Tuesday, July 1, 2008

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 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 in October.

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


  1. I'm new to your blog... but as a parent with one on/one off the spectrum, it sounds like your grocery store adventures are about as typical as can be! some days the NT kids keep it together; other days they whine like hell... as you said, "Kids!"

    To be quite honest, I have NEVER attempted to educate the general public about autism in a store, etc. After all, they (and we) are in the grocery store/Target/library to do our business whatever it may be; so I figure my job is to get our business done and help my kids figure out how to manage in that environment. Like you, I don't need "poor you" commiseration - and I know that every kid will be different, so it's hard to provide "useful" autism info to the grocery store clerk...

    Thanks for your thoughts!

    Lisa (www.autism.about.com)

  2. I fell in love with Faith awhile ago, I think I just fell in love with you too!

    I don't like shopping with Josh. Sometimes its fine, sometimes its NOT so fine.

    A few trips ago the checker said "Looks like someone needs a little bit of discipline". As I walked away I turned around and mouthed to him "looks like someone needs a cactus shoved up his ass".

    Yeah, I hate shopping.

  3. I think you just summed up my world!
    Hi! I'm Becky's sister in-law "Rainmom". I'm really struggling with my almost 10 year old son who was diagnosed PDD at age 4. I've always suspected Aspie and am now 98% sure that should be his diagnosis. He is going to be re-evaluated. I am working on getting his IEP back. I am looking for speech therapy, OT, and intensive social skills therapy.

    It's a tough climb on my roller coaster, but it's blogs like yours that remind me that without my roller coaster, where would I be? There's no where else I'd rather be. This is where I am supposed to be. But it took a long time for me to figure that out!

    I am a big advocate (I am the resource committee chair for the Kansas City Autism speaks walk)and just joined KCAL (kansas coalition for autism legislation). But you just nailed it. I can't always be an advocate. I am a mom and that's my job. That's my blessing.

    OK - done babbling. Thanks to Becky for sending this to me as I just had a suck ass time at the grocery store today!

  4. Hi, basically, you just summed up my day- right down to talking to the person behind us in line about Indiana Jones and the lego game.

    I just found a book "Parenting a child with Asperger Syndrome" by Brenda Boyd. I am still relatively new to the diagnosis and the book is helping a lot. Not really telling me stuff that is 100% new to me but it offers some tips that I hadn't thought of and most of all it explains stuff in a way that I can pass on to others- like my semi serious boyfriend of 2 years who thinks ADD (that he has) and Apergers can be treated the same way. OR the teachers that think that they get it but don't.

    I am so going to buy this book for every teacher and aide Joey has next year.

    I love my boys so much (one on the spectrum and one is not) and I just want to hug them, teach them, and tell them to ignore anyone that makes us feel like crap. I second shoving a cactus up the butt of random people, no one knows my son better than I do and while he needs to learn some things, he has learned so much already...and he could kick their butt in dinosaur facts...

    yep, I ramble.


  5. Thank you all for the comments! If anyone wants to author a post, let me know, I will be glad to add you as an author.

    lisa: I usually ramble at my other blog, Send Chocolate.. much of the material there is just like this. Check it out if you get a chance.

    becky: I am seriously laughing. I wouldn't have had the guts to say that, but I would have thought it, I am sure.

    rainmom: I am thrilled to meet you. Please check out my other blog, Send Chocolate. The link is above...that's where I usually write.

  6. I just found your blog through FriendFeed and Twitter. My 11yo son is an Aspie (also has Tourette Syndrome). We started homeschooling this past year due to less than ideal circumstances. I also have a NT daughter, although I'd guess she leans toward OCD. Thank you for sharing such a raw moment in the parenting of our special kids. I wish there was some way to do a mind dump with strangers sometimes--impart what we know without having to take the time to explain the journey we've been on to learn it.

  7. I can soooo relate to this!! I don't try to educate every person I come into contact with either (who has the energy for that and it's not always an appropriate time - sometimes we just need to get our groceries and go!) but if I notice weird looks I try to show through my actions that this is "normal" for us. In other words, nothing to see here, folks, move along! lol

    I've had to retrieve my sons from those kind of conversations too, I remember one in particular where Dominik (super friendly) went up to another family eating lunch at Target to say hello and then started into his monologue introducing his entire family (even the ones who weren't there, it was just me and my twins), telling them everyone's birthday, age, gender (I'm a boy, my brother is a boy too), where they go to school, what grade they're in, what they like about school... Dawson joined him and started in with his own monologue, talking over him (they're still learning that no one can hear either of them if they talk at the same time!). I finally managed to gently guide the boys back to our table so they could eat :).

    I can totally relate to the part about not wanting to believe your younger child was on the spectrum too - I felt the same way when we started noticing signs in my youngest. Surely he couldn't have autism because he was so different from his brothers... but after a while it was painfully obvious and an evaluation confirmed it.

    What's kind of funny is that with my older boys being relatively high functioning (and having come a long way since they were dx'd at age 3) they ask a lot of questions about Wyatt - why doesn't he talk much, why does he ignore them when they talk to him, etc. I told them to keep talking to him, because he can still hear them even if he doesn't show it, and he knows they love him. They're really sweet, they get just as excited as I do when he says actual words :).

    Guess I've rambled on enough - just wanted to say thanks and you're not alone!

  8. My standard response anymore is "Two has got nothing on FOUR" then I get some sympathy. Granted it probably isn't the best way to deal, but if I yelled "give me a break, he has AUTISM" they'd probably ban me from coming back. Good job on keeping tuned in and keeping it together. I think we need to start a grocery/mass market chain with DAYCARE inside. But only for special needs kids. Because us moms with those kids really do need a chance to shop in peace without someone lecturing us on WHICH apples to buy and what color pants are okay!

  9. Fantastic. It is as if you are my voice.

    This blog is amazing, wish I'd found it sooner!


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