We Are Part of the Cool Crowd!

(but you can still sit by us at lunch) We have new jewelry in the sidebar! Just found out that All Top has a new autism page, so by all means, check it out! All Top Autism Keep writing you guys, it is getting noticed! And if you are reading and are thinking, "Oh I could never do that..." Yes, you can! (channelled Obama for a minute there) If you are a parent or caregiver who deals with autism you have a story and we want to hear it! Email me to be added as an author for this blog. T, who loves you all

An Open Letter to the Airline Industry from an Aspergian’s (Autistic Child) Mom,

Let me begin by saying my child is not the enemy. Please try not to treat him like one.

My child has the same rights and should be allowed to ride in a plane, your plane, just as the gentleman snoring loudly in seat 3B is right now. Yes, I understand that he’s screaming bloody murder right now. He’s frightened. The pressure in the cabin is affecting his sensibilities. The people talking loudly to each other; the sounds that the plane is making are affecting him. Please don’t keep stopping by and checking his seatbelt every 10 seconds. I can’t help but notice that you didn’t seem to care about the other screaming child in the back of the plane.

Oh? It’s a newborn? Well, can I ask why the double standard? How is it okay for that parent to escape scrutiny, yet you keep harassing me? My child should “know better”, you say? Hmmmmm. I don’t think you understand.

Allow me to explain. Also, allow me to clarify.

Just like that newborn, my son struggles to verbalize his discomfort in social situations. His understanding of this situation in his mind is identical to that newborn back there. I have taken the time and great effort to make sure we have things to make him as comfortable as possible for the duration of this trip, but even I can’t ultimately control his reactions. As his parent, I do my best, just as you strive to do, each day in your job. Sometimes I miss the mark. Trust me, it is definitely not intentional. I did not awaken this morning thinking “How can I piss off everyone my son comes in contact with?” I have much bigger fish to fry.

In the not so distant past, it was customary for a passenger when booking a flight to tell the person who booked the reservation what special needs they might have, if any. This needs to start making a comeback. I am more than happy to let the staff know our situation, and if necessary, things we can do as a team to make this trip as enjoyable for everyone. It may mean enduring some moments that are not so comfortable for a period of time, but the end result might turn out to be not so bad. The best part is you have an opportunity for a learning moment to take place. We can all stand to learn something, wouldn’t you agree?

The worst thing you can do is make me or my family feel like we have done something wrong or inconvenienced you in some way. On every flight (or just about) I’m certain that there is a screaming child or an obnoxiously drunk adult or that one person who can’t wait until the sign is turned off to move about the cabin. I don’t always see a police escort waiting for them at the airline terminal, so why single me out? It’s because autism is such a hot topic, isn’t it? Or, is it your lack of training and understanding of the situation? Please help me to understand.

My family is not your enemy. Please try not to treat us like one.

Lets’ try to work together to keep those skies as friendly as we can. I’m game if you are.

Sincerely, CrazedMommy

Shash and her family fly the not-so-friendly skies rather frequently. They have the miles to prove it. She has two amazing boys, one with Asperger's, a form of high-functioning autism, and in her copious amounts of spare time is a Teaching Assistant in a special needs classroom at an elementary school. Read more about her life and family at Diary of a Crazed Mommy. This is her first post here at Autism Sucks.

We're Still Married?!

"So what is the rate?" She inclined her head towards me. I swallowed, stalling because I didn't know. I knew it was high. I looked at her and said, "Not sure, but I know it is higher than the national average. That's just over 50% now." So I decided to come home and google up some actual figures. There is no question that raising a child with autism, even high-functioning autism, is a challenge. It is a challenge financially, emotionally, spiritually and attitudinally. It is an entire paradigm shift. Like living with a duck who wants grapes...all the time. It isn't hard to feel at your wits' end ..often. Many times J comes home and I just have nothing else to give. I am spent. Absolutely worn out, and not able to give to one more person. And who gets the short end of the stick? You guessed it: J does. And yet he rarely complains.

