The Private Places of Autism

Since the inception of my blog, there are many places with autism I have not gone.  Some of them are dark.  All of them are just deeply personal.

As the years have unfolded, I have become increasingly bolder, but still, there are many things I have chosen not to share.  There are other autism parents who have emboldened me, and for the sake of general public education, and protecting my children by educating the general public, I've felt it necessary to step out a bit more.

When Noah was first diagnosed, I put a tagline at the bottom of my emails, "Ask me how you can learn more about autism!"  I wanted to be a good mom to Noah, and I thought I was stepping out and being brave for him.  I was eager to educate the entire world.  I would have worn a billboard if possible.  I'll never forget the day someone, a dear friend now, but more of just an acquaintance then, replied, saying she wanted to know more autism.  I froze in front of my computer, just completely lost--when I added that tagline, I didn't actually think someone would reply.  I mean, who reads those things anyway?  So, big girl panties pulled up--after all, I had gotten myself into this!--I replied to my friend with our story.  I couldn't believe how understanding she was.  She was part of our Scout pack, and took to heart everything I told her.  

I've come a long way since then.  Just ask me about the billboard I wear....

When April arrived, April being Autism Awareness/Acceptance Month, I declared on Instagram to be more open in my sharing, at least for this month.  I professed to go a little more in depth, and give others a more "day in the life of" peek into our lives.  I decided I wouldn't hold anything back, no matter how ugly.  I want others to know what autism truly is, and what it truly isn't.

A dear friend asked me, honestly curious, why I have not gone in depth before.

Well, here's the scoop--the biggest reason is my children deserve their privacy.  Anything I print about Noah is now done with his permission.  Avery is reaching the age where that will soon need to be a priority for him, as well.  Even when my rantings musings come from my own perspective, they still need to be printed with with my children's permission.  It's about privacy, and it's about courtesy and respect, even if I'm not using their names directly.  My children are more than autism, and deserve to be seen as the human beings they are.  Another reason is this is just our daily life.  Life goes on, right?  Do you detail your daily life to everyone (okay, so some people do, this is the age of social media, after all!)?  Do you think to detail your actions, or do you just go about your life?  We just go about our daily lives (well, except for those days I unapologetically over-gram, but anyway...).  We live it, and this is just how it is.  This is our normal, such as it may be to some, so I don't really think to chronicle it.  I also don't want pity or sympathy--and when you talk about the dark and dirty, that's what people tend to want to give you, and many times, it's insincere (and I have a really difficult time with insincere, just putting that out there).  It's just what people do.  There's no reason for anyone to pity us, not even on our worst days.  As I stated earlier, this is our life, and we live it.  There's a reason God made my kids this way, and I've seen those reasons take shape time and time again.  It makes me proud when I see my boys embrace their 'weird' so that it helps someone else. We could be the only ones who speak another person's 'language' in a disaster or missions situation, or even just in the grocery store.  Noah could be the only one who understands a patient or victim on a scene he responds to.  This is part of our purpose.  I do my best to teach my children to stand resilient--we are not victims.  Lastly, and perhaps most importantly, there are certain things only other autism parents can understand.  These just aren't things you bring up during lunch at Chik-Fil-A, you know?  You start losing play dates.  Friends don't return texts or emails.  They are afraid of your child.  There are some neurotypical parents try to relate, and honestly, it sounds pathetic when they do--you just really don't want to hear it. You have to physically keep yourself from rolling your eyes.  They mean well, but it just doesn't work that way.  There's no way it can ever ring true.  Little Johnny throwing his stuffed animal at his sister for name calling is not the same as your child repeatedly physically assaulting you because he cannot regulate his own emotions.  Worse, possibly, are the parents who pass it off as "boys will be boys, he will grow out of it, nothing is wrong, here, have another glass of wine."  Yeah, no.  They might be trying to make you feel better, but really they are trying to make themselves feel better.  If this can happen to your kid, it can happen to theirs.  Oh my gosh--can it be spread through toilet seats???? A neurotypical parent may look at some of the things I have to do and call it abuse. Others would think I need a parenting class, and my kid needs a good swift kick in the a$$ (or perhaps the other way around). Someone is going to call Social Services.  People are going to criticize, and much of my life is just beyond comprehension unless you live it day in and day out (for real, there are days I cannot even comprehend it, and I do live it day in and day out!). Regardless, I would open myself up to all kinds of different opinions and unsolicited advice, much of which I already receive and am growing tired of finding nice ways of saying, "I'm really glad that worked for your goldfish," so it's just best to keep my mouth shut, you know?  It's a world many just cannot comprehend.

So why did I finally decide to open up more?

