Changing your child for the world?

On Autism Daddy's blog yesterday was an interesting post that has created some hub-bub in our autism community. It very much reminded me of a post last year from a blogger who said if a pill to cure autism was invented, she would use it to cure her child. I wrote a post responding to that concept here. Autism Daddy's post is of a similar thread, but different fabric: He rages against the quote "I'd change the world for my child, but not my child for the world."

To be fair, our experiences with autism are different. I cannot imagine with much accuracy what its like to have child with severe autism. My son is high-functioning and (very) verbal... well verbose would be a better descriptor. haha. Trying to put myself in another autism parent's shoes is hard and I know trying to fill those shoes with my own feet of experience would be impossible.

What I can say with a fair amount of accuracy is that we've all had those moments. We have all wondered what life would be like with a neuro-typical child. We all have moments when the grass is much greener on the other side of the parenting fence. That simply is human nature.

Yet, here we all are in our difficult parenting circumstances with our kids (and maybe even ourselves) on the spectrum. He we are dealing with problems we never, ever imagined, that parents of neuro-typical kids grow out of after age four if they ever experience them and basically doing the best we can with what we have. He we are trying to raise children with autism. When that pregnancy test came back positive, I never envisioned this life. (Keep this bold statement, and all others, in your head for future reference)

I have this friend... well, sorta friend. I knew her before she was mother. Being a mother was really what she longed to be above all else. She had her child's entire future mapped out, including his personality, his likes, dislikes, his interests, his friends, his favorite color and so on. She divide up traits from her partner and self, along with all her family members applying them to her future child. In her head she envisioned who her child was going to be. She romanticized her unborn child when she pregnant, which we all do to a degree, but she was extreme.

I absolutely could not relate to her thinking at all. I knew that children are not who we want them to be, but who they are. Maya Angelou said once (and Oprah repeated it constantly) "When people show you who they are believe them". That was a lesson I learned a long time ago. When I became a parent, I lived those words. I did not want my son growing up thinking he cannot fulfill my dream for him. My dream for him is simply to be happy and to be fulfilled. How he chooses to do that is up to him.

I'm going to skip debate portion of response. Read my old post and you'll see that my feelings differ from Daddy Autism and the supporting reasons why. I don't feel the need to restate those things. What I intend is to leave you, my dear readers, with some fat to chew on. It's not my goal to change ideas, but rather offer another perspective...  by deconstructing Daddy Autism's words, delving into them and answering (most of) his questions.


Your kid sleeps less than 2 hours a night because of his autism. You wouldn't want to change that?!  

Yes, I would and I do. Sleep is an issue for autistic kids and it sucks royally as a parent because it means you don't get to sleep. The truth is is that a child with autism may not require as much sleep as other children, but both parent and child will survive it, cope with it and hopefully find a way to make sleep work. I write this on a day my son woke up before 3 am. Dude, I'm tired, but I've got a plan. 

Your kid doesn't talk because of his autism. You wouldn't want to change that?!

Chances are your child does talk, you just don't speak their language. Self-expression is an integral part of humanity, one which you cannot separate from a being unless they are brain dead. Does your child communicate like your neighbor's kid? No. Does your child have to work one million times harder to be understood? Yes. Does that devalue their self-expression? Absolutely not. If anything, it makes it carry a million times the weight of a nuero-typical person.

Would a parent give anything to make that self expression easier? Of course, but that doesn't necessarily mean changing the language. After all, I may not be able to speak Russian, but that doesn't mean it's a language that doesn't count. Growing up in a diverse community where English was a second language for most family friends, I noticed that many people assume not communicating in English means a person is not intelligent or less of a person. I've seen it with adults speaking to children with Selective Mutism. Last night, to take the point further, I watched The Kings Speech. King George VI was perceived as less than because he stuttered. And its been a stereo-type fought against in the autism community. Our society defines the inability to carry on a fluid conversation as inhuman, but if anyone knows it is not the truth, it should be us parents. As much as we teach recognizing non-verbal communication and it's importance to our children, we should be able to see and practice it ourselves.

