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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A way to help community member, califmom

One of our authors here, califmom, has been dealing with a difficult family crisis, for those who don't know: her husband has cancer. It's bad. SO MANY have asked how to help Leah and Bob, and this is the first thing we can do:

We can give. I know, I know..the economy. But. Every little bit helps. Can you find any amount? Not going to insult your intelligence to tel you to give up your Starbucks or any other thing. You know what you can afford. Do what you can.

Childhood friends of Leah's aka califmom, have started a fund to help the family with the expenses that come with Bob's illness. Insurance doesn't cover it all, and added expense of eating food out, keeping kids occupied... well it all adds up. So. Here is what we can do (posted from Michelle's facebook account):

Bank of America, Nevada
Account Name: Norling Family
Account #: 501008379041
If you're making a deposit in person, you must have the account number. BofA can not look it up for you, even if you have the account name.

If you would like to handle your donation by mail, please make your check payable to the Norling Family. Remember to write the account number in the memo portion and mail it to:

Michelle Wolfkiel
P.O. Box 193
Minden, NV 89423

She plans to make deposits on Fridays and balance updates will be available on Michelle's facebook account.

From Michelle:

Not going to worry about thank you's right now, but we will make every effort to keep track of everyone's name. Thank you all in advance for your love, prayers, and generous support of Leah, Bob, and their children.

As we celebrate Christ's ultimate sacrifice this Easter weekend, I ask you all to please give until it hurts.

Please feel free to repost this information wherever you think it might do the most good. You should also know this is a non-interest bearing, free checking account and EVERY penny will be available to Leah's family when they need it.

T, who knows you want to help

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Ok, so it's not all flowers and rainbows with autism

"Mama, I don't LIKE it!" My JBean wasn't happy. Although this is not that uncommon, it was still a concern. The Nutcracker was coming up, and she was due to perform.

Last year, she was a flower. "I liked being a flower mama. Flowers are graceful, and princess-y. It was a pretty dance." This year, she was a lamb. She is less-than-thrilled.
"I hate the Lamb Dance! It's stupid. The costume is silly, I look like a little kid." I figured reminding her that is indeed what she is? Not so helpful.

Early on, I told her she didn't have to dance if she didn't want to. The Stage Mother? I am the furthest thing from that person. You won't see me pushing my children against their will. I have a theory about extra-curricular activities: if it isn't fun, what's the point? This may be because I was, if not born with two left feet, in possession of them now. Dancing well is hard for me, and I don't have autism. Still, if I were to try to dance, with actual choreography, you would think I was having a seizure of some sort.

I have given her every opportunity to bow out gracefully. She won't be a prima ballerina; she is still in the first-level class. All of her friends have pretty much moved up a level. She just isn't ready. As a parent, my heart hurts just a little bit for her. I worry as she gets older, girls will make fun of her. But she won't quit. She assures me that she wants to dance. And she does. She just doesn't love this dance. Still, she is trying, and that's all we can ask. To me, that in itself is a victory.

This Spring, she again will dance. This time, she will be a rainbow. She will wear a pastel-colored tutu. She wasn't excited about the costume, but she'll get used to it. And I have decided to get her some private lessons to get her "over the hump." I am optimistic that she may improve. She told me she was passionate about her dancing. I guess it is good to be passionate...do you really have to be good at something to love it?

Now I am looking for a triumph over the fear I have for her. The great, white-hot worry that wakes me at night. I think of the time that is coming, soon, or not-so-soon, when the girls look at her and laugh. When they look at her, whispering behind their hands. When it hits her just how behind she is, and that without 10,000 hours, she just isn't going to get those dance solos that she may be wanting. She will be tried, and found less than adequate. And though we cannot keep our children from pain, it is still a very difficult thing to watch. A lump in my throat and tears pricking my eyes, I wait.

Tina has two left feet and the right attitude, usually. Chocolate helps. She also blogs on Send Chocolate Now. Autism Sucks is her brainchild.

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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

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.

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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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.

The Dirty Secret Schools Don't Want You To Know

Over the years, I have witnessed an exodus of sorts when it comes to the education of friends' children. More and more parents of children with autism and Asperger's Syndrome are choosing to homeschool. We are the well-kept dirty little secret that your school district doesn't want you to know: often our children can be better served at home than in the school system.

I would have never said such six years ago. I was a died-in-the-wool PTA, room mom, get into the system and change it, agent. But one horrific year with my son's classroom (through no fault of the teacher) and I became a true believer. I figured I couldn't do a worse job than the school, and I might even be an improvement. Besides, my son hated school, to the point I was literally dragging him there. Something had to give.

