Free Advice

I want one of those shirts that say, "Parenting advice not welcome unless you too have a child with autism." No, actually, I want a neon sign! I am fed-up with the self-proclaimed experts who have endless streams of advice about my child. One mother of three, jumps on my case about not getting my child out enough. She knows a child with autism who goes out every day. Out, in this case meaning to crowded places like malls and parades and the local pool.

It turns out, the child she "knows" (who is a teenagaer, NOT a two year old)goes to the donut shop with his mother every day. The child comes in, orders his donut and leaves. Sounds to me it might be some sort of social therapy.This same helpful mother also claims that if my child was surrounded by children every day, he would "get used to it." Right. The children she speaks of are her three boys. They are cute kids but they fight violently with one anoher constantly. I'm talking rolling on the floor all out brawls! They do not have autism. They are just underdisciplined. They climb on tables (yes the dining room table too), they yell at their mother and they have even slapped her.

This woman knows my plight. I am a 47 year old adoptive mother of an autistic child. My 57 year old husband has severe COPD and is beginning to exhibit signs of eary alzheimers. I am in the house 24/7 x 365. I go out to take my child to his doctor or to group. I also go food shopping. Where ever I go, my child comes with me. So, he does get out. Other than that I am at home. I get no 5 minute break other than when both take naps. I have lost all my friends. Who wants to be with someone so boring? So, any way, my husband recently started having some serious issues with his COPD. This wonderful woman offered to babysit so I could go to the hospital with him. Didn't she show up with her three children and a friend. Well, needles to say, my husband again had to go alone.

My body feels like it has been put through a ringer. I am tired and so stressed out. My patience are wearing very thin. I am telling people I love to F off! Funny thing, people still come to me with their problems. I used to care. Now, I am too burnt out. I cannot get respite, I can't afford what sitters charge. This is it for me for a long time to come. I just hope that when my husband passes, I will have found some way to be there for him. That is, if the aloneness of this whole situation doesn't kill me first.

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 Examiner.com and her own site, Send Chocolate reflects her passion for her children and autism. t Autism Sucks is her brainchild.

Technorati:
Asperger's,
high-functioning-autism,
motherhood

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What's it like to have a "normal" child?

I have no idea.

By the word normal, I mean typical. Regular. What you expect to get when you get a kid. The word most people use anyway, whether or not it's PC these days or not...

I'll go ahead and say it: My kids are not normal. I can be OK with that to a point. There are a lot of people that are not normal. I sure don't mean to step on any toes here, so please don't take offense. I am in no way trying to insult anyone or anyone else's kids. But my sweet kids, they are not normal.

I have three children. E (boy) is 11, L (boy) is 6 and K (girl) is almost 2. E has Asperger's ADHD and OCD, L has high functioning Autism and K is speech impaired, very delayed in all areas and though not diagnosed yet, she stims and requires a lot of special accommodating, just like her brothers.

I suppose people feel sorry for me and my husband, but I don't want anyone to. I just would love for people to be more educated about this messed up world of Autism. How there are so many degrees, variations, exceptions, labels, theories, treatment options and it's confusing. It's not just that "your kids are delayed, they act a little strange, they'll outgrow it - hopefully". Not even close, thank you very much.

My kids look completely normal and sometimes you can look at them and would never know there is anything different about them. At first. But E has no social skills and flaps his hands against his legs and in his lap very loudly. He repeats things he heard over and over (yeah, like Rainman). L gets overwhelmed, sometimes freaks out and clamps his hands over his ears and will not take them off. He babbles like a baby in some little babble language he made up and can only put together a few words at times. K still eats baby food from a jar and still drinks from a bottle because she can't tolerate much else or she gags and throws up. She screams and goes ballistic if we go anywhere where there are too many people or there is too much noise.

