It Takes a Village and ALL the Villagers, too.

When my son was born, I was the first of my friends to have a child.  I spent a lot of time reading books about parenting, because it is my nature to research the crap out of stuff.  But, there are a lot of details the books don’t cover.  So, when Nate was about a week old, and I took him on his first shopping trip to Target, I called a girlfriend to come with me.  I had no idea how I was going to carry him in his car seat and push the shopping cart.  My girlfriend, being childless, thought helping me sounded like a great idea, because - yeah, how are you going to handle the cart and carrier by yourself?!? So, there we went, wandering through Target, Nate’s auntie dutifully carrying Nate, shielding him from all potential harm, while I pushed the shopping cart.

If you’ve cared for an infant, you’re laughing at me now.  And, in retrospect, it is kind of funny.  But, you know what saved me from my ignorance about how car seats actually fit into and lock onto shopping carts?  Another mom.  One afternoon, I was struggling to manage Nate in the car carrier and a cart at the grocery store when a woman cautiously approached me.  She apologized for “intruding” but said it looked to her like I was having a hard time, and she asked if I knew the car carrier would lock onto the cart.  In my desperation and surprise, I handed this complete stranger my new baby and let her show me how to do it.  And then I cried and hugged her.  She didn’t laugh at me.  She didn’t make fun of me.  She didn’t think I was a terrible parent or an awful person.  She didn’t suggest that I wasn’t qualified to have a child or that I was abusing my son with my ignorance.  All she saw was a new mom struggling with the figurative weight of her world and an opportunity to lighten the load.  Maybe she even saw a chance to pay forward the help she received.

So, when the roles in my life reversed, and I had a child on the verge of becoming a young man while some of my friends and family were birthing or adopting their own kids, I fielded a lot of questions and cautiously offered advice.  Not everyone took my advice.  Some made decisions for their kids that I wouldn’t have made for mine.  Funny enough, we’re still friends and family.  These people even leave me alone with their children, and I leave them sometimes with mine.  Because – at the end of the day – we all have one thing in common:  a deep and unconditional love for our kids, no matter how they get from uterus to adulthood.

If I learned anything from my experience raising Nate, it’s that raising a child by yourself is not just hard – it’s impossible.  There are no instructions, there is no user’s manual, there’s no troubleshooting guide or index.  When you leave the hospital with that brand new life, the hospital will make sure you installed your car seat right.  The rest is completely on you.  It is – to put it mildly – overwhelming.  Because of that, I asked people I trusted for advice.  I asked people I trusted to pitch in.  I asked for help.  Why?  Well – try as I might – I couldn’t be in two places at once, I didn’t have eyes in the back of my head, I had only two hands when I needed three (or four), and I did actually need some sleep to remain a relatively sane person.  Unless you can simultaneously sleep, shower, and prevent a toddler from coloring on your walls while eating a house plant, it will, in fact, take a village to raise your child.  (Also, call me.)

As many of my readers know, my daughter is autistic.  Sometimes, I write about my experiences as a parent of an autistic child.  When I write about my experiences, I’m motivated by two things:  receiving advice from others and sharing so that others can benefit by trying something that worked or avoiding something that didn’t work.  These are the exact things that motivated me to seek advice about or help raising and caring for Nate.  And, I feel the same compulsion to pay forward the great advice or lessons I learned along the way.  The only variation between the story of raising Nate and the story of raising Helene is the degree of challenge.  And, yes, raising kids is challenging.  There’s nothing wrong with saying that, and it doesn’t mean I don’t love my children.  Marriage is challenging – especially the sharing a bathroom part – but I love my husband.  ”Challenging” is not a euphemism for “I hate it/him/her/them!”  The word actually means (among other things) “invitingly provocative.”

The varied reactions people have to the statement “raising kids is challenging,” exemplifies the lightning rod that is child rearing advice.  Folks tend to have pretty strong opinions about what’s “wrong” or “right” when it comes to child rearing.  In the abstract, this makes sense to me.  As I pointed out earlier, the kiddos do not come with instructions — not even those crazy IKEA drawings.  Opinions will vary far and wide.

