The Headline

I’m obsessing about something.  What else is new?

I wish I knew how to turn off my brain when I get like this.  I’m likely to be up half the night stewing about this, thinking over and over (and over) about every detail of what was said, how I responded, what I could have said differently, what the person might have really meant by what they said, etc. etc.

You see, I’d found myself getting all bent out of shape about an article a friend had posted on facebook regarding a potential cause of the autism “epidemic.”  I debated for quite a long time before even commenting.  I knew it was a can of worms I probably should not open.  But I couldn’t help myself.  I started spouting off comments in my typical, perfectly worded, and precise manner.  I linked to relevant articles about why the autism epidemic is a fallacy, how the researcher’s conclusion about the cause of autism wasn’t based on actual science, and then touched on some other common myths about autism, including the idea that being autistic and being social are mutually exclusive: the single biggest misconception about autism, in my opinion (I should really write an entire blog post about this one of these days).  I felt compelled to keep coming back to comment again and offer additional information, even though nobody was really asking me.  Part of my own Asperger’s is that I have a hard time letting things go…

Later, as I was lying in bed, the computer long since shut down, I was still ruminating about this.

WHY had I gotten so upset about this article?  I must come across at least one flawed study correlating autism with various potential causes each day.  Usually I can just scroll past them without getting engaged in debates.  Why did I feel the need to say something this time?

Honestly….my intense reaction was simply because I read the headline and I got SCARED.  But not for the reason that the author intended to invoke fear.

I’m scared that my kids are going to grow up in a world where articles like this are everywhere, with headlines blaring a big WARNING that by 2025, there will be even more children like them.

How are they supposed to develop healthy self-esteem, being constantly bombarded with messages that they are part of a big, scary EPIDEMIC, something so horrible that people are using words like THE WAR ON AUTISM?  There are so-called charity groups pouring funding into researching prenatal testing aimed to eliminate autistic babies….beautiful babies like mine…before they can even be born.

We talk about autism openly in our household.  Lennon knows that he has it, that Juliette has it, that I have it, and that Daddy likely has it too (but he isn’t officially diagnosed, like we are).  Juliette has certainly heard the word many times, but I am not sure she really understands yet.

I see articles like this and I just want to scoop up my babies and hug them tightly and not let them see any of this.  But they WILL.  How are they going to sort out their emotions surrounding this?  I can barely wrap my own head around it, and I am an adult.

I feel like I spend a lot of energy trying to convince others of what I see in my children, how truly beautiful and bright and wonderfully different they are.

I’m beating my head against a brick wall.  I’m not making a difference.  I can’t convince the entire world.  Not when everywhere we turn, we are being told that autism is bad.  It’s basically the WORST thing that could happen to a child, right?

WRONG.  That’s so wrong.

Tonight, I am going to give my PERFECT babies an extra kiss on their soft little cheeks.  Tonight, they are still just babies.  Tonight, they don’t know yet that there are people who think this world would be better without people like us in it.

And tomorrow, or someday, when they figure this out for themselves, I will be there to wipe away their tears and tell them that they’ve always been perfect to me.  I guess that is all I can do.

But dammit.  I am so scared.

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POOP!

Children with Asperger’s Syndrome are often called “little professors” because of their high intelligence, strong verbal skills, ability to relate better to adults than to same-aged peers, and impressive knowledge about their “special interests.”   When my seven year old son was recently evaluated, the doctor said he is a “textbook aspie.”  I agree.  Basically, if you look up Asperger’s in the dictionary, there should be a picture of Lennon’s handsome face.

1557476_10151955593657881_295134936_n Lennon’s special interests began by the time he turned one.  He was obsessed with whales (and other sea creatures, but ESPECIALLY whales).  He could point to every whale in his animal encyclopedia and tell me all the species names.  By age two, he could draw recognizable whales.  He talked about them constantly.  Marine life is still an interest of his, but he has moved onto other interests throughout the years as well.  The current big one is Minecraft (like most boys these days).

Lennon has always been an “old soul.”  He has always seemed wise beyond his years.  When he was born, he had trouble breathing and was whisked away to the NICU and hooked up to all kinds of machines and monitors.  I didn’t get to hold him until the next day.  When I held him and he opened up his huge brown eyes and looked at me, I was blown away.  He seemed like he had all of the knowledge in the entire world in those eyes.  That may sound crazy, but that is what I thought.  I could tell he was special.  As he has grown, he has shown us more and more just how amazing he is.

