Bullying At & By Schools

When you're the parent of a special needs child, you become accustomed to butting heads with school (medical, mental health, etc.) professionals. Primarily this is because you know your child better than they do. But it's also because you know other people's kids -- and other adults -- better than most do.

So when I read the "astonishing" study that says children with autism are three times more likely to be bullied, my first thought was, "Only three times more?"

Children with autism (ASD), and others who experience frequent meltdowns and inflexibility, are often easy targets for bullies. The general lack of teaching tolerance, understanding, and simple kindness coupled with the fact that these children are easy to get a big reaction out of has obvious appeal for those lacking in maturity and respect.

But this is only part of the problem.

Children with special needs, especially those with non-physical or invisible issues, are also likely to suffer a unique type of bullying: To be blamed for things they did not do.

Kids know the stakes, the rankings in classrooms and elsewhere. They quickly learn to manipulate the power structure by telling a teacher or adult that it was a special needs kid who did something wrong -- those kids are either always in trouble for behaviors or assumed to be capable of some wrong choice due to their difficulties, so teachers and others fall for the scapegoating in spite of how the child with special needs protests. (This also means that when a child with ASD or other diagnosis reports bullying, the complaint will not be taken seriously.)

In fact, kids will often just threaten to blame in order to get things their way, with such taunts as, "Who do you think they'll believe, you or me?" Unfortunately, I've even seen this sort of disgrace in my own family first hand.

But there's more.

According to the study, children with ASD are also "bully-victims", meaning they are children who have been bullied and also behave as bullies, or at least can be viewed as a bully.

Researchers believe that the deficits in social understanding common in children with ASD may lead to bullying behavior by the child that is different than that displayed by typically developing children. For example, an honest but socially unacceptable remark such as, “You’re fat,” by the child with ASD may be viewed by others as purposely cruel when it is not. Likewise, a child with ASD who is accidentally bumped into might misinterpret this as intentional, and lash out in a way that looks like bullying.

Doesn't this also mean that the child with ASD or other difficulty is likely to face accusations of bullying and the consequences? Even if only an "educational discussion", it's sure to add additional suffering to their day.

Can you begin to imagine how upsetting all this is? Even without autism or other issue, a person would be prone to meltdowns!

And the number of meltdowns matter because now eight states are sending autistic, mentally retarded, and emotionally troubled kids to a facility that punishes them with painful electric shocks!

Yes, it's 2012 and we're giving kids electric shock treatments.

What's next? Lobotomies? Stonings?

Maybe Erika Christakis is right; maybe we Americans do hate our kids.

I've known for a long time that children have been devalued, and women (especially single mothers) right along with them; but I hadn't thought we actually hated kids.

It's bad enough that bullies exist in schools; do we have to create institutionalized bullying too?

Autism United - MommyMatter $300 Sears Giftcard Giveaway

Autism United Giveaway -- win a $300 Sears Giftcard at MommyMatter.com. Many ways to enter; multiple entries, even multiple entries per day.

According to the contest entry rules, I'm supposed to say why I need the $300 Sesrs giftcard... To be honest, even though my Auspie daughter is now 22, I'm still no where near financially stable. Largely due to the fact that diagnosis was so late, but also because raising a special needs child is expensive.

Was Boo Radley Autistic?

DMFP contemplates if Arthur "Boo" Radley in To Kill a Mockingbird was on the spectrum:

He's shy. He likes children and the only time we see him comfortable in the story is when he's walking back to his home, Scout's hand in his.

But he stabbed someone in the leg, casually, without emotion. While collecting clippings for a scrapbook. He chooses odd ways to let someone know he likes them, leaving a strange assortment of bits and pieces in the hollow of the tree. It's a distant and unusual method of communication. And he knows enough to defend the innocent from impending danger. He's uncomfortable with lights and with talking to people.

The adults in the book consistently describe Boo as "harmless" and "innocent," in spite of the event with the scissors. The children and more dramatic neighbors manufacture dire tales of his yellow teeth and propensity to eat small mammals raw, but the people in the story whom we trust the most trust Boo and believe that he, at the core, is a good person, just kind of odd.

You'll have to read the rest to discover her conclusions. And you'll have to post a comment to let us know yours.

Hats Off To Autism

Promote awareness of autism with this Autism Awareness Puzzle Hat by MsYarn Designs.



The pattern is knit flat, uses Intarsia method of color work, and there is a separate chart for each of the sizes. The pattern is just $5 and portion of the proceeds will be donated to Autism Society.

I Heart Autism

Today my Valentine's don't only go to my family & friends that I love, but to Autism too.

It may seem dumb to say you love something which has as caused as much fuss, pain, frustration, and problems as Asperger's Syndrome has for my family, but aside from the challenges which have taught me things I likely would not otherwise have known (blessings in themselves), my daughter has Asperger's -- and I love her.

