We’re aware, already!

Kathleen and I have been participating in April’s Autism Awareness Month online for four years now and arguing that acceptance is key. Awareness alone is meaningless. We’ve collected and edited this year’s writings below, our post for the Autism Blogs Directory, and our personal pieces for our own blogs.

— Kim

Kathleen at the Autism Blogs Directory:

As it is almost the month of April-and all things, “awareness,”  Kim and I thought that we would bring you all up to date on the goings on at the directory.

Firstly, we are looking for blog posts on Autism Awareness month. What do you think about it? Good, bad, indifferent? We’d love to know your thoughts. If you would like to write or share a guest post on the topic-email us.  We would enjoy sharing your thoughts. You could also just leave us a link to your post in the comments section in the comments section at the Autism Blogs Directory.

It has been a long winter.  Both Kim and I have dealt with a number of ups and downs that have taken up much of our time. This has kept us from doing as much as we have wanted to on the directory.

As you know, we have been trying to help promote “The Autism Channel”-an exciting new channel devoted entirely to the world of autism. (If you have a Roku box-the channel is free!) We have mentioned them a number of times on the directory, and have even co-written a blog post together for their web page. We really appreciate all of the work that they are doing! We’d love if you would go on over and give them a look-maybe even a” like” on their Facebook page.

Spring is almost here and Kim and I are feeling a bit more rejuvenated. The demands on our time have considerably lessened. Isn’t it funny how things work that way?  One minute, everyone wants your attention-and the next, it’s almost as if you aren’t necessary anymore!

As it stands now, we are getting between ten and fifteen thousand hits at the directory a week! We have come a long way since we first started this over three years ago. We want a place where everyone is accepted and included-a place where we can share our ideas-where we can find commonality…community over cacophony.

All of you are helping to make this happen-and we thank you. As always, we are on the look out for new blogs and guest posts. Please email us if you want to be included-or know of a blog that should be. It is our goal to make the autism blogs directory one of the friendliest resources for autism and disability blogs on the internet and to assist The Autism Channel in becoming one of the most inclusive places, as well.

Kathleen at Herd:

Need and want in the land of awareness..

~”You can’t teach an old dogma new tricks”~ Dorothy Parker

We are a regular family…Like any family, we have good times and not so good…times when we are all together and times when the ups and downs of living our lives scatter us in a million different directions.  But, even when separated, we are always connected.  I adore this family of mine.

As a mother, I see and raise ALL of my children equally. They ALL have the same rules-the same expectations set upon them. “Do your best-and most importantly-be who you are.” I have four kids.  Each with their own very different and unique personalities-four wonderful kids…not three kids on the spectrum and one neuro-typical child..nor three “auties” and one “normie”…or any other “ie” ending cutesy kind of word (what is it with that anyway?). Four kids-four human beings that we are doing our best to grow into adults. Labels aren’t really necessary to us-unless of course we need services. Then they are of the utmost importance. Autism, other than as an explanation (to my kids) as to why things are sometimes more difficult or different doesn’t really mean anything to my children. They are kids, they are part of a family and they are loved beyond words. This is what they know. Sometimes I wonder (when I look at the world) if I have made a mistake in guiding them to think this way.

Kathleen's Herd looking through a window
Kathleen’s Herd

A few weeks ago, I had a person tell me that I was the best advocate that they had ever met in all their years of working in special ed. I tried to dismiss this…in fact it made me really uncomfortable. Believe me, I am not “the best”…not even close. There are too many days when I know I could be doing more…could be doing better. Those days when I just want to hang out drinking coffee…(and I do). Or, when I just don’t feel like making a call..or showing up at school (so I don’t). Days where I would rather read a book than discuss anything to do with autism (so I go to the library).  No, I see myself as a regular parent. Doing the things (mostly) that a parent is SUPPOSED to do. I don’t need a title-and I don’t need (or want) praise.  What I would like is for my kids to get all that they need without having to intervene. I do not think that this is too much to ask.

