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?

Teaching Tolerance?

(I wrote this well-over a decade ago; please excuse excessive use of quotes.)

Officials claim that including special needs children in the activities of the general student population, called 'mainstreaming,' is best for these children as they must learn to cope with and function in 'society' at some point. According to them, being in the general school setting prepares them for future jobs and other life skills. I am one parent that questions this structure.

From the point of view of a parent of a child with special needs, I see how the system fails those students in the same manner that they fail the general student body.

The average school day for a special needs child contains more frustrations than the average child's day. This is because along with the greater difficulty in mastering skills, there is the added social pressure of knowing others are not struggling as they are. And, there is the social stigma of being 'one of those' children.

I remember being in grade school, and I remember those few students who were with the class part of the day, and gone for other parts. We never knew what they left for. Our questions were dismissed with the word 'different.' No one told us what made these children different, or what they did when they left.

At some point in our young minds, those classmates themselves were dismissed as our questions were, and eventually, the word 'different' soon took on the synonymous meaning of weird.

And it is the same way today.

These 'different and weird' children desire to play, and talk and share, just as the 'normal' children do. They learn how to socialize, be supportive, work as a team, and more when interacting with others in forms of play. But special needs children are avoided due to the stigmas attached to them.

While this of course is not extremely pleasant for those 'different' children, it is not really fair to any student. For if mainstreaming is supposed to help children learn to deal with society, shouldn't these children be learning how to deal with each other? Shouldn't we be teaching tolerance and understanding, not just for race or religion, but for all people?

If the schools will not make the effort, then it is up to parents to do the educating here. Talk to your children about what it must be like to live in a wheel chair. Tell them that just because a child is different, does not mean a person isn't fun to be with. Discuss with them how a so-called handicap is not a 'bad thing' to be avoided, that while it offers challenges, it often brings something rare, maybe even a new best friend. Ask them how it would feel to never be asked to a classmates birthday party only because people have never taken the time to know who you are...

For one day, all these students, not just those with special needs, will be getting jobs and living in society as a whole. Shouldn't all students need to learn about differences, understanding and tolerance? Who can say if in the next few years the mechanic working on your son's car won't be able to hear, or if your daughter's boss may have ADD?

Preparing your child now on how to deal with all sorts of people ensures them a more successful future, in every aspect.

Classroom Decor In Special Ed

Dean Traylor gives tips on decor in special education classrooms. While primarily focused on ADD/ADHD, there's plenty of food for thought.

People With Disabilities Have Sex Too

At the Huffington Post, Kaleigh Trace posts an impassioned editorial about persons with disabilities having sex lives. While an overall excellent article, there's a sad lack of addressing those with disabilities other limits other than physical.

I posted a comment, which is still pending; this is what I wrote:

I applaud this article. It's sad that such subjects still need to be addressed, but also sadder still that you failed to mention those people with disabilities other than physical. As the parent of a special needs child, on the Autism spectrum, I struggle with getting professionals and other parents to address this very real matter. I know talking about raising sexually educated children is frowned upon in general here in the USA, but it's a reality. A reality that special needs kids must also face. And I really wished that had been mentioned in your article too.

Beautiful Memories Of A Lost Sibling

As far as I can tell, this is the source of this gripping photo and story:

This is a photo of my sister at age one and me at five. This is the only picture I have where I am holding her.

She died a decade later after this photo taken. It shows the strength of a child who was born physically and mentally disable and her motivation to keep living. She never gave up till the day she died. She survived longer than the doctors predicted. Even on this day, she will always be the strength and courage my family needs to keep living.

I share this beautiful, and, yes, sad story to remind us that even when the most fragile amongst us leave too soon, they are remembered.

Please, go read the rest. And if you're on Tumblr, every reblog results in a donation to the children with Microcephaly Foundation.

Not All Balloons Are "Hot Air"

For every MyOwnPet balloon purchased from this page, $5 will go directly to help Canines for Disabled Kids.

NOTE: MyOwnPet Balloons are shipped flat and must be helium-filled. They can be inflated at most florists, party and gift stores and many supermarkets (at NO charge) and, in the event they become soft over time, they can be refilled.

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.

Nothing Brings You Back To Blogging Like Winning An Award! (2010 Top 30 Parenting Special Needs Blogs Award)

This blog has just been named one of the Top 30 Parenting Special Needs Blogs, 2010 Award:

Parenting is difficult, but your child is far above the ordinary when it comes to solutions. How do you parent a child with special needs? How do you keep then safe and healthy? How do you combat others who don't understand and are far more willing to criticize than offer any "real" help? Where do you receive the information you need to understand your special needs child better? Fortunately, these award-winning blogs will help you on your journey to solutions; from at-home care to sending your child off into the world for school or work. How do you know what your child should be able to do at a certain ages of mental development? How can you encourage them to improve? How can you help them, and yourself, when discouraged? These blogs will help.

