What color is autism?

“Isn’t the sky the most beautiful shade of cerulean blue today?”

I thought he was color blind, because when I asked what color an object was, he would tell me the wrong one. In school, turned out not only did he know cerulean blue, as he told his teacher, he knew the entire box of Crayola 64 crayons! He wore an Indiana Jones fedora for three straight years. He wouldn’t wear anything but tan pants to “look like Indy” for at least two years. When he was younger, I had to flush the toilet for him, he couldn’t stand the sound. He loved water play and would spend hours playing at the sink. He hates to cut his hair. He can tell you more than you ever wanted to know about UFOs, Mythbusters and the latest video game to capture his interest, but he couldn’t tell the librarian his phone number. He cries easily, especially when frustrated, which also happens frequently. He knows what direction he is traveling at any given moment. He notices details that would escape most of us. Like the time they painted a gas station bench…the new color, the old color…doesn’t matter. He remembers. But he can’t recall his math facts. He doesn’t like doing activities that are not of his own choosing, and hates to perform on cue. He cannot eat gluten or dairy without a lengthy side trip to the bathroom. Consequently, he is on a special diet. He still moves snails out of harms way, just as he once did when he was two. He is now eleven.

She yowls like a cat when she is angry. Hours are spent in solitary play. She is very imaginative, creating elaborate worlds in her play, but other people don’t easily fit into her scenarios. She can be very rigid. She likes routine. She has a hard time with transitions, even when it is something she really wants to do. Her self-control, while improving, can be difficult. She eats almost anything, and more than you would think…she is a elfin little thing. She cannot read well yet, and doesn’t so much want to. She must be taught concepts repeatedly in order for them to take. Sometimes they do. She is a sensory-seeker, needing a lot of hugs, cuddles and attention. If she doesn’t get it, she will act out negatively. We call it “getting her pound of flesh” one way or another. Her whole life is a song. Even her voice is a song: a high-pitched melodious voice is used in conversation. Unless she is yelling. She speaks in half sentences. “Want cookie!” She is social, and loves having friends. She likes being in charge. She has trouble understanding changed decisions…she is certain they are lies. If I say something, I must follow through. She has a memory like an elephant, when it comes to things she cares about. She throws the worst tantrums I have ever seen. She is eight.

She loved to swing as a baby. At three, she threw horrible fits. I would have to hold her to keep her from hurting herself and me. In preschool, while other girls wanted to be a mom, she told her teacher she wanted to be a paleontologist. When her teacher expressed confusion she told her, " You know, a scientist that studies dinosaurs. Everyone knows that!" She taught herself to read at three and a half. She was reading chapter books by age five. She was a walking dictionary. She loves Biology, genetics, Latin, Logic. She is very literal, black and white and has a strong sense of justice. She doesn’t always pick up nuances. Interruption of conversations comes naturally to her, but not because she is rude, she just doesn’t get the rhythm of the talk. She understands sarcasm, but doesn’t appreciate it. She struggles with perfectionism, and a lot of anxiety. She taught herself to knit and play the piano. She tries hard to fit in with her peers, but there is always something just different about her. We say she is the “oldest thirty year old” we know. She is fifteen.

Some may say, “Well, sure, that is any kid!” But truly, my kids are like the amp in the movie Spinal Tap . Most amps went to ten. But the one in Spinal Tap went to eleven, “that’s one more, isn’t it? ” And that’s what my kids are…just a bit more.. a bit harder. This is what autism looks like in my house. I have no idea what causes it. I only know I watch my children struggle with it. We are fortunate, I suppose, since the picture I paint you is of high-functioning autism. They all have speech. They don’t spin. Or flap. But it still affects our lives. We walk on eggshells. It isn’t so much a cure I want…as an answer of what caused it, but if you ask my kids, they will tell you they want a cure. They say it is hard to live in their skin. I can see that’s true.

Every day, I see that’s true.

