Monday, June 04, 2007

It's Not Easy to 'Get It'

I just watched a You Tube video by Christschool and I agree with everything said on it about how non autistics can be allies in the neurodiverse movement. But it got me to reflect on the journey that I have taken to get to that position. It's not an easy thing for a neurotypical parent of an autistic child to arrive at a place where they understand the neurodiverse movement; I won't say truly understand because, being on the outside looking in, you cannot truly appreciate the situation autistics are in, kinda like a white person trying to get in the shoes of a black person. We can empathize, but we can't really understand.

It's real easy to fall into despair when you first receive your child's diagnosis of autism. There's the 'you have terminal cancer' attitude you get from the doctor. The shock that your initial dreams for you child have been shattered. That your life has taken this bizarre left turn, and the road ahead is dark and foreboding. Unless you have disability in your immediate family, nothing can prepare you for this.

Getting through my denial portion of grief, I ran headlong into anger. I remember anger at my first brushes with people who actually saw autism as something more that just a nightmare that I had just been thrown into. "How can you actually want to keep THEM the way they ARE?" I said to my wife and posted several things to that effect on some boards. The idea of not wanting a cure for autism was repulsive to me. The people advocating this position were abhorrent and uncaring of my daughter's plight. Being told that I was similarly repugnant for looking so hard to 'cure' her of this 'disease' further confirmed my suspicions that their souls we headed for eternal damnation.

Then Amanda Baggs' Getting The Truth Out photo essay hit me square between the eyes. I followed the link off of a board and went through the first half of the slide show which ran along pretty close to my perceptions at the time. How horrible; what CAN we do to FIX her? The second half, and the sudden juxtaposition of advocator vs advocatee, caught me so off guard that there was a paradigm shift in my thoughts of what I was doing and why I was doing it. I admit that I did not get all the subtleties being put forth as far as advocacy, but I did get the point that there is more to my child's disorder that something that needed to be defeated.

I gradually went from exorcising the autistic beast from my child to discovering what I could do to help her and myself deal with the issues that would be there for the rest of our lives. By the time we discovered our youngest was probably on the spectrum as well, I had a different perspective on what it meant. I will not deny that thoughts of a 'normal' life are still not appealing; but I no longer view 'normal' normally anymore.

My moment of clarity in all this is that parents have to deal with this new and different life; to my children, this is the only life that they will ever know. There is no grieving process for them. I guess that's where there is a difference in advocacy between the autistic and the parent of an autistic. Parents have to deal with the loss and change; in that sense we have a certain core of selfishness, no matter how much we sacrifice for our kids. We're mourning what WE'VE lost, not what THEY'VE lost. Autistic children haven't lost anything, but they'll need parents' help to gain everything. The sooner I can shake off that life that has never nor will never occur, the sooner we can get to work.


Mom26children said...

Hi again Bill,
All I can say is WOW...

GG said...

I'd say you got it.
You may not want to--but you got it.


Accepting is such a unique thing for every family, our daughter was only 9 months when she first saw a consultant and we just seemed to accept the situation straightaway.I think for us it didn't hit until she went to nursery and we could see how different she was to other children her own age.And because she had been different for so long it was easier because we could see she was behind her peers but she was still progressing.She is also the sweetest, happiest child that I have ever come across and I just wouldn't want to change her in anyway and her sisters also agree.

Pweshes Mama said...

Hi, thank you so much for this post. My son was just recently diagnosed and naturally as parents, the first thing my husband and I thought of was to get him as much therapy as he can get and get him better asap. It never crossed our minds about how that was probably more to serve us rather than our son cause as you said, our son isn't grieving. I'm sure he's been happy living his life for the last 4 years. Thank you for opening my eyes and making me start looking at things (well as much as I can anyway) through my son's eyes as well. We will certainly hope to find that balance in trying to make him better without trying to change the essence of him at the same time cause we do love his little quirks too.. thanks again!