Things that are Weird and Hard to Get Used to

Someone please hand me another box of tissues...

Shawn and I really, really miss our kid.  Yes, we are super proud of him and thrilled beyond belief for this new chapter in his life--but I won't lie, it kind of feels as though it's coming at a price.  My arms are a little empty.  Sending our kids out into the world successfully means we've done our job as parents--this is what we work their entire first two decades of life towards!  Yay us!  Yay them!  Good parenting typically means you've worked yourself right out of your job.  

I've always determined Abba had His own good reasons for spacing our kids out the way He did, and I'm telling you, I'm understanding it more than ever right now.  There's no way I could send all three boys off in quick succession.  I'm so relieved life will slow down a little bit again before we release our next one out in to the world.  I'm so grateful there are years to adjust to this in between each child. 

I once heard this advice about dropping your child off at college: "Don't look in the rearview mirror (as you leave)"; but there isn't much advice about watching your child pull out of the driveway for the last time.  How do I do this?  I've talked with every friend of mine who has already traveled this road, I've picked brains, I've hugged and held on for dear life.  Most friends sent their kids off to college, so they had time to adjust to their absence before watching that final departure.  I couldn't turn my back as he pulled away, I couldn't avert my eyes, I couldn't just go in the house and ignore his exit.  I couldn't cling to him and ground him for the rest of his life--and believe me, I really REALLY wanted to.  It was tempting to try it just to see what would happen.  Or maybe take his car keys.  I wanted to run after his car, chasing it through the neighborhood to the final stop sign, begging him to change his mind.  In the weeks leading up to his departure, I went through my anxiety and migraine meds like they're Tic Tacs.  Ever since he announced his move, I've been joking that just when I think I've been through the scariest part of his life as his mom (anyone remember when he broke up a knife fight at a Jamaican orphanage?!?!? Life as a first responder???), he ups the ante, saying, "Hold my Bang and watch this."  This time it was moving.  Far away.  On his own.  Even though I know all of this is the absolute right thing for him to do and the right time to do it.  He deserves to live his life.  He deserves happiness.  He's doing exactly what he's supposed to do at his age.  And I am happy for him.  No--I really am, I promise!  When I remind the littles it's okay to be sad for us but we need to be happy for Noah, it's just as much for myself as it is for them, though.

Needless to say, it's been an adjustment here.  Food and sodas aren't disappearing at alarming rates anymore,  I'm not tripping over his shoes and random socks, his cat just might be more depressed than the rest of us are, and even though the littles and I have transformed his room into a classroom/sensory room/ABA room, we find ourselves still referring to it as "Noah's room."  I feel as though I *finally* got my feet under me as a family of five, and now I'm having to readjust--again--to being a family of four.  Venturing out with the littles (conversation between myself and Shawn: With Noah gone, do we still refer to them to as the littles???), I have this odd, insecure feeling, as though I need to announce that I have a grown and flown child as well.  "Family of four?"  "No!  Yes! Wait! I mean, there's six of us--well, five.  But yeah, four, I guess."  Our family is experiencing a new normal, and it's been a little weird.  You hear about downsizing homes, material items, cars, etc, but No.  One.  Tells.  You.  About.  Downsizing.  Your.  Family.  As.  The.  Kids.  Move.  Out.  The emotions are big and they are real.  There have been a LOT of tears.

Here are just a few of the things we're adjusting to:

*Dinner reservations for four

*We are still that loud family, but not that big, loud family

*Not having to buy as much toilet paper (and yet, our grocery bill hasn't decreased because I'm still in "feeding three kids" hoarding mode)

*Even with two children remaining, four cats, a dog and an incredibly opinionated duck, there's an emptiness and a quiet in the house

*Not having to double the dinner recipes (but I'm still over-cooking because I'm not quite sure how to not cook for an army)

*Not finding cereal dishes in the sink in the morning after a midnight kitchen raid (as frustrated as I was, I'm kind of missing that sign of life)

*No mumbling grumpy pants stumbling down the stairs to polish off last night's leftovers before heading to work

*Towels and dishes made a remarkable reappearance and are no longer vanishing into thin air (also, we aren't running the dishwasher every night now--what's up with that?)