The two older ones still have toilet issues and need pull-ups sometimes. They ride the special bus. They're in special ed classes. They have almost no awareness of how other kids their age behave, even when they are around them. They get upset and throw screaming temper tantrums if something we see as trivial upsets them. They don't get concepts other kids much younger than them seem to understand. We don't go to movies, the zoo, museums, the beach, the library, Chuck E Cheese,anyone's home or any other place that would be certain disaster should I be brave enough to try to take just one of them there. Too much light, noise, people, excitement, activity, etc. Yes, my kids have had complete meltdowns in public. The first rule that I learned the hard way is: don't make eye contact! When my kid starts up in public and it's getting ugly, I don't make eye contact with anyone! Focus on the child and deal with it accordingly. Yes, people look and sometimes they comment. So? I deal with my kid, not the ignorant person that isn't minding their business.

This is not even all of it. See, this Autism thing, way more than any parent bargains for..

You can't just give kids like this more discipline, or expect them to suck it up and act normal, or try to distract them with a toy or video or something. This is just who my kids are and it's all I know. And as bad as this sounds, please know that my kids are the sweetest, most beautiful babies to me. They are capable of loving us, and each other. They have strengths, skills, and something to offer. They are special and unique. And sometimes, they surprise when they do or say something typical.

I do make my kids behave, apologize when they have done something they should not have, and I am teaching them manners. I will not let Autism be an excuse for my kids to get away with doing anything that would be wrong or cause harm to others..

It's hard for me to relate to parents of typical kids. I will never know what it's like to have a normal child. And I don't know what it is that caused all of mine to have this. And it's not something I can really make anyone understand if they are not going through it themselves.

I hope this blog can help anyone that would like to understand more, either for themselves because they have a child with Autism, or as someone that wants to know more because they don't.

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Autism and Homeschooling: Why?

...this is a repost from my personal blog...but it seemed relevant here.

Over the years, I have witnessed an exodus of sorts when it comes to the education of friends' children. More and more parents of children with autism and Asperger's Syndrome are choosing to homeschool. We are the well-kept dirty little secret that your school district doesn't want you to know: often our children can be better served at home than in the school system.

I would have never said such six years ago. I was a died-in-the-wool PTA, room mom, get into the system and change it, agent. But one horrific year with my son's classroom (through no fault of the teacher) and I became a true believer. I figured I couldn't do a worse job than the school, and I might even be an improvement. Besides, my son hated school, to the point I was literally dragging him there. Something had to give.

And now? I homeschool all three of my children, and this is our 5th year. Two have been diagnosed with high functioning autism, they are 7 and 10 respectively. My oldest is going on 15, and though she has never been diagnosed, she has many of the deficits of Asperger's, and is also academically gifted. Her father is a computer engineer, and is most likely also on the Spectrum. (he was never tested, but off the record, our psychologist said so) So, you do the math...

In any case, bringing my children home has worked out wonderfully for us. Homeschooling has allowed me to tailor each program according to what works for each child. My 14 yr old, who went to school for 6 years benefits from a very academic program. She enjoys the structure and it works. My middle guy, at 10, is the one I walk the line with. He isn't unschooled, but his academic structure would, at first glance, seem more relaxed. It is still very scheduled, however. But we benefit from frequent breaks, sensory diet and multisensory approaches. I can choose activities that he enjoys, and we keep work periods short and focused. He can take a break for pogo stick or OT work, as needed. My littlest one, at 7, is the one that learns best through games and Mom Time. She needs one-on-one (as does my son) that she wouldn't get in a classroom. She often has to be taught a concept repeatedly before she gets it.

My middle guy is also dyslexic, which makes it interesting, and I am thinking my littlest may be, as well.

As for socialization...which is a joke anyway... but still. We have found with regular play dates, activities and park outings, my children do just fine. There is more time for preferred subjects (my 14 year old taught herself to both play the piano and knit, because she had more time than if she was traditionally schooled.) We have more time (and funds) for field trips and activities. While other kids are sitting in a classroom, mine are out learning in the world.

There is a park day we attend and have for years. The attendance is large, with many different ages and multiple abilities. There are several kids from all ages that are on the spectrum in varying degrees. It is a very welcoming group. Truly, it was the best decision we ever made for our family.

