We Do Not Cross the Line

Just after the recent murder of Alex Spourdalakis, yet another parent has attempted to murder her autistic child.

Services to help families are not available to the degree they are needed, often leaving parents of children with intense needs feeling abandoned, depressed, suicidal and, in some cases, homicidal.

I just sincerely wish these conversations could be separate. They must remain separate.

I know how it happens, how the conversations seem like they should go together. As parents of kids with intense needs, medical, mental or physical, we are each slogging through life, with easy days and hard days and harder days, until something really bad happens, then we are triggered to say to the world, "See, look how hard this is. Why doesn't anyone care?" But the problem is that caregivers say this at the very same same time that someone was trying to kill their child. The minute you tie those ideas together the conversation changes into, "See, look how hard this is. We told you. Have empathy. The poor mom was really struggling. You can't blame her."

But you can. You must blame her. We must unitedly and unequivocally say that we can blame her because she tried to murder her child, and those other caretakers, they actually killed their children. We can't "cut her slack" because she was having a hard time. We can't even cut her slack because she had been injured by her child, badly. We cannot say, "We understand why she did it. You know her life was so hard because of her daughter,  because she didn't have enough help, because she was burned out, because..." Because what? So what do you mean exactly? So it's understandable when there are days or weeks, when life is hard...

Like when my son didn't rest...for years?

He didn't sleep, he screamed. He bit himself until he bled. He bit us and we bled. He lashed out. He threw himself to the ground. He broke my nose. He gave black eyes to me and one to his grandmother. We went to doctor after doctor, and therapy after therapy to no avail. We had no medical insurance for him because he had pre-existing conditions. We paid the bills with credit cards. Our life fell apart a little bit, a lot of the time, for several years. There are parts, emotional parts, that are still raw. It was very hard. I was very sad, and hope was hard to find on most days. So because it was hard, because almost every hard thing led back to my precious boy who was beside himself writhing in some kind of anguish that no one could identify, unable to speak to us and tell us what was wrong, so it would have been okay to kill him? Of course not.

NEVER OKAY.

...and I know some of you know her, that mother, and maybe I'd feel differently if I did, but I don't. I can tell you this, if my best friend tried to kill her son, you can bet your ass I'd want her in jail. I would feel horrible. I would be certain that I had failed her as a friend. I would mourn the loss of my friendship, but those things are about me, and it would not change the fact that we cannot even intimate that there are excuses as to why we can kill our kids. I would want her in jail, held accountable without question. We can add in all of the complexities of our weak family support systems, and lack of services, and all of those complexities may be real and truly horrific, but they do not, ever, explain away the fact that this woman tried to kill her child.

We can't cross that line if we want everyone to value our kids and give them an equal place in society, because in every other way that's what we ask people to do. We want our children to have a place in a proper educational setting, and we want them to be able to go to the movie theater and grow to have meaningful work, and a safe place to live, and all sorts of basic rights. Then when it comes to the most important right, the right to live, that's where you cross the line?

I thought we had all decided that we don't want our children to be  marginalized and put to death because they do not contribute enough to society. Don't we want our children to be treated as deserving to be called wholly-human? A human who has every right not to be murdered because of their neurological makeup? When we tie the two conversations together it glares at me, and I am not autistic, so I cannot imagine what it would feel like to be autistic and read that a parent could, "see how that could happen." I don't think most parents think that's what they are saying when they offer empathy, but even said eloquently, this is all I hear...my autistic child is not as valuable.

but there can be no excuses. 

We Do Not Cross the Line.

Scarborough on Autism

In case you're wondering, I'm pretty sure my son is not going to grow up to be a mass murderer. Thanks Joe Scarborough--it only takes one idiot to undo advocacy.

"You don't want to generalize," said MSNBC's Joe Scarborough, but that's exactly what he did when he said that James Holmes, the young man in custody as the Aurora, Colorado shooter,  was "on the autism scale."

