In the fourth grade I was a mostly good speller and I will admit I was more than a little surprised when my spelling test came back with the word, “ugly” marked wrong. Simple word,right? Seriously hard to misspell. How did I let this happen? How? I looked at the test, tried to figure out the problem and, even more so, tried to come to terms with how I, the good speller, missed such a simple word.
Except that I didn’t. I didn’t spell it wrong.
Yeah, it was marked big and red and wrong like bad spellings get marked with a check in red and NOT a star… but it wasn’t wrong at all. It was spelled right. U-G-L-Y. Pretty straight forward. Being the rule follower and the righter of wrongs that I was, I walked up to the teacher’s desk and told her as much. She stood firm. She didn’t blink. She looked right back at me with her straight and unsmiling mouth and she said out loud that I was wrong. Ugly, she said, was spelled A-U-G-L-Y.
What?
I was naturally floored. To me this was a life fail because not only had I believed it was a no-brainer word but now I had failed the no-brainer. I was a no-brainer-failure which is the worst kind of fail there is. NO-BRAINER-FAILURE. Ugghhh. I can still remember how flabbergasted I felt. I was so shocked I even ran across the classroom to the encyclopedia and the dictionary to see how I could have gone so wrong. How had I missed that? How had I missed that -a- all my life? The truth is, as the good old dictionary’s pages gleamed back at me in black and white, I hadn’t missed it. What was simple was still simple. Ugly was still spelled like I always thought it was and without an -a- anywhere in the word. None, nada, zip, zilcho.
Nonetheless, the teacher balked.
She clearly insisted the -a- was part of the proper English spelling. Huh? Yep, she insisted, she was not wrong, she was just better than American English and she spelled with proper English. Whatever, I thought, because she wasn’t even English at all so any out of date English spelling did not apply at our American school. I let her know, according to American standards, I spelled the word right. And, as it turned out, I was not a child in denial and incapable of taking responsibility, I was a student in a classroom with a teacher whose ego was bigger than all of Buckingham Palace. In that class , her ego was in fact often bigger than her ability to support, teach or nurture.
What does this have to do with mud puddles you ask? Stay with me. It’s right here.
Egos can get too big for their britches. That is what happens with experts sometimes and the world of autism is filled with experts like my teacher who, for whatever reason, believe they own the answers and know how deep and thick the mud will be on this autism journey… when, beyond diagnosis, they have not yet dirtied their shoes. They make confident predictions about who and what children on the spectrum will be and do when, the truth is, no one knows where the road will lead. Unfortunately, people believe the dire predictions and they give up because…why try when the experts say it’s no use? The worst thing you can do is let them shake your faith.
Don’t get me wrong…the experts are important and have their place. Just realize the experts are merely guides on this journey because autism is gray like that and guides are necessary because autism is fluid, it changes and it doesn’t much like being nailed down. These experts with their degrees are helpful in nailing down the diagnosis but they often lose sight of the reality that autism is more than the diagnosis. The most important thing is to have a battle plan and you can’t formulate a good battle plan unless you have been to battle. What the experts don’t and can’t predict is how bright the sparkle will be and how remarkably high these children and their families will rise up and fight to bridge the gaps they face. The sparkle factor matters. It matters BIG.
And, yes, there will be puddles. There just will. Autism is not always sweetness and light. Yeah, I said it. Autism is going to have dark moments and knock you down on occasion. There will be mud, blackness, deep pits, and there will be unexpected levels of murkiness in some moments. There will be uncertainty, doubt and grayness too. But…wait for it…, the real truth is that there will also be sparkles that are sparklier than you could have ever imagined.
And, you’re right, we would not willingly order a side dish of autism for our children if given the box to check at their birth. But the crazy thing is that if I could go back and change it…I wouldn’t. Yep, she said the crazy thing. I would not give autism away. I love what it has brought into my life. I’m not crazy about the mud and the murkiness in some choice moments but they sure have imparted some sparkly brilliance into my life that would not have existed otherwise. That murky puddle I call autism is a really good thing that has this way of bringing the happy out and spreading laughter into my life and others.
Yeah, it can also spread out some chaos and crazy but the sparkle is worth it. The boy rocks.
The God’s honest truth is that the autism mud puddle is going to look like a murky, mired down mess some days. I won’t lie…it will. But, just like with everything else, autism all depends on your perspective. There’s magic in that muddy puddle if you open yourself up to it. The sparkle is right inside the muddy mess. Yeah, it’s mucky and messy and you can for darn sure get mired down inside of the complaint of how down right awful it is if you let yourself. You can scream like a banshee at the rain and the clouds and the cold weather that came paired with it. And, honest to goodness, you can get absolutely lost inside the pity party if you aren’t careful.
But where does that get you? Eh?
I have watched my boy throw the wooden puzzle through the window, I have received the call from school when his class was evacuated because he had the melt down to end all melt downs. I have had the unkind parents who don’t want us in their child’s class. So, truly, I get it. Nonetheless, I choose to embrace the sparkle and keep hope warmed up and ready to go. I take the experts for the guides that they are and realize autism is not in stone. It grows, it breathes, it moves. And, when it sparkles, let yourself soak in those soft moments. The heavy ones are going to come, no doubt, but if you have to hang out near the puddle, in the puddle or around the puddle, jump up high and land hard with a splash. And smile. At least look for the sparkle in your mud puddle because I guarantee you…it’s in there. Honestly, it’s a whole lot brighter to look for the sparkle than it is to settle in and lose yourself in the muck for good.
wisdomfromthesisterhood 