Sunday, July 27, 2008

Sick of It

We have been to 2 parties this weekend. 1 block party and 1 birthday party. We stayed for about 3 hours, because that is about all I or Bacon can handle. He played and ate and had a good time, and I was able to have some semi normal conversations with other parents. 
The coming home part is always the part that stinks. It is the part that ends with me hauling his 45 pound body home while he is screaming and flailing, then carrying him to his room to get him to cool off. It is the part that happens before Mr. T comes home. It is the part that has gotten so bad, I am physically ill. It is so bad that I really don't want to go anywhere with him anymore. 
I am sick of the weird looks. I am sick of the questions. I am just sick of it all. I am tired of fighting with a child who only wants to scream at me when he doesn't get his way. I am tired of fighting with a child who doesn't understand that it just isn't that way all the time. I am tired of throwing up from it and I am tired of feeling guilty for it. 
What advice do you all have? What techniques work for your Aspie? What books have helped you cope with this? What support groups have you joined? Do you use counseling? What works? Mr. T doesn't get it, and he isn't here 24/7/365 so he couldn't possibly get it. Those of you moms who are in it do get it. Help please. 
*My name is  Mrs. 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!*

Thursday, July 24, 2008

On the Michael Savage Controversy

Most of us know what Michael Savage said about autism a few days ago. I am not going to recap. I am also not going to blog my reaction to it, because it is, predictably unfavorable. But men like Savage expect an unfavorable reaction. Press, good or bad, is what drives ratings. So, I would like to encourage you:

Don't Feed the Trolls. Even the highly-paid, syndicated radio ones.

Do you remember back in the day when posters would pop into chat rooms or BBS systems, say the most inane things and try to start a fight? Remember what we used to say? Don't feed the trolls. If they don't eat, they leave. Given no one who will rise to their bait, they have to go elsewhwere.

It's the same with Michael Savage. What he said was savage. And he will say worse, he always does. But don't fight him.

Instead, target his advertisers. Get him off the air. Without his radio platform, he will just be another loudmouth shooting his mouth off about what he doesn't understand. But, then, so is a quarter of America. The difference is, they don't have a forum in which to do it.

So I say again. Don't talk about it. Don't blog it, just act. Boycott the advertisers and get rid of this man once and for all.

This list came from here, so make sure go and give him love for compiling this.

A list of current advertisers and their websites

Digital Media Inc., U.S.A.: Nevada State Corporate Network, Inc.: Roger Schlesinger, the Mortgage Minute Guy: Effectur: Geico: Home Depot: Wachovia: Gold Bond: FreshStart America: Heritage Foundation: Breakpoint: [Link removed; see "Breakpoint Responds Re: Michael Savage] Debt Consultants of America (snail mail and phone number listings): DirectBuy: [See " Responds Re: Michael Savage"] WebEx:

T, who says, house elves are ok to feed

T. is a writer, wife and mother of three children, two who have high-functioning autism. She advocates for autism awareness and education, as well as acceptance. She views autism as a growth process and the opportunity to connect parents for support as a privilege. She is the Special Needs Editor at typeamom and her own site, Send Chocolate reflects her passion for her children and autism.

Tuesday, July 15, 2008

Stupid test scores

Warning! Major Vent! So Dino Boy just finished first grade. He had to take a test. The NJ Pass...I hate tests. Well, I don't hate tests, I liked school. I loved college and learning and tests- well, cause I was pretty good at telling the teacher what they wanted to hear- I got A's and even became a teacher. But now, I hate tests. I remember, vaguely, the week that Dino Boy had to take this test. He was nervous, scared even. But then they decided not to give him the test with the class. He got to take it on random days with the school counselor. He was still nervous of course but he didn't know when he was gonna take the test so he couldn't panic ahead of time. I thought this would help him. I didn't focus on the test. Just try, hell, just try to sit. That is all I care about. Please Dino Boy be happy, don't panic, mommy doesn't care what the test says, I know you are brilliant and no one in the world knows more about dinosaurs than you, just, please, BREATHE. And that is what I am telling myself now. Breathe. I am used to high test scores. I got them. My ADHD brother who flunked out of every class still ACED every standardized test that was put in front of him and to be frank he (Uncle Frog) is the smartest person I know. So Dino Boys scores? He did better in math than language arts. I knew that. He hates to read. He can't scan, his sight words are just gone, I try to review and get him to read but making him sit at the table is more than half the battle. ( We are working on this and hope exists) But still on the NJ pass overall scale of 1,2,3, he got a 1 Basic. Minimal skills... some areas better than others but none were really, well, passing. Language arts. worse. Basic again, but this times in ways that I really don't get. I mean, he can recite a story to me tell me details days later. But he couldn't recite for a test? Was is that boring? Could he not fill in the bubble? He loves to be read to, he may not sit for it but it all gets in there....what happened? I don't know whether to cry or throw the f*c>ing test out the f*c>ing window or say that Its ok, this was pre IEP, pre summer occupational therapy, pre my Asperger's book binge, pre internet support group. Next year he will have the same teacher(not yet sure if that is good or not) , an aide, speech, in school OT, maybe out of school OT too. Should I care? Does school just want to make you bang your head against a wall--hard? Thanks for Listening- Eile The rest of this rant continues on my blog. It goes more into fears that I am not yet sure that you all want to hear. So feel free to read the more rambling uncensored version over there. Going Down Laughing

