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.

 

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30 comments on “It Takes a Village and ALL the Villagers, too.

  1. 1tric says:

    Loved your title. Enjoyed your post. We can be very unhelpful to each other. Enjoy your journey

  2. J-Nut says:

    As far as privilege, I think it is more like a majority/minority dynamic. NTs are privileged because we have the eye of mainstream media, there are more of us, our views are generally accepted and not discounted simply because they have autism and must not be able to understand. It is a valid point. I do think the anger is usually directed in the wrong place, and those labeled as “allies” are probably at least as harmful to the cause as many believe parents to be.

    As always, such a well thought out, well written post. Heart you!

    • ProfMomEsq says:

      That parents have the attention of mainstream media is true. And, I think that is very unfortunate, because there are many, many others in the community who should be heard. I also agree that there’s too much media emphasis on children and not enough on teens and adults on the spectrum. Perhaps I read something more into the privilege argument than was there, so thanks for the perspective. I heart you back!

  3. Joey Baggadonitz says:

    Good thoughts, Danielle. This is a very thoughtful breakdown of deadend rhetoric. We need love and respect for all voices; shouting clandestine tenets from the rooftops are like so many hurled bricks. Impersonal and hurtful.

  4. akbutler says:

    LOVE THIS!
    By paying it forward – sharing what works and what doesn’t, listening and hand holding – we help change things for all our kids.

    Thank you for being a guide for me.

  5. Patty says:

    This is perfect! I love, love, love it! You have so succinctly summarized what I have been feeling for a long time. Thank you for writing this.

  6. NAILED IT! (Opera singing voice)

    I loved this – thank you!!!

  7. Jessica says:

    This is excellent. Absolutely perfectly said.

  8. Oh my gosh oh my gosh oh my gosh. This whole thing was absolutely perfect. I loved it so much. You’ve said the same things I’ve been thinking about all week, but so much better than I ever could. This whole experience is hard, and it’s made harder by being told that I’m not doing it right, that I don’t understand my child, and that I don’t have a right to have a voice about MY experience with autism. I’ve been SO saddened to be vilified because I’m a PARENT of an autistic child by the people that I need to help me understand him. This post was amazing. Completely and totally amazing.

    • ProfMomEsq says:

      No one should ever vilify you Lex. You walk in some difficult shoes, and you are the only one who knows how you feel about the successes and challenges parenting brings you. So, rock on sister soldier. Rock on. And know that I am here if you need a friend.

  9. Miz Kp says:

    There is so much that I can relate to in this post.

  10. Niksmom says:

    Yes. Just…yes. Thank you for this.

  11. Lizbeth says:

    I love this, I heart you.

  12. barefootkicks says:

    I’m not Greek and my grammar is meh, but I absolutely love everything you wrote in this post so I’m not going anywhere. Thank you for this!

  13. Stimey says:

    I agree that there is privilege and that NTs tend to have more of it than autistics, but I don’t think that autism is the only variable when it comes to determining who has privilege. I am autistic, but I have more privilege than many, many NT people. This is obviously not the case for all autistics, but that is because all of us are individuals, with different strengths and weaknesses, and situations. This is an excellent post and I love what you say about respect and listening and LOVE.

  14. I loved your post! I am new to the spectrum kiddo club. I am trying to navigate it the best way that I can. My husband is deployed with the Navy and this diagnosis of our 3 year old daughter came just before he left so I am doing this without my village idiot…..I say that jokingly, of course. It is hard trying to figure this out and keep my husband in the loop that really can not see the day to day goings on and the big picture of everything that I am doing…..and dont get me started on IEP meetings!

    Thank you for letting me hear your ‘voice’.

    • ProfMomEsq says:

      Hi, Gretchen. I chuckled at your “village idiot.” *knowing wink*

      Seriously, though, you must be overwhelmed right now. When Helene was diagnosed, I knew NO ONE who had been there. I was so lucky to fall in with a group of fantastic parents and adult autistics, and I meant what I wrote here about paying it forward. So, if there’s ever anything I can do – advise, listen, provide a safe space to rant without judgment – I am only an email away: profmomesq at hotmail dot com. 😀

  15. Cassie Zupke says:

    Thank you for this post! Sometimes being a mom of a child on the spectrum is like walking through a landmine field — between dealing with our kids’ difficulties, but also the disapproval we may face from some of the staff at our schools, some parents of neurotypical kids, and sadly, some parents of kids on the spectrum. You did a great job of laying out some of the questions I’ve had, too. Take person first language. I’m not against it or for it. But I am against us parents turning the word “autistic” into a bad word.

  16. Anne Spence says:

    Brilliant post. Thank you for writing.