Your kid bangs his head against the window because of the big A.  You wouldn't want to change that?!  

Do I want my son to hit himself when he's upset? Nope. Do I want a child to bang their head against the wall? Not at all. Do I want to change it? Yes. That is a work in progress. In most cases its a reaction to frustration (like not being understood when trying to communicate to another human being) or sensory overload. Sometimes it can just be a routine, since they develop so easily. But there are other coping skills to teach, just like you'd have to teach a neuro-typical child who chews their fingernails or sucks their thumb when under stress a more acceptable, healthy coping skill.

Your kid smears his feces against the walls.  You wouldn't want to change that?!  

Hey! It's art! I know, I know... but since this is "Pooping Red Guy" and poop is often the topic of conversation in my house. My son doesn't do that-- well, once when he was an infant he woke up early and used his mother's sleeping body as his canvas-- but my husband has talked about it in general when he did therapy at the elementary school. It's a theraputic issue. Yes, work on changing that. I'd definitely change that. Working on changing it until... (as Dr. Phil says. Meaning until it changes.) 
 

Your kid recites the same phrase from Dora The Explorer all day long.  You wouldn't want to change that?!

This one made me chuckle just a bit, not because I'm making light of the issue, but because we live in a home where repeated phrases from our favorite shows abound. It's not always the same phrase, but one from a mental library of about twenty. The same phrase can stick for weeks. We are an aspie household (and thanks to brain damage, its more apparent now). It's something we do when traditional language doesn't fit a situation. 

For my son particularly, his repetitive feature is knocking. If you watch The Big Bang Theory, you know Sheldon always knocks three times on Penny's door. My son does it on his desk. Three times, always the same rhythm. I know this means he's excited or anxious. It's self-expression for him and it helps me understand him better.

No, I don't want to change that. It's part of who we are. It's part of the way we communicate with each other. The more we recognize what we are expressing to each other the more enriching our family dynamic becomes.

Current Phrase: Mongolians, you tear down my city wall for last time! (but soon it may be Swiper, no swiping!)

Your kid is so stuck to his routine that any teeny tiny diversion and he has a meltdown.

That I do want to change because transitions and diversions are a part of life. There are a ton of strategies for dealing with this. Since I know that many, many kids with autism grow up to manage transitions in their own way, I have faith with the proper guidance (aka parenting), mine will, too.

Your kid will only eat chicken mcnuggets from McDonald's, nothing else will do.  You wouldn't want to change that?!  

Of course I would try. Yet, if Temple Grandin can survive on green J-ello and yogurt... eating chicken nuggets forever doesn't seem like end of the world. 

Now admitting that you HATE your kid's autism doesn't mean you don't LOVE your kid.  I LOVE my son.  But I HATE the disorder that he's been stricken with that will make him dependent on mom & dad for the rest of our lives and beyond.  

Warning: This part got up my nose and is a little more ranty than I wanted. 

I grew up hearing that my family hated that I was fat but loved me. You know what message I took away from that? That *I* was not good enough. That they hated who *I* was. As much as you separate your child from your child's offending condition, chances are your child does not. As a child that was just different, I'll be the first to tell you that my childhood mind did not understand that separation like my adult mind does now. How we approach our children's problem matters. What we say about it matters. How we express the negative bits matter-- regardless of the method of expression. When a kid gets the message that they are inherently flawed it changes who they are. Autistic children are not flawed as much as they work under a different set of mental parameters than neuro-typical people. They have different issues-- We ALL have issues.

I'll say it again: We all have issues. We all have things to overcome. We are all a work in progress and will be until the day we die. Sending the message to your kid that you wished they weren't born the way they were is just not cool. And since we are product of our experiences and flaws (which is an over-simplification, but I won't wax philosophical here cause this post is long enough) you could not erase your child's autism and keep their personality. It is by working with and through our defects and issues that we become the best person we can be and make a difference in the world around us. Autism does not exclude you from the human experience nor the human condition.


Do parents of kids with cancer or diabetes say that?  No, of course not those are life threatening diseases.  Do parents of blind or deaf kids say that?  I'd be curious.  Do kids with down syndrome or cerebral palsy say that?  I don't know, but I doubt it.  

