What are you doing? a cute film about Autism

This short film was put together by Autism Awareness Australia.  It approaches education about Autism through the eyes of brothers, sisters and friends of children who have autism.  A great resource to give to your son/ daughters teacher to show their class.

Do you like Autism Sucks?

Look, we have a Facebook page, could you go and Like it so we get more exposure? As you know, I do this for the community, and not really much else, but I want more parents to know they have a place.

Help me to do that.

Go here: Autism Sucks Facebook page

Tina is the creator and head chick in charge around here at Autism Sucks. If you want to write, just ask! Her personal blog is Send Chocolate Now, because when you have kids with autism, life is survivable, but it takes chocolate.

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We're in with the In crowd.

Here in Melbourne my son and I attended our first World Autism Awareness Day march, from Autism Victoria through the streets and up to the steps of the State Library, on April 2.

For the first time in a long time I could see a difference in my son as he looked around at the mass of people thronging on the nature strip in Drummond Street, Carlton, awaiting the signal to start marching.

I kept a tentative anchorage for him by lightly rubbing his back now and then, to reassure him I was there if he needed me; at one point he actually turned to reassure me that he was fine, thank you very much.

I looked at him and realised there was an inner glow, a lightness and happiness to him that I had not seen in a long time.
It took a few seconds for me to nut it out but it was so simple; he wasn't the odd man out in a crowd for the first time in years.

How often is it drummed into us parents to assist our kids to integrate with neurotypicals, to have them socialise with them as much as possible to get the old 'monkey see, monkey do' happening with social behaviour, yet somewhere in following the rules we kind of miss the message our kids need to know they aren't the only ones who think, process, talk, walk, just plain are different.

He proudly marched with others, he shared smiles and grins, moving out of the way for mothers with prams, returning waves to strangers who stopped to watch and wave to the marchers but the most compelling, the most empowering thing for him that day was to realise for himself that he was a part of a whole community and not just the novelty Aspie geek kid.

Next week he attends his first Aspie teen social support group and he's almost bursting with excitement to just be another face in the different crowd.
Cos the different crowd rocks.

And it will keep on rocking throughout May as Autism Awareness Month in Australia.

Ro is from Australia; she has a partner on the Spectrum and is the mother of a 13 yr old homeschooled Aspie teen studying at University, both of whom have recently given her permission to blog about their challenges with multiple diagnosis' alongside Autism at Get Over It...I did.

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Supermom vs. Autism

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

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

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

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

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

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

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

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

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

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

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

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

T, who just does what she can do some days

Tina Cruz is a writer, wife and mother of three children, two who have high-functioning autism, one who has Asperger's tendencies. She advocates for autism awareness and education, as well as acceptance. She views autism as a growth process and the opportunity to connect parents for support as a privilege. She is the Special Needs Editor at typeamom LA Special Needs Kids Examiner at Examiner.com and her own site, Send Chocolate reflects her passion for her children and autism. t Autism Sucks is her brainchild.

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

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Now we are condoning discrimination? oh, HELL no!

Sorry, I am crossposting this on all of my sites. I simply feel the issue is too important to ignore. Thanks!

You might remember earlier this year about the teacher from Port St. Lucie, FL who had her class vote on whether Alex Barton, a child with autism, could remain in her Kindergarten class. He was voted out, traumatized and refused to return to school. There was a great uproar and teacher Wendy Portillo was suspended without pay for a year with her tenure revoked.

The school board quietly reversed its decision this week..please read the rest here, and trust me, you need to read it.

Tina Cruz is a writer, wife and mother of three children, two who have high-functioning autism, one who has Asperger's tendencies. She advocates for autism awareness and education, as well as acceptance. She views autism as a growth process and the opportunity to connect parents for support as a privilege. She is the Special Needs Editor at typeamom LA Special Needs Kids Examiner at Examiner.com and her own site, Send Chocolate reflects her passion for her children and autism. Autism Sucks is her brainchild.

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Lookie, we have an award

Autism Insights awarded us with this:

And we all share in this award, all of those who write here at Autism Sucks. You all are wonderful, and I am so glad you are here and a part of this.