*My days aren't laced with constant sarcasm and dry humor (well, there's still mine, but I'm missing his contributions)

*The bickering is quieter and with only two voices, a little easier to follow 

*My Shawn's-at-work/on call-partner-in-crime is missing (Avery is desperately, lovingly, trying to fill that hole)

*Not waiting up at night to make sure he gets home safely from work

*We gained a wonderful new sort-of family member, whom we adore and love already, and she just fit right in immediately

*Not having to tiptoe around and whisper in the morning as we begin our day and he ends his (although, the littles think this means they can now make enough noise to wake the dead)

*Buying a smaller, non-family grid calendar for 2022 and retiring Noah's calendar ink color (What?  Your family members don't have designated colors on the family calendar???  Weirdo.)

I miss my boy.  But I'm so damn proud of him and I cannot do anything but know we put our everything into preparing him for this moment--knowing he is ready for it--and pray the best over the rest of his life (and make sure he knows he can always come home).  I can't wait to see what the next chapters of his life hold for him.

Carried and Loved

"How many children do you have," and "Three boys?" are questions which always catch me off guard.  I know the answer, but is the person really asking  for the honest answer?  Sadly, it is one of those "merely polite" questions, so I seldom go into detail.  But I always feel guilty.  

The answers--Shawn and I have four children; three boys and a little girl.

Sixteen years ago, Shawn and I lost our daughter.  When I don't acknowledge her life, I feel as though I'm denying she existed and the unlimited possibilities life held for her.  I feel as though I'm denying the world around us the joy she's brought us, even in her absence.  I feel like the world's shittiest mom when I don't talk about our daughter.  To be perfectly clear, we did not lose a pregnancy, we did not lose a fetus, we did not lose a clump of cells--we lost a child.  Our child.  We didn't get to meet her and we never held her in our arms.  All the same, I know her inside and out, just as I do our boys.  In complete transparency, I hadn't even told Shawn I was pregnant yet.  I hid the loss for over a year, suffering in silence with shame.  I was absolutely certain I'd somehow caused her death.  I was angry, I was hurting and filled with contempt for myself.

I write about Grace, particularly during October, Pregnancy and Infant Loss Awareness Month, every so often for several reasons.  Even though her life was brief, her legacy is long.  She taught me, and subsequently our family, more in her few short weeks within me than some people are able to teach in long decades on earth.  Grace taught me about being grateful for who we already had in our lives.  She taught me to be a better mom to Noah.  She taught me the true value of life as I was learning to know and experience it.  She deserves to be remembered.

I also write because I want other parents and families to know they aren't alone.  This is a club every parent fears and no one asks to belong to, yet many of us find ourselves here (at least one in four of us).  The parents experiencing loss could look like a big family who have suffered one, or even multiple losses.  They could also look like a childless couple.  Please, if you do know parents who do not have living children, please still honor them as parents.  Never having had a chance to hold your child still makes one a parent.  Be kind.  Loss and infertility are maddeningly heartbreaking, infertility being an inexplicable loss in a league of its own.  Your arms ache and grow weary from the weight of emptiness.  

Everyone's loss and infertility stories are different.  Our experiences vary, as do the reasons and causes. I became very ill after I had Noah, diagnosed with multiple chronic diseases, taking many medications with serious consequences.  My doctors told us we were lucky to have Noah and to not get our hopes up about more children.  After losing Grace, I sunk into a deep(er) depression, resigning myself to the advice of my doctors.