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 Orange County Special Needs Kids Examiner at Examiner.com, a featured blogger at OC Family and her own site, Send Chocolate reflects her passion for her children and autism. t Autism Sucks is her brainchild.

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:
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Informative Booklet for Parents of Newly Diagnosed Children with Autism

When my husband I walked out of the doctor's office with a diagnosis of "autism" for our middle child, I wish the doctor had handed me something like Same Child, Different Day, a booklet I've recently learned about.  The author Jon R. Gilbert writes on the back cover,  "This booklet was written by the family of a child with autism. It is meant to provide a little insight into what you could expect during the first year after the diagnosis, based on our own experiences. Your results will vary."

My husband and I were driving past past the mailbox on our way to "date night." I made him stop to see if the envelop I'd been waiting for had arrived. I opened it eagerly and read through the table of contents as my husband drove to the restaurant. I laughed out loud and had to start reading the chapter titles to my husband to let him in on the joke. Even though we'd been living with the diagnosis of autism in the family for six years, just the titles brought back memories. 

Gilbert starts each chapter with practical information and ends each chapter with a story from their own family. The first chapter states his purpose. "Over the course of the year following Nolan's diagnosis we encountered many situations where we could have benefited from some simple, fluff-free, honest direction. Circumstances arose (and are still arising) where we could have used some insider information, a simple heads-up or a fair warning." Then he dives right in with Nolan's first haircut. My husband and I laughed until we cried because we could have written the same story. And yes, it would've been great to have some insider information or a heads up BEFORE we entered that situation.

Same Child, Different Day is a great source for information when you are first walking out the doctor's office in shock and don't know where to turn first. Gilbert has a few pages defining soon to be familiar terms and concepts. I even learned some new ones after six years of my own reading and research into autism. He provides some well-respected and acknowledged resources by way of websites, books and mailing addresses. He also gives some insight into the lifestyle changes, the attitudes you'll face in public, the meltdowns the child will have and hints at the toll it starts to take on the family.

I like the booklet because it is factual, neutral and still upbeat. The growing awareness of autism being diagnosed in one out of 150 children has made the subject emotional, political, and sometimes, controversial. I respect the fact Gilbert touches on these areas without making you aware of his own opinions. Because of this, I believe this booklet would be beneficial to have in all medical practices, educational settings and organizations dealing with autism, especially for those families first entering into this new and scary world.

The book is reasonably priced and available for bulk rates. For more information contact Jon Gilbert at his website by the same name Same Child, Different Day.

I'm a mother of three children ranging from 7 to 17 years old. I have two neuro-typical children and one with Asperger's Syndrome. I write daily about the "joys in the challenges of Asperger's Syndrome" over at Just Because My Pickle Talks Doesn't Make Me An Idiot.

Calling All Siblings

So much time is spent trying to understand and help our autistic children.  And rightfully so.  They're road is not an easy one.  But, for Just one moment, I'd like to step away from needs of my autistic child and focus on the needs of his brother and sister.  Today, I would love -- and need -- the perspective of siblings. 

I have four equality beautiful, yet uniquely different children.  Two have special needs.  Part of me hates that description because to be honest -- all children have special needs.  But back to my point -- I have one child with Asperger's Syndrome/Bipolar and another with Bipolar/ADHD.

To say our home life is chaotic would be an understatement.  Much time and attention is devoted to keeping the two calm and on an even keel.  This leaves the other two, especially my oldest, feeling the void.

Now, we try out best to take time out to spend individual time with each child.  We've explained the differences in our family, and the fact that fair is not always equal.  But still, I see so much anger, so much resentment building in my teenager.  And this affects not only her interactions at home, but all aspects of her life.  She can be extremely kind and compassionate, but turn around and let loose her anger on anyone in her path.  Yes, I know some of this comes with her age, but there is so much more behind the normal teenage angst.