About the award:

This award recognizes and gives value to:

1. 1.- Commitment to Quality Education.
2. 2.-Betting on the inclusion of Tics [children with tics] in the classroom.
3. 3.-The effort of parents, professionals and educational centers in incorporating the Tics into the educational process.
4. 4.-The struggle to defend, through the Teaching Values like: Solidarity, Love, Affection, Respect, Effort, Aid, Support, Sharing and Commitment, the future of our children and students.
5. 5.-Recognize and value the effort of the families, professionals and educational centers for integrating effective conditions in the schools and in society for the children and special students, gaining them tons of love and allowing them all the resources at our disposal.

You can distribute this prize freely to those blogs that you consider to be working in these lines.

The Norms of distribution are:

• 1.-Publish the objectives of the prize and link to Recursos Educativos (Educational Resources).
• 2.-Publish a list of deserving blogs to pass on the prize.
• 3.-Communicate to each blog rewarded that they have won the prize.

I'm giving the award to:

califmom: she writes about Tourette Syndrome, cancer and homeschooling
Sweet Schoolin': writes about homeschooling special needs kids
Whitterer on Autism: autism blogger and so much more
The Wonderwheel: two blogs on same domain, one about communication therapy, the other about autism.
5 Minutes for Special Needs: group blog about special needs
Thanks for your contributions to the special needs niche. You guys count! Tina

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Some Thoughts on Autism Awareness Month

The month of April has come to a close, and with it ends Autism Awareness Month.

However, so many of us don't have an end to Autism. It is an ongoing, daily struggle filled with accomplishments, setbacks, discoveries, joy and pain. It is a journey, and the topography changes moment by moment. However, it is filled with the most wonderful people you could ever come across.

But we as a community are fractured. Broken. Divided.

Split along lines that should not be there; dividing a group that needs to band together to help our children and our friends and family members gather hope and strength to face our special brand of challenges.

To help us weather this storm.

Here are some things I would like the Autism Community to really think about and consider making changes to in the next year:

• Start thinking about what the future holds for our children on the Spectrum.

  Our focus has been laser-like on the birth-to-three side of the disorder, and you will hear no argument from me that early intervention is key; but in our haste to put all of our eggs in one basket and cure! recover! heal! we have overlooked a large group of children on the spectrum that still need assistance - the Adults. All of these children grow up to be adults, and as they age, the assistance gets less and less. The transition from young adult to adult is equally as important to a child on the spectrum as it is for that same child during early childhood. We need to remember to look at their lives as a spectrum as well, and provide assistance throughout their entire lives.

• Acknowledge that not all children can be "cured" of Autism, and that most are not.

  This is what is fracturing the Autism community and giving false hope to parents. I am not Jenny McCarthy, my child is not "cured", and many of us need to be okay with that. My son is a teenager, and while he has grown by leaps and bounds, he still has challenges that will plague him the rest of his life. We need to be okay with the thought that this is a process. I tell my friends that have read Ms. McCarthy's books (I have as well for purposes of full disclosure) that I would like to see what she has to say in a few years when her son gets older. I think she will find that the "cure" she spoke of in her books is not the permanent one she was hoping for.

• That money has been funneled into the wrong areas for far too long.

  Many parents, myself included, are tired of hearing that more money from Autism charities are being funneled into discovering how this happened and which additives in vaccines caused this. Should we "Green our Vaccines"? Absolutely. Should we change the schedule? Probably. Should we be the only group saying this to the world at large?

  NO.

  We need to find another soapbox that fits the needs of ALL of our children on the Spectrum, not just the ones who get the most air and face time. Not just the younger ones.

  If you are going to Rescue an entire Generation, it helps to make sure you include everyone, no?

• Start building a community; one that serves ALL in it.

  I had the pleasure recently to spend time with a group of kids and their families that cancer had touched in some way, shape or form. What struck me deep in my heart was the bond these people share, the closeness, the support. People from all walks of life, celebrities, sports heroes, all donate time, resources and money to support and care for these families in this scary, rough and expensive time. And they keep on giving and many pay it forward after they no longer need as much help. The Autism community has nothing like this, and quite frankly it breaks my heart. If we had had even one-tenth of this amazing resource to help families share, bond, get assistance, and gather strength and hope; it would be amazing. If this help is available to us currently, it more than likely has strings attached. Strings of "cure".

