Skateboarding: Who Knew?

Never in my life did I pet my clumsy (like his mom), vision impaired child (worse than his mom... they don't make a prescription strong enough for his eyes... a disease is suspected, but we won't know until he's a little older) as an athlete. Yet, he's turning out to be just that. The sport? Skateboarding.

My son has been practicing religiously since April. He's moving his body, making friends and learning very important life lessons. He's overcoming his lack of vision and developing coordination. He's getting a huge sense of accomplishment as he hones his skills. We watch professional skateboarders on television.

I never realized skateboarding was an actual sport, but I'm learning its value. Living near the beach, we have no shortage of kids who enjoy skating and surfing. I've never seen so many kids skateboarding in my life until I moved here. I never minded the skating activity in our old neighborhood or around our one shopping center because you know exactly what those kids are doing: skating. They are focused. They are staying out of trouble. They are being kids, not little gangsters or hoodlums. Now my child, who is at that age where he is more independent and doesn't always have his parents around to guide him to the good, healthy choice is benefiting from that focus.

Skating has become an obsession for my boy, which is okay by me. It's socially appropriate. He has skater friends. He made a new friend because of his interest in skating. A new friend. That's huge! The older skateboarding kids (some of them in their twenties) take a big brother approach with the younger ones. He learning how to interact in a variety of new and challenging social situations. He's figuring out how to literally and figuratively think on his feet. I'm not sure that would be possible in any other traditional sport where you are coached and guided by adults. This is a free-range sport that's self, peer and community guided. I can't think of another way where he could get this sorta education.

The local skate stores know who my son is and love talking to him about skating. Our favorite store, Liquid, gave my kid (or rather his grandparents) a great deal on new parts for his skateboard and some stickers to cover up their corporate competitors stickers on the bottom of his deck (which I've learned is the proper name for the wood part of a skateboard). My kid completes all the interaction himself with the clerks and shopkeepers. To hear them talk is like listening to another language, but it's nice to hear that your kid knows his stuff.

Our area lacks an actual designated skate park, so in the next town over a church has donated part of its parking lot for a mini-skate park. Kids and their parents, shop owners and enthusiasts have donated and built ramps and other neat skate equipment for the area. I never knew skaters would have such a sense of community, but I'm glad they are influencing my son.

I don't know if this is just another aspie phase, but until he's done with it we will encourage him. We will help him foster self-confidence through the sport of skateboarding. We'll support the skater community and local businesses that support him. And we'll guide him through the social lessons so that he can continue to grow and thrive. Skaters don't care if you have autism as long as you skate.


I'm going to take the time to give accolades to the church where the skate park is located: This particular church is extremely active in the county, helping families and the community like nothing I've ever seen before. The funny part is this church's congreation is made up largely of the gay, lesbian, transexual and transgender residents of our county. I often think to myself that all churches should be like this church. My husband had an office there and we have friends that attend that church. If I were to go to church, it would have to be this one. Acceptance is an amazing thing and it is a rock in our community.  

Glee's Sugar not so sweet

I am a total Gleek. My husband and I faithfully DVR every new episode to watch undisturbed. In our house Glee is an event. We put the boy to bed, grab our snacks, turn off the phones and settle in for an hour of laughter, drama, and music. There are times when we have to hit pause just so we can spend ten minutes delving into philosophical conversation about the relationship between Sue and Will.  We found that ourselves almost pooping our pants in anticipation of this season's premiere episode.

Image from Gleewiki

Something odd occurred during the season premiere: We saw our kid on television. Okay, not really our kid, but someone like our kid. Her name is Sugar Motta, a "self-diagnosed" aspie girl.  My jaw hit the floor when she said "... which means I can pretty much say whatever I want. " because my boy just went through this phase. (Part of the reason why I haven't had time to post is because he decided having Asperger's could give him a free pass to do and say whatever he liked. Thankfully, we have moved past that for the most part.)

I won't get into how offensive it is to hear over and over again that there is something wrong with having a "stereotypical" aspie kid. If  there is anything I have taken from this debate it's that the autism community does not accept stereotypical aspie kids or their parents. 

I can't say I know what the writer's intentions with this charcter is or what the future will hold for her. What I can say is that I recognized some of my kid in her. Spoiled, check. Egotistical, check. Rude, check. Smart-mouthed, check. Manipulative, check. Of course, he's not that way all the time, but he certainly has those moments-- a lot of them in the past month. One of his biggest challenges is learning not to tell people how much smarter and more skilled he is than his peers. Most of the time it's true, but there are times when he over-estimates his abilities landing him in a socially awkward pickle. His reaction is much like Sugar's reaction to being rejected membership in the glee club. She calls Will a "Broadway wanna-be", then angrily storms off. Been there, done that.

I can say that after watching the second show I'm sure Sugar isn't autistic. My god, she gave out a hug without a thought to someone she hardly knew! My kid would never, ever do that unless it was family. He hugs family because that is his routine. Does that make me hate the character? Nope.  It wouldn't be the first time Glee faked a disability--remember Tina and her stuttering? I'm okay with that because being a regular teenager is hard and you couldn't pay me to go back.


Now most of the autism community is outraged by this portrayal of a self-diagnosed autistic young lady using AS to as a free pass. Sugar was not a well received character. Twitter, Facebook, the entire Blogosphere was all abuzz with criticism. The character is viewed as stereo-typical and insulting to those with Asperger's. For a good summation of those thoughts and feelings, I suggest Beth Arky's post at The Child Mind Institute. I'm not going into detail, mostly because I'm feeling lazy and want to eat my gyro leftover from last night's dinner.