I spent quite a few years white hot with anger.  I absolutely tortured myself, reading news stories about parents unworthy of being parents.  I lashed out at those I deemed unfit, always wondering how it was they could have children so freely, without seemingly a care for them, when I wanted children so badly and could not even force my body to attempt to make a baby.  It felt like a punishment and I couldn't understand who was doling it out or what it was for.  I wrote angry blogs, I became suicidally depressed, I screamed into the abyss and was a generally nasty person to be around.  I blamed God a LOT.  I felt unworthy of life--unworthy of giving life--unworthy of raising Noah, unworthy of being what I considered a good wife.  It took me so long to forgive myself, to realize this was not something being done to me, to relinquish the control I wanted to have over the situation, to come to terms with the entire ordeal.

These days I'm doing much better, but it took an incredibly long time to heal.  I still have a bad moment here and there--a fleeting moment of sadness over milestones we were denied, a song that makes me think of her, family moments that remind me someone is missing.  But I don't dwell on her absence the way I used to.

I hit a remission years after Grace's death and we were given the go ahead to try for another baby.  It took us over two years for Avery (for a total of nine years between him and Noah), and another five for Ezra (a total of six years between him and Avery).  Both were considered high risk pregnancies, but not because of my previous miscarriage years earlier.  Did you know a woman has to have three to four miscarriages in a row, within the same year, before a doctor considers her high risk due to miscarriage?  One miscarriage, two miscarriages, even three or four  miscarriages separated by years and/or 'successful' pregnancies only get you a pat on the head, a smile and "Well, at least you can try again!  There's nothing to worry about!  You're just fine!"  No extra monitoring, no extra tests--nothing.  No matter how scared you are.  Not even to reassure you.  I was utterly unable to relax and enjoy my pregnancies with Avery and Ezra because I was so terrified.  I lost count of the pregnancy tests I took in the beginnings of their pregnancies.  Every twinge, every off feeling, every single thing that didn't feel quite right caused panic.  I'd never been so grateful for HG as I was with Ezra because it meant I was still pregnant with him.  With each trip to the ER and doctor for fluids and anti-nausea meds, I begged for sonograms, anything, for reassurance.  I'm here to tell you, they do not care.  You are simply written off as hysterical.  "If *the fetus is in distress, there isn't anything we can do at this stage anyway."  They use cold, hard medical terminology: fetus, pregnancy.  They will not acknowledge the life you are carrying is a human being, *your baby.  You won't even receive an insincere apology as they leave the room.

I know we are one of the few fortunate families who came out of this on the other end.  For every one of us who make it, there are countless others who don't.  To those of you still fighting this battle, to those of you throwing in the towel, my heart is with you.  Please know you aren't alone.    

Grace--one day we'll see you on the other side of the rainbow.  Until then, when we finally get to hold you, we miss you.  We love you so much-- Mom and Dad   

The Uninvited

 I've struggled with finding my words--massive writer's block (let's call it a boulder)--for almost three years.  Wow.  Three years.  That hurts so, so much.  While grief was the original reason and is still a major player, I've recently had a huge awakening as to the other, perhaps root-reason my brain shuts down each time I come here to pour out my thoughts in my own personal space.  I've seen so few posts through to completion.  There are currently over 75 drafts of started-never-finished-never-published posts.  Some of them are only a few sentences, others are completed but feel unfinished.  Bits and pieces of insight, life as I know it, inexplicable anguish, raw motherhood...

