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Green Bloggers and Spam

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The thing about blogging is that it’s this awesome, creative outlet for absolutely anyone that wants to do it. And absolutely anyone can read your words, interpret them, MISinterpret them, and misappropriate them.

 

Imitation is the sincerest form of flattery, they say. I don’t know who they are. Probably some asshole(s) that gets paid to write positive affirmations for magazines that are heavily photoshopped. What do they know?

 

Anyway, blogging… Sometimes you come across a really talented writer whose words seem to go straight through you, right to your heart. The writer at Lexistential.com is one of those writers. As such, there have been some in the blogosphere that have absconded with titles, sentences, and whole portions of what she’s written. Unscrupulous vagabond! But it got me thinking about how to borrow a style from someone without actually stealing. You know, take something you like and make it your own, while getting your message across.

 

I went with Dr. Seuss because, who doesn’t love Dr. Seuss? Goddamn it, you just can’t beat a good rhyme! So I give you my ode to unscrupulous bloggers and those in the (autism) community who do more harm than good.

 

Green Bloggers and Spam

 

Bloggers bloggers, small and green

Why you need to be so mean?

 

I can’t abide the theft of prose,

you smell worse than hobbit’s toes.

 

“Don’t kill your kids!” you squawk and shout,

Captain Obvious, you are a lout.

 

Parents crying, reaching out

You stomp and snort, deny and pout.

 

Families who in need of aid

You give them rhetoric that you’ve made.

 

“Call 9-1-1,” you loudly say,

Police will help you right away.

 

They arrive at your door,

And make a report, but nothing more.

 

But never fear!

There’s the blogosphere…

 

Pithy sayings, custom made.

All their readers gutted and filleted.

 

Your hollow words

and useless tools,

You play us all for insipid fools.

 

Because people know you offer naught

The emperor’s new clothes are what you’ve bought.

 

Now your ugly mouth

it foams with spittle.

 

Let me serenade you

with the world’s smallest fiddle.

 

I do not like

Green bloggers and spam.

 

I do not like them

Truth I am.

 

flanseuss

 

My 4th Grader’s Letter to the Boy Scouts of America

When is the “right” time to discuss sexuality, specifically homosexuality, with your child? Until today, I didn’t have an answer for that question. But today when I picked up Connor from school, he asked me if I knew about the Boy Scouts of America (BSA).

 

(deep breath)

 

I explained to him that I was very familiar with them. And I decided to explain to him why we never pursued membership for him with their organization.

 

“What does ‘gay’ mean?”

 

So I told him that it’s when a man wants to date or marry another man, or a woman wants to date or marry another woman. And I told him that there’s nothing wrong with that, it’s just the way they were born. Some of us are born to love someone from the opposite sex, but not everyone.

 

“It’s not terribly different from being born autistic, it’s just the way you are.” I told him.

 

And we talked about their rule that members must believe in God. He asked me, “Did their God tell them not to like gay people?” And, of course, I told him the truth.

 

While we worked on homework, he looked at me and said “I don’t like the rules those Boy Scouts have.” I asked if he wanted to write them a letter and, to my surprise, he said he did. Writing has always been hard for Connor, so I helped with spelling, punctuation, and paragraph spacing. I prompted him to tell them who he is and where he goes to school. But the rest of the words are his alone. And he felt very strongly about adding the sad faces.

 

unnamed

 

There is simply no way to describe the kind of pride you feel as a parent when your child shows you that they care more about what’s right than what everyone else thinks. This parenting gig is HARD, no doubt about it. But days like this are what keep us going during the more challenging of times. I think this one will keep me going for a good, long while.

 

Dr. Phil’s Interview with Kelli Stapleton

As many in the autism community know, Dr. Phil aired part 1 of his interview with Kelli Stapleton yesterday. Part 2 will air today.