Friday, July 11, 2008

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

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

Thursday, July 10, 2008

I Love You

Having an "Aspie" means that you come to know certain things. You learn quickly that they use the same phrases repetitively. It is part of that whole routine thing that helps to soothe them. I think it also is part of what some experts refer to as "scripted speech" - meaning that they hear this and then use it because they think that is how you are always supposed to talk. 
My Bacon uses "scripted speech" a LOT. Things are DEELICIOUS, and he always has a GREAT IDEA. Often THAT'S NOT SAFE, or NOT A GREAT IDEA. His newest (and my favorite) is What I was probably thinking is...
He does say "I love you" but only after you have told him that first. He gives hugs and kisses and "Eskimo kisses" (which he calls snuggles) at free will. He will gladly tell you that he misses you or missed you when you were gone. He is vibrant and wonderful with language, but still never just says "I love you momma."
I am okay with that. He is still little, and it is a hard concept to learn and grasp and get. Maybe he will never be the first to say it. That will be okay. As long as I always tell him, and he knows long after I am gone that he was my sun, moon, stars and everything and I loved him with every fiber of my body and soul. 
Then before he left to go to Crazy Aunt Ethel's on Monday he ran inside to give me a hug and a kiss, he threw his arms around my neck and whispered in my ear "I love you momma. I love you more than the sun and the moon and the stars." 
I cried when he left. Not because I was sad, but because finally my little man said the words that I thought that he would never say first, that he loves me. 
*My name is  Mrs. 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!*

Wednesday, July 9, 2008

Camp Struggles

My eldest son is 7. He was diagnosed with Asperger's just last December, just on the cusp of his 7th birthday. We had known something was up for years but couldn't put our finger on what it was or how to cope. We bought books about ADD, ADHD, OCD, graphomotor dysfunction, even Autism and Asperger's but we didn't KNOW until we traveled 3 hours to a specialist, not covered by any insurances, who charged $500 to actually sit with our son and figure it all out. --and then a second $500 to help us figure out what to do with the information. But he was worth every penny. It was a relief to know the name of this thing that controlled our lives. The thing that had become so big that a question like "What accommodations do you make for your son?" had become unanswerable because...didn't everyone live like this? Joey got thrown out of no less than 3 preschools. He was "removed" from the private kindergarten that was supposed to be "WONDERFUL" after only 3 days. He was a "disruption" because he told the teacher that the year 2006 shouldn't have smiley faces in the zeros and then insisted that she remove them. He wouldn't stand on the 7 on the carpet because he was NOT 7 years old. And he loved to turn the air conditioner on and off because he loved to control the movement of the air. Taking him out of that school was that start of a great change in his life. Two willing teachers and an IEP later, my Dino Boy is doing fairly well in an inclusion classroom. I just wish that everyone could see the brilliance that exists in between random acts of eating things that are not food and his stimming habit of bouncing round the room stretching his fingers in all directions. So this was about Camp right? Dino boy and Little Man (see my other blog for that story) go to a wonderful YMCA camp. Little man loves it and Dino Boy went there for part of the summer last year too. So I was very surprised when after ONE WEEK they called me. "Ummm, Ms. Eile, We would just you to know that we are giving you warning that Dino Boy may not be able to stay at camp this summer." Now what? I,single working mother am...screwed. But we talked. Camp talked to me, I talked to ex husband. We spent the weekend talking to Dino Boy about staying with the group, not eating things that are not food, asking for help, telling people that you are frustrated instead of running into the woods, and Dino Boy got it. He really really did. And according to camp he does great, until about the time when there is 2 hours left in camp. He can't hold it in any longer. He struggles so hard to keep it together that on some days those last 2 hours cause him to overload.... And I don't know what to do about it. I KNOW KNOW KNOW that he is doing the best he can, He loves the camp SO much. We had parents night tonight and he just gushed about every activity. But I wish I could just give him a break. A place where he can lose it and still be ok, a place where he can run and play and plan his Jurassic Camp movie and just be loved. So next year...maybe I can find a special camp just for him and people like him...but is that the right choice? or should I just immerse him in "normal" teach him to swim like all the other fish? I don't have something catchy to end with...just an open question I guess. When you have a high function kid, what do you do? Should I constantly challenge him to move up or let him just coast during the summers? He gets so stressed. I just feel that its not fair but when he grows up he is going to need to deal with the outside world. Do I teach him to do that now...or wait just a bit?