Every part of her.

Not "in spite of" or despite whatever it is that we call "Aspergers Syndrome," but I love it too because it is part of who she is.

Since today is the second Sunday in February, today is also the International Day of Prayer for Autism and Asperger's Syndrome. My prayer is for understanding, acceptance, and assistance as needed for those affected by issues on the Autism spectrum. Which is all anyone can ask for, really.

More Thoughts On Autsim & Acting

It continues to be difficult yet surprising for me to watch my daughter perform in public. Last week, at Trollwood's celebration of the end of the summer performing arts camp (called "Sun Celebration"), I once again watched my daughter perform.

I have to say that she was the best in the "Acting For The Camera" class -- and that's a big call for me because, as I have shared, I tend to spend more time protectively yet critically watching her, her interactions with others (and their reactions to her), comparing her to the others in terms of performance & acceptance among her classmates. So when this mother claims her kid was the best, it's a really big (and slightly uncomfortable) deal. I was so proud of her! Very emotional, but I struggled to maintain "normal parent appearance" for everyone's sake.

During the musical production number Allie was in, I did notice that she, in typical Asperger's fashion, had her eyes locked upwards, towards the ceiling. It seems that all my years of coaching her to look people in the face when speaking to them worked very well for the scenes she worked with one other student actor; but when on stage in a musical number, facing the audience, she does not know where to look, how to smile out towards the audience, etc. Something I think I may address with her... Or possibly contact Trollwood about in terms of educating their instructors. (Allie cannot be the only spectrum person they will work with at Trollwood, let alone in other settings.)

But my fears of Allie's continued interest in (obsession with) the performing arts are now shifting from "will she fit in?" to the more typical cautions that most parents of kids who dream of being on the stage (or directing etc. etc.). My main focus now is to convince her to keep a day job, continue her education, while she works toward The Dream in such a highly competitive job market.

This is one time, I know her resistance to "the practical" is completely as to be expected. ;)

Defying Autism? More Like Damning Autism

When asked to participate in the blog tour for Defying Autism by Karen Mayer Cunningham, I responded by saying:

I'd be interested in reviewing a copy of this book, possibly interviewing the author... But I must warn you, I'm rather skeptical about this. As the parent of a (now adult) child on the autism spectrum, I'm really a hard sell on cures -- no matter how miraculous.

Let me know if you/the author are up to the challenge...

Karen Power of Christian Speaker Services, the one organizing the blog book tour, replied favorably:

I totally understand. And, Karen Mayer Cunningham isn't trying to push the cure. It's her story, her journey, and what she learned along the way. I think it's more for the mothers/parents than about the cure.

I have to include this information along with my review for several reasons.

First of all, after 20 years parenting my own child with Asperger's, I've run the gambit, from spiritual to scientific, from dietary to "refrigerator mom" (and even less flattering approaches), only to end up where we are today, with a daughter with serious delays who remains on the spectrum. So I'm more than a little skeptical about "cures for autism."

Secondly, I want to be fair with this book review and provide a disclaimer of my own beliefs as well as documentation of my stance with the folks involved in promoting the book.

A few other reasons will be illuminated along the way.

Defying Autism: A Miraculous Story Of Hope by Karen Mayer Cunningham is an easy to read slim book of 115 pages which, unless you are upset by the material, can easily be read in an hour or two. The first two chapters deal with Karen's return as the prodigal-esque daughter -- and frankly, as I read them, I wondered why they were included in the book. But as we near the end of Biblical proportions, such context adds to the story. For you see, once Karen's son James becomes difficult & is diagnosed as being on the autism spectrum, a large part of Karen's guilt centers around belief that she is, through her son, being punished for being less than perfect.

This is not uncommon among the parents of special needs children; even if you aren't particularly religious. Nor is the reaction/response of Karen's husband, Tom, who accuses Karen of being a bad mother. Guilt is typically the inward path of blame that women take; males tend to externalize their blame. This is a large part of why many marriages between parents of special needs children end in divorce.

If these issues were familiar to me, the problems with school & childcare providers were doubly so.

Like Karen, I'd had to battle schools & utter very real threats of legal actions and media attentions. I'd also had horrible scenes & difficult times with childcare (from baby sitters to childcare centers) because those providing the childcare had no clue what to do. I've faced the same ignorance, accusations & animosity Karen faced -- and then some, because my daughter was actually booted from childcare centers & punished at school, despite her "special ed kid" stamp. So I knew how Karen felt when she & her family were treated so poorly by their church's childcare & the public school.

I sighed & ached as I read of Karen's external battles & internal struggles; it certainly isn't easy parenting special needs children. Especially when the child "looks normal" but then displays otherwise. Like Karen, I've often thought that if my child looked special (had Down's or was in a wheelchair, for example), that more allowances & understanding would be given -- to both the child and the parent. (But I wouldn't, as the author does on page 72, call a classically autistic child "deathly, deathly ill with no hope for a cure.")