It was hard to watch for many reasons. What we’re witnessing, in all the splendor of the mid-day talk show circuit, is the complete destruction of a family. People’s lives have been left in shreds…small pieces they must gather up and try desperately to reassemble into some sort of grotesque mosaic of life that barely resembles their old lives. Three children who once had two loving parents, now only have the presence of one loving parent.

Kelli’s actions changed their lives forever. She knows that. The reasoning behind her actions clearly shows someone who was not in a mentally competent place. It’s obvious that living with the challenges of autism for many years was a contributing factor to her lack of mental stability.

But I wish Dr. Phil’s show had been edited differently. Was it necessary to see the same clip of Issy attacking Kelli, and Kelli’s piercing screams, four times? Granted, maybe they had limited access to video footage, but still…was it necessary, and was it even right to use it? How would Issy feel, having that played on national television?

As Kelli stated, Issy is a little girl who doesn’t want to hurt her family members, she just can’t seem to control herself. She’s a little girl with a disability who was exploited. She didn’t have a choice about what was shown on the show, and that’s not right. If they wanted to demonstrate the severity of aggression, they could have simply interviewed people who have worked with Issy.

In addition, I don’t feel like it was made clear to viewers that Issy is not representative of everyone’s autism. One study has suggested that as many as 58% of children on the spectrum exhibit aggression, whether that is due to autism deficits or a comorbid condition, is unclear. Despite this, it’s irresponsible to let viewers assume that Issy presents as the average autistic person. This portrayal only serves to enforce a negative stereotype about autism that is already prevalent in our culture. It should have been reinforced that the Stapletons were living under extreme conditions that don’t reflect everyone’s experience with autism.

Despite these glaring errors, there was merit in this interview if, for no other reason, than for Kelli Stapleton to let the world know that she is remorseful for what she did. I speak for no one but myself when I say that I needed to hear that from her. I needed to know that she was sorry, that she had an emotional response to what she’d attempted to do to her child.

I believe it’s an absolute truth that every single person has a breaking point. Each person’s breaking point will vary, depending upon the life experiences and personality of that person. So whatever combination of life events and personality came together, it found Kelli at a point where she no longer was able to make logical or competent decisions.

My hope is that someday there will be a set of protocols in place to address families living with chronic aggression and violence. It is simply not possible to live with chronic aggression and not be negatively affected by it. I have no idea what that would look like, whether it was mandatory, ongoing involvement of CPS with families living under these conditions, or something else in its place, but I fear that we will not see an end to tragedies unless we do something to help these families.

Kelli has been a friend to many in the community, and has helped many struggling families. I wish she could have helped herself. I wish she would have let someone else help her. I wish her family wasn’t broken and that her daughter wouldn’t always have the memory of her mother trying to end both their lives.

I wish…

I wish there were answers.

I wish there was peace for these families.

I wish there was more compassion in the world.

And I really wish there wasn’t a part 2 to this interview today.

 

But most of all, I wish for Issy to have some peace in her life. To be able to find her way, with support, and to cease being fodder for journalists and media outlets.

As for my friend Kelli, in her own words, she should “be in jail for a very long time.”

Power and Privilege: Shutting Down Dialogue in the Autism Community

It’s been a year since Kelli Stapleton tried to take her life, along with the life of her daughter. A year seems like a good, long time, yet people at TPGA that style themselves as “autism advocates” still don’t want to talk about autism and aggression. Although aggression affects many people on the spectrum, it doesn’t fit the autism profile that advocates are trying to promote, which is one that only involves positive attributes.

 

Parents want to have the conversation about severe aggression and lack of services and what that scenario does to a family. But they continue to be shut down. Parents are told that they’re “privileged” and don’t have the right to steer a conversation that includes the topics of aggression and lack of services. Yet the conversation is being controlled by people that epitomize the very privilege they strive to censor.

 

They don’t want us to talk about the appalling lack of services, yet one of them has a 1:1 aid for her son. How many of us have a 1:1 aid? They don’t want us to talk about autism and aggression, yet they both have aggressive children. They don’t want parents to be part of the conversation because they’re “privileged”. Yet one of them went to Europe for the summer and the other to Hawaii. How many of us had summer holidays abroad? How many of us didn’t even get a vacation? How many of us would sell a kidney just to get away from the house for a single day?

