Tuesday, February 4, 2014

The Politically Incorrect Enjoyment of Autism Parenting

I've been thinking for a while about this blog entry, and having some trouble putting into words just what I want to say, what has been filling my mind for a while now.  Last week one day, when Janey was having a very sweet day, Tony and I got talking about how sometimes, it's a good feeling to know she'll always be with us.  We watch the boys moving on.  William is in college, and weeks can go by where we barely hear from him.  Freddy is a junior in high school, and busy so much of the time.  Soon he too will be in college, and then they both will be adults.  I hope we stay very close with them, always, but I realize there are no guarantees.  And that is how it should be---kids grow up.  But Janey will not be growing up in that same way.  She will become an adult, but she will always be our child.  I usually say something here like "barring miracles" but I've come to realize the miracles aren't on the way, in our case.  I've accepted that.  And sometimes, I can truly embrace the idea of a child that stays at home forever.

So what's the problem?  Well, there are two ideas that come up over and over again in my reading about autism, both of which I do very much like.  One is autism acceptance---being able to see Janey as valid and important and lovable just the way she is.  I try to do that.  I am not perfect at it---there are days when Janey screams all day or says nothing for many days but "I want strawberry milk" or "I want Kipper" that autism is harder to accept than it is on the better days. But most of the time, I accept her autism, and on the good days, I embrace it.  The other idea is assuming competence.  I want to assume that Janey understands much more than she does, that she maybe even understands everything, that she has abilities that she hasn't shown us.  Basically, the philosophy is not to underestimate Janey, not to rule out anything in terms of what she can do.

So---I accept Janey as she is.  I accept that as she is right now, she will not be able to ever live on her own. She is my child forever, and that is sometimes a good thought.  However, I also want to assume that Janey has untapped potential, that some day, somehow, she might do what I'm told other people with autism have done---she might suddenly show that she can do things like read anything, communicate fully somehow---heck, maybe go to college.  And when I think that way, feeling happy that she is going to always be in my house, be my child forever, seems wrong somehow.  SO---how can I feel both at once?

There are many more examples I can think of like this.  I feel happy that Janey will never experience the nasty side of girls, the mean girls and the bullying.  But that is accepting that she is not going to ever understand social interactions at any kind of higher level.  I love it that Janey loves me wholeheartedly, that she smiles at me at times with the intense love that is uncomplicated by the complex feelings mothers and daughters have about each other as they get older.  But don't I want her to mature, to be able to see me as a real, flawed person she can break away from?  I love how Janey loves music---how she claps and jumps and thrills with excitement when a song she loves comes on, how she remembers any song she's ever heard.  But shouldn't I wish for her to have a mind that is more typical, a mind that doesn't have room for all that because it's learning algebra or history or biology?  I feel glad she will never have her heart broken due to an ended romance.  But I should be dreaming of her being able to experience that romance in the first place.

In short, when I accept the good parts that come with autism, I am also limiting what I expect from Janey.  I feel joy in the parts of her that are childlike and will remain so.  But should I feel only sorrow that she is not going to have a normal adult life?  Is it okay for autism acceptance to be also a joy in what autism has made Janey, even if her limits are part of what it's made her?   I don't know.  I might be just overthinking.  But for now, I'm going to choose to embrace the parts of autism mothering that I can, and to try to do so wholeheartedly, without worrying what that says about me.  I'm going to allow myself to picture what is good about having my child be a child forever.

1 comment:

David Fee said...

The ancient Romans believed dwarves were eternally youthful because they never grew up and the some American Indians thought the mentally ill were in touch with the Great Spirit. We make up things as compensators for deficiencies in the body or mind thinking there must be a silver lining to a dark cloud. It's crossed my mind that my daughter may never need money to go to college and buy her first car but it's not by her ability to choose. Even simple things like saying or pointing at what kind of donuts she wants at Dunkin Donuts eludes her even though I know she has her preferences. It just seems to be the highest of crimes that a kid is denied so much at the beginning of life. As an adult, I can handle what life gives me now because I'm mature enough to know I'm not going do much of consequence nor is my life going to change a lot for the better. I don't know if my daughter knows what she is missing as she appears to be "happy" and "silly" to her teachers at the daycare. Would her later self-awareness (if it happens) be a blessing or a curse? It reminds me of the 70s TV movie "The Eyes of Charles Sand" where the guy inherits the ability to see some horrible stuff but he can use the ability to solve a murder.