The winners were chosen through a scoring system that included Internet
nominations from readers, so thank you!

So now I'll do my best to get back to blogging here (but in my defense, we did move this summer and we're still not as settled in as I'd like).

'Round Here, We Call Days Like This "Saturday" (Part Two)

After an unusual start to my Saturday, we took the little van, Star, to the local Firestone shop to get a new tire, killing the waiting time at the public library across the street. Once Star was repaired, we headed out for some rattin' around: a few thrift stores and the used bookstore. Then we stopped to eat at Burger King.

We were sitting in a booth, eating, when a young woman yelled obnoxiously loud. Des recognized & identified the girl from her school as a special needs kid (as if the yell hadn't told us that already), but other than this brief alert to the girl's presence, we thought nothing more of it and continued our meal -- with Derek continuing his mocking the "Daring Girls BK toys" for being anything but daring.

Suddenly, there was a blur and then pressure on the right side of my face, quickly followed by more pressure down my right side -- the girl was pressing her face, nose smashed uncomfortably into my cheek, drooling, onto my face. Because she was sitting at the opposite side of the restaurant and a row behind me, I hadn't even seen her approach. Suddenly she was just there. Firmly there. In what can best be described as a very wet yet motionless dry-hump.

I'm a tolerant person -- even if I weren't parenting the kids that I am, I'm understanding and tolerant. So I remained still, aware that her caretaker was somewhere nearby, perhaps still ordering at the counter, and so I expected a rescue shortly.

But shortly is a long time when you're so uncomfortable.

Not just physically uncomfortable, but emotionally so.

I felt that special vulnerability that comes with another's vulnerability... Given our position, the full front of her body pressed against my seated right side, I quickly ascertained the few options I had... I didn't dare slide to my left for fear she'd lose her balance. Ditto turning my torso to use both arms. So I figured I'd only be able to use one arm or hand to touch her -- but I was afraid that even if touch wasn't something she might be startled by, the simple use of an arm to resist her crush would somehow disturb her or her balance. I also figured that the odds were pretty high that any attempt to touch her could result in, however mistakenly, a blind inappropriate touch.

Plus, these days, touching anyone makes you vulnerable to accusations & recriminations.

So I just sat there, waiting rescue of some sort -- be it the girl's own decision to stop or her caretaker's intervention.

Time seemed to stand still in that odd way time has, leaving you to just absorb all the details of the moment. Details that seem surreal in their crystal clear logic of the moment.

Her drool, unexpectedly cool, likely from her mouth-breathing and/or from pooling about the outside of her mouth, was now running down the side of my face.

I turned my face toward her, all gleaming eyes and mouth; she seemed happy.

I suppose I could have said something; but the girl wasn't talking either, so what could I say? Besides, these days, directing anyone can be described as "bossing" or "bullying," leaving you nearly as vulnerable to accusations & recriminations as touching. So I just sat there.

Aware of everything. Knowing that time had stretched -- but little of it had passed. I knew that too little time had elapsed even for my husband to do anything. I knew I just had to wait, no matter how uncomfortable & long it seemed in that moment.

In less than a minute the caretaker was there. I felt the girl leave me. Still speechless, I turned to look at her. The young twenty-something female caretaker had the girl by the arm. "I'm sorry. Remember, personal space," the caretaker said -- looking at me. I knew she was speaking that personal pace part to her charge, but addressing me in that apologetic I-hope-you-see-what's-going-on-here way. Of course I did. I've given those looks myself. As a parent, I've given those speeches & looks with far more hopeful prayer than that caretaker felt the need to express too. I smiled; I nodded. Then they were gone. Before I could even say anything.

All I could do was wipe the drool off my face and continue eating my meal as if nothing had happened. I wanted to go scrub my face; but I was afraid of how it might appear to that girl, and I didn't want to shame or embarrass her. So I unceremoniously used a paper napkin to wipe the side of my face and finished the meal with my family.

After we left the restaurant, I nervously laughed about it all. Not cruelly; just to shake off the discomfort.

And then our family had a little talk about what manners really are: they are norms and standards of behavior which are there to prevent people from being uncomfortable.

In this case, the girl, for whatever reason, had not learned them. Yet. She was still being taught about personal space.

But those things we teach the children about being polite, those things kids find silly or a pain or too formal or 'whatever,' are there to help us all feel comfortable.

