Friday 25 January 2013

Grieving for What Might Have Been

I think it's really interesting that as a society we teach our children and teenagers how to perform CPR but not how to help someone who is grieving.  The odds of needing to resuscitate someone are pretty slim.  But we all know someone going through a tough patch.

One of the things which can be very touchy for families with autism is when you go through the process of grieving what might have been for your child.  Sometimes it can feel as if the world is narrowing with every step.  Dreams of CEOs or pro athletes can become dreams of your child being able to move out of the house and not needing constant care.

I find this usually produces one of two reactions.  Either anger (how dare you be upset your child is less than perfect, there are so many people who have it worse than you) or the cheer-up reflex (everything will be fine, don't lose hope, sing a rainbow, tra-la-la). 

Why isn't it okay to be unhappy that your child's potential has been limited?  Why isn't it okay to be upset that their path in life will be more difficult than expected?  Heck, on a selfish note, why isn't it okay to be upset at the major life-changing event which has landed in your lap? 

Is it because no one likes to remember that we are still a judgmental society who are cruel to those who don't fit in?  Is it a remnant of some kind of contagious magical thinking where we're afraid something 'bad' will rub off if we acknowledge it?  Is it a desire to raise the spirits of someone we care for, whether for ourselves or for them? 

Probably a little of all of the above.  No one hopes their child will be autistic.  It's something which families and parents learn to deal with but I doubt that even the "autism is the best thing which ever happened to us" cheerleaders would choose it if they could go back and make the change.

This isn't a rejection of the child.  I think that misconception is what sparks a lot of the anger.  If a child was diagnosed with cancer or had a severe physical injury, no one would be surprised if the parents were angry about the disease or spent some time grieving the injury. 

I think it's important to give yourself time to grieve.  Our society rewards stuffing our feelings in a bottle to get the job done but this isn't a short-term white-knuckle situation.  Keeping feelings stuffed is exhausting and they still tend to spew out at the worst possible times. 

I grieved for the child I imagined.  I let it fly away.  There are still points where I find myself grieving as something hits me and I have to wonder if my children will be able to accomplish it.  I've also grieved for the life I had imagined for myself.  My path will be different than the one I'd planned.  None of this means I love my children any less or will fight for them any less.  In fact, I believe it makes me able to fight better because I can bring my whole strength to them rather than having to keep some of it diverted to contain unpleasant thoughts.

The most wonderful reaction I experienced after the diagnosis was from my best friends.  I returned from the appointment and was in tears.  They held me and didn't say a word.  Whether through compassion or lack of knowing what to say, it was exactly what I needed.  The luxury of being allowed to feel without judgment or commentary.  It's a rare thing in this world and I treasure it greatly.

The idea of letting go of emotional control can be frightening.  But the doing of it is so much easier than fighting against it.

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