Also unlike the author, I've never received any such miracle healing of my child.

It's not that I have not prayed; it's not that others have not prayed for my daughter. It's just that my daughter's situation remains (albeit some advancement due to continuing professional assistance, counseling, medication for sleep/stress, & ongoing education).

Having tried various spiritual treatments (finding them at best supportive to me emotionally -- the power of which should not be underestimated), I am not comfortable suggesting a miracle cure as a way to extend hope to other parents. It's rather dubious, actually. For it is at this point of non-miracle that one must then realize the doorway is open for such questions as:

• "If playing Christian music, anointing with oil, &/or other rituals of faith combined with prayer were all that was required to receive God's attention, His miracle, then why do so many suffer?"
• "Am I so sinful that my child must suffer?"
• "Am I of the right church?"
• "Do I follow the right God?"

All of this is not only more guilt for mother ("Are my sins are too great?") but dangerous rhetoric ("Whose God is greater?"). We parents did not "give" our children autism; that's self-defeating and does not support our children. All faiths offer forgiveness and each faith can offer up miracle healings of their own; but still, what a dangerous argumentative path in our times of intolerance.

While I certainly do not begrudge James his healing, Karen her miracle, or anyone their belief in faith, I can, as I do with Jenny McCarthy, remain skeptical & express concern over what is offered as hope but comes with so much rejection. And in this case, it comes with judgment too.

On page 111:

Not every autistic child is demonically possessed, but autism is a curse. In that sense, it must be seen as an oppressive and tormenting force that must be faced with more than just the standard social service tools. The enemy of God wants the people of God ignorant and in despair; this is the ultimate curse. But the Father is in the curse-busting business, and so whether He leads us to phenomenally gifted physicians and clinicians, or to alternative therapies, or to those who know how to address spiritual matters in the power of the blood of the Lord Jesus Christ of Nazareth, He wants us to be free. He wants our children to be free.

Calling autism a "curse" is more than just dangerous in terms of guilt & religious intolerance; it's damning of the individual with autism.

There are things equal-to or worse than autism (where is God during such "curses" as domestic violence, rape, murder, war?) and many on the spectrum would not change who they are. In fact, some folks, such as my daughter's therapist, call autism a gift. Others might not go so far as to call it a gift (I personally struggle with that label myself; from time to time asking for the gift receipt so that I might exchange my daughter's Asperger's for the singing talent to win American Idol), but, like Horton says, "A person's a person," no matter where they sit on the autism spectrum.

If Defying Autism is, as Powers says, "more for the mothers/parents than about the cure," then the author goes about it all wrong. If this bit, from page 110, doesn't "promise a cure," it sure implies it:

This is something only God can do. This is bigger than what the medical field could promise or state agencies manage or those with good intentions assist. It is called a miracle.

(There's a reason people in the medical field don't promise a cure; they'd get sued.)

As the mother of one child diagnosed Asperger's (and one being screened for the spectrum), I found the condemnation of a "curse" far overshadowing any ability to commiserate, let alone be hopeful. In fact, I found Karen Mayer Cunningham's book inflammatory & antagonizing.

It's difficult to say that even if the author had skipped the whole curse bit if I'd have felt better about the book... But she didn't and the aftertaste is too bitter, too strong.

But I suppose, if you are feeling isolated in parenting a child on the autism spectrum (and are unwilling to get yourself to one of the plethora of online networks or real-world support groups), Defying Autism might help you feel less alone... Similarly, if you've got a relative who just doesn't "get it", this book might help them understand some of your struggles, fears, guilts etc... But for me, suggesting someone learn more about autism by reading a copy of a book that calls my kid "cursed" would be horrific. (Would you call your child in a wheelchair "cursed" or "demonically possessed?" I don't think so.)

In any case, I'd caution readers against expecting a healing miracle.

And you might be better off tearing out page 111 entirely.

McCarthy-ism

Whenever I hear Jenny McCarthy (and now Jim Carrey) cheer, "Autism is Preventable and Reversible!" I feel ill. I've seen the celeb-duo on TV, but become so nauseated & angry that I refuse to read the books. Why? Because these treatments are far more costly than the average family can afford, leaving parents with additional guilt & stress -- and that's if the treatments did work. But they don't.

Primarily, what the "prevent & reverse" Autism folks present is inconclusive. While McCarthy's son may have been helped by such things as diet & other alternative treatments, these results have not been consistently replicated with other children (or adults). After years of determinedly jumping through such hoops of hope, I was just that much more exhausted -- emotionally & financially.

