care of children like yours."  And "I once taught a child who probably had autism, but he wasn't nearly as severe as Sam."  Going to school for events, you may see your child along side his same age peers.  Stimming on the stage, inappropriately speaking without regard for the audience, obviously different.  I enjoy difference, to a point.  But there is a limit.

Planning for the future is uncertain.  Even now, my 12 year son has emerging language.  My 14 year old son has language, but many areas where he is not independent.  He just started walking the dog independently.  I never let him walk on our small town's roads before this because he was inattentive and would sometimes look, and sometimes not.  How do you plan for the future when you have no idea where your child's development will be in 5 years?  You have to plan, even more than for NT kids, but the plan is fluid and uncertain, because the future is fluid and uncertain.  And a reminder that your child is different in ways that will put him at risk for the rest of his life.  We have failed to make a will, even though we met with a lawyer, because who will care for our kids?  Another reminder that our family is not the sort to step up to our plate and take a swing at helping our kids.  Or they are too old or infirm to do so.  Which is another sort of grief.  And more guilt that we are failing at helping our kids.

But, hopefully, time also brings acceptance.  It has, in many ways, for us.

I can chuckle at my oldest son on stage now.  I love to see him grooving with his sticks while playing drums in band.  I love seeing his whole body enjoyment of the music, and know that we helped him reach that.  He made honor roll this year.  I love that and know what a huge accomplishment it is.  People stare at us with our middle son out in public while he sings and hits his chest.  And I smile at them because I know it is either coping or enjoyment.  I love that my kids have forced so many to reevaluate their ideas of what having autism is.  I revel in my middle son's intelligence and tenacity at the same time that I groan at the messes that can make.  I thrill at my Aspie's incredible interests that are leading him to read and accumulate knowledge that make other people's mouths fall open in amazement.

But there are still many accommodations that we as a family make.  Not all of them are bad.  My little Aspie is learning to promote language acquisition in his brother while also practicing sharing.  My husband is still a stay at home parent and now a full time homeschool teacher for Nathan.  BS in EE and Math be damned.  Knives and meds are locked up and incredibly inconvenient.  My beloved coffee cream is locked in the basement so it's not drunk by the cupful.  The bathroom is kept locked at night so that a insomniac boy doesn't get up and dump every container around the bathroom.

So, yes, grief is telling ourselves that things could be different, if only autism wasn't part of our family.  And looking too far into what is, for everyone, an uncertain and fluid future.

And, yes, acceptance of what autism means to our children is ongoing and growing.  We thrill to our children's gifts an accomplishments.  We recognize more than ever what an accomplishment is.  It is not just having natural gifts that are constantly exploited and applauded.   It is overcoming roadblocks at every turn and succeeding and evolving in spite of them.

But autism still threatens our children's future.  No one's future is certain, I know.  But uncertainty is guaranteed for our children.  By their very diagnoses and specific disabilities they are at risk for abuse and neglect.

And by virtue of their uncertain future, our future is threatened too.  Yes, it is the future that we would like in our dreams.  The one that we tell ourselves we should have (remember that word?)  The one that involves my husband and me pursuing our interests and doing things on our own.  Being able to be a little selfish.  And the realization that, right now, we don't see that in our future.

And, frankly, it is hard to accept that.  And we do grieve for that ideal also.