Desperation

A friend sent me a tragic news story about a father of a young man with autism, who had been caring for him alone, and had health problems of his own who had ended up taking the young man’s life before taking his own.

Sadly, this is not uncommon.

Murder and suicide are never the right path, but in order to prevent this type of thing from happening, and in order to make it extremely uncommon, you have to look at why it happened. And you have to look at it compassionately.  To condemn someone who is so desperate that they will end the life of someone they love dearly, as well as their own is too easy.  “There but for the grace of God, go I.”  The human mind is a mystery, and the only part of the human body that still has a stigma attached to its treatment.

This is not new.  Anyone who has read Thomas Hardy’s book Jude the Obscure, for example (or really any of Hardy’s books), knows that people have been making desperate choices when no other options are afforded for centuries. The problem we have to address is the lack of support and resources.

The 1 in 68 are rapidly becoming young adults aging out of a public school system that exits them with virtually nowhere to go.  Any programs or services available are largely hit or miss, or are so abominable, no one would place their child there for a minute.  If you’ve ever scanned the want-ads, you will often find job listings for personal care providers paying minimum wage.  What type of people do you think are attracted to a part-time minimum wage job?  Desperate people. And then we’re back to where we started.

We need a robust plan for our autism community that includes meaningful employment for all on the spectrum, adequate housing opportunities, and comprehensive assistance for families and caregivers who often suffer right along with their children due to lack of sleep, anxiety, and post-traumatic type symptoms. What we have now is not enough, and we cannot expect families and caregivers to endure without tragedies continuing to occur.

How many times will we read the same headlines before we do something?

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EC Planner: editorial calendar

Recently I sat down to figure out how I could back in the swing of things here at Simple. I Just Do.  I re-read some resources I had, and began planning (my favorite thing!), and realized I needed a space for an editorial calendar.  Then I realized I already had the perfect space, and it was under-utilized – the month-at-a-glance portion of my EC planner!

I had seen posts of others using the daily portion, but it didn’t really work for me.  So I sat down, did some brainstorming, analyzed some analytics, and came up with a whole slew of post topics, and even made up a little code for types of post.  I broke out the post-it notes (my second favorite thing!) and began “scheduling” these posts, making sure to plan a variety of types of posts, as well as topics.  Whatever posts that were not scheduled were put off to the side for revision and use in the future.  And if I get an idea for a post, now I just jot it on one of these small post-its, stick it in there, and it’ll be ready for next month’s planning session.  They are also really easy to move around – I had a different post planned for today, but it wasn’t ready, so I moved this one up a few weeks.  Easy peasy.

I’m also able to schedule my social media posts and interaction, linky parties, etc.

It may not be the most beautiful or elegant thing ever, but for me, the most important thing is it WORKS!  And I can make it beautiful later, when I get some time (yeah, right).  This is not an earth-shattering idea, but it’s always good to take a moment to reflect on what has worked in the past, think about what resources you have, and try to marry the two.  No sense in re-creating the wheel when you don’t have to. In fact that’s something good to do in just about every area of your life.  Sounds like a topic for another blog post… now where are my post-its?

Making Money on Autism

There are lots of autism bloggers, and lots of single moms with kiddos on the spectrum. Lots of us have learned so much from experience, and lots of us want to share that because we know how hard it can be.  And there a few of us who have the ability to make a few bucks doing this.

Way back when I started this blog, one of the things that inspired me was the inability to find existing social stories online that weren’t for sale.  I was tired of being nickel-and-dimed for every little resource I needed for The Boy.  Others had experienced just what we were going through, and someone had to have a social story already written, so that I wouldn’t have to re-create the wheel every time, but they were all for sale. And money is hard to come by when your paying for uninsured therapies, prescriptions, diapers or your 5 year old… It’s tough.

I have long considered trying to take this blog to the next level, and maybe “go pro” which means trying to attract companies to advertise here. Most bloggers do this, and I don’t see it as trying to make money off of other autism or special needs parents.  Advertising is everywhere, and I don’t think anyone would see this as a blogger trying to take advantage of her audience.

There are other bloggers that sell stuff on their sites, as well.  And I think we have to be very careful when we head in that direction.  T-shirts are one thing.  Resources are another.  Trust me – I understand the sentiment behind it – when you work hard to create something, you have a tendency to want to protect it, and while you want to share it with the world, you feel you deserve something in return.  I get it.  But we cannot forget that person on the other end, spending money on therapy, weighted blankets, chewies, and special gluten-free ingredients.  Our community needs to remain one in which we share resources at little cost, and respect each other’s struggles. If we forget that, we’ve lost our way.

The autism community needs to stick together

This One or This One?

As part of the “Wishing Away the Autism” debate, one of the posts I read argued that we show too much of a positive side of autism to the rest of the world, and that we need to share more of the horror stories, that we, the autism community do ourselves a disservice by showing the nicey-nice stuff because people are less likely to support funding for research and resources if autism “doesn’t look all that bad”…

Well.

Which is clearer?

Sounds like a sales pitch to me.  I guess I just don’t have patience for anything less than the truth, which is why I share the good, the bad, and the ugly on this blog.  So that others on a similar journey, or even one that is not similar in the least can share in my hope, commiserate with my frustration, and celebrate our milestones right along with us.

We are all people.  When you focus on showing society that autistic children and adults are real people, you will have accomplished something.  No one wants to be sold a bill of goods.  No one wants to see  one side of the story.  So why would we, the autism community, even try to do that?

Write and share your experiences, take those photos and plaster them all over your facebook wall, and bring those kiddos with you everywhere you go.  By doing so, you are showing that our little ones (and not-so-little ones) are a part of society, that they are human, that sometimes they need help, and that in many ways they are just like everyone else.  THAT is advocacy.  Participating in society, carving out a place for them, even where they don’t quite fit.  THAT models for the rest of society how our kids should be treated, THAT will show them why we need funding for research and resources.  THAT tells our own kiddos that they have a PLACE in our society, and THAT creates self-advocates, which is the name of the game.