Thursday, November 6, 2014

Autism Mothers Aren't Chosen

If you are the mother of a child with autism, the news lately is a little tough to hear.  I don't want to and won't comment on the recent horrible happenings involving mothers of autistic children, because I am not in a position to do so.  And that is my point here.  Mothers of children with autism are not a homogeneous group.  We are not a single type.  We are not chosen.  We share something very major in our lives---we are the mothers (and fathers, but society and the news seems to focus on mothers) of a child with autism.  But aside from that, we are all very different people.  We react differently to many things in our life, including the stresses of raising our children.

When I read about the mothers that break, I feel like I am supposed to have some inside insight into them.  I don't, really.  It is like when I read about any crime or horrible event.  I figure there are so many factors involved that I simply can't know or understand that I really don't know what happened.

Right around the time Janey was diagnosed, I was on the jury for a high profile murder trial, of a foster mother whose foster child was killed.  We eventually found her guilty of manslaughter.  I can tell you that after hearing all the evidence, and after much, much thoughtful deliberation, the amazing people on that jury felt for everyone involved---most of all the child, of course, but also the foster mother.  She was not a demon.  She made extremely poor decisions, and she paid for them.  But the experience left me realizing that we usually have no idea what life others live.

The only autism mother I can truly speak for is myself.  And I can only speak for myself at the moment in time I'm in.  I know there have been moments of despair, and my thoughts at those moments always went to escape---my own escape.  I thought of getting in the car and driving away and never coming back.  I thought of escaping into death, my own death.  Those thoughts were fairly rare, but they happened.  What helped me out of those moments in the abyss---knowing I had a family who loved me, knowing that there is always a hope for a better tomorrow, and often---Janey herself.  That is the biggest one---how even after the toughest times, my delight in her can make me happy like nothing else.

Autism mothers aren't chosen.  They are parents.  The idea that somehow they are special, different, miracle workers---those are dangerous ideas.  They are dangerous because of the expectations they create.  IT IS NOT OUR JOB TO FIX OUR CHILDREN.  That thought is what I think causes more despair among parents of children like Janey than any other.  We all have read about amazingly devoted parents who "cure" their kids.  Maybe this has happened, once or twice in history.  But most of the time, the children that get "cured" would have done so anyway.  I truly believe this, with all my heart.  I don't talk about it a lot, because it is not my story to tell, but my older son could be the subject of one of those "cured" fables.  I didn't cure him.  I am not going to cure Janey.  It IS my job to do what is the job of any parent---to give her a good life as much as I can, to love her and cherish her, to feed her and clothe her and see that she gets an education.

When the world understands that autism mothers are not a special, exalted breed, but just parents who have been dealt a more challenging hand than most, I think society will be more inclined to help us.  When the world understands that autism is not some mystical, mysterious state of being, but is more like diabetes or cystic fibrosis or other childhood conditions---not the fault of a parent or a child, not something a parent or a child can cure, not something that makes a parent or child better or worse, but a condition that requires help and services to deal with, I hope that help will be provided.  It will not prevent all tragedies, even then, and that is because every person, every child, every situation is different.  Please remember that when you hear the news.

3 comments:

Hillary K. said...

I must let you know what a comfort your words are. I am much further down the "autism road" as my daughter is now an adult and we are facing challenges and issues that we hadn't while she was in school. Your insights, in the face of profound joy and profound despair, help me immeasurably. We've never met, and likely never will, but you are my friend.

Shanti said...

AMEN!!!!!

pianorox said...

This is a brilliant synopsis of autism how the world should view autism: "more like diabetes or cystic fibrosis or other childhood conditions---not the fault of a parent or a child, not something a parent or a child can cure, not something that makes a parent or child better or worse, but a condition that requires help and services to deal with" BRAVO! I hope others read this and take it to heart and it (or similar words) becomes the mantra for how autism is regarded by society.