In every movie, show, documentary or other forms of art about children with chronic illness there is always a moment where the child blame his or herself for their parents unhappiness with the condition. The message is *I* came into this world and ruined my parents life. They do not say *cancer* caused my parents divorce. They do not say *diabetes* made my mom cry today. They do not say my dad hates *my disability*. I'll give you a moment to digest that paragraph.

Get it? Good.

But dude, really? Cancers that children get are more often than not FATAL. (As a mom whose buried children, I'll remind you that sucks royally to hold your dead child in your arms and quickly turns another other living child problem into a blessing.) Autism is not fatal. I was taken aback by that statement. Just wow. I'm gonna give a parent of a dying child a little more leeway to be angry than a parent whose child has autism. Why? Because there's more time to deal with autism.

My niece with Cerebral Palsy went to Oxford last year as a Rhodes Scholar. She wasn't supposed to be able to speak. She wasn't supposed to be so intelligent. Her mom (who has cancer, by the way) and her dad decided to focus on her strengths and help her cope with her weaknesses. They had those its-so-not-fair-moments, too. I've had those moments. BUT, and a big but... they don't get projected and they are fleeting because... LIFE. Because he's alive. Because life is too short to grab onto the negatives with both hands. 

I don't say that I wish my child was different because I know he is a sum of his parts. (I do say I wish I could help ease his suffering during his symptomatic moments. My husband said that out-loud today and we say it directly to our boy all the time.) I don't want to devalue him. I don't want him to ever think he is not the absolute most precious thing to me in this world. He is the best thing I've ever made and being his mother is the best gift life has given me. Seeing the world through his eyes, without molding the world for him in my vision, is the most profound experience... there are no more words to finish that thought... it just is.

Changing the world for your child means all of the above in this post. It means accepting your child for they show you they are, it means recognizing the joy and fulfillment they get from lining up toys in a neat row. It means helping them rise to their challenges so they can be the best of who they are. It means parenting not the way you wanted to parent but parenting the way your child needs you to. It means understanding the world is wearing blinders or stuck in its own rigidity because the impact your child has on it and the value they add to it is goes unnoticed.

That's not just autism, but all children would actually apply to the above, huh?

Daddy Autism: Your child was put on this Earth to help you learn these lessons. You were put on this Earth to help your child grow wide in a narrow world.

If you take nothing away from this post, please absorb this list based on the bold-ed points:

•  We cannot be in control of our all our circumstances all the time. Life throws curveballs to which we can only react. We do get to control how we react to our circumstances. 
• We cannot dictate or decide what will make others happy and fulfilled. We can only recognize a fulfilled and happy person.
• Through self-expression we are validated by those around us. Verbal communication is only a portion of the self-expression picture. In our culture it is the focal point, but that does not mean we are viewing the picture correctly.
• It is our flaws that make us beautiful.

Sugar and Spice, My Ass: Read It

Sugar and Spice, My Ass: Beheaded Filler: "I have stuff to do today, like cook dinner, vacuum, solve world hunger, cure cancer, play with my kid. Ya know, all that domestic shit. So..."

I don't know many mothers who have the testicular fortitude to stand up proudly and say "my child does some weird, scary stuff". Moms don't brag about the first time their sweet, precious miracle figures out those little baby fingers can undo diapers after making a poo. Not only can they remove said dirty diaper, the sweet, precious miracle can then use that poo as one would finger paint. Very few mothers tell these stories, but I know every child at some in their baby-body-discovery-development plays with poo while you aren't around to stop them.

It's refreshing to see a blog where the author isn't caught in the "my child is so perfect because that's what I'm supposed to think" cycle. Motherhood is hard and children are strange creatures. But when you refer to your child as "demon spawn" people look at you side-ways, no matter how lovingly you mean it. I know. I've done it in public. Sure he looks cute and well-behaved here, but you should be a fly on my wall sometime.

From ages 5 to 7, my son wanted to be "an evil genius" when he grew up. I'm pretty sure he'd be willing to take over a small nation in his early 30s instead of full global domination. Or maybe he'll be up for world domination. Or maybe he'll just be one of those scholars they interview on the History Channel.