  17. Kerry campbell says:

    I have now graduated from being a mom more than not being a mom. I had my daughter when I was 19. She was a great introduction to motherhood. I was the first in my group of high school friends to have a child and most disappeared when she was born . Looking back now, she was an easy baby. I had no idea what being a mom ment and I was scared that I was “doing it” wrong. Her biggest problem was that she didn’t sleep at night. But the rest of the time she was a pleasant up beat baby that was full of smiles. 3 years later I had her brother. From the start of the pregnancy it was complicated. I had blood problem similar to the rh factor that depleted his red blood cells and had to have amnios every week for most of the pregnancy. When he was born he was 4 weeks early but he was able to come home after 2 weeks in the hospital. By the end of the first month at home he was sick and had a fever of 105. After numerous visits to the hospital we found out he had meningitis. We ended up back in the hospital for about 2 months and he had a PIC line that he came home with.
    Being the parent of a sick child is very different than having a healthy child. Balancing the differences is something that no one teaches you. By the end of the first year of my sons life I realized how very little I knew about life and felt alone in my struggles. By then I knew that there was something different about Austin. He never cried. He would through fits but crying was not involved. He was a quite child that was wide eyed and eager to learn and loved rocks and maps. By this time my other child was 4 and had witnessed most of what had happened with my son. We are a military family and so I didn’t have a lot of people to leave her with when we would go to appointment after appointment with my son so I took her with me. By the end of summer I realized that to be a good parent to my son I needed an education on the medical problems that he was going threw so I enrolled into a nursing program at the community college down the road from our house.
    We moved a lot and after 1 year in college we moved from northern Illinois to Virginia beach. I got right back into another college and continued my nursing education. Mean while, my daughter audrey was starting kindergarten and my son was still obsessed with rocks and maps. He was about to turn 3 and had yet to utter a single word. He was a pleasant child but strange in his interactions with people. He either loved you or could not tolerate being near you. He didn’t enjoy playing with children. He preferred to be alone. The year he turned 3 I was in anatomy and physiology and had canvassed my house with study material . Half way threw the semester he walked up to me and handed me a picture of the knee joint pointed at the knee cap and said ” patella ” . His first word! I was happy and scared all in the same moment! When I took the card from him he smiled and walked away in the glory of his brilliance. We moved again shortly after that to Florida where again I reregistered into college. I remember that Austin had had some seizures and that was why we had annual visit with the neurologist. And at age 5 I scheduled a visit. When we arrived at the hospital he asked the front desk for the evacuation map like he did with every large building we entered. We went into the elevator and got off at the Peds neurology floor. Bright pictures of random animals lined the unit and we checked in and took a seat. When it was our turn with the Doctor, we went into a room that was ocean themed. There were pictures of real ocean life on each wall. There was one of Shamue the killer whale, on one wall the doctor walked in and introduced herself. She started her examination of Austin and after a few of the normal physical assessments she asked him to look at the picture of the whale an the wall so she could look into his eyes.
    For most this would not have been a big deal but for this 5 year old it was. He raised his hand and said wait you are a doctor right?
    “Yes Austin I am” she said back to him.
    ” then you should know that that’s not a whale that you are asking me to look at!” He said . I tried to reason with him at this point and said to please do what the doctor is asking him to do. He raised his voice in concern and said ” that is not a whale at all that is the largest dolphin called an orca. If she doesn’t know this simple fact then how is she a doctor?
    I was extremely embarrassed and started to apologize to the doctor for his behavior. She smiled and said the words that changed my life. Have you ever heard of Aspergers?
    Even though I knew that he was different in the early 2000 autism was not as well addressed as it is now. I remember my heart falling threw the floor and feeling devastated, it seems silly to me that I was so devastated by that simple word. Life is hard enough without complications and to this point I thought that we had already had more than your average family. I knew so little about this condition and did not know how to get information. If I had known then that autistic children are 10 times more likely to be struck by a car than any other group of people I would’ve had a completely different way of teaching him about road safety. 6 months to the day of that appointment Austin was hit by a pizza truck and suffered a brain injury.
    No one tells you what you get as a mom. People don’t know. You don’t know whether you get a healthy child or a sick child or just a child that doesn’t fit into societies norms. You just do the best with what you are given. On January 9 2006 my life was hit by a pizza delivery truck and I can’t tell you when it started again, I can just say this, be happy for the things in your life that are different! You don’t know that your ugly duckling is not a duck at all and comparing him to other ducks is unreasonable. It’s ok to be a goose in a duck world. Autism is a finicky character. And she will surprise you at every turn. Austen’s accident was ten years ago last month and the child I have today is very different than the one I imagined after hearing the words that so easily fell from her lips. Autism is truly a spectrum and it is a line that can go up or down. I know why now that Aspergers is not its own diagnosis but is within the limits of the autism spectrum. Being a parent to Botha psychosocial norm and one on the spectrum is a unique experience and I have been blessed to know both. My nursing career took back seat but last month 10 years after his accident I finished my schooling to qualify to take the nclex. Never give up on yourself or your children. You are never alone as a parent! Even if you feel like you are we are out here with open arms to help you and to not judge you!

It's boring when I do all the talking around here. Speak now, while you can get a word in edgewise.

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