I happen to hold the less popular view that Sugar is an interesting character. I don't find myself taking offense, maybe because I am raising a stereotypical aspie kid? Or maybe because I'm okay with television writer's taking liberties with things that effect humans. I'm certainly more okay with Sugar than I am with journalist saying autistic kids lack empathy. That really gets up my nose. I don't watch Glee to be educated; I watch it to be entertained. It's great when a work of fiction gets us thinking, actually I prefer that, but I don't get my facts from hour long musical show.

I think what surprises me most about this debate is the fact that the autism community took a first impression and made a very harsh judgement. One thing I've learned from autism is that a first impression isn't the the time to pass judgement. You just don't know what's underneath the surface in five minutes of character introduction.

I think the autism community is having a knee-jerk reaction, which I can understand. Getting people to really and truly understand autism is hard, hard work. There's a lot of discrimination, a lot of "you're just saying that so your kid's behavior is excused". I get that. I've lived that. Yet, does a history of experiences with others' knee-jerk reactions justify us having our own?

Julia Bascom's blog post, Just Stimming, makes a very good point that I will leave you with (and I reccommend you read her entire post on the subject):

Anyone who thinks that Sugar’s actions won’t be addressed hasn’t been paying attention to how the show works for the past two years. Anyone who thinks that her plot has anything to do with actual autism, or the issue of self-identification in the autistic community, is putting assumptions into play that the show has never expressed an interest in. And anyone who thinks she is written as actually autistic, as some parents have been suggesting, has some serious ableism of their own to unpack.

Look for a new posts soon!

Things have been awfully busy here. When I'm not refreshing the kid for school, correcting behavior, fixing meals and running between doctors appointments, I've either been scrapping, reading (you know, Chiari & Asperger's) or catching up on emails. Sometimes, I sleep.

There's one really interesting thing that has transpired lately. There seems to be a theme running through my life at the moment, thanks to the powers of the Universe. When these themes manifest over and over again, I take heed. The current theme is the link between gratitude and karma. And boy, do have a lot to post about that with one particular example I find morbidly fascinating. A study in psychology maybe? Extreme narcissism? 

Whatever it is it reinforces the lessons I've learned over the years and makes me thankful for everything I have, and how lucky I am to have my husband alive and well. It reminds me to be grateful for our wonderful support system during our battle with Arnold Chiari (he's a jerk!) and coping with autism.

I haven't decide whether to splay it out as is or just write a piece about it. It was an interesting interaction to say the least. To see it as is would be like watching a train wreck. Or maybe some awful B rated biker chick movie. I need to think about how to portray this story...

In the works are also several more scrap pages and a guest post for Scifake.com. Lots to come when I can find more time.

Wanting meltdowns to melt-a-way.

"Mommy", he asks, "is it okay if I call the cat the 'p' word?" 


"No, you'll get in trouble", I reply in harmony with my husband. I think about it for a minute. "Wait...what 'p' word do you mean?"

In a whisper, he says shyly, "Patches".

Patches was my cat's name when I adopted her. She didn't look like a Patches and I can't say she had a great life under that name, so I changed it. I had to laugh at the kid's sheer innocence. Patches, of course, not that other word. Not pussy cat... The boy makes me laugh. I still had to explain to him that the cat's name was special and something I worked hard to get her to recognize as her name. We don't want to remind her of her previous life.

Summer is is coming upon its last full month. Our August calendar isn't filling up quite so quickly either, which I hope means that we will have free time to enjoy the sun and sand, water and outings that we are accustomed to this time of year. I also hope that means less time in waiting rooms and hospitals along with fewer trips to the pharmacy.

My greatest hope is that my kid can will feel more secure, feel like life is normal again. The cracks are starting to really show as his behavior reverts. We are having more meltdowns, he is clingy, he is more impulsive, he just isn't at his best.

The other day, he had a meltdown because his aunt's daughter came for a surprise visit, usurping his special time between him and his aunt. It's his only real one on one time these days. He figured if his cousin spent the night here, he could make up for that lost time with his aunt; A plan to which neither his aunt nor parents agreed. 

It was two hours of pure autistic meltdown. As his parents, we were not prepared at all. It was the longest meltdown we've had in quite a long time. It wasn't especially violent, but it was filled with spiteful words, sobbing, wailing and stopped time in our house. It was also the third one in a week.

We simply aren't used to these long, dramatic meltdowns anymore. For the hubby, its terrible. His brain is still healing meaning he is sensitive to sounds and does not have the patience he once did. He gets as frustrated as the kid because he a) can't squash the meltdown and b) can barely handle it because the shrillness and shrieking causes sensory overload. 

I have to admit that I was half deer caught in the headlights and half calming force. I thought to myself that I needed to re-read my "How to Deal with Metldowns" section in our Family Manual. The kid looked to me to help him negotiate and cope with his feelings and I was a tired, stuttering mess.

I should add to this that our current heatwave effected all of us at the time: I have no tolerance to heat like this, never have and heat exhaustion is something I succumb to easily. I had just begun to cool down after being outside when the tantrum ensued. The kid was also coming directly in from the heat. He was hot, tired and upset. The hubby's pain has increased significantly since the heatwave started, which is common for Chiarians, but worse being only two months post-op and possibly having a leak of some sort (increased intra-cranial pressure bites). As a family, we muddled through the whole thing.

I don't think the kid understands how to cope with what he is feeling. I've said this before and I'll say it again: Watching and worrying about a parent go through a major medical condition, surgery and recovery is hard for an adult. Not only is the kid not an adult, he's emotionally delayed thanks to Asperger's Syndrome.

