Jul 19, 2012

Accountability, Autism, and an Apology

When I decided to blog, instead of write the book straight out, I thought about the difference in making it public as opposed to the book form.  The book form would have hit people all at once, and if I stepped on feelings, intentionally or not, it would be too much, too soon.  So, the decision to give little snippits and see how that was received, is where this blog was born.  It has also allowed me to get my feet wet in terms of writing styles, and where I am learning a ton about what is most appreciated by those reading this.  The readers here are a small, yet eclectic group, that gives me a very broad sense of where I should tweak the writing.  However, I set up very very few rules for myself as far as writing.  I think there were two rules.  First, I would be totally honest, and open, about everything in my life.  Second, I was going to make sure that my writing never hurt or offended anyone.  Well, sadly, rule one and rule two are not very compatible, and for me to be an open book, I have to close parts of my story to protect those involved in the story.

While my outspoken nature is not squelched by my opinions, which are strong, at best, on more topics than I can count, my most sincere hope is to open minds, possibilities, and maybe, if not change the world, change one person for the better.  (That one person, sometimes, is me.  While I explore through writing on a topic, I sometimes find I feel stronger about something, or even open up my mind to other sides of the issue.)

Autism is a part of my life, as much as it a part of yours.  Autism is different things, for different families.  For us, autism is half our family, and the other half learns how to accept or change the differences.  I often will tell complete strangers that Charlie has autism.   Inevitably, the next word out of the stranger's mouths are, "I never would have known!"  Of course, because the autism spectrum is as diverse as we are, and the spectrum's diagnosis can accommodate just about any difference to date.  (i.e. ADHD, sensory integration dysfunction, delayed speech, etc.)  This is also the reason I offer this unsolicited information, just so that I might educate those around me.

Chaz is incredibly affectionate, makes good eye contact (most of the time),  plays fairly well with other children (most of the time), and seems pretty darn typical (most of the time.)  And MOST of the time, he IS typical, typical for his own quirks.  Some days are worse than others, as are some situations.   That can be said of any six year old though.  This week was a week of dealing with one aspect of Charlie's own unique autistic traits, day after day, experience after experience.   The most severe of struggles are his inability to interact with people in a graceful way that allows the other person/people to not feel overwhelmed by his presence.  And that was no more evident than while in multiple waiting rooms this week while I had my leg issue evaluated by multiple specialties.  While in the pharmacy, or in the store, or at the pool, Charlie has no verbal filter, nor can he not stare at something different, or not touch a person, as he is a tactile child that enjoys touch and assumes that EVERYONE loves it as well. These are the sorts of things I had to say to Charlie this week. "It is not nice to stare at that old man's recent leg/foot amputation," or "That huge bandage on this man's neck is the reason he is here at the pharmacy after his surgery, and it hurts him to have you try to climb into his lap," or "That's is a lady, even if she looks like a man."  The weight issue is interesting, as I don't think he knows that I am obese, since he might see an obese person, and question it, but never me.  For that, I am grateful.  He does notice that I have larger breasts than Geoff, and that is the only thing he has ever really commented on, thus far.  Wait around, I'm sure it's coming.  (And to be fair, Geoff does not have "man-boobs," nor is he particularly what most would call, "thin," he is not obese as I technically am.  (Working on that, but if only I could get back to working out.)

So, while he has his typical behaviors at times, he is truly unable to recognize when he is overstepping his personal space boundaries.  I have been working on that issue with Geoff for years, and honestly, he has come a long way from where we began.  While he still does not pick up body language specifically, he had been told enough, by me, that "so and so does not care for you to kiss or hug her," or "so and so feels uncomfortable when you look at her body."  One very close friend has told me, on numerous occasions, that she does not like when Geoff looks at her since she has a history of men seeing and using her body and not her since she has a beautiful figure and it makes her uncomfortable when any man, not just Geoff, interacts with her by looking at her body, and not her face.  Interesting, as she has a child on the spectrum, and gets it.  It doesn't mean that it is any more acceptable for her to have to tolerate it, and while she is aware of Geoff's harmless ways, it is still a great social learning experience.  But, in her own way, she has her own quirk- as did our dinner guests last night.

