In the News...

As a student of human behavior, I find myself curious about the top news story today, the dentist in Bloomington who hunted and killed a lion in Zimbabwe for sport. So many people are outraged at his cold, inhumane behavior and it's one of the top news stories today. His business is ruined and his and his family's lives are in peril, society is so up in arms about his deplorable behavior. (Relax, I'm not defending him in the least. Please don't freak out and think I'm on his side. Read on.)

This very similar story, about an eight year old girl lured up to an apartment by a young boy she knew, killed, and thrown into a dumpster, is a harder story to find. It's the same theme, though - humans luring trusting innocents away from safety so they can torture and murder. Wouldn't one think that the story about the human child should be the one that outrages and inflames the public? Why aren't we knocking down barriers and demanding to know who that killer kid is?

Is it because we are used to seeing news stories about dead children, but we are used to seeing lions safe, secure, and idolized in zoos? (Don't even suggest I am unfeeling toward animals. I think it's horrible that anyone would hunt wild, beautiful animals for sport, I don't understand it at all, but there's a lot of things about people I don't understand. This is why I'm studying them.)

The dentist who killed this lion is, for sure, lacking some sort of empathy gene. But so is this teenager who lured away the little girl.. If I were that girl's mother I'd be beside myself with fury at the whole world right now, being so angry about the death of a beloved lion and totally ignoring the fact that people get hunted and brutally murdered like that right here in our own towns, and no one seems to be outraged about that.

I think we are desensitized by the media. We are so used to shootings, kidnappings, abuse, and killing of each other that we don't get upset anymore. It's the overspread of news that is doing it - we can only take so much awfulness. We just can't handle being horrified at human abuse anymore, our psyches can't take it. For our own emotional protection, we have had to put up a wall to avoid being shocked and aghast at what the news reporters tell us happens every day in our cities and neighborhoods. We've reached our shock limit.

Okay that's all I have to say about that, have to go - homework to do.

The Last Resort

Not long ago, while working on my memoir, I was thinking about a story that appeared in the news back in 2006, shortly after the boys were diagnosed with Fragile X Syndrome.  It was about a woman in the United Kingdom who forced her 12-year-old son with Fragile X off a bridge, and she followed him, both falling to their deaths.

I had only known about Fragile X for a couple of weeks.  I didn't know yet how it would envelope our lives.  But here was a woman who had felt things were so hopeless for her son's future that she took him away from the world with her.  She despaired when she saw a world that, if he were left without her protection, would abuse and torture her vulnerable son.

I have to say, that didn't fill me with confidence in our future.

Now - seven years later - I see a story in the news like this one - about Kelli and Issy Stapleton - the mother who attempted to kill herself and her autistic daughter - and I can easily understand what Kelli's mindset might have been.  Her daughter was aggressive.  Mostly Kelli took the brunt of the physical toll, because she placed herself there - between her daughter and the world.  She did that because she knew that most people, and I mean, 99 out of 100 people she came in contact with, didn't understand Issy's aggression.  99 out of 100 people see aggression and think, violence.  Intent to harm.  Being a bully.

Issy' aggression (I am guessing - knowing she has autism, I'm making an educated guess), like my son Zack's, is more about self-defense.  Self-defense against forces that those of us who don't live inside her or Zack's head don't see.  Defense for themselves against themselves, a lot of the time.

If you see someone with autism hitting himself in the head, you might think "oh that poor person, so tortured by something inside him or herself that I can't see."  If that same person hits another person in the head, you are more likely to think "What the crap?  He didn't do anything to you."

An incredibly difficult concept, I know.

Another great example that helps identify the emotions that might be swirling through a special needs mother's mind is the book My Sister Dilly by Maureen Lang, an author who greatly inspires me.  It's about a woman who tries to kill her severely disabled daughter after resources run dry and she loses hope.  It doesn't give excuses.  It simply tells the story of that mom's fall into the pit of despair, and how both she and her daughter survive it.

Kelli has spent Issy's life protecting her from a world that does not understand her and probably wouldn't try to, before condemning her for her aggression.  And when she couldn't do that anymore, she did the only thing left she could think of to protect Issy - she tried to take her away from this world.

I don't think she thought she was hurting her daughter.  I don't think she saw it that way at all.  I think she thought she was saving her.

I get how insane that is.  I get how wrong it is to kill.  I just understand, I think, maybe better than some, where Kelli's mindset might have been and what her reasonings were.  I can easily imagine what her life with Issy was like.  There have been times when, to keep Zack from lashing out at others when he was overwhelmed and/or overstimulated, I permitted him to chomp down on my arm.  I've put myself between him and the clueless world.  I want to protect him.