While he was amazing during the initial process and immediately after the surgery, he's now able to have all those fears and worries come to the forefront (as it is for all of us). He's adjusting to Daddy in recovery as opposed to Daddy the Mother Hen, fart joke buddy, and generally his go to guy for all important kid stuff. He's adjusting to what Chiari means for his Dad, him and his family. This is just one phase of what will be a long recovery. 

With Asperger's, having your entire world turned up-side-down and inside-out is devastating. Anyone who doesn't realize that is not thinking about the kid. Daddy has always been his rock, so this is the hardest thing the kid has ever been through. Daddy always understands him, is always there for him, is his... well, dad.

But it isn't the same anymore. Daddy isn't around-- not like at work not around, but convalescing not around. The strongest man alive according to the kid isn't so strong right now. Yet, Daddy is trying his hardest to still fill his own large shoes, even if its in short increments. There are times when Daddy tries to be there longer, be stronger, push past his current limits to be the best dad he can be. Sometimes they have those normal for them father-son moments. Sometimes pushing past his limits, Daddy doesn't always succeed... yet the effort means something for all of us.

Because of Chiari changing our lives, I am looking for a therapist for the kid to see. I would prefer a male, but it is rare to find a male therapist willing to work with children-- my husband was one of the only in our area. There are three female candidates, one is probably out because she is the hubby's boss (and so busy!), which is a shame because I trust her the most. The other is the one we saw previously, who made no great impression on me (or the kid). The third is through the agency dealing with visitation, but who has not actually started work yet.

Speaking of visitation, that adds another stressor onto my poor kid. While we've discussed it briefly with him (because with Asperger's, you need a lot of warning for any new thing), we haven't gone into great detail. The hubby and I are going to visit with visitation therapist first to go over the information and get some guidance on the best ways to discuss the subject in detail. I need to do some reading, too, about Asperger's and supervised visitation (there really isn't much out there, ugh).

This is something I'm not really good at because I have a gut reaction that is extremely hard to control when I even think of the subject. So, the hubby has been taking the reigns on this matter. In a strange way, that has been positive thing-- it reaffirms fatherly strength.

With all that has happened, its no wonder we are back to meltdown several times a week. It's not only the hubby that is recovering, but each person in our family. Providing the kid with a safe outlet to process all his emotions is at the top of my daily to-do list. Remembering to have patience with everyone, including myself, is in the second spot. Reminding myself that its okay to muddle through life when it becomes unfamiliar is just fine, too. I wish I could have a magic candy that not only melted in his mouth, but melted away the kids meltdowns and made him feel like he was again on solid, less stressful ground.

Mom's Day Off

Every so often, I tell my family that I am taking the day off. Even mom's need time to re-charge their batteries. To be able to take care of our families, we moms need some time to enjoy non-mom and non-wife things. Kids and husbands don't always realize it, but they get a lot more play time than their wives and mothers. (I'm not sure how this works in same-sex relationships... and I'd be interested to know if one partner feels like a traditional "mom" and needs to set boundaries down harder to take a day off...)

I prepared the kid earlier this week that Saturday was going to be an "entertain yourself day". or at least a "don't expect mom to succumb to your every whim day". I told the kid, of course, that I'd provide three meals for him, but snackage was his responsibility (and possibly my nightmare). I also reminded him that I'll be around for boo-boo mending, but otherwise, pretend your mom is at the spa.

I said the similar lines to my husband. His response was supportive, with a hint of "why is she telling me this?" because he doesn't truly realize how difficult it is for me to get away. That's understandable since he's sequestered more often than not in his convalescent area (aka our bedroom). He'd love to need to day off instead of dreaming of having everyday on, so to speak.

I thought I had everyone prepared. Thought being the operative word. You see, my little social aspie creature, who a year ago would be happy to go an entire day without having to have a conversation with anyone around him has turned the opposite direction. The poor child is used to having someone entertain him in some way, shape or form. He's spent the past few months with family and/or friends, visiting or being visited, at home doing something extraordinarily fun or out and about doing summery things. It's great and has been a huge distraction in the absence of his father from his daily life, but it does not bode well when we have a chance for down-time... or I have a chance for down-time.

While I got to sleep in until eleven in the morning (sleeping in was more like I couldn't be roused due to sheer exhaustion), I haven't had much other time off. As a matter of fact, I spent the greater portion of today doing what I always do. Then when I reminded said kid about said day off for mama, he promptly called his aunt to tell her I needed him to go spend the night with her. Cause, you know, I'm taking the day off?

She wasn't game and she shouldn't have to be. My boy has plenty of independent play skills (despite him forgetting he has them) along with plenty of games, books, movies and toys to provide a rich, fun experience when no one is around to play with him. Instead, he was bored (which is code for "help me cope with not getting my expectations met").

And he started to meltdown... so Mom swooped in, took him outside where he was more able to keep himself together. We reviewed the misery which is his life (Sam's not home, Dad is having a bad pain day and Moster said no to staying the night). I told some stories of my childhood that revolved around having to entertain myself when I didn't want to. I'm not sure those stories help as much as the change of scenery and talking being used as a way to cope do.

I love that my kid is relishing in socialization while hating that he isn't prone to moderation. It's all or nothing. One extreme to the next... for now. The boy has learned a lot in the past year, especially in the past three or so months. He's been asked to deal with a huge amount of stress, more than any kid should have to bear. Through it all, he's been absolutely amazing considering all life has thrown our way... thrown his way.

