Wednesday, November 18, 2009

Supermom vs. Autism

I was standing in line at the grocery store, waiting to pay for the basket full of groceries I had amassed on my once a month grocery stock-up. I hate
grocery shopping, especially with kids, but I had procrastinated too long and the bread had molded and we were out of milk. My children were trying valiantly to hold it together; it was late in the afternoon and had been a long day. Grocery shopping is a break from the Routine that basically rules our lives, so often there is a difficulty in this endeavor. But today the children were on their best behavior. They were helping put
groceries on the conveyor belt, while JBean kept up a steady stream of chatter. Today it wasn't them, it was me. My head was throbbing: I needed caffeine and I needed quiet.

My son decided to chat up the person behind us: "Do you like Mario Kart?" The person mumbled something politely, too quietly for me to hear. JBear took this as an invitation and continued, "I have Mario Kart for the DS. I also have a Wii. Do you have a Wii? I like playing boxing. I am good at boxing." I glanced back and the woman he was talking to seemed ok with her verbose companion, if a bit noncommittal. My son continued:

"Did you see the Indiana Jones movie? I did, it was
good. They have the Lego game of Indiana Jones for the Wii coming out next month. I want that. Lego also makes a Star Wars game for the DS. They are making one for the Wii, but it's not out yet..."

Again, I glanced back and saw the woman shuffling her feet, looking around nervously. Time to reign him in. "JBear, shh! Come help me with the groceries." He didn't hear me. I had to call him three times. Then he started asking for gum at the checkout counter. And a yo yo. Pleeeeease? He has this trip-switch, when he has something on his mind, when he wants something, he just keeps asking. I don't even know if he realizes he does it. About that time, the lady got that look. Oh, you don't know the look? Simple.

When people notice something is a bit different with your kids, they react in one of two ways. The first group widens their eyes in amazement and says, "Boy, you sure have your hands full!" And yes, yes, I do. But it is what it is. I don't have an "S" embroidered underneath my t-shirt. I am just a mom, dealing with what I have been given. I don't want praise and I don't want pity. But often, they look at me as though I stepped from a space ship, a complete alien entity. If I throw the homeschool aspect in to the conversation, I see the door slam shut, the eyes cloud over, and I can almost hear the voice in their head as they thank the Lord that they don't have kids like mine, and thank goodness it isn't contagious!

The other group I encounter widens their eyes in surprise and says, "But they seem so normal." This is actually frustrating. This is the reaction I get when I try to explain Asperger's. I know that on the spectrum of special needs, Asperger's is considered pretty low. And my kids are actually mildly affected. Their behaviors are more annoying or frustrating than dangerous. My son has not eloped from a classroom since the First Grade. Of course, it helps that he has been homeschooled since the Second Grade, I suppose.

He does have an anger and frustration problem. In fact, when he is angry, he could give a salty dawg a run for his grog. He has recently decided that it is really cool to respond to any insult, real or imagined, "I know you are!" You can imagine how productive that is! He is in the habit of cornering people, because he is a social guy. He wants to interact, and find interesting things in common, but he doesn't pick up the cues when someone has had enough. I am constantly playing watch dog for him, translating so they will not miss out on what he has to offer, worried that people won't like him. Or worse maybe, they will judge me because of who he is.

I am not in the habit of explaining myself to random strangers, but I must be lacking. When I do try to explain to someone who inevitably asks, "What's Asperger's," I can sometimes hear, "Well, all kids do THAT." And yes, that's true. All kids do prattle on about minutiae. All kids have terrible table manners. All kids get mad and frustrated and yell. All kids don't know how to figure out when you have had enough of them. All kids interrupt. All kids wear the same clothes, every day, even if they are dirty, and get ticked off if told they can't wear that shirt again until it is washed. All kids harp over and over again about allowance, video games they want, going to the library...whatever it is that is on their mind at that very moment. All kids throw fits when they don't get their way. All kids need help getting dressed, even when they can actually accomplish this task themselves. All kids have unreasonable fears and cannot take out the garbage at night or get up to go to the bathroom in a darkened room. But the point here, is mine do it more. That's what Asperger's and High-Functioning Autism looks like. I didn't want bragging rights. I am not trying to one-up anyone else. I am simply trying to live with kids who have to live with "mild-mannered Autism." Anyone who uses this term clearly has never lived with nor experienced autism.

I don't play the Label Game. I don't have Munchausen Syndrome by Proxy. I don't find my identity in being Supermom or having kids with "special needs." We sought a diagnosis for my son simply because he wasn't functioning in school very well, and we started seeing some signs at home. I knew something was wrong. I wrote a letter to the school, asking for an evaluation. The district did their tests, gave us their result, and then we obtained our own private evaluation. We ended up with a diagnosis and an IEP. With some interventions and by educating myself, we found accommodations that worked for him. I learned how to talk to him, how to calm him down, how to provide a sensory diet and just learn to live with the quirkiness that can be autism. At some point, I started rolling with the flow, and it became, if not easy, something familiar. And, it was okay. I thought that was the end. Autism had touched us, but it was a tentative touch.

Cut to 2006. Those who read will know this already, but we had a house fire, and lost everything. The house was standing, but they gutted it, and rebuilt everything but the bones. Every item except for the clothes on our backs was destroyed. Of course, we all took it hard, but my then-six year old was particularly devastated. It was and is, the only home she'd ever known. On a good day, she keeps most of her emotions to herself. This caused her to retreat inside herself. She would build little worlds with her My Little Ponies, and Littlest Pet Shop, barricade herself inside the toy houses. Walls of toys would sit between her and the rest of us; she was shutting us out. We sought counseling, and of course, the question we all had was, is it the trauma or is she also on the Spectrum as well? After what we thought was a failed bout of counseling, it proved to be the catalyst and we decided to have our little JBean evaluated for autism.