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 "As soon as I hear about this shooting, I knew who it was. I knew it was a young, white male, probably from an affluent neighborhood, disconnected from society — it happens time and time again. Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale," said Scarborough, whose son has Asperger's syndrome. "I don't know if that's the case here, but it happens more often than not. People that can walk around in society, they can function on college campuses — they can even excel on college campuses — but are socially disconnected."

What compounds the irresponsibility of his statement is that Scarborough is the parent of an autistic child. So he managed in one sentence, one very publicly stated sentence, to make autistics out to be dangerous potential murderers, and make parents of children with autism look like asses.


Here is one autistic adult's perspective, her  open letter to the media:

I am an Autistic adult. In the wake of the tragic shootings in Aurora, Colorado, my community was sitting not only in the sadness that all such tragedies bring, but also in fear and anticipation that once again, we would be your scapegoat. Once again, you would start declaring that we and the killer had the same neurology before the bodies were even cold, before the initial tears had dried.And again, you did not disappoint. Again, you went to declare the killer mentally ill or Autistic before you even possibly had a chance to talk to anyone qualified to make those calls. Again, you cast yet another layer of suspicion on my community. Again, you made me someone to be feared.

It would be lovely if Scarborough could apologize in as grand a way as he made his first declaration, but news cycles don't really encourage apologies. It would be even better if he took the time to educate his viewers about autism, perhaps he could, I don't know, have an autistic on his show, or talk to one, like his own son.

A journalist, Mike Elk, who recently "came out" as autistic,  asked Scarborough to educate:

Hopefully, Mr. Scarborough will retract his remarks, as well as host a broader discussion on Autism to spell away the many stereotypes of Autism often spoken by non-Autistic people such as himself.

What message did Scarborough send his own son with his proclamation this morning? What kind of self-loathing is he trying to instill in his child? This kind of language and the stereotypes it perpetuates makes it harder for young autistic adults to move through daily life, it stirs up anxiety in every adult autistic that we have once again gone back two steps, or more, and it makes other parents guilty by association. 

It's easy to have a gaffe and I am all for allowing someone to apologize for something misspoken or said in haste. Talking heads are bound to make a mistake now and then, but then I was thinking, I'm a parent of an autistic child, and I know many autistics, and it did not occur to me at all to diagnose the shooter with autism. Troubled? Yes. Disturbed? Of course, but autistic? Really? Where did that even come from? Because someone said he was a loner? The fact that Scarborough "knew who it was" is so troubling and disturbing, because it leads me to believe that this is not a gaffe in any way, not a "whoopsie" but fundamentally the way he thinks. 


and that, to me, is dangerous.


Sign the petition that Rachel Cohen-Rottenberg created demanding a retraction.  

Other people, other posts:
Emily Willingham:  Mental illness, autism, and mass murder, or why Joe Scarborough needs to shut up
Lydia Brown at Autistic Hoya: All I Want to Do is Weep
Jess at Diary of a Mom: Dear Joe
Lydia Brown The Dangers of Misrepresentation
David Cullen The Unknown Why in the Aurora Killings
ASAN Statement
Caroline Miller at Child Mind Institute James Holmes and the Downside of Amateur Diagnoses

Proud to Be the Crazy 'B' on the Bus: Just Say Something

the cashier: Diapers eh? Expensive. I bet you can't wait until they are out of those.

me: Yes, we'll be rich. Uh, I have a special needs kid, so it may take awhile.

Oh, that's hard.

Yes, mostly for him. He gets frustrated. But he's doing great. He's a great kid. He goes to the Amazing Autism Wunderskool.

Oh, autism.  Is he high or low functioning?

Well, those terms really aren't very accurate.

Oh?

No. For example, there are some autistics who will go to college, but may still have trouble putting their shoes on the correct foot. I have a friend like that. Does that make sense?

Yes. I get it.

My son has a lot of trouble with communication. He's non-verbal, so that makes it more challenging for him to communicate his wants and needs.

Huh. I have a neighbor. He's about 30. He lives with his parents. He's very severe; lots of grunts and sounds.

That sounds like my kid. I say "profound" instead of "severe."