I started this blog as a safe outlet for myself.  Our then-ten year old had just been diagnosed with ADHD and autism, and we had an infant.  We were trying to homeschool Noah, I was trying to hang on to my volunteer position at a grief center, I was trying to do everything and be everyone--while attempting to maintain (what was left of) my sanity.  I needed a place to vent, and I knew I'd eventually want to look back on those years to see how far we'd come.  I needed a place to keep memories and the deepest parts of myself for my kids to have one day.  This was a sacred place where I could yell, scream, curse the night, pray, cry, rejoice, share news, laugh, encourage others and just be myself.  Things I never dared say out loud could safely go right here.  Writing has always been a healthy form of unraveling myself.  Therapy, yes, but there have still been things I've always held back.  This has been where I could come to not only get everything out of my head, but even to actually get out of my own head.  The words flowed so effortlessly from my brain through my fingertips, to the keyboard, onto the screen.  At the end of a writing session, I would walk away feeling less burdened and less weary.  There was extreme relief with such release.  So much freedom.  Many times, my posts have been unspoken prayers, crying out to Abba or outright screaming at Him, safely put here.  So many tears have been shed while sitting at this keyboard.  Over the years, I've also come to hope this space would be a welcome place of laughter, solace and camaraderie, even a place of being able to explain myself, autism, depression and our lives--and so much more--to others.

This boulder standing in my path has left me wondering if my time as a writer has just run its own natural course.  Perhaps I've finally gotten all the words out of my head (haha) and it's time to just close down my blog.  After all, these long, parched months in between each post have been the longest I've gone without writing in the ten years since I typed my first sentence.  But no, that's not it.  I still have so much to say, so many mamas to encourage, so many things to teach the world (I hope).

So, what is it?  What causes my brain to instantly shut down every time I sit at my computer?  

The uninvited.  

I'm not talking about complete strangers (I actually prefer an audience of outsiders.  There's something to be said for anonymity, for not knowing--not having to know--who is on the other side of my screen.).  My blog has always been, and will remain, a public forum.  I briefly considered making my blog invitation only, or starting an entirely new private one, but I know deep in my heart, that is not the solution to this problem.  Running and hiding is not the answer. (Edit: Yes, after some deep soul searching and a moment of clarity, I did change the name and domain, but not for the reason of hiding.  I did so because it's just the right time for a new name.)  I routinely post my blogs to my social media account, use the website as a tagline in my emails and refer other struggling mamas to my place for love and encouragement.  

Rather, I'm talking about those who have no right to be here, but believe themselves entitled.  People who made choices and continue to refuse to accept consequences.  They long ago forfeited any right to a place at my table, yet I keep finding them behind the bushes, lying in wait for the next round of 'news.'  Some would love for you to believe it's their way of continuing to be a part of my life, the only possible way for them to do so (never believe a narcissist--and please, PLEASE remember there are always three sides to any story--Person A's, Person B's and the truth; a narcissist's so-called side seldom contains any semblance of the truth), because *palm to forehead* I ruthlessly cut them out.  

As much as I hate admitting it, it's also related to fear and anger.  Without doubt, my brain's refusal to budge is a form of self protection.  As hard as I've worked as an adult to overcome past trauma, I still so often resort back to that scared little girl, silently willing myself and everyone else in the house to please just not rock the boat.  Please don't make her mad.  Please don't do this.  I've come so far--but I still have so much further to go.  I am angry with myself for allowing the fear and shame to creep back in.  The shame never belonged on my shoulders to begin with.  I am angry with these blog-poachers, these unwell information seekers who ultimately lost any privilege they could've possibly had to be privy to my innermost thoughts and feelings.

How dare these people presume they are still welcome after everything, how dare they even think of coming here--knowing they aren't welcome, giggling as they get one over on me.  But I know why they do--you can't stop a narcissist from narcissisting.  Quite simply, it is one particular person's way of continuing to attempt to maintain control over my life and I'm sick to death of it.  

