Wednesday, March 21, 2012


“If I could snap my fingers and be nonautistic, I would not. 
Autism is part of what I am.”
- Temple Grandin

More and more, we're being hit with questions about autism.  These inquiries are well-meaning, and certainly welcome from those who really want to know.  But I fear that, just like when I'm at the drive thru and the person asks for my order, I kinda freeze when I hear that black hole of a question.  I want to represent my son well.  I want to represent our family, our life, and the community well.  And I certainly want to make sure that the inquirer catches above all that Ryan is a blessing, and that he is RYAN.  He is as the Lord made him, whatever labels he wears.  

Turns out that stuff in even ten minutes to answer is like shoving Niagara Falls through a drinking straw.  No, one of those little coffee stir-stick straws.  

So, what do you say?  

Since I can't possibly talk better than I write no matter how I wish I could, here you go.  

What is autism parenting, you ask? 

It's a set of traps and cause-effect relationships that you navigate blindfolded and ears plugged.  Once in a while, someone comes along and pops that ear plug out and speaks something that makes sense, then you go back to silence, except for the screaming when you hit the wrong "cause".  

It's learning to be comfortable walking on eggshells... and with the breaking and pain that occurs.  

It's seeing your younger kids... three and two... already absorbing their brother's differences and helping him, and praying that when they notice that everyone else's big brother doesn't act like him, they'll fell blessed to have him as their brother, not jealous of those with neurotypical big brothers.  

It's realizing that the best you can do is search for the right questions.  Answers?  Well, they're few and far between.  

It's realizing that there is no real resident authority on autism.  You are an expert on your child, and really, that's it.  I can't explain another child, or another person on the spectrum.  There may be similarities, but they are so diverse it's ridiculous to even try.  

It's realizing that people aren't going to get it.  And conversely that I don't get them.  So if I don't have anything clearly nice and pat-on-the-backish to say about someone else's situation, I don't say it.  

It's learning to smile and nod, to gently educate others when you have an opening, and learning when others are just not that into it.  Not everyone... and I'd say not many people at all... truly want to know what's beyond the surface in our family.    

I've learned that it's okay for people to not want to know everything about stuff that goes on.  

It's learning that it's okay to have boundaries, even boundaries that others may see and think you're nuts.  

It's taught me that I was incrementally more concerned with what others thought than I ever knew.  

It's taught me that I have to change that.  

I'm learning that it's okay to decide where you sit in every debate there is on autism and what causes it... and I'm learning that the more I learn, the less I know.  

I'm learning that it's okay to love Ryan as he is, and not want him to be just like everyone else.  

I've learned that the balance between treating and helping the behaviors and letting him be himself is tricky at best.  He is a great person, and God made him to be Ryan, not Richie, not Maelynn, not me, not his Daddy.  

I've learned that the best way to help him is to listen to and learn HIM.  Not necessarily everyone else who has an educated opinion (we're talking the people who study this for real, not joe blo down the road who saw Rain Man, had a kid in his so and so group who had autism, or knew someone who knew someone) is correct.  They may be correct for fifty other kids but not Ryan.  

I've learned that there are a lot of "Joe Blo's with an opinion" in the world.  And a lot of them are really good people who I don't want to burn bridges with.  

I've learned that when I run across someone who wants to learn about us, I should do my dead-level best to help them learn.  They are a gift to us.  

I've found that, although I've rolled my eyes at the thought of online friends in the past, they have become a great source of understanding, and the internet and Facebook have become channels to get to know family I've never met.  It's an amazing pipeline of encouragement and information sharing for we autism parents, and thank God for it! 

I've found that there are tons of similarities with typical parenting, though many of them are magnified like crazy.  One of these that is totally similar?  Not ever enough time in the day.  

Which is where I am.  So for today, I'm through shoving the falls through a straw... but I'll be back soon.  Because there isn't a cure, there isn't a fix... these are our kids, they are who they are.  And I've learned, above all, to celebrate who they are.  Because if I focused on the "a" word too much, I'd miss them, and missing them would be the ultimate tragedy!

Thanks be to God for all these lessons we continue to learn!

It's my sweet husband's birthday today... my partner in all this blessing of a mess... and if I'm going to have everything together for him, I have to get scootin'.  He knows all these things as I do, and I know he can add more that I don't see.  So thankful for you, dear.  I love you so very much, and am tahnkful and comforted that you are sharing this journey with me.  

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