Yeah, profound. Well he rides the same city bus I do, and there were some high school kids on the bus too, and they were teasing him. I told them to knock it off, and they did, for that ride. But the next time we were on the bus it happened again, so I stood up and yelled at them. I was probably a little more agitated than I had to be, but it made me so mad. They had no right. He's a great guy and they have no right. We go to the same pool, and you know, when he's there he is just so happy, splashing and laughing. He makes us all have a great time. Then those kids go and tease him, so you know what? I let 'em have it.

Wow, well thank you for standing up for him.

Well the bus driver thanked me too, but I didn't do it to get thanked. I just had to do it. It doesn't take much you know, it doesn't take much to just say something.

The bus driver told me that those kids call me 'the crazy old bitch' now. But I figure it's worth it. I'll wear that name like a badge of honor.

They don't tease that young man any more.

Autism: Around and About and Aware

We are on week two of spring break around here, and my lovely pre-teen son is taking nicely to sleeping in until 9:30am (thank you to Sage who is getting my girl to kindergarten this week!) While it usually feels a little frantic and unstructured during spring break, this year feels like some mostly calm time I've been able to spend with each of my kids, and around visits to the movies, day trips and the museum,  I've been keeping myself busy.

It's Autism Awareness month. Since we are well aware of autism in this circle we have moved on to Autism Acceptance month instead. Thinking Person's Guide to Autism has a great "Slice of Life" series where we have given the same set of questions to autistics all over the spectrum. These are people in your neighborhood, in your classrooms. They work in the cube next to you, and skateboard at your local park. They are individuals, not statistics. Those 1 in 88s and 1 in 54s and all of that data that's been flying about? 'Those people' have always been with us, but we are getting better at spotting autism earlier, which will hopefully get everyone the support needed to be a happy, healthy, valued, and productive part of society. I know that "awareness" is still important because there are people that are ignorant, misinformed, or disinterested...even my spell check does not recognize 'autistics' as a word, and we have a long way to go, but we are focusing on acceptance around here.

I have another post up at Dandelion. I'm a regular contributor there,  or at least I am when I can get my act together. Dandelion is a great resource for Bay Area parents, and is not just autism focused.  I write there about three times a month. They have a very active events calendar, and happily take new events, so if you have a special needs benefit, auction, speaker series, or sibling group, head to their calendar and ask to have it added.

Last month Care.com asked me to write an article about Learn the Signs, Act Early campaign that the CDC has put together. It can be very emotional when you think your child is developing differently than other kids, but the important thing to do is keep your head on and check-in with a professional who can complete an evaluation of your child's development. With good information you can get your child every support he or she needs. I have more to say on this, and some good tips that I figured out when we were still figuring out our boy when he was very young.

The wonderful Ellen Seidman, who writes Love That Max turned over her Parents.com column this month to celebrate Autism Awareness/Acceptance. Shannon wrote a lovely post about Parenting Autism in the iPad and Internet Era.
Ellen asked me so great questions, including what are three things I want other people to know about my kid. My number one answer was: “Just because he can’t talk doesn’t mean he can’t hear you. Kind words, mean words, he hears all of it. With my son, and with any person with disabilities we should start with, “Hello.”” You can read the entire post here. 
I'd like to thank Ellen for hosting us in her column. I feel lucky to have her on "my team."

And I am nominated at Babble.com as a Top Autism Blog for Parents. Thinking Person's Guide to Autism has been nominated in the "write-in" section too, so stop by and give us a thumbs up if you think jennyalice.com or thinkingautismguide.com serves parents well. Maybe one of these days I will either a) make it on a list that does not require someone to vote or b) stop feeling like I need to chase votes once I am on a random list. Next year I am going to create a list of Top Autism Blogs in My Family. I am pretty sure I will make the cut :) I was happy to see so many of my fine friends and their amazing words honored already, and knowing that we are all serving this community is a great feeling.

There are lots of other exciting things in the works. TPGA  has been all over the radio across the country, so if you thought you heard Shannon Des Roches Rosa, you probably did. And we are working on more venues for book readings. I was thrilled to find out last week that an education class for teachers is using the book as classroom text. If you know anyone who is interested in using the book as a text in an educational setting please contact me: jennifer dot myers at gmail dot com. I am happy to help get the book out to you.