• Remember that we are not perfect, and that there is so much to learn.

  Take a class. Listen in on a Webinar. Read. Discuss. Tell your story; don't be afraid or embarassed. We need to learn from each other. We need to spread the word. Autism and Spectrum Disorders are relatively new to the world vernacular, and we need to raise awareness. That being said…

• Don't scare people by sending frightening messages related to Autism.

  Don't equate Autism to a plague, or a horrific act. Someone who I follow on Twitter sends out messages about Autism that only confuse and frighten people. Scaring people into learning about Autism only mixes our message even further. There are many people who are coming forward and revealing that they have ASD and grew up during a time when many had no idea how to work with people who had Autism. Their stories are inspirational, and we need to pay attention.

• Appreciate how far we have come…

  Autism has had more air time in recent months than in previous years. That's a good thing. The fact that there are services for our children, therapies and interventions to help our children grow and function in society is something to be proud of. The accommodations in the schools and the support staff to help our children has increased three-fold. It's wonderful to see.

• …but remember we have so much further to go.

  We need to do more. We need to ask for more. We need to demand more. We need to ask for more services. We need to build an infrastructure to support our families who have no idea what to do or where to go when they are just starting down the road. We need to help those still struggling down that road. We need to work with the medical community to build a stronger protocol to get testing and services for our children earlier than second grade.

• So let's get together and feel all right.

  Let's get together on our global message and remember to include everyone, not just the people that fit a particular (cured) category. Let's work together to spread the collective word that while some children see great improvement with different interventions; let's remember that one size does not fit all, and we need to look at the bigger picture for our children. The lifetime picture.

  So, same time next April then?

crossposted on 5 Minutes for Special Needs Shash is a mom of 2 boys, one with Asperger's Syndrome and one we're not sure where he'll land on the spectrum. You can find her tipping at windmills as a Teaching Assistant in an Elementary School. Shash also writes at her home blog, Diary of a Crazed Mommy.

For the Last Time, It's NOT My Parenting (and if you ask again, I'm Going To Throw You Off A Bridge)

It started over tea. She wanted to have a tea party. But she didn't want to use water. That's for babies! She wanted me to make tea. Which I couldn't do, I was helping her older sister with her Algebra. Part of homeschooling is taking turns. Littles, at 7, isn't always good with that. Well, let's face it, she is really bad at it. When it is her turn, she expects everyone else to wait. But make her wait? And it is Meltdown-City. She will extract her pound of flesh, one way or another. Of course, it passed. It always does. But the aftermath for me is the hardest part. The way I am left feeling: drained, defeated, ready to cry.

I suppose I shouldn't be too upset. She hasn't had a tantrum all week long. Her dad was gone for ten days and in that time, she has been fine. We have had a few missteps here and there, but no full blown I HATE YOU I HATE YOU I HATE YOU episodes. Maybe that means she is getting older. Maybe that means the developmental delay that is Autism Spectrum Disorder is righting itself. Maybe that means the naked chanting that I did by melting green crayon and throwing sheets to the wind has paid off. (I am just kidding about that last part.) Maybe it's just that the tide is high and the moon is low. Hell, I don't know.

And that's part of the problem. I don't know. If you ask me a question about grammar or algebra or llama breeding, I can probably tell you. Or, barring that, I can find out. But as far as the exact reason my daughter is tantrumming, or the tried and true foolproof method of stopping said fit, that seems to be missing on Google. Certainly there are suggestions, but what if they don't work? What then? With children, you don't add A to B and necessarily get C.

If I was a carpenter, I would be sure that I have the latest tools, the best ones to get the job done. A hammer will always work as a hammer. A level, well, that's designed for leveling. With just a few simple tools, a carpenter can build many things. With a few more, he becomes a master craftsman. It can take a lifetime to wield the tools correctly. But even if his skill is only passable, he will be able to create a chair.