The mom blogs where life is wonderful, the moms are all organized and everything is perfect... bleh. And there houses are clean, they didn't take 10 years to finish a baby-book for their first child and have two other children with 2 other finished baby books...and seem all together. And never even secretly say "could Satan have impregnated me?". Double bleh since my child has AS so, normal and perfect simply do not exist in our world. I have pine branches and ply-wood by my front door with the occasional booby-trap set.

I thank God everyday for posts from real moms who tell it like it is. Children are odd bears. Somehow they exactly how to destroy our sanity. Sometimes a child does something that makes you think "whoa". Or simply "WTF".  This is what life is about, not the existential conversations over trendy cups of coffee, but the real moments of life, especially parenthood.

Read it, see it, live it.

And 5 more days until my husband has brain surgery... so I'm too busy to post very much. 
  

Happy Mothers Day

Yesterday, the yard people weeded all my plants. I was sad that not only had the life I'd spent a few weeks caring for bit the dust for no good reason other than a landscaper not understanding the difference between plant and weed, I just don't have the funds the to replace them.

But I'm crafty. I don't let poorness get in my way. I emailed my dad, who always has some sort of plant needing homes. I also asked if I could go round my town to take clipping from desirable plants to make grow my own versions.

My dad replied with this interesting tid-bit about my maternal grandmother:


My mother used to take a rose cutting (a good thick stem) and put it in the ground and put a fruit jar over it.  If she kept the soil moist, the rose would take root and grow.  Forsythia will often root right in a flower vase. If you can bend a branch of a bush down and bury some of the stem in the ground (and keep it watered), the stem will pften take root.  Then you can cut it off and plant it.

I then imagined my grandmother, who instead of fulfilling her dream as an independent, working woman in the respectable female profession of nursing, which would have secured her during the Great Depression, she had to be creative. She had to leave school because she got knocked up on her first date with my grandfather. (Shotgun wedding, of course) I imagine that during the early 30s and prior to WWII, she learned how to grow beautiful plants from nothing (or stealing clippings). My dad inherited her green thumb I guess and her amazing ability to make gardening an affordable pursuit.

My mother sent a response, too, since she shares the email address with my dad:

The plant business I will leave to Dad, but do not take cuttings without asking the owners.

I'm sure my mother has vision of me dressed in all black, mask and all, stealthily roaming our small town with a pair of scissors in one hand and black duffel bag in the other. She's probably calculated the bail money it would take for me to be released from federal prison. She might have already contacted a lawyer about a retainer.

The sad thing is is that in our small locale, my banditry would make the front page.

The good news is that for Mother's Day, my husband bought me three replacement plants. They look a little Charlie Brown Christmas Tree-esque, but I know he got a good price. And seeing them by my computer this morning nearly brought me to tears.

My kid told me "I don't care about Mother's Day" first thing this morning, but only because he's too much like me, and medicated. He needs time to absorb the meds and the morning. He let me have a six hour nap today.

So to all your different sorts of mothers out there, enjoy your day.  
 

Go the F***k to Sleep: A bedtime Story

I think as parents, we have at one time or another, really, really prayed hard our child(ren) would ease gently into the beds and immediately fall fast asleep. There are times when we really need our grown-up-kid-free peace and quiet. There are times we need our children, whom we love dearly with big parental hearts, to go to bed so we can actually unwind or process a mind-blowing day from hell. As parenthood tends to work out, it seems when parents need that sorta time is most often when our child(ren) decide sleep is a furry, kid-eating monster lurking in the shadows of night. Sleep is a demon that can only be slayed by children keeping their eyes open, requesting bathroom visits, drinking 5 gallons of water, eating 20 lbs of food and asking parents for one more story. Sleep also will not eat good boys and girls if they call for their parents every five to ten minutes from the moment those parents leave the kid's line of sight.