And now? I homeschool all three of my children, and this is our 5th year. Two have been diagnosed with high functioning autism, they are 7 and 10 respectively. My oldest is going on 15, and though she has never been diagnosed, she has many of the deficits of Asperger's, and is also academically gifted. Her father is a computer engineer, and is most likely also on the Spectrum. (he was never tested, but off the record, our psychologist said so) So, you do the math...

In any case, bringing my children home has worked out wonderfully for us. Homeschooling has allowed me to tailor each program according to what works for each child. My 14 yr old, who went to school for 6 years benefits from a very academic program. She enjoys the structure and it works. My middle guy, at 10, is the one I walk the line with. He isn't unschooled, but his academic structure would, at first glance, seem more relaxed. It is still very scheduled, however. But we benefit from frequent breaks, sensory diet and multisensory approaches. I can choose activities that he enjoys, and we keep work periods short and focused. He can take a break for pogo stick or OT work, as needed. My littlest one, at 7, is the one that learns best through games and Mom Time. She needs one-on-one (as does my son) that she wouldn't get in a classroom. She often has to be taught a concept repeatedly before she gets it.

My middle guy is also dyslexic, which makes it interesting, and I am thinking my littlest may be, as well.

As for socialization...which is a joke anyway... but still. We have found with regular play dates, activities and park outings, my children do just fine. There is more time for preferred subjects (my 14 year old taught herself to both play the piano and knit, because she had more time than if she was traditionally schooled.) We have more time (and funds) for field trips and activities. While other kids are sitting in a classroom, mine are out learning in the world.

There is a park day we attend and have for years. The attendance is large, with many different ages and multiple abilities. There are several kids from all ages that are on the spectrum in varying degrees. It is a very welcoming group. Truly, it was the best decision we ever made for our family.

When my son ended 1st grade, he barely read, was behind in math, his writing was still reversals (though he is left handed, so that made it worse). I would literally dress him like a doll and drag him, kicking, to the public school. He would sit under the teacher's desk, or make games. His aide was useless, only serving to keep him from eloping from the classroom. His work was all sent home. I was already homeschooling, and my son was in the school system!

He is now in the 5th grade, and reads at grade level. His math is also at grade level, or just below. He is above in Science, History, Geography. His writing and penmanship has improved 10 fold. and most importantly, he loves to learn. I have found that learning is a broad term for what we do every day. Mythbusters is learning and exploring Science. Going to the Arboretum is a chance to discuss the environment and botany, as well as the food chain. In fact, every activity has inherent learning in it...you just have to find it.

The most important thing to remember about homeschooling? It isn't something you do. It's something you live. And there really is no wrong way to do it. You can, and your child can... and if it doesn't work, keep tweaking. Also, what your state standards may find important, you may find doesn't mesh with your family. That's ok. I have found that as we go, my kids pick up information I didn't formally teach. And the one thing I want to equip my children with? The ability to find information.

The freedom I have found, as well as the free time away from IEPs, discipline meetings and just general headache is now energy I can pour into helping my son love learning. Less time is spent arguing over what the schools think he needs and more time is given to what he actually needs. We have personalized his goals, and we make sure he reaches them. There is no fighting with autism experts who insist my son is meeting goals that are either too broad, too easy or just plain wrong. I am in control. And my children are the better for it.

That, to me, is success.

T. is a writer, wife and mother of three children, two who have high-functioning autism, one who has undiagnosed Aspergers. She advocates for autism awareness and education, as well as acceptance. She views autism as a growth process and the opportunity to connect parents in 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. The Autism Sucks blog is her brainchild.

A Spoonful of Sunshine for Parents of Children Who Have Autism

As the mom of two children who have autism, one of the things that causes me the most distress is the way some people react to our children. People who face extraordinary challenges should be treated with extraordinary compassion. Unfortunately, sometimes those who face the greatest of challenges are treated with contempt rather than compassion. For this reason, I have a profound appreciation for those all too rare occasions when people rise up en masse to offer support to a person who truly could use it. The following video is example of this type of behavior. For me, it is a spoonful of sunshine to top off a steaming mug of cocoa. High praise to the wonderful people at Fenway Park who opened up their hearts to help a young man with autism sing our national anthem on Disability Awareness Day. To other parents of children who have autism: I hope this video fills you with joy and restores your faith in the human capacity for kindness as it did for me. Michelle McFarland-McDaniels is the mom of two beautiful preteen girls who have autism. She is also a wife, writer, blogger and teacher. Michelle publishes the Autism Assistance Resources and Information blog. She is also the publisher of Funding Autism Treatment and College Resources for Students with Autism.