In fact, those are the typically replicated result of attempts to follow claims of "reversing" Autism. Such guilt & stress produces not only even more exhausted parents, but children who are, due to changes in schedules, even more upset -- and, feeling they have failed again, children with even more damaged self-esteem.

And don't get me started on the anti-vaccines cry. Aside from the fact that there is no proof of a connection between vaccines and autism, McCarthy herself has been quoted as saying, "When it comes to vaccines we are operating as if our kids have a universal tolerance for them. We are acting like ONE SIZE FITS ALL. That is, at the very least, a huge improbability."

I'm not sure if that "no one-size-fits-all mentality" is irony coming from a woman talking about her child; or if that's in defense of the inability to replicate results from McCarthy's touted treatments.

The Best Christmas Pageant Ever?

My eldest, Allie, the theatre-loving Auspie, finally had a successful audition and got a part in the high school play. While she was giddy over her acceptance, I was anxiety ridden.

As the parent of a special needs kid, your whole take on plays, pageants, concerts and other school productions or events is if not completely opposite of every other parent's, pretty darn close to it. While parents of "normal kids" hope their child excels and stands out from the rest, we cringe in horror, hoping our kids blend in. Every single day.

It's not that we don't value our kids for their unique differences; we just know too damn well what it's like when other people, especially other kids, notice our kids' differences.

So I wasn't some stage mom hoping my kid would be noticed; I was hoping she'd not be noticed.

Practice for the high school's production went about as expected. My daughter was nervous & exhausted -- but she managed to hold up very under the stress of change and less sleep. Allie even managed to hold up when, as expected, some bitchy 16 year old woman-child (typical for high school, mind you), walked up to my daughter and said that my daughter had no right to be in the play and that the only reason she was there was because she was a freak (I'm actually editing that; paraphrasing in a kinder way with "freak" than what was said). That woman-child gets an F for having no class. My daughter gets an A+ for class. She responded simply by talking to her teacher, the director, about it and upon hearing that she earned the spot with a good audition, she left it at that.

I'm sure there was more meanness than that. It's not that I'm being negative; I've just seen how mean other kids are. First, I grew up seeing mean kids in my own school situations. And second, I've seen how mean other kids have been to my daughter -- from day care on up. Surely the high school play posses no magical kindness dust. (If it does, I'd love to buy some.)

Ironically, the play was The Best Christmas Pageant Ever. I'd never seen it or even read the book; but it's a funny story about The Herdmans, "absolutely the worst kids in the history of the world," and how one year they decide to participate in the church's Christmas pageant. (Seriously, The Herdmans have nothing on average kids who are mean to special needs kids.)

Anyway, my daughter made it through rehearsal etc., and we went as a family to see the play on family night's dress rehearsal.

The play was fantastic. Because Allie tends to be very negative, she had complained that she had a very small part. She had made it sound like she was barely in the play when she was not only in most of the scenes, her character actually had a name! That was joyful discovery number one.

The second discovery was Allie's own success. She didn't screw up a thing. She not only remembered her lines and we could hear them clearly -- no shouting either. And hey, she didn't fall down. (Isn't that everyone's fear in a play?)

But the best part was realizing that she was as composed as the rest of the cast. She didn't stand out!

Now I know there were parents there hoping their kid would steal the show, grab the spotlight, be so memorable they'd transcend their role in a magical theatre moment. (And the parents of the young woman who played Imogene Herdman, the bossy girl who asts herself as Mary in the church pageant, sure must have been!) But as a special needs parent, I dreamed of Allie just fitting in. If only for the few hours the play ran.

And she did.

That's what made this The Best Christmas Pageant Ever.

Autism & Travel

The New York Times has an article on the difficulties of traveling with those with autism.

I'm glad there are articles & discussion on autism -- and things like the Autism on the Seas via Alumni Cruises. But I still can't help but feel petty that none of this existed when Allie was younger. Nor would it be affordable today.

I hate that it took celebrities with children on the autism spectrum to make it legit.

Mother-Daughter Fashion Issues

Got sent this notice for a Mother/Daughter fashion contest:

Do you share clothes with your mother or daughter—but sometimes clash about fashion choices? Tell us about your everyday wardrobe dilemmas and you and your mother or daughter could be the lucky pair to get solutions in a styling session with eBay Style Director, Constance White, and the Family Circle fashion team. Plus, you could win $3,000 for the perfect shareable wardrobe on eBay and a trip to New York City for a photo shoot and the chance to appear in an upcoming issue of Family Circle. For your chance to win, submit a photo or video of you and your mother or daughter, your ages and a short description of your experiences sharing your wardrobe.

I'm posting not just because y'all might find it worth entering or worth killing time reading the stories, but because it once again serves as a reminder just how damn different my relationship is with my Auspie.