No, if anyone deserves accolades it is my kids. They are caught in a system-both in the real world and on line that is constantly trying to box them in. My children are more than their diagnosis. Some of them struggle more than the others. Not all of my kids may be able to live fully independent lives (as adults.) That does not make them less valuable (as people) then the kids who will be able to. Nor does it make me a failure as a parent-someone from whom they need to be “liberated” from. That is just the way it is.

One of my kids wants to be a teacher.  Unfortunately, his lack of pragmatic language, and really, just the way he learns has caused him to be dismissed by many educators (there have been some wonderful ones-but not enough), administrators-and whole bunch of other professions ending in “ors.”  He simply doesn’t fit into the system. So it is easier to just ignore him. To pass him on to yet another system-only to be ignored there as well. *sigh* And another one bites the dust…

Autism awareness month is almost upon us-and I sit here thinking about how unaware people really are. Soon my Facebook wall will be flooded with all sorts of “My autistic kids are great!” All my kids are great-so you’re preaching to the choir. .. Or the activist type of “I don’t stim-but when I go out with my friends, we flap in public to bring attention to stimming!” Are you kidding me?  That isn’t activism-it’s theater. My son owns his flappiness-thank you very much. It is his and it is real. I wish that people would stop co-opting his behaviors to try and make a point. How can I teach him that it is important that he “be who he is”-when there are people are pretending to be who they are not?   I wish we would instead concentrate on what is really needed. Services, supports, education and inclusion for EVERYONE on the spectrum-regardless of where they are on that spectrum.

Autism isn’t a month: it is lifetime. It isn’t one set way-it is many ways. It isn’t a light bulb or a tee shirt. Autism is all different shapes and sizes and colors and religions. It is different abilities and disabilities. But the most important thing autism is…is people. All different kinds of people. We need to respect that-to acknowledge it-to accept it. I fear that nothing is going to change until we do.

So, now that April is almost upon us and we are inundated with all things “awareness”… I think that I will just continue doing what I have always done. That is, to raise my children to do their best-and more importantly-to be who they are. That is more than enough awareness for all of us…

Kim at Countering:

As everyone in the online autism community is all too painfully aware, April is Autism Awareness Month. What that means to the vastly different people in autismland is, of course, vastly different.

For some parents, it means going blue in a variety of ways, posting information about autism, raising money for autism organizations, attending autism-related events. For other parents, it means boycotting various organizations. For some it means attending events but offering a message of hope and acceptance in the midst of the message of tragedy that brings in donations.

For some autistics, it means standing loudly and arguing against the awareness campaign, arguing that it as it is done by NTs trying to raise money for research for a cure, for treatments is HARMFUL to autistics. Awareness—there’s plenty of awareness that autistics are different and the rhetoric of pro-cure organizations who engage in hyperbolic speech about the tragedy that autism is for families is DAMAGING.

Kim's Herd
Kim’s Herd

But, but…we’re just trying to help, the Autism organizations offer as a rejoinder, well-meaning parents insist. It’s the only thing we’ve got, they say (I’ve said)–it’s the ONLY THING here.
And they’re both right. So what do we do?

Non-profits run on donations, so raising money is what they do. And in order to maximize donations, selling autism as an innate neurological difference that needs different ways of educating doesn’t do the trick of maximizing the money coming into the coffers.

No, instead, we see the continually offered, but now slightly less dramatic:

“By way of comparison, more children are diagnosed with autism each year than with juvenile diabetes, AIDS or cancer, combined.* ASD affects over 2 million individuals in the U.S. and tens of millions worldwide. Moreover, government autism statistics suggest that prevalence rates have increased 10 to 17 percent annually in recent years. There is no established explanation for this continuing increase, although improved diagnosis and environmental influences are two reasons often considered…*Comparison based on the prevalence statistics of the Child & Adolescent Health Measurement Initiative”

I can guarantee the sign, though, will still simply say “More children are diagnosed with autism each year than with juvenile diabetes, AIDS or cancer, combined.” The extended paragraph available on Autism Speaks’ website isn’t pithy, catchy, or terrifying enough to bring those dollars in, and the reality is that most of the people at the walks across the country don’t read the website.

So what does acceptance look like in the midst of the Awareness campaign? It looks like a lot of things.