 

But you know what, that’s okay. Not everyone can afford a luxury vacation, and there’s nothing wrong with someone who can afford that, except when they’re silencing other people for being privileged. People that are more privileged than most of us are not allowing you and me to be part of the conversation because they say we’re privileged. Does anyone see anything wrong with that picture?

 

They don’t want to hear that severe aggression and lack of services can have any correlation to a parent spiraling into such a dark place that they would attempt to harm themselves and their child. Yet, time and again, parents have come forward to admit that they have been perilously close to that line. And while that doesn’t, in any way, justify harming a child, there is an undeniable connection between living with chronic, severe aggression and the erosion of the mental stability and coping skills of the caregiver/parent.

 

Discussing correlation does NOT equal justification for a crime, however discussing services is a conversation that needs to happen. It has to happen so another child doesn’t lose his or her life; so another parent doesn’t feel this is the only option. It has to happen with the people who are living with severely aggressive children. It does not need to happen with the very people our children are not, the very people who are trying to silence those who need to speak.

 

In case that wasn’t perfectly clear: DISCUSSING CORRELATION DOES NOT EQUAL JUSTIFICATION FOR A CRIME.

This conversation isn’t going to go away until families finally get the support they need. The conversation won’t stop because a couple of Bay Area hausfraus with a sham of an unlicensed organization and absolutely no credentials in mental health want to shout us down. In truth, they have no more legitimacy than any other autism parent, because they have no special training or credentials beyond being a parent.

 

This conversation needs to be had, time and again, until people start to listen. This conversation can’t be closed down because there are families hanging in the balance. The conversation must continue until there is real help available to those that need it. Calling 911 and having your child taken away, parental rights terminated, and your other children taken by CPS isn’t the support and help that families need.

 

Kelli Stapleton is my friend. She made a terrible, life-changing choice that will haunt her family forever. Her children will be forever damaged by what she did, especially Issy. I don’t want this tragedy to happen to another family. More than that, I don’t want the public to believe the lies being perpetuated by advocates about Kelli, because those lies have far-reaching implications.

 

The biggest lie was that they had plenty of services for Issy. The Stapleton’s had just learned that Issy would not be allowed back in her school, either because of the aggression or because the behavior plan was too intensive for them to implement. Kelli was going to have to move three hours away from her husband and other children, alone with Issy. There would be no services waiting there for them. None. Kelli would have been completely alone in supporting Issy, whose aggression resulted in prior hospitalizations for Kelli.

The other big lie was that Kelli was just a monster that only cared about herself. Following is a quote (used with permission), from the mom who blogs at Stay at Home Crazy: “Kelli saved my life, along with a couple of people I talked to here and on the Outer Facebooks. She talked me off a ledge. I wish she had let me do that for her. I don’t want anyone to have to feel that there is nowhere to go and no one who will understand. I have been quiet on most of the discussions because I have been getting anxiety attacks whenever I read or try to write about it. But I care. About you guys, about Kelli, about all the parents and all the kids struggling to make it through.”

 

The people that call themselves “advocates” have no problem having a discussion about appropriate services and training for emergency responders after an autistic person is harmed or killed by a police officer, but they won’t allow the same conversation if a parent crosses that line?

 

Don’t let people that are far more privileged than the rest of us dictate the conversation. Write. Blog. Write to your congressman. Refuse to be silenced. Refuse to be bullied.

 

Autistic people are worthy of love, respect, kindness, and empathy, no matter what their challenges may be. Asking for help, for support, doesn’t diminish their worth or value. In fact, it may be the most loving thing you ever do.

The Handsome Compensation Scale, According to Me

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Remember how I mentioned in another post that I’ve been busy this summer? Well I thought I would share a piece of evidence that illustrates just how much I’ve been juggling lately, and how little time I have leftover for noble pursuits like blogging and power washing the siding on the house.