So I am calling out to siblings -- young, grown, etc.  I would love your perspective.  In your own experience, what worked, what didn't?  Are there things your parents did that helped you better understand your sibling/s? Did you resent the time spent with your sibling and if so, did you grow out of this?

While there is not nearly enough awareness and interventions available for those with autism, the same can be said for their brothers and sisters. I would like to think that growing up with a sister or brother with special needs can create an awareness, an understanding not found in others.  It can give people a greater level of compassion and empathy.  But this does not happen on its own.  So today, I would like to start the process of purposefully molding not just my complicated children, but all of them


I am the mother of four children -- a teenager, a toddler and tween twins. My twins both have their "issues", one with Asperger's Syndrome and Bipolar, the other with Bipolar and ADHD. This means our house is anything but quiet and reserved. I also write a blog, Raising Complicated Kids, that chronicles our experience with our not-so-average family.

Bet you didn't know you were a writer!

It's been a bit since we have posted, but we are still around. If you have experience with autism, consider writing here. All you need is your story. Email sendchocolatenow AT gmail DOT com Together, we can get through life with autism. Tina

Is the CDC quietly revising autism numbers behind our back?

I don't normally do this, but I am linking to the article on new autism rates I wrote at Examiner.com simply because I am still reeling at what I found out. I am having a hard time believing it but the CDC appears to be trying to bury new numbers as to the rates of autism in the US. The rate is now 1 in 100, or 1% of all kids in the United States will be diagnosed with an Autism Spectrum Disorder. WHY isn't this all over the news? Your guess is as good as mine. Read the article. What do you think?

T, who is NOT a Conspiracy Theorist, but is searching for an explanation

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.

A Super Mom I'm Not

This is my first time posting to this blog, so bear with me. Its just that this topic has been weighing heavy on my mind lately and it hit a chord on my blog, so I thought I'd share. -------

Scattered. Space Cadet. Flake. These are all terms I'm sure have been used to describe me. Maybe because over the years I've backed out of more than my fair share of commitments. Its gotten so bad that I now run when I see a well-intended parent seeking volunteers for some good cause.

Its not that I have a fear of commitment, its just that I can never commit. If I do, the Murphy's Law that is my life automatically kicks in and all hell breaks loose. Either there's a meltdown, a rage, sheer exhaustion or all of the above involved. Lets face it, these tend to get in the way of making 100 cupcakes for the school play.

Then I'm left to make that awkward phone call telling the nice organizer I can't do whatever it is I'm supposed to do. This is followed by the equally awkward silence or heavy sigh as the person on the other end of the phone expresses their obvious displeasure with me.

Its during these times that I really wish I could scream at the top of my lungs, "Don't you get it, I have REAL problems here." But since I don't make a point of advertising our situation, there's no way for those in the outside world to know. To them I look like any other mom -- one with messy hair, more than a few extra pounds and no make-up yes, but pretty average all the same.

So, how do I keep getting myself into this situation? Because deep down I want to help. I'd like to be the one helping others instead of the one accepting it all the time. In my dreams I fancy myself the room mom, the cookie mom, the church volunteer. Then my kids could remember their mom as the one who was always involved, always there to lend a helping hand, instead of the one too harried to brush her teeth.

The solution? I have a few ideas brewing. I'm toying with the idea of sporting a sign that reads something like: DANGER: SPECIAL NEEDS MOM. APPROACH WITH CAUTION. Or maybe I can just hand out cards describing our present catastrophe. The problem is, after reading a few lines of what our average day is like, I'm not sure anyone will believe me.

That's what happens when you have children with hidden disabilities. They "look" normal, and for the most part can act normal too. So even if you do 'fess up, many people will look at you in total disbelief. Then starts the minimization. "Oh, it can't be that bad." Or, "honey, all kids go through that phase."

So I think the next Super Mom who corners me in the parking lot asking if I could "be a dear and....." will just be given a link to this blog. Maybe then she'll find a little empathy for my scattered brain. If nothing else, it will give me a good exit so I can wallow in my flakiness in peace.