  • It’s Paula Durbin-Westby’s Autism Acceptance Day and Month 2013 campaign, where she writes that, “Autism Acceptance Day is about embracing and cherishing autism and Autistic people. It is not about ‘just tolerating’ or putting up with us. It is also not about dismissing the very real difficulties that Autistic people face. Autism is clearly a disability as well as a difference.”
  • It’s ASAN’s Autism Acceptance Month, “a celebration of Autistic culture and community.”
  • It’s different autistic bloggers with their take on what it means to be autistic and what April is like to them (see The Caffeinated Aspie and Drive Mom Crazy). It’s parents and allies offering positive stories to counter the tragic stories.
  • It is a diversity of opinions and beliefs, a chorus of voices offering their stories.

Acceptance means different things to different people, just as awareness does. Acceptance, to me, means letting that diversity of thoughts wash over me, taking into account other people’s perspectives and acknowledging that each of us sees the world through our own eyes, that the diversity of voices found on the autism blogs directory is good, desirable, necessary.

Acceptance…I don’t want my community to just be aware of autism. Autism Awareness? What about Autistic Awareness? When the month is run as a way to offer scary numbers and stereotypes, what have we really done? Why isn’t this a month about celebrating autistic individuals in their diversity and their inherent value?

Why isn’t this month about accepting that we are all different, we are all unique, and that we all have value? We all belong here, in our communities, in this world, and should have the support we need to achieve our potential?

It shouldn’t just be about Autism, either, but about all our beautiful minds. But that should be every day of every month, shouldn’t it? Acceptance isn’t one day, one month. It’s every day, every month, every year.

Acceptance should be of the totality of our experiences, the reality that some individuals have greater issues, greater challenges and face greater adversity. Acceptance of those individuals means not standing by and doing nothing, but working to create a society that embraces diversity and supports it by putting into place real safety nets, resources that help all individuals find meaningful work, whatever that looks like for them, creates the most autonomy possible and safeguards against abuses for those who need assistance

Acceptance is messy. It is noisy. It is different. It doesn’t mean doing nothing. It doesn’t mean merely tolerating others. Acceptance is listening, empathizing, embracing, forgiving and flexible.

The Hidden Side: Aggressive Behavior and Families in Need

Kathleen and I have seen and read a lot in our years navigating autism-land, and one of the things that gets hidden away is the issue of aggression. We feel strongly that individuals struggling to communicate and lashing out with aggression and their families need support, need tools to help them resolve aggression issues in a healthy, productive way. Our community needs to build bridges to help these families, to help all of us find meaningful community. Together, Kathleen and I explore this hidden side and the need to suspend judgment while offering support  — Kim

 

Photo Credit @RCGates

From Kathleen

Physical aggression and violence.  We rarely see it discussed by parents in the online autism community.  Perhaps it is because this is a subject that isn’t easily spoken about-maybe because it is uncomfortable, or there is a stigma attached to it.  Either way, it is a topic that appears to be taboo.

 

Far too often, we have seen someone try and talk about the difficulties involved in raising a child who is aggressive or self injurious, only to watch them be shot down by the people that they call community.  “How can you talk about your child this way?” “One day they might read this-how do you think they will feel?!”…”It is obvious that you are a bad parent…or abusive..or don’t deserve children!” They are the kind of statements guaranteed to shut a discussion down.  They serve no purpose other than to pass judgment-thus ending a conversation that needs to be had.

 

There is nothing that any one of us would not do to help our children. Nothing. Our love for them is unconditional. But what does someone do when that love is simply not enough? When that child, that person, that human being behaves in such a way that they are a danger to both themselves and those around them?  Who do you reach out to?  Where do you go for help?

 

Living with a child who is aggressive or violent is like walking on a tight rope. A constant balancing act of fear for and fear of your child-of desperation and of hope. Tipping heavily one way or another depending on the day. This week, we read two different posts by parents going through this right now. They love their children. They value them. They are being honest and open in their writing.  We ask that you read them with this in mind. To respect their experience and to put aside your judgment or criticism and maybe try to walk in their shoes. If you can-offer some support, or helpful advice. This is something that very much needs to be spoken about-openly and honestly.


