Monday, April 2, 2012

Step 2: How a family is changed.

My husband will share his story on how we first learned of Brandon's diagnosis of autism and what that was like, so I'll fast forward to those early days of the autism frenzy.  A period of time on our lives that is a bit fuzzy.  I guess that's how our brains cope with tragedy -- it tries to block it out. 

One particular traumatic stress syndrome memory is that of a day my mother called me.  She lived in Missouri, we lived in Texas.  That in itself, an awareness tidbit -- in just how much harder it is to have a diagnosis of autism, realize all that it means, and then find yourself with no family around, and not yet have found a church family that would even attempt to welcome you and your one-child circus.

I had just returned from the grocery store without any groceries.  Brandon had, yet again, another meltdown from too much stimuli in the store.  These were the early days of his diagnosis when I thought I could still do normal things with a not-so-normal acting toddler.  I had no clue and was apparently a very slow learner because I kept doing the same thing in taking my son with me, and expecting very different results, that he would not have a meltdown. 

(If you appreciate jelly jars that your child can launch without shattering, you can thank me for the stores switching to them vs glass)

So yet again, I was forced to flee the looks that did kill a little piece of me inside, leaving my full grocery cart at the check-out.  Yet again. So close, I had even made it to the checkout that time!

Once settled back home, the phone rings and it was my mother.  I shared my story about the days disaster.  And she said, "One day you will go to Washington, D.C. and get the help for Brandon you need."

Just simple, matter-of-fact. 
As if it could actually happen. 
As if I actually wanted to do that.

I remember being so very mad at her insensitivity. How dare she think I could go to Washington, D.C. and save the world from autism when I couldn't even get through the grocery store so we could have food to eat for dinner.

But you know what was even more infuriating than that?  That my mother was right.  I did eventually go to Washington, D.C. Twice. I did, and do, belong to movements that would change the way the world views autism.  I did help my son because of all I learned from all of the other mothers like me who couldn't get through the grocery store either.

And I think that's one of the many beautiful things that have risen from the ashes of that diagnosis of autism....

How it changes you. How being a parent means more when you have to fight more for your child's future.  How being an advocate means more when it's your own child's discrimination you must fight against. How it's made me value my Christianity even more than I would have before autism, in that you can't  be complacent in anything that means something to you.  If you believe in it, you must fight for it.  You must share that good news to help others, much like the only help I've been given for my own son with autism, was given to me by others who have been helped by someone else.  You simply cannot be passionate about something and remain silent about it at the same time.

My son's silence gave me my voice.

That realization, that change inside, can never be switched back and some things are lost because of that. Some things that I would argue, needed to be lost.  You can't have been through the adversity we've been through, the discrimination I've seen, the senseless maiming and murders of the children, youth, and adults with autism some of my autism friends have had to go through -- and still have the patience and compassion to hear a typical-mom complain about running out of gas or frazzled because her typical children are having typical sibling squabbling.

Once you've seen the depth of a real crisis, you can never go back to actually being upset or shaken by the shallowness of a fake crisis.  That may be hard for a person who doesn't have a child with a disability to read, let alone understand -- but it's a true awareness fact for so many.  One that helps you realize why so very many mothers who have a child with autism, do not have typical friendships with other typical mothers anymore.  It's not so much that they can't relate to your situation, it's that you simply cannot relate any longer to theirs.

You can never go back and think it's just about you and that dream you had long ago of two typical brothers getting in trouble for being up giggling past bedtime, a summer lake-house, a two-income picture-perfect family. 

You can't ever go back to that because you now know that life is so much more than you. So much more meaningful than those dreams.  So much better than any picture-perfect anything.  You can't ever go back to being like everyone else in thinking something should be done, thinking you should write to your Congressmen about this or that -- once you have had no choice but go to Washington, D.C., no choice but to write to your Congressmen about an issue until they finally listen.

Because of our son who has autism, my husband and I will never go back to looking at a wrong and not try to make it right.  Because of his brother, my typical son Matthew will never see bullying and not do all in his power to stop it.

You can't ever go back to complacency. 

And I wouldn't want to.

You can never go back to being someone who thinks something should be done.

You are now someone who must do it.