With isolated exceptions (are you mom enough?!), I’ve never experienced such outright hostility toward and among parents than I’ve seen within the autism community.  It feels to me as though there is a growing movement among people who identify as or with “autism self-advocates” to silence parents of autistics, and I truly don’t understand why.  I’ve heard these proffered explanations:

• Neurotypical parents are privileged and, therefore, should not complain about raising an autistic child who is not similarly privileged.
  • It is true – as far as I know – that I am neurotypical and my daughter is not.  But does that make me “privileged”? One of the chief arguments I’ve read advanced by autistic self-advocates is that autism is not a “disorder” but an innate part of the person’s being, like a personality trait.  The self-advocate embraces her autism.  Does not then the assertion that being neurotypical is a privilege contradict the assertion that autism is not a disorder?  I’m not asking facetiously.  I’m truly trying to reconcile these arguments, and that does not seem possible to me.  ”Privilege” connotes a special right or advantage that others do not have.  If the autistic self-advocate rejects neurotypicality, how is it a “privilege”?

• There are “too many” parent resources out there, and those voices are drowning out autistic voices.
  • I don’t understand this at all.  I’m pretty sure the Internet is big enough for us all.  I’ve yet to come across a parent blogger who advocates, encourages, condones or otherwise expresses a desire to silence autistic voices.  Yet, I’ve encountered several parent bloggers who actively work to silence other parents in some very petty, juvenile and counter-productive ways.  As a parent sharing my experiences, I’m trying to amplify the conversation about autism to increase awareness, acceptance, resources, and inclusion so that those things might be my daughter’s reality when she is old enough to start making decisions for herself about education, relationships, work and self-care.

• A neurotypical parent cannot understand an autistic person or see life from his/her point of view; therefore, anything the parent says is inauthentic.
  • If I wrote a blog about what it feels like to be autistic, that would certainly be inauthentic.  I can form an educated guess, having talked to autistic adults, but I’ve not experienced and cannot experience it first-hand.  But, I don’t write a blog about what it’s like to be autistic.  I write a blog about being the parent of an autistic.  More to the point, I write a blog that’s sometimes about being Helene’s mom.  And, you know what?  No one can tell me I’m wrong about that, because I am the only person in the world who is Helene’s mom. That’s a biological fact, Jack.

• A neurotypical parent who “complains” about raising an autistic person does not love that person and is actually “abusing” him or her.
  • Do parent bloggers “complain” about raising kids?  That’s probably a fair perception of some blog posts, perhaps even some of my own posts.  It’s hard to be excited and upbeat about negotiating a child’s public meltdowns, attending IEP meetings that are a constant battle of resources and personalities, staying on top of therapy providers who don’t return phone calls or show up on time, losing or purposefully jettisoning “friends” who just do not get it, feeling like you never know enough or do enough, and balancing a job that earns you enough money to afford insurance coverage and therapy co-pays while still maintaining some degree of presence at home for your kids – autistic or otherwise.  So, if I occasionally write a blog post that portrays my life as a mom as less than sunshine and roses, that’s a comment on my life.  It is not a statement about my feelings for my children.  I mean – for the love of Target gift cards and baby wipes – who would volunteer to become a parent (special needs flavored or otherwise) if there wasn’t a huge reward for your effort?  Scraping poop out from underneath my daughter’s fingernails is a very small price to pay for the sound of her voice saying, “I love you,” or the feel of her hand holding mine of her own volition.

So, here it is.  I am an unapologetic neurotypical mom of two great kids, one of whom happens to be autistic.  I write about my experiences as their mom in the various contexts of my life.  If what I write offers you some advice you can use, some insight you value, a laugh you need, or a shoulder to cry upon - great.  If you have constructive words of wisdom to share about your own experiences — as a mom, as an autistic person, as someone who just wants to help, I want to hear from you.  In case I wasn’t clear:  I WANT TO HEAR FROM YOU!  

If you cannot relate to my experience or have nothing helpful to say because you aren’t neurotypical, or you’re not a mom, or you’re not a woman, or you’re not a wife, or you’re not a lawyer, or you’re not one-quarter Greek and a potpourri of fractions of something else, or you have bad grammar, or you don’t like coffee, or you can’t stand people who actually value reason and common sense, or you think it’s okay to tell someone how she should feel, please go read a different blog.  That choice will be better for us both in the long run.  Why?  Because no matter who you are or what group you identify with, you and I have something very important in common:  a need for respect.  I respect the authenticity of the voices that speak from experience without dictating to others what his or her experience ought to be.  In turn, I speak from my experience, which is equally deserving of respect.  If we cannot find common ground there, I wish you well on your journeys elsewhere.