Now that Daddy is out of the woods as far as he knows, we are seeing the kid's stress manifest in strange new ways, like this no longer being able to keep himself company anymore and not wanting any downtime at all. He's all go-go-go these days. Of course, that makes it harder for me to take any breaks because either I'm going with him, shadowing him with his peers and on the days he's sleeping over at my sister's, I'm running the husband to appointments, running errands and taking care of non-kid related things.

I knew he's been in sorta Asperger's pressure cooker all this time. I just didn't know what the result would be or when the lid would blow off-- I just knew eventually we'd find out! Well, this is part of it. The child doesn't want to be alone... at all. This isn't anxiety related, or not like it was before the Paxil (irrational fears keeping him prisoner), but its something. It's not wanting time to dwell on the what ifs, perhaps?

In any case, I'm trying hard to help him cope through this period, to remind him of his wonderful imagination and other outlets he has that are fun, yet independent. And I am encouraging him to do little things with his dad, like have lunch in bed together. As a matter of fact, I've been able to write this because the two guys went to the store together-- Daddy was finally feeling up to it.

Yet, I'm thinking with the manifestation of this newest symptom-- the inability to do anything solo-- it may be appropriate to go back to therapy. As a mom, I see this as a regression back into toddler-hood, when I couldn't take my eyes of my boy for a second without disaster. We are just a small step away from bringing him into the bathroom with us because he refuses to occupy any room by himself for more than two minutes. We are also a small step away from losing the ability to sleep in his room by himself (or self-soothe at bedtime). As the stress creeps out of his little (okay, bus sized) head, I worry about regression.

We've worked so hard for so long on all these independent and socialization skills. Matt has worked hard, extremely hard on acquiring skills and coping mechanisms, managing his behavior and expressing himself and feelings. I saw today his own frustration seep out. Yet in this, he recognized and expressed that he did not like how he was feeling. My heart breaks for him in these moments.

Facing the mortality of a loved one is hard as hell for a normal adult. For a kid with Asperger's Syndrome... well... is there an expression worse than "hard as hell"? Whatever you can come up with would fit.

So while I didn't get a true day off (which I never really expected anyway), I did get something that is important to moms: I got an understanding, a clearer picture of my son's reaction to his father's Chiari recovery. The only way I can help him get through this is to see the big picture. It's just one piece to the newest puzzle we are putting together.

We'll just keep working on it until he can find that balance between introversion and extroversion, always wanting to be alone or never wanting to be alone. Until we get it right, we'll all be taking a lot of deep breaths and taking things one second at a time. Like boy said just a few minutes ago (they came home a little while ago) "We'll try again tomorrow for a day off".

Struggling to explain Asperger's Syndrome

I am having a hard time with this one. When someone looks at my boy in the middle of a meltdown or during certain behaviors they start with the "he needs more discipline" or "he's very spoiled" or "you need to do X so your child doesn't Z". It's very frustrating, especially when the comments fly mid-meltdown or during those typical autism behaviors.

My boy's meltdowns have decreased significantly over the past year. They went from lasting all day to under an hour. Each time, its less severe. That severity always depends on the trigger, but even still its better than it was even two months ago. He makes improvements with each one. He gets disappointed in himself when it happens because he ruins his Days Without a Meltdown Record (because they used to happen everyday, now its twice a week at worst).

I have to remind him that some of his reactions are appropriate for the circumstance. It's okay to be disappointed, cry and whine. That's not a meltdown and it is okay to express those feelings. If he was a normal kid, I wouldn't have to explain what the appropriate methods of reaction to negative things were and I wouldn't have to do it weekly.

He is spoiled, I admit, but he is an only child. He has no competition from siblings, he has more resources available to him. That's okay. I don't know how you would stop him being an only child... besides the obvious, which isn't happening any time soon.

I've done a lot of explaining, but I fear it comes off as excusing. That makes it frustrating for everyone. When my kid says "please leave me alone" or "don't touch me, please" (and we've really worked hard on expressing those needs appropriately and politely) and an adult does not respect his wishes, the boy gets to a point where he feels forced to be more aggressive. Yet so many adults do not respect his need for personal space. They push him and he ends up pushing back. That makes my boy look like a bad kid because he's over-reacting (or so it seems to other adults) to their stimulation.

He's not over-reacting. That's him. At times, touches, conversation or another humans mere presence overload his sensory system. He short circuits. It's cause and effect. And adults aren't very good at listening to and respecting children when it comes to their personal space and boundaries.

They aren't very good at listening to the people who know the child best either. This is hard when that other adult is inescapable or a family member. The resistance to accepting an Autism Spectrum Diagnosis is maddening at times. Why do people feel its necessary to argue a diagnosis given by an expert? It's not like the evaluation is a 5 minute process given by someone with Bachelor's Degree (unless its an education diagnosis *rolling eyes*).

The other day I said during a meltdown that "this is nothing". There was only crying and door slamming. He was able to be talked down. HUGE improvement. HUGE. Yet I still had to say again that my boy has made stellar progress, that discipline isn't going to fix him. That taking away his slumber party wasn't a good punishment because he needs that social interaction, especially since he's homeschooled now. (Homeschooling is another thing I'm a so tired of explaining)

Discipline isn't going to help him, unless its something that warrants traditional discipline. What we do with him works. It's proven to work. Why? Because he is getting better. Because we, as his parents, no what we are doing. And guess what? He isn't always going to succeed and he's going to make mistakes. He's a kid and he's not perfect, but he's learning.