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When he was little, he seemed incredibly frustrated to be trapped inside a baby’s helpless body with his adult mind.  Here’s an excerpt from his birthday letter I wrote for him when he turned one (a yearly tradition I do for each of my kids on their birthdays):

“You would always study everything we did, and I could see the wheels turning in your head as you contemplated how you would someday accomplish these “big boy” feats.  You had a strong need for movement. For your first few months we had to provide this movement for you, either by rocking, walking around with you, wearing you, bouncing on an exercise ball, etc. You would not allow me to sit down EVER. Even if you were sleeping, you would wake up and cry if I sat down or stopped moving. Around 4 months you began your quest for independent movement. You started rolling all over the house, trying to sit up, and trying to crawl.  You were incredibly frustrated until you figured out how to crawl in the proper hands and knees position at 6.5 months. Then there was no stopping you! Within one week you learned to crawl and then began pulling yourself up on everything and cruising. By 8 months you would pull yourself up and then let go and stand alone for a few seconds.  A week shy of ten months, you took your first steps. Within a few weeks, you were walking everywhere and the adorable crawling phase of your life was over as quickly as it had begun.  We just watched in amazement as you accomplished all these milestones in quick succession. With each new skill, you became a happier and more content baby. I loved the proud look you would get when you’d learn something new.”

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Lennon also spoke early, in true “little professor” style.  By 18 months, he was speaking in full sentences.  We could carry on conversations with him, and it was just like talking to another adult.  We have always talked to him truthfully about anything he asks about, including “adult” topics such as sex, death, religion, war, politics, etc.  He stopped believing in Santa around age four or five.  He asked if Santa was real, and when we responded with, “what do YOU think?” he simply shook his head, and we confirmed it.  I was a little saddened that he learned the truth so young, but not a bit surprised.

It seemed almost like he was never a child at all…

But, once in awhile, he reminds me that even though he’s mature, even though his brain works differently…..he’s still a seven year old boy.

I found this in his room today.  It’s a diagram of poop, including a visual of poop exiting the buttocks.  Hah!

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The List

I love lists…usually.  This list was different though.

I’d sat down, just to jot down a few things, so I wouldn’t forget what to say when the time came.  Before I knew it, I’d filled an entire page, and had to turn my paper over and continue writing on the backside.  There were phrases such as: EXTREMELY (underlined several times for emphasis) picky eater, routine oriented, lacks social boundaries, overly friendly with strangers….and on and on it went.

I looked at my paper, dumbfounded that there could even be that many things on the list.  An overwhelming feeling of mingled dread, fear, and shame washed over me.

This was a list of everything “wrong” with my daughter.  Everything that makes her supposedly “not normal.”

We don’t think of her this way.  We love her exactly as she is.  We spend our days living in the moment with her, and focusing on her strengths, her successes, her potential.  To even have to sit down and compose a list like this about my child seemed so wrong.  Unfortunately, my next step would be even more difficult.  I would need to meet with a social worker and tell her all of this information, in hopes that my daughter would be considered “disabled enough” to get state waiver funding for the help and support she needs and deserves.

This is one of the hardest things for a special needs parent.  It goes against all instincts.

As I sat there, unable to move from my chair, staring at THE LIST, my phone vibrated loudly on the counter, instantly snapping me back to reality.  It was my mother.  I was surprised, since we don’t get to talk on the phone too often these days.

She’d called to tell me that she had met one of the aides from Juliette’s classroom.  My mom is a cashier at a grocery store, and the aide had come through her line.  They were making small talk about their plans for the holidays with family.  My mom mentioned her grandkids, and started listing off their names.  When she said Lennon, the woman’s eyes lit up.

“Lennon?!  He doesn’t have a sister, does he?  Juliette?!”

“Yes!  Juliette is my granddaughter.  Do you know her?”

“I work in her classroom!  Juliette is……well…..she has this…..MAGIC.”

She continued to talk at length about how sweet Juliette is, how adorable, and what a little fashionista!  She said Juliette is a leader, always full of ideas and energy and positivity.  She’s highly empathetic, constantly looking out for the other kids in her classroom, all of whom have various special needs.  She is intelligent, and has a memory that is nothing short of amazing.  She knows every word to every song, even after hearing them only once, and she encourages the nonverbal children to join in.  She is just a pleasure to be around.

Linda raved about Juliette for a good ten minutes straight.  She even said that her life is better because Juliette is a part of it.  She had so many positive things to say, but the one that stood out was the word MAGIC.  Because that’s exactly what she has…..who she IS.

There’s no denying that Juliette is DIFFERENT.  But it’s the most amazing kind of difference.  There’s just something about her, some incredibly strong, unmistakable magnetism that she possesses.  Everyone around her senses it, and the reactions range from bewilderment to awe.  The magic.   It’s inside of her, and it shines through her clear, dark eyes.  ❤

I listened to my mom recount this amazing conversation, and I thought….how opportune.  This was exactly what I needed to be reminded of.

I got through the evaluation with the social worker.  Juliette was approved for the waiver funding.

But as soon as the social worker walked out the door, I took the list, gave it one last disdainful glance, and tossed it right into the trash.  Because that list of negative behaviors, deficits, delays, and differences…..that’s not who my daughter is.

She is MAGIC.  And that is the only thing that matters.  ❤

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