 

First, let me show you how far behind I am on email. Look at that down there, can you believe that?

 

I basically just gave up.

I basically just gave up.

 

I do try to glance through my email once a day so I don’t miss anything important, like coupons for Old Navy or opportunities to donate money to (insert name of any politician here). And it’s a good thing I do, otherwise I would have missed out on this fantastic opportunity for whatever it is that they are promoting. I really have no idea, frankly. But take a look at this wonderful offer they have made me:

 

This is too good to pass up!

This is too good to pass up!

 

 

Not just a handsome amount, a “VERY” handsome amount. Well hot dog, count me in! But first, just to clarify, let me get some further details on just how good looking we’re talking about, in terms of compensation. So I responded thusly:

 

This should make it easy to negotiate the attractiveness of the compensation.

This should make it easy to negotiate the attractiveness of the compensation.

 

 

So I waited. And then I waited some more. And, you guessed it, here I am, still waiting to hear back from Susan. Is she, perhaps, confused by my rating system? Could it be that she was thinking of something more in the Jack Black range, and is too embarrassed to tell me that she can’t provide me with even so much as a Ewan McGregor for such an important transaction? I just don’t know. But I thought that maybe the wording was not clear enough, and perhaps if I provide a pictorial illustration it will help facilitate our negotiations. So I’ve developed the following Handsome Payment Scale for clarity:

 

I've never gazed upon anything so crystal clear in all my life.

I’ve never gazed upon anything so crystal clear in all my life.

 

 

I hope Susan sees this as my good faith investment in a mutually beneficial relationship. Unless, of course, she was thinking more along the lines of Steve Buscemi. I’ve got to have some standards, after all.

 

Ways In Which I Either Failed or Excelled at Being a Mother Over the Summer, Depending Upon Whom You Ask

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Sometimes I’m pretty certain that I’m not up to snuff with this parenting thing, yet I lack the intestinal fortitude to actually do something about it. Hence, weeks stretch into months, and then we’re almost ready to start a new school year. By that time I figure it’s too late to turn this ship of fools around, so I let it just continue on its present course.

 

There’s always next summer, right?

 

If you’ve been a little, um, lackadaisical with your summer routine, then this should perk you right up and make you feel like you’re on top of your game. Because, man, I don’t even have any game this summer.

 

  1. I did not make Connor do one single worksheet this entire summer. Not even one little math problem. I should probably feel bad about that, yet I don’t. I figure that the 6 weeks he spent at ESY covers us for doing schoolwork during the summer.
    .
  2. The 8:00 p.m. bedtime routine went straight out the window. He went to bed at 8:30, instead. Or 9:00. 9:30 at the VERY latest. Except that one night we were out late bowling and it was, like, 10:00 p.m.
    .
  3. Between the two of us, we have acquired enough coal to light up the entire Minecraft universe with torches from one end to the other…probably more than once. And still I grab more coal whenever I see it. I don’t need more coal, but it’s like I can’t stop myself from compulsive coal-hoarding.
    .
    TORCHES
    .
  4. It’s possible that I let him sleep in his roller skates. A couple of times.
    .
  5. One day at camp a kid pushed Connor and took the ball from him. Connor waited until he had possession of the ball again, and then promptly chucked it at the kid’s head. Even though I made him write a letter of apology, I secretly felt more than a little proud of him.
    .
    ball to head
  6. I wrote down Lexi Magnusson’s cell phone number and encouraged him to crank call her.
    .
  7. The only people that call our home phone are solicitors. I always let Connor answer the phone because his first question is always “what are you selling?”
    .
  8. Tried to get him to listen to Guns ‘N Roses but he didn’t like it. I promptly tried to sell him on Facebook because, obviously, he can’t really be related to me.
    .
  9. Somehow my husband accidentally let him hear the song Wiggle by Jason Derulo. Now he randomly starts singing, “You know what to do with that big, fat butt!” at inopportune times. And I let him, because it makes me laugh.
    .
    wiggle
  10. Many, many days were spent in swim clothes, from morning to evening. The upside is that it sure cuts down on laundry. The downside? There is no downside, as far as I can tell. Neon orange and green swim trunks with a huge shark face, jaws wide open, is completely acceptable apparel for the grocery store, restaurants, bowling alleys, and anywhere else our summer adventures took us.