You know who you are.  My blog is not your personal newsstand or gossip rag, nor was it ever intended as such once you left our lives.  With your toxic behavior and your unsafe actions, you made your choice glaringly clear.  You set the precedent for the ugly ways in which my sister and I spoke to ourselves, as well as how we allowed others to treat us and speak to us.  You were supposed to keep us safe from danger; instead, the whole time, you were the danger lurking behind the closed doors of what we so desperately wanted to call home, lying to friends and family alike, just a couple of little girls playing pretend.  As much as we wanted someone to see it and believe us, we turned on those very, very few who did recognize your behavior patterns for what they were, out of fear of how you'd react.  You began a vicious cycle of abuse--a campaign of utter hatred--against us, your daughters.  Your rage-filled efforts to control us even into our adulthoods, plunged us into complete chaos, never knowing which end was up and what would set you off.  A lifetime of fight or flight.  Memories of your tantrums and tirades are still enough to leave me quaking.  I had to watch while Nancy perpetuated your cycle, building on it with her own, completely left without any tools to end it.  She ran from you, the fire, to him, the frying pan.  And now I have to watch as her children do the same with their children.  It's taken me years to shake it, to confront it, to make sure I pass as little of it as possible on to my own children.  In our home, we say "I'm sorry," we say, "I love you," (and mean it), we don't gaslight each other, we respect each other, we don't demand affection, we don't demand perfection, we allow our kids to be kids, we allow our kids to be our teachers.  I hate--hate--what you got away with and think you still can.  You are not welcome here.  Nancy may not have gotten out alive, but I sure as hell did.  I will no longer allow you to make the little girl in me afraid of putting myself, my thoughts, my feelings and my choices here, or anywhere else I choose to put them.  I'm taking back my voice.  It ends here.  It ends now.  

Healing

(Edit: This was written last weekend but not posted until now)

I've needed a good day, a good time, a really good something, anything--to just be able to sit back and be--still, present, in the moment--with my family and take it all in.  It's been a long time coming.

I've needed to laugh, to dance, to smile, be silly.  To just remember how happy feels.  To be swallowed up with happy.  I've forgotten what it feels like.  To have fun.  To just be with the ones I love the most, and have a really amazing wonderful time and enjoy myself--to feel safe, to feel secure.  To KNOW I'm safe.  To know it's all okay and it will be okay.  To laugh and live out loud.

Do you ever watch your family--like one of those out of body kind of experiences-- with overwhelming happiness and joy and just think to yourself, "That's it right there.  That's my whole heart.  They're my whole world,"?  You're fully participating, but you're also an intense observer, watching from the outside looking in.  You feel the warmth emanating from the moment, you find yourself caught up in the laughter--your face even hurts from smiling so hard and so big.

And just like that--your shoulders relax.  Your body gives in to itself, it gives in to the moment.  You throw your head back with unmistakable laughter.  You are faced with a reality you knew all along, but still needed a reminder of--especially during and after the low, dark'\ times--those who matter, those who are important, those who make your world go round.  All the tears, the screams, the pent up anger you've been holding in--finally released in moments just like this.  

Tonight, I finally let go. 

I allowed myself to feel everything I needed to feel, every emotion, both good and bad.  I allowed my brain, heart and body to express those emotions fully.  

I did just that tonight.  I let go.  Finally.  And I'm here to tell you--it felt absolutely incredible.

What's in a Name

Not long ago, I decided to change the name of my blog.  It just kind of happened.  While writing a different post, I typed out the sentence, "life as I know it so far."  Whoa.  Only six words, but it felt incredibly profound.

When I first named this space, I was struggling with life; a friend was encouraging me to start a blog as an outlet, but I had no idea what to call it.  The day Noah was diagnosed with autism, Shawn and I loaded the kids in the car then met each other at the back bumper, kicking tires and crying, trying to regroup before making the ninety minute drive home.  Noah wasn't eligible for support services ("high functioning"); we were given a folder of information (I could've written) amounting to "Congratulations! Your kid has autism!" and set up with a six month follow up appointment.  We were on our own.  Angry and frustrated, I screamed at the sky, "They just dumped us in left field!" And thus, my blog was born.