For those occurrences in our parental life, we tend to feel a little (or a lot) guilty for wanting the little people we love to leave us alone so that we can be more than "Mommy" or "Daddy" for a couple hours in the evening. You rarely express that true, valid and perfectly normal thought: Please go the eff to sleep, dear spawn of mine. No one wants to appear to not love every single moment of parenthood even when you are covered with poop/snot/vomit/barf or have a headache/suffering from exhaustion/ had a rough day/PMS/or just need to remember how to form a complete thought, express it to another adult (whom you sometimes forget exist).

For those times, I personally wish I could read this book. (the link may not work because it was from facebook and I'm not entirely sure how facebook really works, but see below) You'd never, ever read it to your kid(s), but it sure feels go to know you aren't the only parent that thinks it.

From C. Kemp's photo album. It's the front cover, but there is a whole book...

 And I'm so tired, that my post title has too many stars!

Kid Manual: A little mom snark

Today, I have been working on updating my family calendar, whittling down our to-do list and brain storming exactly how I am going to explain Asperger's Syndrome to my sister who will be staying with us while the husband is in the hospital and during his recovery process. It is all a little overwhelming (I seem to use this descriptor on a daily basis these days) seeing how our calendar is expanding into next year July, my to-do list keeps having baby to-do lists and nothing about autism seems to be simple. Being tired of being overwhelmed, I am starting feel a little snarky and well, it does not take me much to feel irritated.

Being that I am the most unorganized person in the universe, the calendar and to-do lists are in messy piles around my computer. I have scrap papers with dates, phone numbers and things I need to remember all over the place. I have 5 lists to remind me that I need cat litter, dish soap and a three ring binder so that I don't have to have 500 pieces of paper on my dining room table. I keep adding names and addresses to our family's master phone list, which I have two versions of—one on the computer, one hard copy.

I have three calendars. THREE. One is the pretty wall calendar not on the wall because I keep having to write things on it and the tack finally came out from the wall and is now awaiting my foot to find it some really wonderful day. I have pages of printed out monthly calendars spread around me and on top of the pretty wall calendar. Then there is the appointment calendar on our refrigerator, where on one half there is a space to write appointment particulars and the other half lives entire year of 2011, allowing me to highlight important dates.

I am that bad. I need the three calendars. If I didn't have them, I'd be lost at this very point and time. Writing things down three times seems to seal the information into my brain. Plus I can just tell my husband "I dunno, look on the fridge".

The Kid Manual (aka Welcome to Our Asperger's) I intend on writing plagues me the most. How do I explain it? How do I say that I need his future care-takers to re-invent their thinking? How do you tell someone that when your kid says "I hate you", he's really saying "I lack the ability to process and handle this situation at this particular moment in time?". How do you tell another adult, a family member and person stepping in to run your household in a time of great need that they are going to have to re-learn child care-taking from the ground up?

Asperger's affects my son in so many ways, some of them small and subtle and others large and glaringly apparent. When I was talking to my sister about her helping with my son, she said she was going to "put him to work". My stomach dropped. You can't just waltz in and change things with my kid. Yes, he is responsible for cleaning up after himself for the most part. Except there is a big BUT to this statement: Asperger's defines mess and order for my child and thus as his parents we must redefine clean and tidy for ourselves. Our house is never what I would call tidy (it's not filthy either), but I've learned to accept the fact that the kid's favorite pieces of clothing live under our living room end table. His bike lives by our front door. His toys organized by type in two large bins in the living room, the larger guns behind those bins to avoid being scratched. And sometimes parts of trees reside in odd areas inside my home. For the past month, he decided his skateboard should live behind the couch, until his dad convinced his otherwise. Everything has a place, but those places aren't what one would consider typical.

My mother, when she thought she would be able to stay in our home during my husband's surgery, told me I shouldn't worry because she wouldn't put up with any S-H-I-T from the kid. Again, I cringed. I had visions of my son saying, "Grandma, STOP TALKING TO ME!" in a not so polite way. If we were talking about a normal child, then yes, it would be a cause to take appropriate disciplinary action (go to your room and think about it!). But this is an Aspie kid. He's not saying it to be disrespectful; he's just trying to say that his senses are overloaded at the moment and he requires time in which to cope before engaging in conversation. He says it that way because he learned it to be the most effective way to get his needs met. We've worked tirelessly to correct this method of communication, have taken our first steps into the world of "I require a minute to process this, Mom, please" and I don't need it undone. The kid doesn't need it undone either because he is starting to get the effectiveness of polite self-expression when wanting to get his special needs met. And meeting that "stop talking to me" rude-sounding statement with anger is a recipe for a full blown autistic meltdown.