Case closed, right?

But I still felt funny.

An odd mix of feeling both violated by and protective of that girl...

Even writing this post feels like dashing off to the bathroom to scrub my face clean.

But in the end, you have to do something to validate to yourself your own experience. You might begin with the giggles to wiggle the crazy-awkward feelings off; but at some point, you also want to acknowledge the deeper issues... The questions...

You don't want to blame or shame this girl who didn't know any better (or, if she did, who just couldn't control her impulses); you aren't looking for a pound of her flesh. But it isn't over. Not yet.

It could be your own personal neurosis, your decades of training in observation & problem solving atypical behaviors, but you do have to wonder, "Why me?" Why did this girl single you out? And what had she singled you out for? Was it a 'good' feeling that she impulsively followed? Or was she agitated, acting out of anger? Whatever she was feeling, why did she find you so important to share it with or direct it at? And did you respond appropriately -- or have you somehow made things worse?

You don't know the answers; you won't know them. You wouldn't dream of asking for such things & making others uncomfortable (including your spouse who was there). But you can't ignore it all in the name of politeness either.

As a writer, you write it.

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.

Crazy Like A Metaphor

I'm struck by so much in Dangerous Knitting:

My child fell apart. That is what happened in actual time. No speeding cars, no spinning yarns, no old TV characters. Those are just props, mixed metaphors that translate the whole mess into a story that has some recognition, that makes some sense. Back in the actual world, the world that makes no sense at all, my child fell apart. Fell so hard that all action stopped and we literally couldn’t move for months. We all broke down, we all went blind. We found ourselves groping through a glaring maze with no metaphorical nuance: hospital corridors, clinical intakes, treatment programs, therapy sessions, psychiatric appointments, insurance adjusters, all flourescent lights and buzzing machinery. Ravel, unravel, they have the same meaning: to become dis-joined thread by thread. Ravel, unravel, ravel, unravel, it makes no sense. Roll the mess into a ball and knit. What else could I do? Back to metaphors.

I learned to knit that year. My daughter calls it dangerous knitting, for the way I hold and pick the yarn from the very tips of my needles; the way it looks like everything is going to fall apart into a tangled mess. The trick is to wrap the yarn around my left hand, just so, not too tight, not too loose, and keep up a momentum. I always have several projects going at the same time. When one piece gets too tough and confusing, I move on to a softer fiber, an angora or chenille. But it can all fall apart, accidentally or on purpose. Everything put together sooner or later unravels.

Via Cult of Gracie.

Of Happy Madmen & Radio

(Hubby, unbeknownst to me until I was set to publish this, has already posted his thoughts on this -- but I'm not about to scrap my work! Plus, he has his own comments; and they're really only on part of the article.)

This past weekend, on our way back home from Wisconsin, hubby and I bought a stack of vintage Radio Guide issues. This is the story of just one article...

Happy Madmen, by Lorraine Thomas is the "sensitive" 1938 "educational" piece published in the weekending October 15, 1938 issue of Radio Guide on the how the "modern miracle" of radio is working wonders for America's 400,000 mentally ill.



It begins:

You don't say "insane asylum" any more. The polite and proper term is "state institution." But call it what you like, the fact remains that there are 400,000 or more patients in America's 397 homes for the mentally ill.

So first Lorraine tells us what's polite and proper -- then, with, "call it what you like," she dismisses any need to do so.

Four hundred thousand men and women, some violently insane, some merely teetering on the thin straight line between sanity and the lack of it -- but all of them hopelessly caged, locked up, barred from all but the remotest contact with "the world outside"! Four hundred thousand people living out their lives in rigid routine, living by a clock that has no meaning for them, marking off the endless days on a calendar that has no hope -- that's the picture.

(Wow. There's some compassion!)

But perhaps I shouldn't have said that. It used to be true, but things have changed a little.

Yup, because of radio.

:Pause:

One wonders if "a little" change means anything to people so hopeless, to people who find no meaning in clocks...

But the article asserts radio does wonders.

Lorraine does not.

She tosses out phrases like "mysteriously unbalanced people," and expresses such contempt I, at least, have to wonder if she is capable of any compassion at all. But then maybe that's why she was sent to survey the (as she says) self-described nuts on their radio program favorites. Perhaps cold and removed helps one facilitate surveys. Or maybe I'm to believe that the "several hundred patients" she interviewed drove her to her demeanor.

Some notable quotes:

"Most of the patients like Gracie Allen, all right -- but not because they feel any strange bonds of sympathy or understanding. They think she's nuts, and very, very funny."