As a parent, I work hard to develop my parenting skills. I think if had neurotypical children I would be a pretty good parent. I add tools to my toolbox often. They say if you only tool you have is a hammer, then everything looks like a nail. I am guilty of this at times. But a soft word or patience? Those don't always work. In truth, there are times that I run out of tools in my toolbox. I keep thinking if I just gain more gadgets, if I just learn more schematics, I will, eventually, build the Taj Mahal. But with autism? All bets are off. Sometimes, a level ends up as a fulcrum. Or a hammer ends up as a paper weight. Sometimes, I end up dancing around like a monkey because I have to think outside the box. Down is up, and and Left is Right and OhMyGod is it 5 o' clock yet??

I am not a drinker. I have a bit of Irish Cream or Kahlua in my hot cocoa or coffee about twice a month. A glass of wine about as often. And though I talk about it, I just don't do it. There are times I wish I did drink more. Then I wouldn't care so damn much when I reach the end of the toolbox and find nothing but sandpaper and a ball ping hammer. But I do care, and it kills me and I always wonder, why can't I be a better parent? Why can't I help her calm down before she gets to that place where she is completely unreasonable? Why must I be left feeling like a hollow shell with every nerve exposed? What am I doing wrong?

Tina Cruz is a writer, wife and mother of three children, two who have high-functioning autism, one who has Asperger's tendencies. She advocates for autism awareness and education, as well as acceptance. She views autism as a growth process and the opportunity to connect parents for support as a privilege. She is the Special Needs Editor at typeamom and her own site, Send Chocolate reflects her passion for her children and autism. She is the founder and editor here at Autism Sucks.

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Perspectives of a Guilty Parent

Originally posted at Mamabusypants on April 1. Life on the Spectrum recently wrote: "Someone said that they were tired of some parents with children who have autism, painting autism as if it were some sort of cool adventure. Autism is hard, depressing and sometimes unbearable." That resonates. Mr. Busypants has mild autism, which translates into autism is only mildly a pain in my ass. Sometimes I feel guilty about his mildness. I'm stuck in the middle: my kid's not quite normal, but he's also not completely, hopelessly, overly frustratingly autistic. So while I deal with the "autistic moments," I do not deal with them at the great frequency that many others do. Initially, the diagnosis and subsequent transitions from babyhood to toddlerland to preschoolville were hard, depressing, and sometimes unbearable. But now, while Mr. Busypants is in Kindergarten at least, the challenges are not much larger than the average parents' (different, but not more overwhelming). That may change, but I feel privileged to just love his mind and the unique perspective he brings to life. At least for now, I get to see it as a cool adventure. To be honest, I fear my neuro-typical (NT) daughter, Miss Chattyshoes, drama queen that she already is, will be way harder to raise. She already has an opinion about everything. When she really, really wants something, she repeats herself, each time at a higher decibel, until only dogs in the neighborhood and the dolphins at the Brookfield Zoo are able to hear her. I'm constantly being ordered to "sit down mama," as she plants her chubby cheeks (yes, the other ones) onto the couch and pats the spot right next to her. It's often frustrating because there's an endless list of things on my To Do list (like laundry, major clean up, grading, dishes, more major clean up, Facebook), but recently I decided to fall in line with the little drill sergeant. I mean, she'll only be little once. So now I'm getting caught up on all kinds of reading. It's distracting to do my Bible study with Elmo in the background, but somehow I manage. As for Mr. Busypants, well, so far he is wildly navigating the line between having autism and being a regular kid. He has a lot going for him in that he wants to partcipate with others, but he also has obstacles less known to those who are neuro-typical. He's coping with the sensory bombardment that's magnified because he has autism, the obsessive/compulsive need for structure and repetition as he processes the world around him, and the emerging knowledge that he is indeed different. Jeannie Anderson is a stay-at-home mom with two children, Mr. Busypants, 6, and Miss Chattyshoes, almost 2. She is a part time college-level writing instructor at three Chicago-area colleges and writes about the Adventures of Mr. Busypants at Mamabusypants.

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