I went back and forth, second-guessing myself. Autism is a spectrum, and there is a saying, "If you've seen one kid with Asperger's, you've seen one kid with Asperger's. My son and daughter are as different as night and day. I would look at her and think, "No way she is on the Spectrum...she isn't like JBear." I waffled and tested her myself, and I wanted to be wrong. She was diagnosed with autistic disorder two years ago.

So when the woman behind me gave me that look, I just smiled at her and said, "Kids!" About that time, the cashier finished ringing up my groceries. There is a time for education, and there is a time for cutting your losses and just getting the heck out of Dodge. So I'm sorry to the autism advocates,just know some days I fight the good fight. But today I pulled myself up by my bootstraps. This wasn't the day to try and educate the public. This was a day to take my children home with me, cuddle them close and read books while munching cookies. This was a day to just be. I swallowed the lump in my throat that came from unshed tears. Yes, sometimes I grieve for what they don't have. And maybe that's not what Supermom would do. As I rolled out to the car, I realized the lump in my throat wasn't just grief. It was something else, as well. It was a fierce, protective love, and a knowing that I am exactly where I am supposed to be. And I don't think that Supermom could have it any better.

T, who just does what she can do some days

Tina Cruz is a writer, wife and mother of three children, two who have high-functioning autism, one who has Asperger's tendencies. She advocates for autism awareness and education, as well as acceptance. She views autism as a growth process and the opportunity to connect parents for support as a privilege. She is the Special Needs Editor at typeamom LA Special Needs Kids Examiner at and her own site, Send Chocolate reflects her passion for her children and autism. t Autism Sucks is her brainchild.
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  1. I completely and totally agree. And sometimes, we're just too tired to explain or teach strangers. I think the only person who can judge how I do my job is the face looking back at me in the mirror each night. And if she's satisfied that we've done our job to the best of our abilities, it's good enough for me. =]


  2. I hate grocery shopping,especially with kids, but I had procrastinated too long and the bread had molded and we were out of milk.

    Wow no food issues here with your kids? Lucky you.

  3. I am at the point now where, most of the time, I only speak up if it's for my son's benefit. I don't really care anymore what they think of me, but I do want to make things as smooth as possible for him.

    Thanks for this!

  4. Spot: that's exactly how I feel but there are days where it just weighs me down, ya know?

    Roger: my son is GFCF and has been for 5 years. Everyone else here eats everything. He is really good about it, because he knows he feels better when he is diet-compliant.

    Trish: that's my biggest problem, I want people to like my son, so I worry how people see him. I feel that way with the other two as well, but with my son, that feeling is stronger. Maybe he just needs more help because he is so social and gregarious, less reserved. He doesn't know when to rein in his enthusiasm sometimes.


  5. When my son was first diagnosed, I felt like I had to explain it to everyone. We just had a new OT come over to the house tonight and she took one look at the house, saw my boy have a meltdown and then took on a look of total terror.

    In the past I would have tried to explain or rationalize. Tonight I just laughed. You gotta be tough to make in in these here parts.

  6. WOW! Reading what your wrote here is like you were writing our story. Like you had totally observed our last shopping trip. Thank You for so eloquently putting it into words.

  7. I really loved how you explained it all. Sometimes I just get to tired trying to explain what high functioning autism is. Sometimes I get frustrated with the comments.

  8. Things could be a lot easier. It's called CHELATION. Try it, you'll like it.

  9. When I've been an observer and the person involved is a friend I think "why don't you just tell them..." (e.g. that you're nearly blind as one of my friends is). But if it was ME in the situation I don't think I'd bloody say anything either!

  10. Can I just say. . . Oh, the crap we put up with! And you have to just put up with it because we can't be Xena every day. I also advocate in my community. My son however is low functioning and non-verbal.

    Parents with autistic children get it from all sides. If you aren't explaining autism every day at every opportunity, bad mommy! If you aren't trying every experimental treatment out there, bad mommy. (By the way, chelation doesn't work for every child, so that was obnoxious anon.)

    Sometimes, I just want to look at Darrel and say, "You know what? It could be worse. I could be living without chuckles and funnies and cuddles, just as I'd be without getting bruises from fits and being stared at.

    The bottom line is we aren't ultimately responsible for others ignorance. There are all kinds of places for people to go and pull their heads out of their respective behinds. Some days we're just moms!

  11. This is my story, right down to cooking different meals. My man child is 15 1/2 now still talks non stop about his special interest which is video games also. He hates he can't eat certain things but knows his body can't handle it. He goes to a regular High School is in regular classes because these kids are SMART!
    He just needs modifications. He is even learning to drive. Not sure I am ready for that.
    He doesn't want to be different so he asks me to not talk to others about it. It's his choice.
    He's a great kid with a great personality, and someday will be a comedian.

    Anonymous: we don't need chelation if we watch what our kids eat. Go beat another horse.

    Your doing a great job! Soldier on.

  12. AGSoccer mom: what diet extracts all the mercury poisoning your son's brain?

    I'll never understand WHY mothers let their children be ill on the inside--it's beyond me.

  13. I love you. You just wrote about how I am feeling inside.

    I have 5 kids. 2 on the spectrum. 3 with Sensory Integration Disorder.

    I feel like a Warrior daily having to fight for my kids.

    Its so tiring.

    Thanks for the reminders.

  14. I love this post can i post a link to it on my blog?


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