"Very few patients like Amos 'n' Andy, and even fewer like Major Bowes. According to this critical census, Amos 'n' Andy are monotonous, dull, old stuff. As for Major Bowes, he's insincere, he's mean to the amateurs, he's not polite about ringing the gong, and he always says the same old thing in the same old way. 'All right, all right.'"



Radio Guide's Survey Of Sanitaria Reveals That People Who Are Mentally Distressed Favor The Following Programs:

Burns and Allen (CBS), H.V. Kaltenborn (CBS), and Guy Lombardo's Music (CBS).

I guess we know what the "C" in CBS is for.

While this article is supposed to extol the virtues of radio programming for the mentally ill, some of the stories seem more than a bit misplaced. Even crazily so.

While the story of Mrs. Diggs has its, "Oh, aren't the crazy charming!" value, it leads to a different place...

Take a look at Mrs. Diggs. Mrs. Diggs is a Negro, a man, who considers himself the most beautiful white woman in the world. He says he has letters from President Roosevelt, Will Hayes, Lindbergh and Joe Louis telling him so. What's more, he's the mother of all the white people in the world. "Mrs. Diggs" has other delusions too. At times he thinks he's Henry Ford, Rockefeller, and Edison rolled into one. He always insists he's the richest person in the world. About radio he was at first a bit dubious, until I pointed to a receiving set. Then he smiled knowingly, and acknowledged, "Oh, yes, the radio. I invented it."

You mightn't think such a delusion could be very dangerous, but that's where you are wrong. One can never tell about such things. There's another patient in this same hospital who had an even more fantastic delusion. This patient knew a lot more abut the radio than the case just quoted. This man was a radio fan. He wrote letters applying for a job to all the Hollywood radio stations, and once he even won an amateur contest. One morning, while listening to KHJ, he heard one of the popular songs of that period, "There's a Ring Around the Moon." To most of us, that song is no more important than any other -- but to Mr. Radiofan "There's a Ring Around the Moon" carried a very special and important message. Mr. Radiofan considered himself uniquely gifted person, and one of his secret talents was putting rings around the moon. Therefore KHJ's broadcast of the song could mean only one thing: they were sending out an SOS to him -- KHJ needed him to come down and teach them how to put a ring around the moon. Mr. Radiofan lost no time. He ran up a $27 taxi-bill going from Santa Ana to Los Angeles. Asking the taxi-driver to wait, he went into the studio. Soon talking with the secretary of the man in charge of employment, he asked for his job -- the job that was waiting for him. Impatient at the questions he was asked, he suddenly took out a knife, opened it, raised his arm and stared menacingly at the terror-stricken girl. She screamed, an announcer ran into the room -- and was stabbed in the throat. Before the maniac was finally overpowered, another bystander's scalp and clothing were in bloody shreds, and the announcer had bled to death. The real tragedy in this story is that the boy's death was so unnecessary: Mr. Radiofan was a paroled patient from a midwestern institution.

I think the real tragedy is Lorraine's article.

PS Searches returned nothing on such a murder at KHJ; but I did find this 1931 KHJ aircheck of Bing Crosby.

High-Five Fridays #12

1) Gracie's re-started her cult again.

These next few may seem to be a "downer", but that's only the case if you don't feel like respecting the honesty and truths which they bring...

2) Bunny's sobering post, Food Is Not A Bad Thing:

Have you ever stood by and watched someone die and not done a damn thing to stop it?

I have. It makes you feel like shit. I won't do that again.

3) Sarah Lynn's honesty regarding her marital communication requires some thought... There's no quote to grab here because it's a process, you know; so read it.

4) Suzy writes What You Just Can't See, which contains an honest truth regarding special needs parenting:

I have been through this grief before. I know that it will fade, and when it does I will feel whole again. And because I know that you can’t mother this way, or live fully this way- I bury it within me.

5) And a high-five to all of you who get your Mother's Day gift free this year -- with Buy One For You, Get One For Mom! We're giving away free copies of Suburban Diva: From The Real Side Of The Picket Fence, by Tracey Henry with purchase. So go get 'em and give 'em!

Want to give high-fives too? Find out how to give your High-Five Fridays here!

The purpose of this meme is to give high-fives to 5 people, posts, blogs and/or websites you've admired during the week. I will link to everyone who participates and leaves a link to their 5 high-fives on Friday. Trackbacks, pings, linky widgets, comment links accepted!

Visiting fellow High-Fivers is encouraged! If you participate, leave the link to your High-Fives in others comments (please note if NWS).

Find more High-Five Friday folks here!

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.