When my son ended 1st grade, he barely read, was behind in math, his writing was still reversals (though he is left handed, so that made it worse). I would literally dress him like a doll and drag him, kicking, to the public school. He would sit under the teacher's desk, or make games. His aide was useless, only serving to keep him from eloping from the classroom. His work was all sent home. I was already homeschooling, and my son was in the school system!

He is now in the 5th grade, and reads at grade level. His math is also at grade level, or just below. He is above in Science, History, Geography. His writing and penmanship has improved 10 fold. and most importantly, he loves to learn. I have found that learning is a broad term for what we do every day. Mythbusters is learning and exploring Science. Going to the Arboretum is a chance to discuss the environment and botany, as well as the food chain. In fact, every activity has inherent learning in it...you just have to find it.

The most important thing to remember about homeschooling? It isn't something you do. It's something you live. And there really is no wrong way to do it. You can, and your child can... and if it doesn't work, keep tweaking. Also, what your state standards may find important, you may find doesn't mesh with your family. That's ok. I have found that as we go, my kids pick up information I didn't formally teach. And the one thing I want to equip my children with? The ability to find information.

The freedom I have found, as well as the free time away from IEPs, discipline meetings and just general headache is now energy I can pour into helping my son love learning. Less time is spent arguing over what the schools think he needs and more time is given to what he actually needs. We have personalized his goals, and we make sure he reaches them. There is no fighting with autism experts who insist my son is meeting goals that are either too broad, too easy or just plain wrong. I am in control. And my children are the better for it.

That, to me, is success.

T. Tina Cruz is a writer, wife and mother of three children. The two youngest children have high-functioning autism and the oldest has undiagnosed Asperger's Syndrome. 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 editor of the Special Needs channel at Typeamom. Her personal blog can be found at Send Chocolate.

Somewhere...

Somewhere, there is a mom who has a child with Autism. This mom could be your cousin or niece, a neighbor, lady at church or in front of you at the grocery store. You might run in to her at a soccer game or at a new mom's play group in the neighborhood. Her child may be able to speak and read and write and look perfectly normal most of the time. But there may be times when you notice the quirks. You may notice that the child doesn't engage and is always running off, covering her ears when a garbage truck belches by then throws a tantrum like you have never seen before. You may wonder if the mom knows that her child has Autism. You may want to reach out to her or her child. Then do. Ask her questions. Accept her and her child just the way they are. She is just trying to navigate life like you are and she needs friends who accept her. Be patient. God has blessed her with her child. God will bless you when you reach out to them. Learn more about the Life of a Juggernaut... It's all about taking two steps forward and ten steps backward, but moving onward and upward one day at a time. Read more about the legacy of the Crazy Jugs, please visit today's posting >>>

Don't Call Them That!

When is a Word not just a Word?

Have you said it? In a fit of pique? Or frustration? In just normal conversation? Have you referred to your children with the "A Word?" Does it define who they are at that particular moment? Dan Olmsted, over at Age of Autism has been ruffling feathers because he believes we need to abolish the use of the word, "autistic." He is on the right track.

I have two children, as you know. They have autism. They are not autistic. Why do I differentiate it in my head? Because autism is part of who they are. It does not define them. They are more than just their disorder or disability or whatever we are calling it this week. I prefer to just call them my children. Who have autism. Though I am not crazy about the puzzle analogy, it fits here. Not because autism is a puzzle, but because autism is a piece of the puzzle.

Dan believes that the word "autistic" is similar in connotation to "retard." He's not far off. It is akin to talking about the "Short Bus", (a slang term for the bus that transports special education students by those who wish to disparage it). It is a negative term, guffawed over lunch by kids who don't understand differences.

Autistic is a very limiting word. It defines the person's limitations. Sometimes, the reputation of a word is enough...it doesn't matter what the actual definition is. No one wants to be called ignorant. And yet, the definition in itself is not offensive. Autistic simply means "of or pertaining to autism." But the gestalt of the word means so much more. Words can be used to educate, but is that necessary all of the time? Sometimes, is it ok to just be?