My husband gives these explanations so much better than me. It's too bad he isn't in a position to do any deep discussions. Even still, even though he's a therapist who specializes in children and has tons of Aspie kids on his roster, there are many people who don't trust his assessment of his own kid. The neurologist does, you know, the guy who is the expert in the field? And the neurologist trusts me, the mom, as being an expert on my child's behavior. But what does he know? *sarcasm*


I found myself wanting to say this week that people need to develop a thicker skin. My boy wouldn't lash out at a person he doesn't feel comfortable and safe. It's a twisted compliment. He doesn't mean it, he just doesn't know how to express himself. What he's saying is "I need you to understand me instead of judge me or tell me I'm a bad kid". Or he's saying "If I yell at you than maybe you'll help me through what I'm experiencing because I am terribly uncomfortable". Instead, adults just get mad or upset with him. 


I'm left wondering how you explain to people close to you that its not because he's a spoiled brat, but because he's autistic? How you put in terms they can understand? What is the magic combination of words? How do you avoid the frustration and hurt feelings?

When an autistic person ages out

This Article makes me sad and sickened. Here is a young adult with autism who happens to be a black male. He is 19 years old, but it does not sound like he is still in school. So what does he do? Hang out near a school in the middle of the day. Am I surprised? No.

Some areas have no services for young adults with autism. Some don't have stellar supports or any at all. In this case, it sounds like the mom just couldn't deal with or handle this kid at home. Maybe it would be different if mom had respite care and her son had adequate transitioning out of school. Being that this boy was only nineteen, his emotional and social ages are probably much younger.

Which makes me ask "Are you effing serious?". Sorry everyone, but you are going to face an explosion of cases just like this one as the autistic population, which is growing, starts to leave high school. Especially if these kids are minorities... especially if a child is from poverty... we are in trouble because we don't have enough help in place to handle this population when they become adults.

I read that article thinking that this could be my boy. Not freaking out because he's wantonly causing trouble and thinks "eff the police", but because he's freaked out by this stranger approaching him-- spraying pepper spray to subdue him (which is a dumb idea). Pepper spray versus a gun? Really? This is on top of already being agitated because he has nothing to do or misses school or his fish died...it only takes is a small, even irrational trigger to put an autistic person over the edge if they are already under stress.

In my experience, the average person just doesn't understand Asperger's Syndrome or anyone with high functioning autism. Kids are labeled as "bad". There aren't a lot of trained specialists to work with this population. Parents often feel isolated and overwhelmed. Three words: Lack of support. Another three words: Lack of understanding.

As a society, we have blinders on when it comes to this population. This article is demonstration that we, as a society, refuse to take those blinders off. This boy reacted in a way that is typical of this population (albeit: we hope by age nineteen we've given them the skills to cope). He just happens to be an adult, black and a big, scary looking boy when he is reacting.

And a gun? C'mon. He was black... don't all black men carry guns? Really? The person who made the original 911 call was obviously biased, if not racist.

When this kid got that upset, he was not able to control himself. Pepper spray did not help. Trust me. Everyone who is an expert or parent of a child affected by autism will tell you. A child without the right supports, under the right conditions is as controllable under stress as a run-a-way freight train. You just have to ride it out until they hit a brick wall.

Let me be the first (or next) to say that this poor kid won't survive in jail. Not. at. all.

How can our justice system work appropriately if it does not understand autism? How can our society function appropriately if it doesn't understand autism. Get ready, America, because 1 in 100 children are autistic. That number is rising. If the trend continues (whatever that trend is), its going to be 1 in 50...then 1 in 25, then 1 in 10. Betcha when its one in 10, concessions will be made.

Or maybe when the first of the 1 in 100 population become adults and age out of public education based services, we are really in trouble. Without supports in place, cases like these will be an everyday event. High functioning autistic people are hard to pick out on first glance. Even on second glance, they can pass. Yet, make no mistake: Autism is real and this behavior is at its core.

But its okay, the budgets that fund services for people with disabilities have only been slashed considerably. We don't need services for this population anyway. All we need are prisons. Teach these incredibly bright population that have little social skills how to become criminals. We'll learn the hard way.

The Dark Side

The Dark Side is not nearly as fun or interesting as The Far Side, a comic which my father read to me faithfully every Sunday until I old enough to understand it without explanation. The Dark Side is more defined, somewhat fascinating (it must be or Discovery ID wouldn't exist), something we all have experienced at some point in our lives, but something that a lot of people don't want to talk about. It's a place within myself that I visited recently (and have already talked about, but here comes more).

I have this really bad habit of being an open book. It drives my husband absolutely crazy-- he knows I blog about us, our life and junk, but I have to be careful to strike a balance between my big, open and his sealed shut mouths. It's the same with other social media, like Facebook. I have the urge to just let all hang out, but do my best to self-edit. Lately, I haven't been so great at that.

My son has no innate ability to socially filter his words thanks to Aspergers. He says what feels in the moment with no regard for how it might make someone else feel. He's brutally honest. When he goes to dark side, he can make Darth Vader look like a puppy with a silk bow around his neck in a basket with a naked baby. I've developed such a thick skin to that sorta behavior that I sometimes quietly marvel at his creativity or laugh on the inside at the sheer outlandishness of his words. Kid, where do you come up with stuff?

But me? I was blessed with an incredibly diplomatic and rational nature, or so I've been told. There are times when I have to remember that it was no blessing and not a trait I was born with.. Not at all, the ability to look at a situation from all sides, consider everyone's feelings and act accordingly was forged in many great fires. I was born with an Irish temper and a Viking lust for... life (?) or maybe just a good survival instinct.