Every Picture Tells a Story

The Hubby, Scamp and Spiff. My fellas.

This photo is one of many hundreds of photos taken over the course of a family trip. Can you spot which one of my children is Autistic? To an untrained eye, it is rather hard to tell. Both of my boys can be rather well behaved in public places, but then there are those times; the ones where Spiff starts flapping his arms or waving his bracelet around. These moments usually happen in more crowded spaces. Not long after this photo was taken, we boarded a Green Line T train in Boston full of people and he began to flap his hands wildly to calm himself in that situation. While it attracted many stares and puzzled looks, it helped him relax. It's incredibly important for him to be comfortable in any situation, and he has learned how to calm himself in just about any kind. It's been a long road, and we're still on it.

The other day I was going through our family photos as I was transferring them from one computer to another. As I glanced at photo after photo of my kids, I noticed there were so many of my son in a group or family photo where he doesn't look at the camera, or is sitting just a touch away from the rest of us. Or both in the same photo. There were more than I realized. We chalk it up to one of his many quirks, and we are fine with this one and all the others. Other people might look at these photos or us when we take the photos and think he is being rude; but he is not. He might look uncomfortable and like he doesn't want to be a part of the "moment", but deep down inside he does. He really does.

He's just being him. Beautiful, beautiful Spiff.

Monday, July 7, 2008


I know I titled this post 8:30 pm, but the story really starts around 6:30pm--every night. That is the time when I, single mommy extraordinare, starts the bedtime routine for my 4 year old and 7 year old boys. First, I announce that this is the LAST tv show of the night. Dinner is over, dessert has been eaten and we need to agree to the last show. Sounds easy right? Sometimes its blissful. Little Brother says "I want to watch (insert Backyardigans, Sponge Bob or Crashbox here) and Big Brother happily agrees...other nights, not so much. Fighting ensues mom breaks up said fighting through compromise, computer, distraction... or insert bad parenting decision here. Step two, 7pm - Bath time. Frankly, to be honest, I LOVE bath time. No TV. I have the kids hostage. They tell me about their day, we laugh, make jokes. Its great. EXCEPT when they are fighting about the water temperature, or who gets to sit by the water, or which one gets their hair washed first. I used to pick which child went through the water torture first, but they hated that. I decided to that I would let fate control this choice, so I started playing the number game "Pick a number between 1 and 10" and whoever was closest would get to pick if they were first or second. But I found that I would cheat! I would think of the number after they had guessed in an attempt to alternate children....this failed miserably. So tonight my wonderful, thoughtful older son, Big Brother (BB) just offered to go first! Mommy loves him so much, sometimes he is so giving and rational and well, just wonderful. Then story time- 7:30. Story time can also be wonderful. My boys are great. They think outside of the box. Today we read a Little Critter book about going to the museum and then they proceeded to design their museum, for your information the Planetarium will be upstairs...their is no other option according to BB. Then we sing songs- they make me dance and they improvise sounds in between the verses. 8pm Hugs, Kisses, Goodnight....or NOT Post bedtime activities BB- "Mother don't you know I stay up for HOURS!" and he is right, he does stay up for hours. First, with LB still awake, we go potty (again) get water (again) The scariest words I get to hear from BB- "Mother, You don't need to tuck me back in. I can do it myself" uh-oh TROUBLE So I check upstairs...and this is literally 3 minutes since I left the room. BB "Look, we are building a temple" and he is, complete with buildings, dinosaurs, dragons and other toys that have resided in the toy closet, untouched, for months. "Please don't take it down....Your not mad are you?" "No, not mad, just go to bed" Minutes go by, I hear doors creaking, cabinet doors slamming, I go back upstairs...BB says to LB "See, you made mother come back up" oh yeah, I have to mention this here. Where did this mother thing come from? I was Mom or mommy up until a few weeks ago- then Mother, Mother, Mother. I asked why and BB said- "Your my mother" Logical yes, but I wish I still got to be mommy. So where are we now...8:33 and things are quite...maybe.. Last night when I took out the garbage and 10pm I came back in to find a screaming BB asking where I had how long does he stay up? "Mother don't you know I stay up for HOURS!" So I am Eile, I have just started blogging here and at my new blog Going Down Laughing. I am a single mom with two boys, a 7 year old Aspie and a 4 year old child that thinks he knows everything. We laugh a lot in my house, and I hope that my writing gets funnier with time.

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.

Saturday, July 5, 2008

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!*

Thursday, July 3, 2008

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.

Wednesday, July 2, 2008

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.


Tuesday, July 1, 2008

Supermom vs. Autism

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

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

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

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

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

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

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

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

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

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

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

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

T, who just does what she can do some days