As I write this, he has sallied-forth on a mission of mercy. Yes, the kids are tucked into their beds, and he has gone to procure Starbucks mocha, the nectar of the gods. He knows foreplay. Or maybe he just knows how to keep me sane. Since life can

often be a war zone, and I, crawling over enemy lines without hesitation (okay, maybe there is a little hesitation) a medic on duty is necessary. That's where J comes in. I guess it works because we take care of each other. We get along well, and well, we don't really have to work at it. Which is good, because there isn't much time to work on much of anything in this house, not the way the littles behave. We can't take on anymore.

There is a reason we have cats. Cats are independent, don't mind if they aren't the center of attention and often prefer not to be. We don't have a dog, though I would love one, and maybe someday soon, we may take the plunge. But I don't have the time to devote to puppy training and walking and just being generally slobbered over and followed around. I get that enough. We would probably kill a fish, forgetting to feed it. And you don't want to see my yard. When we moved back home after the fire, we decided to do our own gardening. But me, in my infinite wisdom decided that we would do the Green Thing and not use poison on the lawn to kill the weeds. And, did I mention that I now use a rotary mower to save the environment? Unfortunately, it is now my lawn that needs salvation.

Lacking time, I haven't done the requisite internet search for nematodes and other magic organic fixes to protect my lawn from the weedie beasties. Consequently, my lawn, which of course, someone forgot to water, is now brown with green things bobbing in not quite a sea of crabgrass. We do manage to get it somewhat mowed, but it seems to be a losing battle. The flowerbeds are overgrown, and all good intentions to clear them and plant something gave way to a brochure left on our front stoop about code enforcement and happy neighbors. We don't know which one of the wonderful residents of our 'hood left it for us, but there it is.

And my answer? You try mowing the lawn when you have a 6 yr old in the middle of a screaming fit for who knows the reason (sometimes, there are no reasons) and a 9 yr old being defiant and refusing to do anything except repeat, "Can I have a cookie? Can I have a cookie? Can I have a cookie?" And this after being told, as I am wont to do: "Question asked and answered," ad nauseum. And amidst this, I will take time to mow the lawn? What planet does the anal neighbor with the perfect yard and the perfect teens (only they aren't because I see them on the corner) who mows his lawn and trims his plants nearly every day...what planet is he from?

So, there is little time left to work on things like marriages, or dinner reservations or breathing. So it is a very good thing that my marriage is usually so easy. We figure we survived a fire, when the house was completely smoked out, everything was destroyed and we had nothing but each other. We survived the insurance settlement and the rebuilding process and the redecorating and even the relocating. Autism after that? Cake.

In any case, I came home and found the figures. According to a few online sources, it is over 80%. Dr. Phil even pegged the rate at 86% if you can believe it. 86% of marriages amongst couples who have a child with autism end in divorce. So, since we have two children, does that make our rate higher? In fact, statistically, we aren't married at all! Yay, we are living in sin, and have been for almost 19 years! (Then why aren't we having more fun?)

TLC feels very lucky to still be married after all this crap. She has three children, two with high-functioning autism, she homeschools and is still mostly sane. She views autism as a growth process and the opportunity to connect parents for support as a passion. Read more of her misadventures at Send Chocolate. This blog is her gift to the Autism Community.

Flailing On The Fourth

I am not a mom who takes this whole "Asperger's" thing lying down. I am not an advocate mom like some of the really great mom's I know. I need to get out there and do that. I just haven't been in the pool long enough to get in the deep end just yet. I am a mom however who does not tolerate any garbage when it comes to people dealing with my kid. 

The Fourth of July is one of my least favorite holidays. I know that you probably think that is all "UN-American" and horrible, so sue me. Seriously though, throughout my life it has proven to be crazy. If it was not spent in the ER for hives, pink eye, or some other freaky ailment that I managed to catch at a summer barbecue, something weird happened when we were out at some big fireworks display. (For example my springer spaniel ate an ENTIRE CHOCOLATE TEXAS SHEET CAKE in my grandmother's kitchen. When we got back to her house we thought that the dog was dead. She wasn't. She was in a sugar coma for three days.) 