Our clothing clashes, even though she is now 19, remain similar to those between parent and toddler: She wants to dress herself, but isn't at all concerned with how she'll look to others. I doubt that any fashion team would have a clue what to do. In fact, it would likely drive them to tears.

Thinking about it nearly drives me to tears.

Autism & Missed Household Income

Via Tom McMahon and his tip of the hat to Future Pundit, I found this press release from the University of Rochester Medical Center, titled Households with kids with autism likely to earn less, which discusses how out–of-pocket expenses combined with missed income opportunity burden families with autism spectrum disorder (ASD):

When the demographic and educational characteristics of families with children with ASD were analyzed, their average actual reported annual income fell short of the average predicted income by more than $6,200.

“That’s a staggering 14 percent loss,” Montes said. “We presume this may be strongly related to a lack of appropriate community-based support resources and services. This shortage can ultimately overwhelm parents, sometimes forcing them to sacrifice work and income opportunities for the sake of balancing their unique family obligations.”

This echoes findings from another nationally representative study Montes led in 2006: Fathers of autistic children were 9 percent less likely to report full-time employment compared to fathers of the non-autistic population.

“The ripple effect, of course, is that this may be impoverishing some ASD-affected families in the long term. Less savings and less investment make it more difficult to retire comfortably or send children to college,” Montes said.

Personal experience tells me the $6,200 figure is on the low side; but then perhaps it has something to do with the ages of the children involved (kindergarten-age through eighth grade), the age at which the children have been diagnosed, and the which end of the ASD contium they are on.

Allie is now 18, and her official diagnosis of Aspergers didn't occur until just under 4 years ago. Prior to that, for about 4 years, PDD was a diagnosis, along with ADD, learning disabilities and a few other 'incidentals'. Before that? A mish-mosh of possibilities -- and that after years of mud-slinging at me, of one variety or another; something I'll have to get to here eventually. At her age too, we have to consider the 'newness' of the awareness and understanding in autism.

Contrary to what some may believe, higher-functioning children can have the least support, both in terms of financial assistance (when funds are low, the monies are saved for 'the worst') and institutional understanding. Not to mention the affects of special needs kids on marriages, families (household and extended), and the diminished social lives of parents, who suffer fools and even larger blights.

All of this affects the ability to work and be there for the child.

I remember, with a shudder, the number of day care centers who asked me to withdraw my child from their center, the number of babysitters to call me at work to tell me they were quitting -- and on their way to drop my daughter off at work with me.

I remember the job interviews, where my working through lunch to leave early was just fine; but by week three they were no longer tolerant. (Plus several other hideous employers which are much longer stories in and of themselves.)

I also remember my shrinking world of support. Friends and family don't have any idea what you are going through; they tire of the out-bursts from the child and the exhaustion of the parent. It's not that they shun, but that they can't grasp the situation. They find it unpleasant and you find them avoiding you, however unconscious the acts. You forgive them their ignorance, but still, your world shrinks and with that, you lose more bits of yourself...

These are but a few such examples of how your career and work are affected by parenting a child on the autism spectrum; seems like a heck of a lot more than six grand, or 14%.

But at least someone is trying to look into the issue.

An Evening At The Auspie Improv

Today, April 2, is World Autism Day. (The United Nations designated April 2 World Autism Day in November 2007.) While there are plenty of "Autism experts" willing to discuss Autism, I just wanted to share a personal story...

Along with the anime obsession, my eldest, Allie (who has Aspergers), is a huge theatre nut. First it was musicals, but it's slowly broadening to encompass all performing arts (as well as set, tech and costume etc.). She's been auditioning and frustrated with not getting any roles, which is rather like most kids in pursuit of the stage; but it's more difficult for her to face rejection in general, and constructive criticism is less than 'constructive' for, as you can imagine, when it comes to acting as emotions and the subtleties of acting them, she's a bit handicapped.

Hubby and I have often made jokes, amongst ourselves, that we should open Austism Theatre simply for the complexities and comedy involved in the very idea. (This prior to Autism the Musical.)

It's not that we don't support her (or others), or believe it "impossible"; but as there are so many occasions in daily life where she's lost in translation that the very notion of acting seems preposterous -- to me, anyway. And wouldn't it be fun to see what an audience does before a performing troupe of autistic actors? We both imagine some sort of Emperor's New Clothes, where critics call it "avant-garde" because they don't know what else to say when they don't get it.

Anyway, Allie joined an improv club at school, and last Saturday, participated in an improv show.

Sitting in the audience, I was anxious. I've spent years noting just who does ad doesn't interact with her (from day care on up, I've witnessed the social ostracization), and this was a social setting -- with a performance. I felt her vulnerability, even if Allie was unaware of it.

Plus, the leaders of the group or club were not teachers, but college kids. What did they know of her special situation, her special needs? With laws the way they are, I'm sure these college kids didn't have access to her file or anything...

But here we were, at show time.