 

After writing this is occurs to me that I’d better get my crap together pretty quickly. T minus 3 weeks until school starts, and I’m pretty sure they’re going to expect some kind of parenting on my part.

Autism: Progress and Betrayal

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I know, I KNOW. Remember when she used to blog? When she had funny things to say?

 

How banal to say I’ve been busy. Which I have, don’t get me wrong. But I’ve also been…contemplative. Wondering if I should continue to write about autism now that Connor is getting older. Thinking maybe I should start a different blog, one with a more general topic and scope, so I could write about ridiculous things like middle-age and meeting Hillary Clinton on her book tour.

 

I still don’t know. I feel icky in the in-between space; unsettled, restless. But until I know for certain what I want to do, IF I want to do anything at all, if there is something I want to put down, then I will put it here.

 

This summer, I’m cautiously optimistic to report, has gone so well. We’re light years from where we were 3 or 4 years ago. Those we summers filled with dread and endless, debilitating worry. I didn’t like to write about those summers because I didn’t want to revisit how painful those times were, how scary. “Will it always be like this?” I asked myself daily. But Connor has grown and matured, albeit not to the extent of his peers. But there is progress and more understanding of what behaviors are unacceptable and the ability to try and control his impulses.

 

The reason it’s almost just as hard to write about how well things have gone this summer is because I know it’s not like that for every body. I remember how I would wince when I read about how great someone’s child was doing, or how much fun they were having. Not because I begrudged them that experience, but because I longed for Connor to have some of that inner peace that would allow him to enjoy himself more and build happier memories.  So I know that it’s hard to hear or read sometimes, wishing things were easier in your own world and hoping there were smoother days ahead.

 

So it’s okay if this is too hard for you to read. I understand and won’t feel badly if you click away now, to find momentary solace in something funny.

 

This summer has been a continuation of last summer. Days split between ESY and summer (day) camp. It’s been a critical factor in our success because it breaks up the day into halves, avoiding the common issue of Connor getting bored and restless when he spends too much time in one place. It’s also important because he continues his educational skills throughout the summer, minimizing the shock of being back in a classroom after 11 weeks off.

 

He did awesome at ESY. We had positive, happy notes every single day. Notes talking about how well he participated, how much fun he was having, how much of a pleasure it was to have him in class. And I can tell you that those notes are a monumental change and shock to the system after spending years receiving negative feedback on a constant basis. Those notes were healing in a way you can’t imagine. Every note about every problem, every mistake, every stumble just chipped away at the confidence I have for my child, and I resent the hell out of that. “Tell me something good about my child! Tell me there is value in him, that he is worth teaching and knowing!” Why do we have to ask for that? Why do I need strangers to confirm for me that my son is a beautiful, smart, creative soul? I don’t, no more than I need those people to tear away pieces of him, as though they were stripping leaves from a tree.

 

And camp has sailed by with no more than a small blip, here and there. Days where I didn’t cry as I drove to camp to pick up Connor. Days where I didn’t fear for my job because I was taking yet more time off to deal with issues at camp. There were smooth days, happy days. And we spent the summer getting ice cream and watching fireworks and ordering pizza and staying up just a bit too late. And we planned occasional “family fun nights” where my husband and I were both out-bowled by that boy. I have no shame in my score of 54, so you can just put that out of your mind. I earned that 54. And Connor…well, he earned that 108. But let’s be fair here and keep in mind that the gutter guards were up for his turns. That’s all I’m saying. You know, if I had gutter guards…

 

And he was so freaking happy after each of his turns, because he was beating his parental units.