I need my family to accept that my son is autistic; that he has Asperger's and will never grow out of it, but rather into it—he'll meld who he is with the world he lives within to make his life work for him. I need them to accept that it's okay to be different, to meet a child's needs differently than they did with their own children and for my family not have an agenda to show me that as a parent, I am just using autism to excuse bad behavior because I don't have a back-bone. Or something.

I have a child who does not function like normal children and that means I do not function like a normal mother (and 'normal' would never be a word anyone would ever use to describe me either.. apple, tree and whatnot). I need my family to understand that fundamental concept. I need my family to forget what worked with their own neuro-typical children and trust that I know what I'm doing with my Aspie boy. My boy has come a long, long way in the past two years (time my family has not spent watching him grow). It wouldn't take long for someone to undo all that hard work—hard work that my son has put in everyday ever since he found out he was not inherently evil (the stigma of being diagnosed later rather than sooner).

The snarky part? Well, that's me thinking of every clever, witty retort to the anti-Carrie-as-a-mom statements a Kid Manual may garner; so snarky that those responses could find themselves as part of the manual itself. For instance: How do you know its autism instead of bad parenting? Because this dude with lots of letters behind his name, that specializes in children's brains and whom the state of Delaware recognizes as more qualified than you to decide whether or not a child has Asperger's told me that my son was off-the-freaking-charts-no-doubt-about-it an Aspie boy, but if you need more than my word for it, here's a medical release you can take to said doctor to discuss the matter further.

Or maybe there should be a section about why I know my son better than anyone else on this earth and therefore understand what he needs? A section devoted to why I am not taking my family's (constant) parenting advice. It would start with "If you think you need to tell me what I need to do with my Aspie boy based on what you did with your normal kid, please refer to Snarky section of this manual. Otherwise, please pick an appropriate response from the following list:

• Uh-huh, I understand what you are saying. Thank you for the input.
  
• I have tried that, thank you, but it did not work for us.
  
• It's a sensory issue, so it requires a different approach. I appreciate your concern.
  
• That is a typical behavior for Aspie kids, but we are okay with it.
  
• Relax about it.
  
• He'll live.
  
• I'll live.
  
• You'll live.
  
• That concern is on our master list. We are addressing the concern that precedes that one in order to better address the one you speak when the time comes in order to achieve the best outcome for my boy.
  
• In the big picture, we are okay with that. I'm sorry you aren't.
  
• That service is unavailable at the moment/we are wait-listed/it is out-dated/it is not for his particular disorder.
  
• If he doesn't like it, it's okay. I don't like seafood/country music/fleece/spiders/cotton balls. It's okay to have preferences and unique tastes. Its okay to not like certain things and fear stuff. Forcing it on him is not okay. He is an individual. Please respect his boundaries, not just as an Aspie kid, but as a human.
  
• Please re-read what Asperger's Syndrome means for my boy. You obviously missed something important, which is okay because this isn't easy for anyone.
  
• It is really okay for him to not want to hug/be tickled/be touched/have his personal space invaded. It's not you, its him and it will not cause sudden cardiac arrest.
  
• My name is on the birth certificate and he lived inside my body for 10 months (yes 10 months, that 9 month thing is a LIE!), plus I've spent 10 years being his mom, so I am using that power to veto your suggestion and/or assertion.
  
• My child is not just like your child. If he were, he'd be a clone. So far as I know people have not been cloned yet. I'd be happy to parent the cloned version of your child or vice-versa when the technology is available. At that point, we can test your method. Until then, I respectfully decline to try it your way.
  