In the first 'round', Allie's team went first in a game of "freeze". Allie didn't tag herself in. But as the evening continued, she jumped in. At times, she was clearly nervous. And awkward. But then she seemed to settle in.

It was a good thing too, because during the second half, she got a doozy of an assignment.

This game was called Party Quirks, and just as on Who's Line Is It Anyway?, Allie and two others on her team were guests with specific quirks that the fourth member had to guess. The first guest was a pyromaniac, the second a human devolving into a monkey. Allie's quirk? She eats seahorses.

Now, unless you've got a fish tank with seahorses, or a bowl of plastic seahorses, what on earth are you supposed to do?

But Allie did a good job. As the third to enter 'the party', she immediately asked where the seafood was. A nice clue.

The 'party host' went on to correctly guess the first two guests, leaving only Allie. He says something about her being a shark. Nope. So Allie, desperate to give him some other clue, yelps out, "I eat horse babies!"

The whole joint cracked-up with laughter.

I felt a bit uncomfortable. It's difficult as the mom who has always heard unkind snickers from others who don't know her, to suddenly hear people laughing at her & the situation for all the right reasons. I laughed along, marveling at the feeling.

Later, in one of the last performances, Allie's team did the old "move genre" game, just like on Who's Line. They act out a skit, and change acting to suit the new movie genre given to them.

It was sufficiently silly, with Allie a bit less vocal and less animated than some of the other performers -- but still in it. Then another movie genre is given, "B Movie".

The other actors remain still, unsure how to act "B Movie" -- but Allie immediately puts her pointer fingers up, one on each side of her head, like antennae, and starts to buzz around the other performers. She thought they meant Bee Movie.

Everyone was laughing -- even the performers. One of the college kids leading the show (in an umpire's uniform, of course), had to get off his chair and exit stage right he was laughing so hard.

I was laughing and crying.

And hubby's got it on video tape to prove it -- audio at least.

One of the rules in improv is that you can't ask for clarification, or say, "I don't know what that is," or "How do I do that?" Allie knew that, so she did what she could -- be the bee in Bee Movie. Again, while the 'regular' performers stood, unsure of what to do (until they themselves were laughing).

Again, a flood of mixed emotions from me, Mom.

How absurd, how wonderful, how delightful to have my daughter the Auspie be the intended comic, worthy of applause and approval! How charming that her misunderstanding could be accepted in the spirit of improv!

How strange to be joining others (non-family, non-friends) in laughing at Allie! How odd it felt, to not bristle, to not want to grab people by the throat and shame them for their cruel laughter (laughter she often believes to be genuine laughter among friends).

How cathartic to laugh away the pain of the normal non-social acceptance of her.

I laughed til I cried; cried while I laughed.

How mind-snapping to be so proud of Allie in that moment -- & realize that often even I underestimate her. Sometimes my momma worry gets in the way.

After the performance, several of the 'cool theatre kids' ran up to Allie and applauded her performance and humor. "'I eat horse babies,' is the best line ever!" one said. And it was all I could do not to cry some more.

Mean Companies: The CBS Edition

According to the AP, Autism Group Demands Apology From CBS.

As I began to read the article for my husband, I got no further than the headline before he blurted, "Oh, for Boston Legal, huh."

Which surprised me because I am a huge Boston Legal fan and watch it every Tuesday -- which means he has seen nearly every episode as well. So I said, "Really? You'd think of Boston Legal? I find the characters to be treated very warmly, created with integrity. Sure, they have funny quirks, but they are high-functioning & interesting, certainly not treated or created in 'ick'. And, besides, Boston Legal is ABC."

(I'd also like to hereby state that the matter of 'warm, interesting, high-functioning characters created with integrity and warmth' is a problem afflicting many shows, regardless of any connection to Autism.)

Anyway, back to the news story.

The complaint with CBS is over a recent Big Brother episode.

On that episode, a contestant named Adam, who claims to work for an autism foundation, said he would spend his winnings on a hair salon for people with developmental disabilities "so retards can get it together and get their hair done."

His partner, Sheila, told him: "Don't call them that."

Adam responded: "Disabled kids. I can call them whatever I want. I work with them all day, OK?"

Isn't that the fear of any parent, any family member? That some jack-ass is going to take the pay and be snide and heartless as they walk away? I wonder just how Adam does deal with the kids each day...

I doubt that CBS can be held liable for 'contestants' on reality shows... I'd think the whole freedom from a script thing combined with the nature of such games would have some sort of contracts with riders protecting themselves from just such stupidity. But CBS ought to do something in responsible response.

Just not another one of those PSAs which suck. Do something real & meaningful for Pete's sake.

If not, then it makes me wonder if CBS has some sort of impairment which affects their ability to perceive and deal with emotions...

Naw, it's just a sign of being mean, heartless and money-grubbing.