My voice is hoarse and my house is a mess, but my heart is full and my kids are happy.
Be well friends.

Every Kid Is A Person

I wasn't asked to have a conference with Lucy's teacher, Ms. June, but Lucy asked me to make an appointment just the same. I sort of wanted to check-in anyway given that my daughter is already a different kind of person than I was at her age with her own way of learning things and her own worries and passions.

She is enough like me that I see myself --my mannerisms, for example, and I can hear my inflections in her voice, and yet she is enough different that I do not always understand what makes her tick when I tock. So I like to get other people's perspective on her whenever I can. We have lots of people who report about Jake to us, since he can't tell us his stories himself. There is even a journal that travels back and forth to school each day for Jake, but my daughter with her 31 other classmates... it would be impossible for any teacher to write a note about each child, each day.

Sometimes I get anxious before I meet with teachers; education is different than the business world where I am generally confident. I have a reverence for teachers, and admiration for their service. And they do something I'm not sure I could do each day. Teachers, especially those that have been around for awhile,  really know kids, so any comment about my child from a teacher is founded on having known hundreds and hundreds of children, and those opinions carry more weight to me.

Of course the meeting went just fine. Lucy is on track and she is a good kid and she has friends, and she keeps writing the number 4 backwards. I saw a sampling of her work where I can see how much she has improved in just the last month with her letters and her coloring. Her pictures have great details and she seems to get the essence of the stories she hears. She's doing well. I was relieved, but I can't help but think there is more we should be doing.

Lucy's teacher and I chatted a bit more,  debating piano lessons versus violin, tennis instead of soccer. Then about how being tall generally gets you more responsibility at an earlier age, at least that's what I experienced. And when Ms. June mentioned that Lucy shows a nice maturity she quickly told me about something that happened just today.

There is a 'little person' at Lucy's school, and apparently some children had teased this boy at recess. When Ms. June took them back to the class (after having the story related to her by the yard duty aide) she sat the children down to have a discussion about differences. They talked about how it would feel to be made fun of for something that is just a part of you. They talked about all kinds of differences there can be, and Ms. June said that as soon as the conversation started Lucy raised her hand. I am paraphrasing but I have now heard the story from both Ms. June and Lucy, and they each related about the same thing.

With conviction, Lucy told her classmates:

My brother has autism, and he has a wheelchair. He's different. But he still likes to decide things and make choices. We offer him two choices because he doesn't communicate like we do, but he still wants to decide things. Every kid is a person, so you should just say, "Hello." and ask, "How are you today?" because even if they don't talk like you do, you should still say hello.

There I was, worried about how far along she is in reading, and stressed about the number four... and as it turns out, some of the hardest things to teach, respect, accepting differences, presuming competence..she's understands those things. She knows her non-verbal brother has opinions and that he deserves to be heard. She knows that "every kid is a person."

And perhaps I am most pleased that she has it written on her heart to stand and be heard. I'm grateful that she could face her peers and unabashedly advocate for that young man, and she did it on her own without prompting or practice. I am so proud of her.

Tragedy, Sympathy and Empathy

My heart is racing, and it makes me unable to breathe. Tears swell up when I try to talk about it. It is a tragic story that has our entire community reeling.

A student from my son's school was killed by his mother. Then she took her own life.

The articles keep indicating that she was overtired, had too much responsibility, and a lack of services keeps coming up. As one writer put it, she was "her child's nurse, his advocate, his playmate, his cook, his personal hygiene assistant, and his communicator. [She] was the mother of an autistic adult child. And she was her son's entire world, meeting his every need from the moment he was born. And she was desperately fearful for his future and exhausted beyond belief."

but she murdered her child, and that's the story. 

If we let this story focus on the hardships of this woman, we are lost. The young man was killed, and it undermines that significance when we read in another article that one could understand what "would drive a parent of an autistic child to commit such a senseless act." Anyone who says they "understand" is reinforcing the idea that my son, and other people like him, are less valuable. It may be unintentional, but that sympathy starts to sound a lot like taking his life is somehow "understandable," because things were hard and the young man required a lot of help. It reduces a person into a list of burdens.