Because people need to see the real, tough, nitty gritty, dark parts of autism. I share the funny moments. I joke about it, I laugh.  I share mostly triumphs, which is great--I firmly believe the parents who are stuck in the trenches need to see those and know these triumphs are possible. They need something to look forward to.  And people who don't understand autism need to see what our kids are capable of, and understand our kids are Everyday Joes, not Rainman.  But these sweet autism parents also need to know they aren't alone in the dark recesses of autism.  And those who don't understand the dark places need to see a different light.  They need to be not so quick to judge that child in the grocery store or the park as a brat, or the parent as an awful parent.

Bottom line:  More compassion, less judgement.

There was a statistic published several years ago which stated mothers of children with autism experience stress similar to that which combat soldiers experience.  I could not fully appreciate this with Noah. I will be horribly honest: I listened to stories other moms told, and thanked my lucky stars.  I feel awful for that.  I'm certainly much closer to this statistic with Avery, but I know there are other moms who still experience things much worse than I do.  Many of my symptoms mimic PTSD.  It's not just depression and anxiety; it's some days I just can't function because of last night.  Some days I can let things roll, other days it can take a week or more to recover.  Doctors say they want to help, they say they understand, but the truth is--they don't.  So, I keep going.  Some days are just about surviving to the next day.

I don't usually talk about the Herculean strength my child is capable of when his anger takes hold and he is not himself.  I can't even call it a temper tantrum, because then you would think of a neurotypical child who needs to be sent to his room until he calms down.  Instead, my child needs to be physically restrained, usually by me, often for up to an hour, so he cannot hurt himself or someone else.  I have to wrap myself around him.  As I restrain my child, he laughs, which is something he cannot control.  It sounds as though he's being belligerent, and he is as he yells at me, but the laughing is something beyond his control.  It's a misfire in his brain, some kind of wire that is crossed.  He also tries to punch, kick, bite and pinch me, and tries to take my glasses to break them, while trying to break free from my self-made restraints.  When these episodes are over, he is a completely different child within minutes, back to laughing (appropriately) and playing, as though nothing transpired.  It is difficult for the rest of us to wrap our minds around, and to recover from.  If I am home alone when this happens, there is no safe place for Ezra to go.  He is scared and frightened, standing there, watching while I tell him gently to go watch tv or play with his toys, or check on the kitties for me--anything to get him away from the situation.  I try to tell him Mommy and Avery are okay.  He knows we are not.  My own body bears the bruises and the burdens. My other children, household chores and my own life are often neglected because I'm busy with so many of these other autism 'duties.' Noah doesn't like bringing friends over because we are never sure when an 'episode' will occur.  He is embarrassed by his younger brother's behavioral problems.

There are executive functioning problems, and sensory issues. What looks like a simple three step task for your child--something you can give him to do on his own--I have to give my children one step at a time, as I stand nearby helping them complete it.  I say I don't think of my kids having that much autism, but it often rears its ugly head at the most inopportune moments.  It is at those times I am reminded we are, in fact, very much an autism family.  I am left trying to explain our situation to a complete stranger who remains doubtful because my kids "don't look autistic."  When we make our way out for haircuts, I have to explain that my toddler isn't your usual toddler.  When the stylist says, "Oh yeah, I'm used to toddlers," I have to explain it's not like that, and they still don't understand.  I will tell you though, we did just find an angel named Jay, and his manager will hear nice things from me, and we'll be using him from now on.  He speaks autism, and this time, I was the one who cried through the haircut, not Ezra.  There are public (and private) meltdowns and temper tantrums. The people who stare.

Another friend, also an autism mom, asked why I feel the need to explain my kids at times like these. Well, it's because people want explanations. They want to know why I (kindly) demand exceptions to rules, why my children are behaving the way they do, why this, and why that.  And sometimes, people are just rude and nosy.  And sometimes, I'm just used to rattling off the explanation without any thought as to why I'm doing so, and without any thought as to whether or not that person actually needs or deserves such an explanation.  On top of that, I've always felt that education is key, and it's my job to pave the way for my kids.  I would rather answer questions, no matter how rude, than have people make assumptions about my children and others 'like them.'

I don't talk about the loneliness that autism parents often go through.  No matter how hard my incredibly amazing friends try, they just cannot understand where I'm coming from.  And I really do have some really beautiful, incredible and amazing friends who love me dearly and bless me.  They want to help, but I don't even know what to tell them or what to ask of them.  I know I have friends who would put themselves in my place during one of Avery's episodes without batting an eye.  They love us both that much.

There are many dark, private places with autism as a parent.  It's difficult to talk about them because they really are so private.  We do our best and keep plugging along.  Some days we think to ourselves that if this is our best, then we really should just call it a day.  Instead, we wake up the next morning and start over, praying and hoping for a better day than the day before.  We research tirelessly, we consult specialists and other parents who walk in our shoes, we grasp at straws, wanting a better life for our kids.

These, and more, are the private places of autism.