More On Comics & Aspergers

Following my post on Auspies and Manga, and how I might learn something from my daughter's obsession with it, I spotted this post at Newsarama's blog. He's quoted a passage from Frank Santoro's post, which frankly is really for die-hard comic fans. But the passage pulled at my earlier thoughts & so I'm going to re-post it here for parents.

There’s often too much emphasis on reading a comic like a novel when really it should be discussed like a painting or a sculpture. Far from dismissing these “out there” comics… I found myself simply hoping to discuss them and appreciate them better, and to do that I think a broader approach has to be encouraged, towards a less conservative definition of comics… I’ve always felt that all comics are inherently narrative because of the form that the book takes. For that matter a single image, an abstract painting, for example, is often narrative. Jackson Pollock’s paintings are narrative — you can follow him, the story of him working by the lassos of color — and the same is true even with the color field abstractionists like Frankenthaler. It’s just a broader range, a greater bandwidth for inventing narrative.

Again, I'm not really certain what this all means -- or if in fact it means anything in the world of Aspergers. But it pulls at the threads of the sweater just a bit more...

The Aspergers/Anime Connection

Allie, the eldest who's an Auspie, had oral surgery recently, so I went in search of cheap manga comic books. She loves anime and manga, but me not-so-much. I'm not only a fan of reading, but manga and anime present parenting problems. For example, in Japan animation and comics aren't just for kids but in fact has an adults only genre called hentai, which is porn. Even the graded or rated stuff isn't a certainty for I've found in books rated 13+ lots of nude topless women, in showers etc., with very adult themes, such as men spying on them. So you really have to screen books and videos to make sure they are appropriate.

In the recent issue of Wired, there were several featured articles on manga, and while I was disappointed to not see any notices or warnings on the issue of hentai, there were some very interesting things. For example, How Manga Conquered the U.S., a Graphic Guide to Japan's Coolest Export is not only very cool but it gives newbies (manga virgins) an idea of what it's all about.

However, of most note to parents of special needs kids was this bit from This Is Your Brain On Manga:

and played But as a Westerner without deep experience with manga, I displayed the hallmarks of what we might call a "prose mind." My eyes herked and jerked across each page, stopping to linger over any text I encountered — almost as if I were scouting for words rather than absorbing pictures. a Then he asked one of his research assistants, 29-year-old NakamichiKeito, to step up. Keito was asked to read a passage from Yanki-kunMegane-chan, a series he doesn't usually follow. When NakazawaKeito's video, it was a revelation. His eyes slalomed smoothly from page edge to page edge, rarely stopping at the text. In fact, there were portions of pages that his eyes never touched — because, as Nakazawa explained, Keito was either processing the words through his peripheral vision or simply imputing what was there. Like a seasoned skier, he moved with great speed yet remained acutely aware of his surroundings.

Keito has a "manga mind," capable of understanding context, supplying missing information, and interpreting word and image as one.

As a parent of an Auspie, I'm now thinking about manga differently.

While I originally barely tolerated anime, I did learn to twist that obsession of hers into the manga books -- hey, it was some form of reading. (And it did reignite her passion for reading after a several year hiatus.) But now I wonder if this "manga mind" thing, where a person views and interprets differently, is some key to further understanding how my daughter receives information.

Perhaps it will lead to more insight. Perhaps not.

But it does mean I will be moving more quickly on screening the piles of manga books and anime videos I have laying about the house.

Guarded Regarding Gardasil

Des' mom made her 'request' that Des get the new HPV vaccine. I was skeptical and suspicious of this new wonder drug; it was pushed through rather quickly. (Especially in Texas, where the lobbyist for the manufacturer is a pal of the governor. The manufacturer and the lobbyist stand to see lots of money from this mandatory vaccination of young women.)

While it's true that my Autism-spectrum daughter makes me re-think vaccinations in general (all my kids have their vaccinations, but I think about them long and hard because for every study which refutes a connection between Autism and vaccinations, another suggests it strongly), I was worried about Gardasil. What are the side-effects, long-term consequences? And why when most women's issues in this administration are completely, utterly ignored (or made worse) was this so quickly pushed through testing?

Seems I'm not crazy to be suspicious either.

I remain guarded against Gardasil and urge you all to be so as well.

What Normal Isn't

Just a little melancholy... Derek's at work, Des is at her mom's for the weekend, Hunter's back in Wisconsin, and Allie's at the group home. I am alone, save for the critters -- and their fur. (I should vacuum, but that will wait.)

I am spending time reading all the family member blogs and looking at Destiny's Flickr page. It both helps and hurts to see all the kids there...

:sigh:

Allie turns 18 on Wednesday.

This is likely what all the fuss is about in my head. I told Derek I'd blog it out, but now that I'm here I am still resisting. It's hard to let go and just talking about it all makes it more real.

