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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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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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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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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Obama On The Special Olympics Bowling Team: My Two Cents

On the tonight show several days ago, President Obama made a joke. A joke that he undoubtedly quickly regretted. A joke that probably did not even register on the radar of most of America. But, a joke that engendered a strong reaction from many in the Special Needs Community. I have read many posts about the President's gaff. I personally was not offended and tend to give people the benefit of the doubt when they make an honest faux pas. I do, however, respect that there are people who were offended or hurt by what he said. They are entitled to express their opinions and feelings on the issue. My personal fear, however, is that some individuals are using the President's mistake as a license to rant about Obama as a person(i.e, making assumptions about his level of sensitivity and his overall attitudes) thus diluting the REAL societal issue. The man put his foot a bit in his mouth, no question. However, I personally feel his joke was not made with malice or intent to harm. I have no issue with accepting his apology without asking him to prove to us HOW sorry he truly is. A sincere apology, for me at least, always suffices. Really, this is not an "Obama" issue, but a societal issue. Namely, the normalization of certain words and jokes that devalue those with cognitive/intellectual challenges. Until the people in the 'Special Olympics' and on 'the short bus' are seen as human beings with VALUE in our society, nothing really will change. Many a punch line has been made at the expense of the cognitively challenged. Derogatory language regarding differently-abled individuals has become ingrained in our culture's common vernacular. Words like 'moron' 'idiot' and 'that's retarded' are common slang as are one-liners about 'riding the short bus,' or equating someone's abilities to "Forrest Gump." We scarcely give it a second thought, until someone we love is the one ON the 'short bus.' It is then that such comments take on a whole new meaning. When such slang or joking references are made, whether by a public figure or a friend, there are 2 roads that we can take. We can take it as an opportunity to stand on a soapbox and lecture on how and why we are offended. Or, we can create an opportunity to educate, enlighten, open dialogue and share pieces of our lives that help others empathize. To spread awareness. Awareness occurs on a grass roots level; planting seeds every where we go. Just as important as what we say is HOW we say it. Raising awareness can not truly work in harmony with finger pointing and personal judgements. We need to recognize that most people have little to no personal experience with people who have special needs. If someone comes across as lacking sensitivity to the issue, they need to be met with understanding and education, not criticism and a laundry list of how they are a horribly insensitive human being. Our first priority is to spread awareness, not moral outrage. What we are dealing with is an issue of ignorance (in the true, Webster's definition of the word) not intentional malice. And the best eradicator of ignorance is education. We are called upon to raise awareness. Awareness is best achieved by telling our stories, one at a time, in any venue to whomever will listen. People don't want or need to be lectured. They don't want to feel like we're humorless. They don't need to feel humiliated and infantilized for their unintentional mistakes. They don't want their motives to be judged with undeserving harshness or have assumptions made about their character. So, what do we do? Ignore it? Laugh with them? Accept it? No. Spread awareness, but awareness free of negativity. Not focusing so much on why we are offended, but on humanizing the lives of those with Special Needs and the people who care for them. We plant a seed when we share, one at a time, and awareness begins to grow. Let us spend less time judging the hearts of others and more time sharing our own hearts and experiences. Free of stone throwing. Free of character assumptions. Full of love for our daughters and sons who we are defending, suppressing the urge toward righteous indignation. Raising awareness is our task. Let us do it with thought and sensitivity; choosing our words with the same care we expect from others. Let us not forget that fairness and forgiveness are two-way streets. Alicia D. has a doctoral degree in Clinical Psychology, is the stay-at-home mother of 4, and her eldest has autism and other disabling conditions. She has upcoming publications in Today's Caregiver and Autism Spectrum Quarterly. She blogs about motherhood and life on Welcome To My Planet.

Coming Home

Today was the third meeting with our architect as we continue the initial stages of building our dream home. Interestingly, at this meeting there was cause to disclose my eldest daughter's special needs as we discussed the functionality of our house plans for our kids. At the end of our meeting, the architect shared with us that he too has a special child. It is always amazing to see the shift in relational dynamic that occurs when two people, almost strangers, share this one bit of information. Suddenly, doors open into each others' lives and mutual understanding and empathy flow forth. As a parent of a child with special needs I notice an unspoken camaraderie, or a "Club" so to speak, with other parents in similar situations. No matter what the diagnosis or functioning level of your respective children, there is that immediate bond when you hear another parent's story or see them struggling at a restaurant or store with a child that reminds you of your own. An instant understanding. A deep connection. It crosses oceans, creates bridges, connects continents, transcends dialect, race and creed. It is unspoken pain, unspoken love, unspoken relatedness. I wonder sometimes if we parents, as a result of not quite "fitting into the norm," are trying to find and/or create some kind of community within the larger society. A community where we don't have to explain ourselves, where our child isn't stared at or worse - NOT stared at (you know, when people too politely avert their eyes). As the mother of both a "non-typical" child and three "typical" children, I always have one foot in one planet and one in the other. Dual citizenship. I straddle the galaxy and it never ceases to amaze me how both close and far away these worlds are from each other. The ability to live 2 parallel lives poses challenges as well as offers great reward and a sense of balance to a once lopsided existence. My oldest, afflicted with serious seizures at 4 months of age and diagnosed with Autism and "Mental Retardation" at age 2, was my only child for 10 years. For a decade I was a Mom, but didn't feel like I could relate one bit to the mothers around me. My life was filled with Physical, Occupational, Speech Therapies, private and county intervention, music therapy, neurologists, endocrinologists, cranial sacral therapy, secretin infusions, DAN protocols, visits to specialists, travel to conferences, and thousands of hours logged onto the Internet researching and on my knees in prayer. I was not on Planet Typical... the planet of regular Mommies doing regular parenting things, but rather orbiting in its atmosphere, desperate yet fearful to land. It's interesting because I have met some of the most wonderful people in the line at Baja Fresh, in an ice cream parlor, or by visiting each other's blogs from hundreds of miles away. We have crossed paths and bonded through the gravitational pull that draws special needs parents toward each other. I think when we meet someone who travels our path, who prays our prayers, who picked up the pieces of our same shattered dreams, who rebuilt our same new dreams, who revelled in new joys, who feel our pride and rejoicing, who cry our tears, who live on our planet, we breathe a sigh of relief. The relief of not needing to explain ourselves or our child's different behavior, appearance, or needs. The relief of speaking our own language. The relief of not having to give explanations. The relief of being released from orbit, even if just for a little while, and feeling the warm soil of our Homeland. Alicia D. has essays to be featured in the upcoming issues of Today's Caregiver and Autism Spectrum Quarterly. She can be found blogging about raising her four girls, one with Autism, at Welcome To My Planet.