I struggled with the point of this whole post all day long. Well, as much as a busy mom with a recovering husband (and cats that now hate her) can manage to struggle with a thought independent from caring for loved ones and making a big pot of stew. That basically means as I laid in bed desperately trying to not check my husband's vitals and flipping through late night television shows, when it came to me, I think. (And I make no promise that this will be sweet, short or easy)

That Dark Side is the part of we don't share with everyone we interact with--unless you have a neurological issue-- and a part we often try covering up, excusing, ignoring, delaying and/or putting on the back burner.

If there is one common thing about that darker part of ourselves, its that every single one of us has triggers-- those things that push you over that proverbial edge. What happens once we start that decent into madness varies as do the levels. Yet, it all starts with with a small spark or sudden fire or a bit of both that makes us virtual strangers to ourselves. Sometimes it is fast and hard, sometimes its a snowball, sometimes its trickle, sometimes a gush.

These triggers (or if you are lucky, its just one thing) are the pink elephants in our minds. (There's no particular reason they are pink, it just sounds cool). If you're proactive, aware, or if you are in the midst of therapy, you work on naming, describing, controlling and coping when the elephant poops so much in your head that the poop spills out of your head at the wrong moments.

You paint the elephant with something luminescent so that you can stop yourself from picking up that Sith Light Sabre and rule your world with tyranny.

Recently, when speaking with the supervised visitation therapist (like there wasn't enough going on already), I had stated that I felt I'd become complacent in keeping my ex-husband at bay. The threat he is to my family, to me, to my life and my son never stopped-- I'd just felt safer because the seas had remained calm for several years. Then I got served. Literally and figuratively in court because I was so complacent I was unprepared for my ex to even show up (and he did, I got caught unprepared which is why I got to talk to a therapist at the visitation center).

The lesson the Universe was given to me went unlearned. The painted elephants in my head needed a new coat, but I ignored them. While I was busy lecturing my husband on why he should listen to those subtle (or sometimes loud) messages the cosmic forces seem to deliver us little beings, I ignored my own. For years, I kept saying to myself "If we just get over this last hurdle, I'm going to allow myself to have a good cry". Must. Push. Through.

It's flawed logic. It's misogynistic, too, because so much is expected of women. It's why they don't make good Jedis and if they do make it to that most respected of places, they sacrificed something-- relationships, children, career, orgasms-- are b-words... but that's a post I'll leave for the young feminists to address.

If you dissect the mantra of pushing through the hurdles and crying later, if you flip it over, it reads like a question: "If I sacrifice my needs for the greater good until [insert events here], I'm bound to see a good result, right?"

Wrong.

This is where that whole Autism being test drives for future, better brain wiring-- evolution in progress-- theory comes into play. Where neuro-typical people fail, autistic people thrive. They deal with their issues in the moment, as they come. They see the elephant without even needing to paint it. Their Dark Side is always illuminated. Covering up the internal, emotional ickiness is simply illogical. Imagine that.

The Dark Side is part of us, all of us. It's part of how we are hard-wired and part of how we are forged in the sunshine and storms of life. It's not inherently bad, its just part of that balance positive and negative, ying-yang stuff. Its our job to maintain our own inner balance for the greater good, not to dismiss it. Don't cut off your nose to spite your face, so speak.

If you play your cards right, you find people with whom you can share those really negative things, sometimes without even speaking about them. I have that with my husband. There is a lot unsaid between us. There's that Hallmark card connection where we know our lives parallel in some odd way, so that it doesn't need to be said, but we'll hand each other the proverbial brush or lantern to keep up with the elephants.

Want to know my trigger? The thought that got me out of bed to finish this puzzling post? Holding a shell of a person in my arms. No pulse. No breaths. Fading warmth. Doing it twice. I'm not exactly sure how one puts words to having your arms wrapped around a body when the life has gone out of it. A fast, sudden loss, or not. I'm not sure how you quantify a "sudden" when it comes to death. Is it days? Hours? Minutes? For me, it felt like forver, but it couldn't have been more than 24 hours that I knew the end was coming.

The time after burying two stillborn children was the darkest of my life. Nothing could compare and no one deals with these matters well. We simply are never, ever prepared. All we can do is talk, process and grieve and accept. Time heals for most, never for some, but you are forever changed by death. It is the one Dark Side experience we will eventually have in common. It's the one topic we all cover up. It is the human pink elephant.

It's why I check on my son every night before I go to sleep. It's why I wake my cats when they are sleeping deeply. It's why every night, I lay my arm across my husband's chest. It's why I spent the last two months waking up every two hours to make sure he's still breathing. It's why I couldn't sleep tonight. He had a bad day. He wasn't himself. So when he wasn't snoring, I was prodding the poor guy. (It's no wonder neither of us sleep well!)

I feel like I have been walking through the Dark Side even still, only its not quite so dark anymore and feels more manageable and less suicidy (at least for me). I don't think there's a defining anything about our whole experience as family, both inside and outside our four walls. It's just healing, all around.

In conclusion, here are things I've learned in the past 7 days:

1. My husband's parents have a lot of umbrellas (or they did because one is sitting next to my computer).
2. If you are going to lash out, be a little specific. Or rather, when you are lashing out, chances are you will have really crappy aim.
3. You only lash out at people with which you feel safe.
4. Vomiting sucks.
5. When you tell your semi-conscious husband that he can leave the hospital when he get out of bed and walk laps around the ICU, it'll be the first time he actually listens to you.
6. Even though he's home and healing, it scares me to death when my husband has a bad day.
7. When my husband is having a bad day, so is my kid.
8. We need more cowbell. 

Fixing a Chiari Malformation Part One: Processing.