With Bacon and his Asperger's the Fourth has been less than fun. When he was two he was so terrified he screamed for two weeks every time we went out side about the scary fireworks. It was SO MUCH FUN. Last year he had a great time with the other kids watching Mr. T and the other dads blow stuff up. This year sucked. There were way too many kids most of whom know that Bacon likes to watch the fireworks but doesn't like to touch them. Still these same kids kept pushing and pushing for him to touch them. 

Finally when the neighborhood's biggest pain in the butt (She is 12, she has two pet GOATS, and knocks on everyone's doors at 9pm looking for someone to play with.) was chasing after him with a sparkler and trying to grab him I lost it and yelled at her. 

"EMILY! Leave him alone. He is four, he told you he is afraid of the fireworks, and if you don't stop I am going to have to ask you to go home." 

She of course ran to her dad and cried like she was 4, and her dad gave me the stink eye.  I could have cared less. She is OLD ENOUGH to know better. He is old enough to know that she should not be chasing after a little kid with FIREWORKS, especially when that kid is freaking out. 

I am mostly frustrated because there is another boy that lives close to them that has Asperger's that they treat with kid gloves. Not that I want them to treat Bacon like that, but I also don't think that I should have to staple a sign to his forehead reading "PLEASE TREAT ME NICELY AS I AM NOT NEURO-TYPICAL" 

Was it not obvious from him freaking the hell out all not? Was it not obvious when he was running in circles and smacking himself in the head? Or do people think that is normal four year old behavior? It had me freaking the hell out, and I had taken two Xanax and drank some wine! 

How do you handle this? What do I do? I know I can't forever bully all of the nasty kids out there. (Although technically I didn't bully that little snot.) I just don't feel like I have the right answer or any control. So now as an adult the Fourth of July still sucks, but for a whole new reason, because I can't keep my son safe or under control. 

*My name is Faith Tantrum. I am a 31 year old mom to a 4 year old son who was recently diagnosed with Asperger's. I blog almost every day at Momma's Tantrum about our life with Asperger's, Coffee, the crazy antics here, and more. I do have a fierce potty mouth so if you are easily offended, just cover your eyes and hum loudly!*

The only thing that you know for certain...

The only thing that you know for certain is uncertainty. I never know what each day is going to bring. I'm Becky. My son was diagnosed Autistic at age 2. I thought he had a speech delay. Imagine my surprise. I can't wait to bring my whole story to the table. Autism affects each and every one of us on such a core level. It effects our families and our lives. It changes the dynamics of everything we've ever known. Our hopes and dreams have to shift, that really is the bottom line, the bottom line that most people don't talk about. The bottom line that I want to talk about. When you are a little girl or boy you really don't think about what it will look like when you grow up and are raising a special needs child do you? I know I didn't! I do think we were given these children as a gift and they are precious souls. I am in the middle of a legal situation. The opposing legal team has found that they seem to think it beneficial to watch every move I make on the internet (with it being a public forum) so that they can possibly use my sons disability in the most shady way possible. Excuse me while I go vomit. It's a sad day for humanity. They have already submitted pages from my blog into the case. So with all that said I must wait this out with a patient mind and tongue before I share my whole story. I love statcounter by the way. In the interim please feel free to visit me over at *Self Induced Chaos*. After all is said and done I will be able to write without fear of saying something that could be held against me? The opposing legal team still managed to find whatever they found to use though. My friend said it best: Seriously Bec, I think you have a class action civil rights lawsuit here. And know why? Because our litigious society places health care (including mental health) in a freaking capitalistic system where you have to be a CONSUMER who can shop wisely – to the point that insurance companies have said they will fight, tooth and nail to keep from paying out damages, no matter how much integrity they have to lose, how many lives they have to f*ck around with in the process.

Question for Authors and Others

Friends, and prospective authors...I was thinking we could add a bit of a bio and a link to your blog at the end of your posts. That way, it gives you a bit of exposure. Let me know what you think.

T.

Supermom vs. Autism

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

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

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

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

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

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

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

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

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

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

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

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

T, who just does what she can do some days

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