 

I swear, this is a happy jump.

I swear, this is a happy jump.

 

But then, right at the end of ESY something did happen that derailed all those peaceful feelings. One day, the bus driver walked Connor to the door and told my mom that he’d had very bad behavior on the bus. She didn’t elaborate, so the next morning when I waited with him I asked her for more details. She got off the bus and asked me if he was on only child, which he is. She said he was the only child on the bus without siblings. Yeah, and? I guess she was trying to say he’s spoiled, which is funny (not haha) because we have spent so much time working with behaviors that I didn’t get to spoil him nearly as much as I would have liked. She went on to say that the afternoon before he was playing with his seatbelt and sharing his toy with another  child on the bus.

 

“My spoiled only child was sharing a toy? Well that sounds like a commendable character flaw to me!”

 

Well, it seems that “kids with autism have problems with sharing and they don’t always like to give things back.” I simply cannot tell you how relieved I was to get some needed insight about autism from someone who had spent many, many hours driving them places and really knew a lot about what it’s like to be an autistic child. So I asked if there was an aide on the bus, and she said there was. And at that very moment, the aide stood up and came to the door of the bus to tell us that “he just said to me to tell you all to stop talking so we could hurry up and go.” And by the way she said it, she was absolutely not amused and, it seemed, was rather disgusted by what he said. So I laughed. I laughed and I said that what he said was a very typical aspie thing to say. He wasn’t being rude, he was being matter-of-fact about the reality that they were going to be late. “Kids with autism often get anxious when things go off schedule.” Put that in your holier-than-thou pipe and smoke it, sister.

 

Anyhoo, I called the bus company and asked them to pull the tape from that afternoon so I could see it. But not before I came down hard on Connor about safety on the bus and following directions. For his own good, because safety is important and so is listening to adults. That’s what I told him.

 

The weekend passed and on Monday the manager of the bus company called. He’d pulled the tape from that afternoon and watched it, and he was calling to apologize to me. I was confused. He told me he’s seen absolutely nothing on the video that he would consider a safety concern or a behavior problem. He said he has three children, and he knows how kids can be, but there was nothing that Connor did wrong. He said a few times he seemed “antsy”, which is pretty common considering the ADHD. But no behaviors. I stammered as I asked him why the bus driver would have been so upset, so adamant that he was a problem on the bus. It didn’t make any sense to me. It didn’t make sense to him either, but he assured me several times that he would be addressing this with both the driver and the aide and that it would never happen again.

 

But the fact that it happened at all…why? Why would someone lie or exaggerate about a little boy that already has enough challenges to contend with every day? The confusion began melting away in the heat of the burning, seething pool of red-hot anger that was boiling in my gut.

 

Every single mother in the world will tell you this one very basic premise about her offspring: Don’t fuck with my kid.

 

But there was nothing I could do, because confronting her on the final morning of ESY would only bolster whatever flimsy excuse she would try to create. So that morning I drove him to ESY myself, leaving before the bus arrived. I’m sure she wondered where Connor was that day, but then it all clicked into place later when her boss called her in to talk about what she’d done.

 

I hate that he is old enough to be able to remember this someday when he’s grown. It’s not a pleasant memory, knowing that someone you’re supposed to be able to trust lied about you. No matter how much I apologized, it can’t erase what happened. My trust is broken now too, so I will never again take someone’s word over my child. Not without ample evidence.

 

But I haven’t let that cast a shadow over the wonderful progress he’s made and the great reports from ESY and camp. We are so far beyond where we were when he was 5. Communication has been the biggest factor in his progress and success because he can express himself and make his needs known. All the damn time, as a matter of fact. Right this second he needs my computer so he can play Minecraft.

 

I hope you all are having a relaxing summer and enjoying some qualify family time. It goes by so fast, don’t let is pass you by. Never stop believing that there will be progress and growth.

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