Yesterday was a long, harrowing day. Husband's father says its always good to be a surgeon's first patient of the day. If you know my husband and his dad, being prompt isn't an aspiration, its a sin. Being early is always best, which yesterday we were. On the other hand, my sister says being late is better, regardless of your surgery order. I understand both of their reasoning this morning.

We were early and second in line for surgery (that's the royal we or is that the author's we? or maybe just "wee" because I am still tired and haven't had enough coffee). Husband's check in time at the hospital was supposed to be 6:30am Thursday morning, but for my husband it was 6:09am. It would have been 5:58, but there was a line at the surgery check in desk.

I don't know what time we were taken back to "processing", which is basically where they make you wait to get to the pre-operative area, get fully admitted by your pre-op nurse and get naked, dressed in one of those horrible (yet fashionable?) hospital gowns while listen to the hustle and bustle of nurses, techs patients and alarms. I can't tell you what time it was then, but I can tell you that the nurses were looking forward to lunch.

If you want to calm a nervous patient, this is not the place nor the time to do it. The communication is nill, you get checked on by someone who has no information about how long you will be waiting before something very scary happens and the standard answer is "I'm not sure". I don't think in the six hours my inlaws, husband and me waited in the pre-op area that any confidence in the unfamiliar hospital and its staff was gained. Lost, maybe, but definitely not earned.

The coffee stand did have excellent coffee, but they should have given away a free Xanax for every surgical patient family member. Or maybe a shot of something to take the edge off. Even better, they should have given my husband something to relax him and something for the pain he endured going without medication since 10pm the previous night. The nurse did finally ask if his pain level warranted a medication, but not until 30 minutes before he left for surgery.

You know what's great? I was reminded as different as my husband is from his dad, they still have many similarities. One of those is an inability to cope when situations and circumstances are out 100% out of their control. It was just a little scary when we got to hour four. Not to mention, my silly sense of humor isn't understood by my father-in-law all the time. He must think I'm nuts at this point. My using re-framing to deal with my husband's wait time wasn't understood much either, so I finally explained very nicely that having a big, clear picture shown to you in a different light is helpful and calming. And then I had a cigarette or two because I needed a break. I love my fathers, but sometimes they need a woman's perspective in a blunt way. That was not the time. And my father in law still thinks I am nice. I think...  

But finally he did leave for surgery. An orderly who educated us on how and when to steal stuff from the hospital (even though I didn't see anything worth stealing) zipped us up to the Preparation Area, or rather the husband got to go there and I was given the world's fastest instructions to the waiting area. Naturally, after all this wait, my inlaws had gone off to eat lunch meaning they missed this part.

I checked into the much nicer surgical lounge (why they call it a "lounge" I have no idea because no one looked to be lounging) then ran off to find my inlaws. I was entirely too nervous to hit the right buttons on my cell phone. Actually, I was so nervous that it took me a good 5 minutes to find an elevator to the cafeteria. And naturally that meant I couldn't direct my husband's parents to where they needed to go.

Epic Daughter-in-law Fail. I went to the car for a smoke (sorry, this has been sooo stressful!) and called everyone that I had intended to call post surgery at the time they expected to hear outcome to say "yay, he just went into to the prep area". My kid said "okay Ma, call me in 4 hours". Typical Asperger's-- memorized the length of the surgery and wanted no more info. Now if everyone were like that...

Part Two will follow later. I have 30 more minutes of solitude and coffee before we go visiting (so, you know, happy ending and all).

Give a boy a pill?

The Thinking Person's Guide to Autism, (aka TPGTA) which is by far my favorite blog about Autism, posted this via Facebook Saturday morning:

I immediately ran my mouse over the link and clicked to read the post where a woman on Blogher (a network of women bloggers that wouldn't add me to their network because I use Adsense so I can earn an extra .03 cents a year, so I'm not linking them. Pllbbbttt!) wrote that yes, she would give her a child a pill to cure autism. That made me wonder (and not about tea in China) if I would do the same thing.

I realize that the TPGTA pretty much believes that the idea of a pill to cure people of their "disability" is rather offensive. I understand why as a lot of grown-ups with autism write for or sit on the editor panel of TPGTA. I'm pretty sure they like themselves just dandy and don't feel like they need to be cured. I don't think they need curing either. One of my favorite contributors (and challenger of my mind) is a rather brilliant and interesting writer/college student/girl/spectrum sitter named Zoe. I can't imagine what would happen to her quirky, fun, thoughtful blog posts if someone gave her a pill to "cure" her.

These people who have contributed so much to not just the autism community, but to all of society are who they are partly because their external experiences and partly because of their internal processes. At one point they were kids. And had someone "cured" them with a magic pill, they would not exist as they do now, which means what they contribute to society would be lost.

But what if there were no autism because we could cure it? Because as nature, biology and evolution are incredible creatures, there would be something else—actually, there are lots and lots of things already besides autism. It's just one issue humans face as a species. And while our society has gotten better at dealing with people who have issues, we are by no means tolerant or in a Star Treky ideal of acceptance of people's differences.

Before we set out to make a pill to cure autism, I'd like to see someone cure bigotry, intolerance, fundamentalism, and addiction. That's just me, though. Frankly, I have never met a person who was issue-free. Everyone has something. The idea of curing autism because its uncomfortable for children, I understand. No (normal*) parent likes to see their kids suffer with anxiety, social relationships, from seeming irrational fears, or be stigmatized.