I am the mother of four children -- a teenager, a toddler and tween twins. My twins both have their "issues", one with Asperger's Syndrome and Bipolar, the other with Bipolar and ADHD. This means our house is anything but quiet and reserved. I also write a blog, Raising Complicated Kids,that chronicles our experience with our not-so-average family.

Autism-Through A Sister's Eyes

Autism, a six letter word here meaning "a neurological disorder that can change lives and wreak much havoc" has taken residence in my home for years. Both of my siblings have been diagnosed with high functioning autism. Autism certainly isn't easy to live with. I share a room with my seven year old sister, a feat that requires much patience at times.

How do you explain that at 8:00 in the morning, you don't yell at the cat to get out of the closet? (Who cares that the cat is wearing a tiara? I'm trying to sleep!) How do you explain that you can't understand someone when they are yelling at the frequency of a car alarm? How do you explain that you are busy and can't play with plastic toys? Again and again and again and...

When they wake up at 3 in the morning because they had a bad dream or they sob their heart out because they miss the cats that died in a fire...when they ask "why God?"... when you yourself ask "why God?" When you meet someone new and they ask "Is she five?" and you say "No, she's almost eight" and it breaks your heart...when she's excluded from a group of kids, and you see the parallels between seven-year-old girls and high school cliques, and big-sister syndrome kicks in which makes you immediately want to go make it better, but you know that, sooner or later, you just won't be there...When you are having a bad day, and she comes up, wanting a hug, and you snap at her to leave you alone, and her face crumbles, and you feel lower than the bacteria that live on bacteria that live on a piece of dirt...And when you apologize and she forgives you like nothing ever happened, that's autism.

And when all is said and done, yes, she still has autism, but she is your sister, and she does need to be loved. Autism is just one aspect of her, not what defines her. And, as hard as that is to remember, it makes all the difference.

Now, if you'll excuse me, I need to go love my sister.

picture of eyeglasses, cc, via flickr, sheepguardingllama

JBug grudgingly admits that she is Tina's fifteen year old daughter (after all, she has to have someone to blame for her DNA) and is big sis to JBear and JBean. She blogs for Geek 4 Kids, (with the younger siblings and Tina) and her personal blog is FlyingLogicMonkeys.

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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Why Can't I Teach My Child Self-Control?

the following is post from my personal blog, dated two years ago.

Trying to teach any child self-control is tough. When you are dealing with a child with autism, there are added challenges. It isn't that they can't learn, they do. It's just that with autism, often learning takes the form of rote scripts that are hard to apply to situations that deviate from the taught scenario. The ability to adapt just isn't there. I tell you this so that I can tell you this story.

Last night, J and I wanted to go out. We don't get a lot of opportunities to do that, because even though I have given birth to the World's Most Responsible 14 Yr Old, let's face it, leaving her in charge of two younger kids with autism is something to question. But last night, my littlest one said that J and I needed to go out. You need to understand that she was falling apart earlier, not so much in a catastrophic way but more in a "I am really whiny and complaining about everything" way. The Wii can do that to all of my children. Hell, it can do that to me!

JBean was trying to convince me that we needed to let them stay home. We were planning on a late movie, so there would only be an hour that the kids would be up. JBug puts them to bed for us. To assure me that I was making the right decision, JBean said:

"Momma, I can do what they taught us in Sunday School today... SPUD.
Self-Control
Pause
Understand
Decide

I can control my self!"

Most parents would be thrilled by this. Instead I took it to heart as my failure. When you homeschool, everything is your fault. I said to to J, "I have been trying to teach her this stuff for years, and she picks it up in five minutes in Sunday School? Maybe I need to send her to school to learn, because she isn't getting it from me. I'm failing." He looked at me and said, "She got it today because you have been going over controlling herself over and over again. Repeat, repeat, repeat. It clicked because of you." My eyes filled with tears, and I spoke..

"That was the right answer."