I have chosen not to refer to my children as autistic. They may change that at any point. It is completely up to them how they will refer to themselves. I have talked to my son about this, and, with no coaching from me, he laughed and said exactly what I had said,

"Why would I want to be known by only one word? I am so much more than autistic!"

(emphasis was his)

I understand there is a movement in the adult world of autism to embrace the word. Take it back, if you will. It seems to me like the N word. Young black men reclaimed the word, and the power that went with it, as their own. But it's a word that is acceptable within the context of their community. (One could argue about whether or not it is an appropriate word for any group to use...) Regardless, it doesn't cross color lines.

That is how I see Autistic. It is a charged word. An in-your-face word. A "we're here, get used to it", word. And I can't make my children part of a political movement. It is time for them to just be children. Without limits.

T, who imagines I've started something

How about you? What do you think about autism vs. autistic?

Technorati: autism, Aspergers, labels

photo by Carey Tilden T. is a writer, wife and mother of three children, two who have high-functioning autism. 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, a contributing writer at The OC Register and her own site, Send Chocolate reflects her passion for her children and autism.

Autism, Clay, and a Crap-Load of Metaphor on Parenting

I've noticed a lot of bloggers lately have been writing odes to their children as it seems that many of them have summer birthdays. Their words have been very sweet and have really spoken to me. In a world in which so many children are unwanted, abused and neglected it's always nice to see that there are many that are not only loved, but genuinely cherished. But I have to be honest....reading such pieces is always a little bittersweet for me. I can't help but notice and think about what they have and what I don't. I try not to dwell too much on what my child can't do and what his autism takes from him, but sometimes to avoid those things is to live in true denial. I have been in the position many times to speak to parents of children recently diagnosed with autism. I have also been in the position to offer support and counsel to parents who have coped with the disorder for some time. I am really in no way qualified to do either, but something about my listening skills and a background in the human services has lead me to these jobs. In those situations, many a person has heard me use the old "children are like clay" story. Go with me here.... When a new baby is born, he is a lump of clean and perfect, unused clay. As the potter or parent, you can turn that lovely clay into whatever you so choose. It could become something as lovely as a glazed vase or something as dirty and unremarkable as an ash tray. As parent/potter YOU will choose how to fashion this priceless clay. When you have a child with a disability, you also get clay. It often even looks as good as "typical" or "normal" clay. But when you start shaping it, you realize as its parent/potter that it's not so easy to spin. It requires much more work and a much more delicate hand. You will become frustrated with the clay and sometimes even get mad that you can't work it as well as the other potters. You will even wonder sometimes if your clay can be fashioned into a vase or an ash tray or will simply remain.....clay. You will walk out of your studio and see the other potters. They are all either thrilled with or disappointed by their clay.....it really all depends on the day. Sometimes they will get mad at their clay when it's really them that aren't treating it and spinning it right. And sometimes they will get annoyed when their clay does something really silly like falling off the wheel. They'll berate the clay and make a huge deal out of a simple accident that can be easily remedied. And what of us potters of the "other" clay? The clay that won't spin? Won't seal? Won't slip? Has dents, pocks, discoloration, pockets, etc? What do we do with our non-performing clay? Well, we'll get mad at it. Cry over it. Keep spinning it. Keep telling it we know it can. Lose patience with it. Let another more experienced potter give it a try. Cry again. Have I beaten this clay metaphor to death? I used to like to spin.....sue me. My dedicated readers know that I don't talk a lot about Little Boy's autism. And I also don't try to use this blog for complaining, ranting or bellyaching. But I just had to use this chance to say something to all of you "normal" potters out there: take this clay you were given, and dammit, spin it right! You will never know how blessed/lucky/fortunate you were to have been given it. And when you see us other potters out there.....the ones with the "challenged" clay. Don't give us your sympathy. And don't give us your criticisms of advice. Just look at us and know that we're potters too. And like you, we're just trying to make a masterpiece. I am The Chick.....I'm a SAHM living Down South where I write about my life.....marriage, friends, music, activism, fads, oh.....and the life of a mom with a 6 year-old boy with autism. Stop by my farm for more!

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

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