Our dinner guests are in from out of town, and we only had a small window of time to visit with them before they were leaving.  So, dinner was our opportunity, and they were here a mere two hours, and for two hours, my son could not keep his hands off this senior citizen, and this senior citizen, could not do enough, including and not limiting to, physically shoving my six year old, away.  While my mom was there, and kept pointing out the invasion, I was not on top of it enough, and while my son was wrong, I was more wrong for not making a better learning experience out of it.  However, the learning, for him, comes in a very socially awkward and often causes embarrassment for both parties.  First, I needed to tell Charlie to stop touching this person, and that personal space was being violated.  (In kid friendly terms, of course.)  However, when you do this, he becomes embarrassed.  That much he gets- that is normal.  Then again, I do it all the time, and you know what the general public does???  They make a fool out of me, and say, "Oh no, he's fine!"  Then he looks to me and kinda' makes this look on his face like, "You are such a namby-pamby.. I got this.  See?  They like me, my line of uncomfortable questioning and pawing that borders on scary and sweet all at the same time."  I get that they are embarrassed in this situation as well, but if I am to try to teach acceptable social behaviors, I will need the cooperation of the general public, and that is not always the case.

In retrospect, I thought of this situation in reverse, and also thought, "Wow.  How messed up is this older adult to be so un-nerved by a six year olds' touch?  How sad to not be able to appreciate that."  While that adult has, no doubt, experienced many things in their lifetime, and many different social interactions, this adult was "awkward," at best, in handling a six year old that just wanted to spend some time with them.  After all, wasn't that why they came?  To visit with the kids and us?

In a side bar, this couple asked if they could bring their small dog to our home as well.  Of course I said yes, since we are a dog loving home, and while I know Brody, our rescue Collie, LOVES other dogs, we have never had a play date in our home with him,  and was not entirely sure how the visit would go.  I was prepared to lock him up, and eventually, I did, as their dog is very sweet, and quiet, and Brody is a huge dog, about 50 pounds larger, and was so excited, he could not contain himself with activity.  So, we ended up locking him up in our bedroom because I could see that he was overwhelming their small dog with lack of personal space appreciation.

While Brody is young, about two years old we are guessing from what the rescue told us, he has a very puppy-like demeanor.  He will get super excited, play hard for a short time, then he calms and often, naps to wake up and play some more.  But usually, new people make him VERY excited.  He is especially fond of my mom, and who can blame him?  She comes in, greets us all, then sits in the big round chair that we allow Brody on, and all sixty five pounds of him clamors on top of her lap, and they snuggle forever there until either she gets too hot, or she needs to charge her iPod after all the playing she does on it.  Either way, as excited he gets when she comes, within 10 minutes, he is back to calm, un-hyper "Bro-Baby."

Well, after my mom and the guests left, they talked amongst themselves, and the one guest that kept getting bombarded by Chaz, commented that "Erin really has her hands full  between Charlie and the dog."   Okay, I was not the least bit disturbed by the mention of Charlie being a handful, as ALL children have potential to be "a handful."  But the dog?  Are you serious???!!??? That ticked me off.  No, my dog is not a handful.  My dog was super excited to see another four legged furry thing in the house, and was not able to play fully since he really was too rough and didn't know it. It was out of respect that I locked up my "hyper" dog.  No, my hands are not full with my dog.  My hands are "full" when I have to deal with guests that shove children away and accept their spouses disrespecting everyone in earshot as normal, while I try to raise people to be respectful, and not accept behaviors just because they are the "norm" for that person.  Doesn't make it right, to accept a rude behavior, does it?  Hmm.. interesting things to ponder as we leave our house each day.

So, while not purposely being harsh, but I knew my writing honestly would help me process last nights' events, and might offend others.  I truly don't believe that this couple reads this blog, and I have never told them about it, however, I thought the subject matter might help shed some light on this side of autism, and how I, a parent and wife of people who live with the symptoms, deals with it.  I might not be perfect, and I might be wrong.  But, I am DOING the best I know how.  It's a verb.  Doing.  If you chose to ignore the behaviors, or accept them, you are part of the problem.  I am TRYING to be part of the solution.  I pray for guidance, and ask that He gives me the right words, at the right time.  His timing is perfect.  I am the imperfect one.  IF I offend someone in this blog, I am truly sorry.  It was not the intent.


  1. I loved reading this post, and I love your honest and open approach to it. I think you did a fantastic job at writing this in a way most people can understand. From what I remember, Charlie is such a wonderful and loving child and I think the issue in that situation lies a little more with the guest than with Charlie. He's six, and six year olds aren't very good at determining appropriate situational behaviors anyway! I would LOVE to have some serious snuggle time with both your sweet babies. Anyway, I thought this was so well written and I'm definitely going to be sharing it with a few of the parents of kids I know around here who deal with similar events. Thanks for writing this Erin!

    1. Coming from you, one of my two blogging idols, that meant so much. And yes, please share. If it helps another parent feel validated in some way, I know it was divinely inspired. Ea