T, who takes it all too personally

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. She is the founder and editor here at Autism Sucks.

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Let's Talk about Autism and Homeschooling and ..Craziness

Hey everyone! Today I am appearing on Special Needs Kids Talk Radio, so come check it out! 10 a.m. PST and 1 p.m. EST (noon, CST). We are going to talk about autism, homeschooling and what it's like being the "odd one out" in my family. You can listen by clicking on the link, and then the little special needs square takes you to the show. If you register, you can also chat and ask questions for me to answer on air. Come and listen!

From the website:

We are talking to Tina Cruz today about homeschooling her 3 kids and being the only "normal" person in her household, which makes her the strange one. Tina has a great sense of humor, despite her trials and tribulations

This is the first time I have done this, so let me know you are listening. I am terrified bewildered nervous!

T, who hopes I don't stutter and say "uhm..." a lot

Tina is a writer, wife and mother of three children. The two youngest children have high-functioning autism and the oldest has undiagnosed Asperger's Syndrome 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 editor and creator here at Autism Sucks. She is the editor of the Special Needs channel at Typeamom, LA Special Needs Kids Examiner. Her personal blog can be found at Send Chocolate.

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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.

What's it like to have a "normal" child?

I have no idea.

By the word normal, I mean typical. Regular. What you expect to get when you get a kid. The word most people use anyway, whether or not it's PC these days or not...

I'll go ahead and say it: My kids are not normal. I can be OK with that to a point. There are a lot of people that are not normal. I sure don't mean to step on any toes here, so please don't take offense. I am in no way trying to insult anyone or anyone else's kids. But my sweet kids, they are not normal.

I have three children. E (boy) is 11, L (boy) is 6 and K (girl) is almost 2. E has Asperger's ADHD and OCD, L has high functioning Autism and K is speech impaired, very delayed in all areas and though not diagnosed yet, she stims and requires a lot of special accommodating, just like her brothers.

I suppose people feel sorry for me and my husband, but I don't want anyone to. I just would love for people to be more educated about this messed up world of Autism. How there are so many degrees, variations, exceptions, labels, theories, treatment options and it's confusing. It's not just that "your kids are delayed, they act a little strange, they'll outgrow it - hopefully". Not even close, thank you very much.

My kids look completely normal and sometimes you can look at them and would never know there is anything different about them. At first. But E has no social skills and flaps his hands against his legs and in his lap very loudly. He repeats things he heard over and over (yeah, like Rainman). L gets overwhelmed, sometimes freaks out and clamps his hands over his ears and will not take them off. He babbles like a baby in some little babble language he made up and can only put together a few words at times. K still eats baby food from a jar and still drinks from a bottle because she can't tolerate much else or she gags and throws up. She screams and goes ballistic if we go anywhere where there are too many people or there is too much noise.

The two older ones still have toilet issues and need pull-ups sometimes. They ride the special bus. They're in special ed classes. They have almost no awareness of how other kids their age behave, even when they are around them. They get upset and throw screaming temper tantrums if something we see as trivial upsets them. They don't get concepts other kids much younger than them seem to understand. We don't go to movies, the zoo, museums, the beach, the library, Chuck E Cheese,anyone's home or any other place that would be certain disaster should I be brave enough to try to take just one of them there. Too much light, noise, people, excitement, activity, etc. Yes, my kids have had complete meltdowns in public. The first rule that I learned the hard way is: don't make eye contact! When my kid starts up in public and it's getting ugly, I don't make eye contact with anyone! Focus on the child and deal with it accordingly. Yes, people look and sometimes they comment. So? I deal with my kid, not the ignorant person that isn't minding their business.

This is not even all of it. See, this Autism thing, way more than any parent bargains for..

You can't just give kids like this more discipline, or expect them to suck it up and act normal, or try to distract them with a toy or video or something. This is just who my kids are and it's all I know. And as bad as this sounds, please know that my kids are the sweetest, most beautiful babies to me. They are capable of loving us, and each other. They have strengths, skills, and something to offer. They are special and unique. And sometimes, they surprise when they do or say something typical.