Yet, as a normal child, I remember suffering from irrational fears (the dark, cotton balls, construction vehicles, those aliens on Sesame Street), social anxiety (because people, especially in cliques are mean as a hell), I had problems not just expressing myself, but finding a voice that people (read: adults) listened to, and lots of things and experiences made me uncomfortable as hell. I was considered a normal child. But good gravy, childhood ain't easy. I think autism exacerbates the horror of childhood in a way that parents and adults need special training to begin to understand. Autism makes you take normal and conventional and throw it out the proverbial window.

We are who are partly because of nature and partly cause of nurture. And you know what? Normal people aren't any better at relationships than autistic people. It just happens that normal people have a set of arbitrary rules that make sense in their brains. Captain, that's illogical.

To avoid further rambling and Star Trek references, let me take some points made in the aforementioned "Yes, I would" and put my logic to it:

If there was a pill that would allow him to walk into the kitchen when there was already food on the table and not make him gag and have to run out of the room... I would give it to him.

I'm learning, thanks to my neighbor who works with autistic children, that sometimes these things are sensory related and other times preferences. I haven't had the pleasure of tasting this mother's cooking, but many o' time my son has expressed his distaste for certain foods, while others, for him and the meal du jour (because according to my mother-in-law I don't feed my son) it's an inability to process the smell/texture/color thanks to autism. So a pill wouldn't necessarily cure this issue and might scar this mother's cooking-ego to some degree. Not all of us are blessed with mad culinary skills.

And if there was a pill that would help him be able to navigate simple social situations without anxiety and without the ridicule and torment that I know he will face some day... I would give it to him.

Damn, if there were a pill that cures this aspect for an autistic child, why stop there? Millions of children are tormented in social situations every single day. Neurotypical kids. I was tormented by my sisters. I had my entire 5^th grade class turn on me one fine day for god knows why. Some people are mean. Everyone faces these really, really tough social situations at times. A pill won't cure it. Or maybe an anti-assholery pill for the mean-spirited people (young and old) who think its okay to hurt people with ridicule and torment would. Cure the right problem.

And if there was a pill that would take away the unexplained and extreme anxiety about the fact that the light in his brother's room is on a dimmer switch... I would give it to him.

Dimmer switches are evil. When I want light, I want freaking light. Switch it on, baby. Dimmer switches are for romance and no child is bringing a hottie back the their actual crib. Dimmer switches are also easy to replace. How about demonstrating the human ability of being able to control our environment by going to Home Depot as a family and purchasing a simple light switch? If dear brother needs some night-light, they make those, too.

Plus, they make anti-anxiety medication that helps people including autistic children. There's a supplement called 5HTP, which isn't all pharmaceutical and junk, but something we tried for our son with the recommendation of his doctor (which helped some, but not enough). It's important to have great doctor who knows about these sorts of treatments and who is willing to guide you through these treatment choices. And there are coping skills that can be implemented to help a child live with and learn to self-reduce anxiety. It takes hard work and patience, but eventually you'll beam with pride when you see them practice the skills without prompting.

Combining environmental control, coping skills, therapy and medication can yield fan-freaking-tastic results!! (Now imagine I'm saying that to you like Billy May's ghost for dramatic effect)

And if there was a pill that could help him take the thoughts that he has inside his head and form them into words, without having to struggle, and without frustration and with enough clarity that other people understood what he was saying... I would give it to him.

Normal people have a hard time with this, so I get it. A pill to help self-expression will never, ever be invented. Or will it? I don't know, but this is a human challenge, not just an autistic challenge. Some people are damn fine communicators others not so much. Hell, at times I struggle to convey what's inside my head, just ask my husband. Writing (look, ma, no hands!) is a huge challenge for me and one I was not able to get a grip on until I was 24 years old. I seriously remember the moment I wrote my first coherent essay. I emailed it to my dad, who writes and edits for magazines for fun because I wanted to share my accomplishment. Communication and expression are mastered by very few humans, the average person just squeaks by.

But on the other end, I'm pretty good at deciphering meaning in what said or unsaid. Everyone's skills aren't evenly plotted on a chart, including those with a disability (which are more scrutinized). It's just that with autism, the challenges in communication aren't conventional. Being an a parent of an autistic child, you have work with yourself and your child until… (as Dr. Phil would say) Until the frustration wanes because you've found something that works to help your kid's ability to communicate. (There's an app for that, by the way. There are also specialists, several, don't settle for one that doesn't fit and make yourself a specialist, too).

And you know what? Some people are terrible listeners. The problem may not be the autistic child, but the person they are communicating with—hearing and listening aren't the same. I don't know many adults who are adept at listening. Assuming that the frustration of an autistic child is solely because of the autistic child is plain not fair and inaccurate. Sometimes the listener is a dolt. Listening is an under-developed skill in a large portion of society. It's insulting to me that one assumes frustration with communication is due to autism. (Remember what it was like to be a teenager saying "Mom, you NEVER listen to me"?)

As for me giving my child a pill to cure autism? My kid takes a variety of pills already to help deal with the symptoms of autism, but only because other interventions did not solely alleviate the symptoms to a high enough degree. It's about quality of life. And after getting to know autistic adults through their numerous writings, I don't think I'd give that pill to my kid: The way my child sees the world because of autism is absolutely amazing and invaluable to society because of his interactions with others, because of his honesty, because of intelligence, because of his integrity, because of his innate ability to see and understand what others do not because of autism. The way the world sees him is crap, so who needs the cure, really? Pills for arseholes? Definitely.

Of course, this is my opinion. I can't speak for the other parents whose children are on other parts of the spectrum, but I think they'd agree with my last statement of the last paragraph. 


*normal as in non-child abuser, decent, loving parent

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.