• Really. If you do not think he needs medication for his ADHD I understand. You go ahead spend the day with him un-medicated, just make sure the first aid kit is stocked and remove any object that can be broken or cause physical damage to a person or my house. As a matter of fact, take him to your house.
  
• You can't convince me that 500 grams of sugar is good for any child. Yes, sugar tastes wonderful, but giving too much to a child is like feeding a Gremlin after midnight. If you are confused, please watch the movie before deciding to give my child a lollipop the size of head and insisting he eat it all in one sitting. (You might want to watch the Exorcist as well.)
  

Somehow I know snarkiness wouldn't be received well, yet it makes me feel better to get it out of my system. Ultimately, I just want my child to have the best support system possible while his dad is having major surgery. I don't want his Asperger's to minimize the fact that this is a scary and overwhelming event for our family, especially the littlest person in it. I appreciate what my family is doing to support us and the kid. With the manual, the kid and acceptance of his specialness come first because without that, no one other than his parents can address his needs. The point in making the Kid Manual is to make this whole process easy for everyone, but most importantly the boy. It's his dad, after all.

All sugared up and nowhere to hide

I love my child to pieces, but every so often I count down the hours to bedtime. This used to be much easier when the kid was 7 years old because we'd convinced him that bedtime was at 7:30pm. Even if we parents went to bed at 9:30pm, we still had two whole hours to say "who the eff is Mommy?" or "whose your Daddy?".  Now that the child is 10, he's to smart to be fooled into a 7:30 bedtime. What's worse is that he has friends who can verify that 7:30 is not the normal bedtime for tweens. Crap.

Now we are stuck with a 9pm bedtime. By that time, parents are too tired to go do the whole tucking in thing. The joy of Aspergers means that stopping that ritual would be similar to dropping a nuclear bomb on Ohio. It just wouldn't be cool. So, our happy behinds are dragged up the stairs with all the bedtime accouterments to perform said ritual. As Murphy's Law would have it, the more exhausted us grown-ups are the more labor intensive the bedtime requests seem to be. When we head back down the stairs 30 minutes later, we say a prayer to encourage God to make our child fall asleep fast enough so we can watch a television show we've DVR'd in peace before we fall asleep in our livingroom.

Normally, God mocks us by bestowing an a sudden, ravenous appetite for Frosted Mini Wheats or something on our child.

The Lord sayeth "The young shall need their bowls filled with fibrous foods when the parents have discovered a plot twist on the newest episode of Bones. Thy young will call from the top of stairs until thy will is met. Mothers will have to rewind the funniest/most amazing dialogue of the entire show so that the bowl is filleth."  

I know God mocks us because the child takes 2 different medications to help him fall and stay asleep. I know the Melatonin knocks me out immediately, but its effects are no match for that power cord plugged into my kid's behind.

Then there are times like tonight. I decide that since I had zero child free time today, that I would stay up to enjoy some solitude since everyone is in bed. Except, I hear the child bouncing, the chandelier is shaking periodically and my child continues to check on me because I'm standing between him and the giant bag of Easter candy his Grand-mommy gave him. 

I don't know about other children, but something happens to mine when he ingests sugar. I cannot be totally sure his sugar intake wasn't responsible for the recent tornado outbreaks. I am sure that this sugar intake prevents him from being able to sit in a chair. I knew he sneaked candy today when he started falling out of his chair. Really. No exaggeration. Since Easter left us with about 20lbs of candy, it's still fresh on the child's mind and he thinks it all belongs to him. (Since Grand-mommy doled out the family candy to him, his Aspie mind is made up)

Next year, he's getting Doritos in his Easter basket. And sugar free gum. And some stronger sedatives because he already takes them, but his growing body will demand more next year. The meds now reduce his speed from 750 mph to 50 mph without candy, but are 70% less effective after a solid chocolate bunny. Or as his dad would put it: He's got an electric power cord plugged in his butt that is impossible to dislodge (because he moves to quickly and we can't catch him).

At that point, as parents, we need Xanax. I'm not stretching the truth here at all. My child's hyper-activity means, as a family, we require medication to cope. So, I'm putting 5 Hour Engery and Xanax in the parental Easter baskets. Maybe even liquor.