I do make my kids behave, apologize when they have done something they should not have, and I am teaching them manners. I will not let Autism be an excuse for my kids to get away with doing anything that would be wrong or cause harm to others..

It's hard for me to relate to parents of typical kids. I will never know what it's like to have a normal child. And I don't know what it is that caused all of mine to have this. And it's not something I can really make anyone understand if they are not going through it themselves.

I hope this blog can help anyone that would like to understand more, either for themselves because they have a child with Autism, or as someone that wants to know more because they don't.

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The Division in the Autism "Community" SUCKS!

It's Autism Awareness Month - can't we all just TRY to get along?
We - mothers (and fathers) of kids with Autism are a community, divided.
I hate it! Hate is a strong word. But, it really sums up how I feel about this. It bothers me. We all have something in common, a child with autism. That should unite us, yet instead we are so very divided. Attacking each other for our beliefs on whether autism was a result of an environmental trigger or vaccines or genetic. Attacking each other for our avenues for our choices in therapies or interventions.
Why the hostility?
I have many many friends who are also moms of autistic kids, like myself. I'm part of several parent groups online and off and I wouldn't have it any other way. Some of my friends are like me and others very different. I have friends who do biomed and friends who don't. Friends who believe their child was autistic from birth & genetics and others who feel it was environmental or vaccines. I have friends with kids on the diet (like my son) and friends who think the diet is a waste of money. I have friends who do chelation and/or HBOT and friends who do not.
Those who know me, or read my blog know that I practice the GFCF diet for my child. I've also shared info on some supplements that he uses. I don't get into nitty gritty on dosages or meds we may or may not use as I don't think that's the general public's business. This past week I reviewed two books that deal with biomed - Jenny McCarthy's new book and LeeAnn Whiffen's book. Immediately I witnessed fallout among my circle of "friends" because I go on record as doing some biomed for my child. How dare I? I've taken a side. I'm Biomed. I'm the evil. I SUCK! Keywords: MY CHILD. Tonight, I am sick of walking on eggshells and trying to not offend anyone. This is my child we are talking about. What you do with yours is your business and I'm not chastising you for making different choices for your child. Keywords: YOUR CHILD.
I've made a point to be Switzerland as much as possible and not cast judgement or throw stones at others for their choices. Yet, I continue to be on the receiving end of stones and I'm feeling pretty beat up. When the community is so busy fighting and at odds with each other over causes and treatment, where is it getting?
Nowhere, and fast.
----------------------------- Hi, I'm hellokittiemama and I'm a mother of 2 very special children, living at the Jersey Shore. You can find me blogging my mad life with an autistic genius and a neurotypical diva, the gluten & casein free diet, vaccination choice, and more... over at The Bon Bon Gazette - because you know that stay at home moms really do sit around all day watching soaps and eating bon-bons. Got Bon Bons?

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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Three Cheers For Poop!