From Kim

We ran across the first blog by accident, seeing a comment from an individual to a friend on Facebook about this very problem of putting out their reality, their fear, their desperate need for help and how that had been attacked by some. Fortunately, the outpouring of support, both emotional and financial, far outweighs the attacks. Kelli Stapleton is by all appearances and accounts a loving mother who desperately wants to help her beautiful daughter Issy gain control over her aggression, aggression that often manifests as physical assaults on her mother. Finally, after several years of looking for help, enduring attacks that resulted in a hospital stay recently for a closed head brain trauma, the family found a treatment center and their insurance paid for one month of care. One month isn’t enough to provide this family and Issy with the tools they need, and fighting the insurance company wasn’t doing any good, so Kelli took her plea to the online community.

 

As many of the comments attest, it is all too easy to lay blame and offer suggestions with a certainty bordering on arrogance. Kelli admits she needs help, that she needs training, that she’s traumatized by the abuse, and it is abuse, even if Issy would never intentionally hurt another.

 

It’s too easy to believe we would never be in the same situation and that if we were we could fix it easily. Sometimes, though, there’s no easy fix, no easy answers. We have to be honest enough to admit that, to suspend judgment and offer support.

We don’t like to do that, period: suspend judgment. It’s hard to do, maybe even impossible in some situations. I’m not sure, honestly, how you get past that, quiet that very loud part of your mind that can’t help but shout out, “yeah, but what about…”

 

Families like Issy’s shouldn’t go through this alone. They shouldn’t struggle for answers. They shouldn’t be denied help. Beautiful girls like Issy (and all of our children are beautiful) shouldn’t be locked into a cycle of lashing out because sensory issues and demands have overwhelmed her ability to respond without violence. She needs tools to help her communicate, to help her self-sooth, to help her grow into the young woman she’s meant to be, whoever that is.

 

This isn’t about seeking out a way to make our children neurotypical. It’s about seeking out ways to help them reach their potential and live happy lives of their own choosing.

 

It isn’t just mothers who are on the receiving end, though. Even veteran police officers can face violent meltdowns: Greg Lucas writes candidly about his family and their disabled son, who can be aggressive.

 

These are just two families, reaching out and sharing their stories. These are stories we often don’t want to hear, don’t want to believe could be true. We don’t want to believe it could happen to us, or in some cases, admit that it does.

 

Kathleen and I have both experienced aggressive behavior when our children were younger, and we acknowledge how lucky we are and our children are that this aggression stopped. We’re not vain or foolish enough to think we’ve got the answers to this problem, that it was our remarkable parenting skills that allowed that aggression to resolve. We did the best we could. We muddled through. We, I dare say, despaired at times. We ached for our children and we didn’t take the aggression personally. But the questioning, the soul searching, that doesn’t go away, nor does the second-guessing.

 

Sure, that’s a normal part of  being a parent, but it’s a painful part. As you, in your adventures in the real world and online, run across families struggling, rather than leaving a judgmental, disparaging comment, why not simply let them know you care, that they are not alone, and that there are people who want to offer their support?


Introduction to The Blog Ladies

BL_1_Kim Wombles – The Blog Ladies

Kathleen Leopold and I met online nearly four years ago. In that time, we’ve written lots of posts together, including fictional best friends Thelma and Louise, and started online communities, trying to bring parents and autistic individuals together in an open, supportive dialogue. We’re most proud, I think, of the Autism Blogs Directory, which is going on three years old. It is a collection of over 1,000 bloggers, websites, and forums that spans not only the autism spectrum but other disabilities, as well.

We think that the best way to make our way through life is by having a large support group, the bigger the better, so we try to make the Autism Blogs Directory a place that anyone can find others like them.

With seven children between us, and six of them on the spectrum, Kathleen and I are involved in autism in a very real sense, but autism is not our lives. Our kids are kids, and we do our best to make sure that this is how they see themselves: as kids first. We’re thrilled to have a community around us that understands our kids and their strengths and weaknesses, and on very good days, to look around the online autism community and realize that we are not alone.

While the directory is our joint endeavor, we both blog individually. Kathleen can be found at Herd, and I can be found at Countering and Science 2.0.