We've tried to go the sugar-free candy route, but turns out it contains sugar alcohol. You know what sugar alcohol does to your body in large quantities? Anal leakage. It has a laxative effect that is intensified for a child. I do make almost sugar free cookies with sugar free icing, but they aren't Easter candy and I don't make them all the time. I really need to start making more cookie treats with a low sugar content (I've gotten really good about making them taste sinful).

The Easter candy is officially living in my bedroom from now on. It will be doled out responsibly to the kid and hopefully to us parents. Maybe, just maybe the poor kid will be able to move through the world at a normal speed for awhile-- until the next confounded holiday or the next time another grown up in his life besides his parents thinking buying affection with a lollipop the size of head is a great idea.

I wish I had the energy to compose a really hilarious image of my child with said power cord in his bum, but alas, I have not the energy or time to do so. I'll just leave the visual to you, dear reader, and your vivid imagination. I will tell you that I think our Jesus action figure laughs at us... which may be cause to call the Vatican, except I don't want a crowd of Catholic miracle lovers surrounding my house when I'm trying to get more mommy time. Nevermind, Jesus wanted to pose:

 

Autism Awarness Month

April is coming to a close, which means that all the blogs I read about Autism will stop the whole awareness thing. To me, that's a good thing. Not that the dialogue about autism isn't important, but that I feel as if all the sources I gain valuable insight and awareness from take a vacation to educate the autistic-laymen about very vague and general things.

This hiatus, for the most part, doesn't add anything to my life or my son's life and frankly, based on the comments I hear from outsiders, Autism Awareness Month didn't really educate anyone. I don't blame this on anything in particular, except our society's keenness on packaging all medical disorders into a nice, little, pretty box suitable for a sound-byte here and there or 5 minute blurb on the news.  Five minutes because its an awareness month and they are being generous.

If everything were cancer, it would be so much easier. (That seems to be my new mantra lately because our family is faced with conditions that are complex.) While there are many sorts of cancer, the root of the condition is fundamentally the same. With autism, it has some similar components, but experiences and affects of the condition vary greatly between individuals. The core of condition being fundamentally misunderstood by many, many people.

One core of the pieces is social functioning. What the media tells us is that autistic people lack the ability to empathize and feel emotions. This is incorrect and does a huge disservice to everyone having autism or caring for those affected. Autistic people have emotions, feel emotions and are capable of empathy. What they have is difficulty processing emotions. Social situations and feelings become entirely to intense and overwhelming to deal with, so they shut down. It's system overload, not an absence of a system.

A big, disturbing thing I hear from people is "I hope your son grows out of it". No one grows out of autism. They learn to adapt, learn to cope, and learn to fit into our society (which I'm not sure is inherently good) as best they can. And when an autistic person works their tail off to deal with stigma, bullies, boobs, dummies, bigots, liars and other socially icky but acceptable "normal" people throughout their life, they have to deal with idiots who say things like "you don't seem autistic, you seem normal". Well, duh, because they've worked hard to blend in-- a lot harder than neurotypical people work to be good citizens. (And as far as learning to deal and cope, those social issues aren't the only things autistic people have to work on. There are sensory problems, motor skills, anxiety, depression and a plethora of other components.)

Until these two things are adequately addressed, Autism Awareness is a moot point. Yet, we still take the focus off of helping people with autism to educate our fellow Americans about this grand spectrum. Except we don't talk to many autistic adults. We don't share enough real stories. We don't get the message across that debunks these myths and social stigma. We aren't telling enough people that are not enough services, interventions and supports for families. There are less resources for adults-- but more and more of these autistic children are becoming adults (cause, duh, they don't turn 18 and grow out of it, there is no autistic egg timer that dings when you're done with autism).

I am glad we are going back to non-autism-awareness in May. My only goal is to help my son and educate those around him. It's that act that is going to make people aware. It starts at home and spreads out of doors, into the homes of our friends and family.

Of course, I can't really say what's wrong or right with Autism Awareness Month or what we should be made aware of as well as this person, an autistic person, in this blog: Illusion of Competence.