Yes, we need better services, but we have always needed better services. Yes, we need support for parents who are life-long caretakers, and better adult programs for that magic age when children become adults overnight. We need infrastructure and life-skills support for adults with autism. There was a program available for this family, but there really are not a lot of options when kids "age-out" of the education system. But these are all separate issues. These are the things we are working for. That's what we advocate for. And as for worry, there is not a single parent I know in this community that is not concerned about their child's future. Exhaustion, frustration, fear...

It is not a list of reasons why taking your child's life is justified.

A pile of pity on this mother is not going to bring about more services. Are you outraged? Then vote people into office that believe the special needs community has a fundamental right to supports. That might get more services. Talk to your neighbors about shared responsibility and humanity and dispel the myth that we are leeches trying to live off the system. Those things might help get services for people like my son and the young man who was killed.

And I do not believe absolution will encourage people to support me, or my son, or adults with autism. In fact it further ostracizes us; it makes us "other." As a mother of a child with autism I walk under a cloud of suspicion now. Will I snap?  I'll have more people looking and feeling sorry for me as if I have an anchor around my neck--and how will that make my son feel? Most people would never stop to think that showing so much sympathy, not for the victim, but for the person who killed him, might make adults with autism, who may rely on a network of caregivers, feel threatened, and more vulnerable, like there is no one they can trust.

When it is even intimated that this killing was done out of mercy, it changes the value of my son's life. It says that his life is less worth living, but let me be clear there is no sliding scale on my son.

Maybe it's empathy that's needed. Empathy takes more time than sympathy, but if you are able to imagine life as my son then it would be impossible to disregard him. Looking at life through his eyes would give you a sense of what his needs are, and of course what services must be provided, but more importantly you would be able to see the relationships he has. You would see the snarky jokes he's in on and how much he loves his family. You would see that he has intent and tries constantly to communicate what he is thinking. You would see him as a person, instead of "person who needs to be taken care of." Maybe it would change things, but most of the time people just use the narrow scope of their own expectations and desires to determine the value of someone elses's life; most people are unable to separate their opinion from the other person's reality.

And yes, Jack's life is challenging a lot of the time. But no one gets to say that he is less valuable because his life is hard, or because his life is not what someone else expected. He needs help with almost every aspect of his life, and will continue to need a lot of help, but he doesn't need pity, or mercy and if you think he does, why don't you ask him? I'm sure he'd rather have you talk with him than about him.

There are no excuses.

and we have so much more work to do.

for more perspectives, please see these posts:

• Shannon Des Roches Rosa at Squidalicious: We MUST Do Better: Autism Tragedy and Transition to Adulthood
  squidalicious.com/2012/03/we-must-do-better-autism-tragedy-and.html
• Amanda Baggs on Tumblr: Another Murder, Please No
  http://youneedacat.tumblr.com/post/19105518455/another-murder-please-no
• Charlotte Moore at Thinking Person's Guide to Autism: Sam, at Nineteen: On Transitions and Autistic School-Leavers
  thinkingautismguide.blogspot.com/2012/03/sam-at-nineteen-on-transitions-and.html
• Laura Shumaker at SF Gate: Community Building 101 for Adults with Disabilities: FRED Conference provides actionable information
  blog.sfgate.com/lshumaker/2012/03/07/community-building-101-for-adults-with-disabilities-fred-conference-provides-actionable-information
• Kristina Chew at Care2.com: Why Autism Education Should Go Up to Age 25
  care2.com/causes/two-tragic-deaths-and-why-autism-education-should-go-up-to-age-25.html?
• Tiny Coconut at I Have Things: No Justifications
  ihavethings.blogspot.com/2012/03/no-justifications.html

a version of this post was the editor's pick today at OpenSalon.com

The opinions on this blog are my own, and in no way represent the many groups, foundations and communities with whom my name may be associated. 

This may be reposted with proper attribution and links back to this original post. I reserve the right to rescind the reposting of my material.