I am deeply thankful for the help I've received along the way, because I know that is what separates me from Kelli.  I haven't reached the end of any ropes.  I'm supported and loved and so are my kids.  I hope a tragedy like this results in better understanding and compassion of people with autism and how much we don't know about what goes on in other families.

Gabby Knows

Gabrielle Giffords knows what it's like to be nonverbal.

She has firsthand knowledge of how frustrating life is when you can't communicate.

I haven't read the book her husband wrote, that just came out last week.  I just read the excerpts in People magazine.  But a few words and phrases just jumped off the pages at me.

"...until Gabby was injured, I'd never once considered how disabling it is to not be able to speak."

This is the case for most of us.  I don't think any of us who haven't experienced it can consider fully what it would be like not to be able to speak the words that are in your head.  Gabby knows.  And Mark has had reason to consider it.

"If people can't ask questions, it's not always easy to have a conversation with them.  You don't realize that until you spend your life with someone unable to ask a question."

Think about how much mental effort goes into asking a question.  The process.  You have to wonder something.  You have to have the forethought to realize there is something you don't know.  Then you have to be able to formulate that thought into a phrase made up of words that will induce the other person to tell you what you are wondering.  It's complicated brain activity.

"She had tried to speak and couldn't.  She had just figured out that she was trapped.  Trapped inside herself.  Her eyes were as wide open as I'd ever seen them and the look on her face was one of absolute fear.  I could tell what she was thinking: that this was what her life would be like from now on, that she'd never be able to communicate even the simplest word."

These guys know.  Actually, they don't really comprehend it the way Gabby does, because it's all they've ever known.  Every day they get better at communicating, though.  They make requests, but I'm not sure that's the same as asking questions.  It's not the same as wondering.  Maybe it's a baby step toward wondering.

I guess I just have a newfound respect for my ability to communicate.  Everything -- all the workings of our bodies and minds that are normal, typical -- we take it all for granted.  The fact that most of us are able to communicate -- to think of questions, pose them and answer them, is such a miracle of the human brain.

Not Loving Chicago

I love how everyone says "oh, I just LOVE Chicago" when I tell them we've been spending a lot of time there.

I guess to LOVE it, you have to see more than the traffic on the expressway, parking lots, hotel rooms, and the medical center.

You also probably have to not travel with two small children with autism.  It's hard to enjoy your trip when you are constantly hyper-aware of your two little ones and the dangers all around, that they are completely oblivious to.

The level of hyper-vigilance we have to have with the boys is stressful and exhausting in a way I don't think many people get.  I keep thinking about that family in California that was in the news a few weeks ago, whose 8-year-old autistic son was lost in the woods.  (I wrote about it here.)  He'd been in the care of a foster parent or something (who obviously didn't watch him closely enough and lost him), having been taken away from his parents because they'd tied him to a post in their front yard.  They did that because they found themselves facing foreclosure and having to move out of their house quickly, and they had no one to watch their son.

I think I know exactly what they were thinking.  That child required the contant, focused attention of one person, 24/7.  The person watching him could not also pack and move things out of the house.  One entire person had to be 100% watching him and doing nothing else.

They wanted to keep him in the yard, where he could watch them coming and going from the car, and where they could see him.  Where he wasn't secluded or isolated, but was safe. 

Would it have been okay with Child Protective Services if they'd barricaded him in his bedroom, instead?

My boys require that same level of supervision.  I completely understand what would drive you to tie the child to something, just so you could have both hands free to do something else.  Let me tell you about the last time I thought about tying up one of the boys.

At the hotel we took the boys down to the lobby for the continental breakfast.  It wasn't that busy, but neither of them would sit.  My dad held onto AJ while I struggled to get Zack to stay at least next to our table.  He laid on the floor.  The breakfast was great - bagels, muffins, donuts, scrambled eggs, sausage, coffee, juice, and milk.  Some cereal.  The only thing there either boy might have eaten is the Fruit Loops, but under these stressful circumstances, in a strange place full of strangers, there was little hope of either of them eating anything.

Incidentally, we don't bring them there to eat.  We bring them there to try to get them used to being in a situation of eating in public.  We bring them, because they won't learn how to sit down in a restaurant and behave properly, if we keep isolating them.