I know that most parents freak a little when the kids grow up and move out. Empty nest syndrome and all that. But this is different.

Allie is Autistic, and when you parent a special needs kid you are far more hands-on. Even at 5 days away from 18, and living away from me, I am more involved than most parents are with their kids who are say 6 -- or maybe even 12. I don't know. I don't know because I don't know what normal is in parenting.

Destiny's life is complicated. At nearly 11 she's dealt with more than the average divorced kid. She's got not one but two siblings with Asperger's. (Her half-brother and her step-sister -- boy do I hate those terms.) Her mom is a nut-job. And I'm not just saying that as the new wife talking about the old wife. I can't get into it all here... Or can I? But it needs to be said, spoken somewhere outside of Destiny's counselor's office. So let's just say that along with abandonment issues from her mother (and a few other incidents) Des has intimacy issues. Intimacy issues at 10? Yeah. That's true. Sad, but true. And her mom likely has Munchausen's Syndrome (and I'm not the only one to suggest it). Destiny's got complications, not normalcy.

Hunter, well he lives with his abusive father. (And there's documented proof of that.) Hunter's been safe physically so far (:knocks wood:), but emotionally, that's another story. It breaks my heart. Nearly 7, he's got to deal with transitions and problems past normal divorce as well as with his two complicated sisters. And a mom who lives so far away.

What's normal?

So when I contemplate Allie turning 18... Well, it's not just about her age, or the 18 years of work. It's about guardianship. Guardianship which is not mine.

Guardianship is an icky thing in general. It's not like when I first held her I fantasized about her future with others making final decisions for her. It's not like I rocked her to sleep (as best one can with an Aspie baby) with visions of her never marrying or having her own children in my head. Guardianship is horrific. Guardianship isn't normal. Guardianship is necessary.

But that doesn't mean I have to like it.

It's not that I don't want to be her guardian, but in long talks with the professionals in her life it just seems that the best thing for Allie, especially in the long term, is to have another person do this. Not just another person, but an agency.

The decision rested, finally, on three points:

A) When I die, Allie will not need to transition to a complete stranger. (The likelihood of both myself dying and her requiring a switch in guardianship staff is really slim -- even for a paranoid mom me.)

B) When I die, neither Derek, Destiny nor Hunter will be burdened with Allie's pleas to take her home with them. Hopefully the guardianship will buffer them all from the guilt as well as keep them, especially her siblings, from stopping their lives to take her in. (I'm hoping they'll all be family and visit each other, but no one should have to not have their own families because they've taken on the care of a sibling.)

C) This agency is well-connected and versed in legal and other practical matters which Allie will likely face. Housing will be an issue again at 21, and then there are the matters of Allie signing contracts -- contracts she legally may not sign, but which others may sue over or try to enforce. That's clearly above my head, but part of a professional guardian's regular experience.

The other professionals in Allie's life seem to think that having another guardian will make the relationship between Allie and I easier. I'll no longer be the 'bully keeping her from doing what she wants,' and just be mom. More like a friend. More like the independence most grown children experience from their parents.

I have no idea how that will work.

I mean I have that relationship with my parents, but to imagine Allie as independent? Independent from me? I have no idea what that would be.

While Allie no longer lives with me, I'm the first person she calls -- for nearly anything. I'm also the person school, the group home, the counselors, the doctor etc. all call. I'm deeply entrenched in her life...

And while there have been days, days I'm not proud of but will admit to, when I've resented my place, my role, the duties -- and the unfairness of this all -- I've never not been the go-to-girl for all things Allie.

When she moved out, when I no longer had the daily grind of parenting, I was uncomfortable. But between all the phone calls and the time spent with Allie, I still have that connection, that sense of, well, guardianship. Now, in less than two weeks, that will end. Or rather I should say that it's supposed to end, but I suspect it will shift somehow.

I imagine that the counselors and other professionals, and the school, will still call me. And I'll have new calls from the guardian. But my voice will not be the final one, The Law. After nearly two decades of advocating, fighting and explaining, of being the voice they must listen to (or making myself be taken seriously, as the case may be), I won't be it anymore.

That's a big adjustment for me. And right now I'm trying to help Allie with it, explaining what's going on and why, even if I've not processed it all yet myself. That's often the job of a parent, to help the kids first and then work through it on your own.

So at least that part's normal.

Autie Moms

Autie Moms on MySpace has a great blog on Autism resources.

I missed the Larry King show on the subject, but there's a transcript here. I did see the show that The View dedicated to Autism and was a bit upset by a few things -- such as celebs making this a cause du jour, and the fact that there was/is free help -- if your child is under 3 (mine is 17, so we missed that). I watched the whole show and broke down in tears afterwards for many reasons... I feel like a child screaming, "It's not fair!"