Never in my life did I think I would call my child over to look at my poop. Never. Disgusting, right? Now, we've all taken a look at our own BM's (bowel movements for those that haven't discussed poop extensively in a clinical setting), perhaps been impressed or grossed out, but that's between you and you, and is extremely personal. But how do you toilet train an Autistic child who isn't speaking yet, and rarely makes nonverbal requests (unless you include gesticulating wildly when he catches a glimpse of Rice Krispie squares on the kitchen counter)? Modeling the appropriate behaviour is one way (hence showing Max my poop). Another key part of toilet training for a child with Autism is getting him used to the routine of toileting, even before he is actually ready to toilet train.
Max will be 3 years old on April 23rd. We know he isn't anywhere near being ready to "poop in the potty". It may take him a year or even two before he can manage it. If you think about it, there is a lot required for going the bathroom. If you break the process down, it's no surprise that kids, let alone kids with Autism, find it challenging. We are breaking the process down into tiny steps for Max so that he will gradually be able to incorporate them into his routine. The hope is that when he is ready, toilet training will be less stressful on all of us because he understands what is expected of him.
This is the toileting process as I see it:
Recognize that you have to go to the bathroom
Let an adult know you have to go the bathroom (verbal or nonverbal communication)
Go to the actual physical bathroom
Lift toilet lid, get little toilet seat in place
Pull pants down, pull underwear down
Sit on toilet
Relax
Poop
Wipe bum
Pull underwear up, pull pants up
Get down from toilet
Admire poop (you know you do this, admit it)
Flush toilet
Get up on stool to wash hands
Turn water on
Soap up hands (the soap texture is hard for some Autistic kids)
Rub hands together
Rinse hands
Dry hands
Do a big cheer for completing the process
That's no less than 20 steps! Geez...and we parents expect our kids to get this down in a day? Seems a bit unreasonable, even for a neurotypical kid.
We have reduced the process down to 3 steps for Max:
Change diaper
Put poop in potty, flush
Wash hands
He seems to be fairly comfortable with these steps, and isn't objecting to having his diaper changed nearly as much as he used to. I think this is because he knows that when we go in the bathroom, it is to change his diaper. We are being very clear about what is going to happen by using an activity strip, and telling him what we are doing and what is going to come next. He now reaches for the handle to flush the toilet after we put his poop in the toilet, and then moves to the stool to get up to wash his hands. I need to add a "dry hands" image for him, and also put a picture of a diaper on the front of the bathroom door so that he can either point to it, or bring it to me when he needs a diaper change. This process will not be completed in one day, but it will eventually result in Max being toilet trained. We just have to remind ourselves that this is a marathon and not a race.
One more thing - if you live in Canada, and your child is over the age of 3 years old and has a disability, you are eligible to receive funding for diapers from Easter Seals. With the costs of Max's therapy mounting, I am looking forward to getting help paying for diapers (though hopefully we won't need it for very long!)
Katrina Carefoot is a working mom with two children, her son Max, almost 3, and her daughter Cameron, almost 1. She works as a Marketing Manager in Toronto and writes about Autism, pop culture, and all things mommy at Fickle Feline.

Autism and Girls

this is a repeat of a post on my personal blog from about a year ago..

Not a lot is written about girls and autism, because it is just beginning to be understood. When Hans Asperger first classified it, he thought he had found a boys-only disease. It wasn't until years later that we are finding that more girls are affected than originally thought. The rate for those referred to for diagnostic tests is about ten boys to every one girl. But of those, the rate of diagnosis is one in four. That's one girl for every four boys diagnosed. This rate holds true for both classic and high-functioning autism/Asperger's Syndrome.

In the book edited by Tony Attwood, Asperger's and Girls mentions that one of the reasons that girls are less often referred for diagnosis could be that because girls are naturally more nurturing than boys, they take the "shy and awkward" girls under their wing. In this way, they teach them the social rules.

As a mother of both a boy and a girl with autism, I would agree that girls give more benefit of the doubt than boys do. Girls in elementary school can be kind and helpful to a girl who just doesn't get it. JBug, my oldest daughter had this experience with a friend. She is naturally slow to warm, reticent around new people or experiences. Her friend took her aside and taught her "Embarrassing Lessons," which was really just a way to teach her to laugh at herself and not be so self-concious. JBean has first grade friends that are very kind to her and accept her for who she is, at least at this age. In contrast, JBear has struggled with his peers, who find him "weird" and "obsessed." He often feels ostracized when it really was a matter of just being able to read cues in order to join a game.