But it's hard to eat when you never have more than one hand free.  AJ's decided he can sit, sort of, if he sits on my lap and I hold him there.  I can't butter my bagel.  Eggs keep falling off my fork because of AJ's struggling to get loose.  I have to time sips of coffee carefully to avoid sloshing it all over myself.

So maybe you can see why, in that hotel lobby, I briefly thought about how nice it would be if I could tie AJ to the chair next to me just for a few seconds, so I could let go of him and butter my bagel.

When we walk out to the car, I have to step up the supervision level because if I'm carrying things and maybe not holding both boys hands, they are just as likely to skip off in a different direction as they are to run toward the car.  Imagine walking out to your car in a crowded, busy parking lot with two 2-year-olds.  It would be nerve wracking, trying to keep them safe.  My two still have the unpredictability and impulsivity of 2-year-olds, only they are faster.

So maybe you can see why I breathe a little sigh of relief, when I can strap them both down in the carseats.  They can't get up and run off and I can look the other way without worrying about what they are doing.

During the course of this last trip, AJ mouthed and chewed on things (his shirt, his blanket, a pillow) so much he'd developed sores on both sides of his mouth.  One side looks infected.  I put Carmex on his lips all weekend, but he's kind of a mess.  Zack has been rubbing the collar of his shirt across his bottom lip so much that it bled.

At a rest area/oasis along the highway.  Chewing, chewing, always chewing....

Fighting over the computer in the hotel room.

No, we are not seeing a reduction of the anxiety behaviors yet.

Driving is nice because I know the boys are safely belted in and can't get into too much trouble, but driving 8 hours is also quite a drain, so by the time we get back home, it takes a couple of days before I can even begin to think about planning the next trip to Chicago.  Maybe after this weekend, I can begin to think about it.

And maybe on the next trip. we'll try to see something besides the hotel and the medical center, and we might develop an appreciation of the sites in Chicago.  As of right now, though, I don't LOVE Chicago.  I don't even really like it.

In the News - Autistic Boy Lost in the Woods

Did you see this news story out of California, about the 8 year old boy with autism who was found after being lost in the forest overnight, during a thunderstorm?  He had been removed from his parents' custody after he was found tied to a post with a nylon rope.  Sounds horrifying, if you don't have children with autism. 

Sounds like too much of a real possibility, if you do.

This story breaks my heart.  I want to say I'd never tie my kid up to something, but who knows.... I've done a lot of things I said I'd never do, and it doesn't sound like his parents put him in danger -- on the contrary, they were protecting him.  But that is something that a parent of a neurotypical child might not understand.

The Department of Children and Family Services should have understood that, though.

To think that the Dept. of Children and Family Services, local law enforcement, and the Superior Court all saw what this famiily was doing as a danger to the child.... now of course I don't know the details of this case.  For all I know, the media totally misconstrued this story.

All I know for sure is, I can see the possibility of us being in this situation, and it scares the bejesus out of me.  Because my boys are runners.

Often people don't understand what we, parents of autistic children, have to do to protect our children from the world and from themselves.  If I didn't have a fenced in backyard, I could never, ever open the door and just let my sons run outside.  Not unless I was no more than an arm's length away from them.  Because they will run into the street and keep on going.

Did no one understand that they were just trying to keep him safe?  Was he tied up too tight?  Was he crying?  Was there another reason for them to take him from the home?  I hope it was fully investigated.  As much as I don't like to think the parents WERE doing something they shouldn't have.... I hope the three entities responsible for making the decision to remove this boy from his parents had darn good reasons.

Because I bet being removed from his home and his parents caused him unbelieveable anxiety and fear.  I bet it made his behaviors worse.  Which in turn they'll probably blame on the parents, somehow.

It just scares me.  The lack of comprehension on the part of the authorities.

"He was looking for us," his dad said, of why he ran away.

He probably was.  Nobody would know better what his reasonings were better than his parents.  And the thought of one or both of my sons being taken from me because of someone not understanding the things we sometimes find ourselves doing, to protect them from the very kind of misunderstanding that probably occurred here.... and then running away to find me.....

I know my boys are "momma's boys."  They are attached to me.  They are happier and more relaxed when they are with me.

I can imagine the terror these parents felt, knowing their boy was out there somewhere, lost and afraid and looking for them.

And I think if this were me, at this point, I'd have an unbearable amount of rage inside me at Child protective services.  I don't know how they do it.  I don't know how they don't explode with anger at the system that was supposed to protect this kid, and in fact just ended up putting him in even more danger.