JBug's friend also came alongside her and taught her some of what Brenda Smith Myles calls "the hidden curriculum," that is, all of the things that no one ever tells a child, that are considered polite, or kind. For instance, if JBear were to talk about Indiana Jones and as he was doing so, the person he was speaking with kept glancing at his watch and looking over my son's head , think that has happened before? that would be pretty clear to me that the person had somewhere to go and the conversation needed to come to a close. Someone with HFA/Asperger's would not get this reference. He would have missed the entire "non-verbal" conversation. According to a UCLA study, 93% of conversation is non-verbal. So you can see how difficult it can be to interact if you are effectively blind to the social cues!

In my experience, girls in elementary school are much more forgiving of social gaffes. By the time a girl reaches jr. high, it is expected that she will "know" the right things to do and say. If she does not, most girls will distance themselves from the girl who is less socially-savvy. Since girls bond with their "drama," any girl who doesn't play the game will almost certainly be, if not ostracized, just not befriended. I work as a church youth worker with jr high girls (now going into high school). For two years I have watched this happen. The interesting thing to me is that if a girl is more severely affected by Asperger's, they do give a little more leeway, but they still do not count that person as a friend. If a church group operates this way, I can only imagine that school must be even more difficult for a girl with Asperger's Syndrome.

I ran across this article a while ago, about the perils of Asperger's as a female. The information is older, but it bears repeating.

Dr Lorna Wing is a veteran psychiatrist who devoted her career to studying autism after her only child, Susie, was diagnosed with a severe form of the condition. She says girls on the autistic spectrum often appear "normal" at first meeting. "They appear to be more social than boys with autism, but then you notice that their sociability tends to be inappropriate," she says. "They might go on and on talking about the things they are interested in, and they fail to notice that you're not remotely interested. They have a poor ability to 'read' people, and that's something that's often very highly developed in females."from the Guardian

The article goes on to state that it can be difficult in the workplace for a woman with autism, because she doesn't pick up the social cues or display the empathy and understanding that many associate with females. She may face problems because of judgment.

This means that women with autism often struggle at work because they lack what is often taken for granted in women - the intuitive ability to understand where people are coming from and how to manage situations. Because of subtle sex differences, we tend to "expect" more of women in the workplace in terms of smoothing things over, of saying the right thing; and whereas we would excuse a man who lacked these abilities, we are subliminally a lot less forgiving of a woman who has similar shortcomings. from the Guardian

With all of this gloom and doom, sure I am concerned for my girls' futures. JBug has never been diagnosed with Asperger's, but has many traits that come with it, including brilliance, which will serve her well. She is already smarter than I am...shhh! Don't tell her! I believe JBug will be fine, eventually. She will find her niche and her "people"...once the drama from high school stage is finished. She doesn't have time for the gossip or the "immaturity" of her peers. Sometimes she is too serious for her own good. She will land in a scientific community, where Logic is king and Rationality rules all.

My youngest daughter is an enigma to me. JBean has been diagnosed with Autistic Disorder, but is pretty high-functioning. I don't quite know what will happen with JBean. She is content to sit and play with her toys, making voices for all of the Ponies, Pet Shops and Puppy in my Pockets. She makes up long and winding songs about the same. She will often play, undisturbed for hours, if I let her. But she also enjoys cuddling with those she loves, reading (or rather, learning to read) and playing/arguing with her brother and sister. All sounds normal, doesn't it? And yet... there is that certain "something" that makes the autism diagnosis.

She cuddles a little too much, too hard, and doesn't stop when first asked. Her voice is just a bit *too high-pitched, almost baby talk. When she wants your attention she goes from 0 decibels to 999,999 in a split second. We say she has two settings: normal, and car alarm. She is very private about her thoughts, and I don't know if that is because she isn't keyed into them, or she just keeps them to herself. She is very difficult to read, and I am good at reading people.

She is still so young. Who knows what time and training have in store for her? And maybe as we go, more research will be completed that explains more of the mystery behind autism and what exactly we can do about it. I am thankful for articles in mainstream publications that shed light on the issue of girls and autism, but they are few and far between. For now, I continue to work with her, read a lot and pray. I definitely pray.

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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