In the years following that very first post, I've gained insight into life, I've been led by and taught by my children, followed Abba to far off places when He called us, I've been able to lead mamas to comfort, encouragement and love, we've moved, we've had two more babies and we dedicated ourselves to growing our marriage, simply loving well and loving hard.  I've celebrated, mourned, laughed and cried.  I've learned a world about autism--and attempted to teach the world about autism.  I've been gifted second, third and fourth chances I never deserved, as well as many, many lessons I did deserve (and needed).  I learned to embrace left field with my whole heart and love nearly every aspect of the life I've been given.  I learned to live out loud, with gratitude.  I've lived a whole lifetime.

Life is changing here, oftentimes at what feels like warp speed.  My days of raising small children are gone, as are the days of carting constant chaos in my car and constantly being surrounded by three children.  I've become that older mom in the grocery store beaming at the babies, encouraging their mamas, knowing those first years are so hard, but so so worthy.  Recently we had the privilege of launching our oldest out into the world, and we have the honor of watching our younger two mature and grow.  As a family unit, we are all moving forward; as individuals, we're doing the same.  Rest assured, we certainly still live in left field, but left field is shifting and evolving.

My posts no longer center so much on raising autism as they used to.  They no longer concentrate on left field, per se.  If you've been around the past three years, you know I've focused more on grief, loss and health.  

I've been stuck for a long while.  Just bogged down by life and circumstances beyond my control.  

This feels like a good time to change the name... Something healthy to do for myself (and in turn, my family).  I feel a forward movement, a shedding of my skin.  It's just a name change--I'm still me, the writer is still the same--but it feels so monumental.  The timing is good.  

Welcome to my continuing journey and what I know about life so far.  Thank you for joining me.

"You Just Need to Smile!"

The other day while at the drive through, the teenage cashier admonished me, "Ma'am, you look so sad!  You just need to smile," with a super-happy smile of her own I could hear in her voice through her mask.

I fully expected a mini van with a "live, laugh, love" sticker emblazoned across the back window to magically appear in front of me, but I digress. 

I really, really wanted to take the opportunity to educate this young lady about 'just smiling.'  I wanted to suggest some alternatives to demanding I smile.  Instead, I muttered something about just being tired (my go-to answer for the past two years).  I know she (thought) she meant well, which was the main reason I let it go.  

Also--this is just my face, girlfriend.

Here is what I want you, my readers, to take away from my experience:

While studies have shown that 'just smiling' can in fact impact your overall feelings of well being, it's not going to magically improve the single solitary molecule of serotonin bouncing around half-heartedly in your brain.  'Thinking positively' absolutely has its place... 

--BUT--

There are many things one should take into account before commanding someone to smile (or even pray).  For argument's sake, let's just assume the person doesn't understand s/he is being rude and dismissive.

The person could be grieving a profound loss--be it a person, a job, an identity, their home, a pet or a marriage.  The woman you chastise might be battling postpartum depression and feelings of inadequacy as a new (or even seasoned) mama.  Depression, bad news, poor physical, spiritual and mental health, stress--these are all only a smattering of reasons a person may not be smiling.  Reminding any of these people to just smile invalidates their circumstances.  It is even toxic.

My point is, you never know the demons another person is holding inside her/himself.  It's absolutely a necessity to remain kind, and even better to allow others the knowledge they are both seen and heard, but demanding a smile is seldom, if ever, the route to take to get there.  

Autism

 So, it's Autism "Awareness" Month again.  Yep.  

I usually try to stay relatively positive in terms of our life with autism, but recently, I just haven't been able to do it.  I'm struggling with a lot of resentment, bitterness and anger, intertwined with grief in a huge knot.  That knot is a constant for me, spending most of its time caught in my chest.  Today though, it's mostly been in my throat.  The tears have been right there, threatening at times today, while just outright pouring down at others.  I'm not angry at my children, mind you--but at autism and almost everything it has brought into my home.  I'm really struggling right now.  I need a good cry.  I need to yell and scream about the unfairness of it.  I need a good therapist.  Still.  I don't want my children to see or know this side of me.  These are my own personal demons and I don't want to share them with my children.  I need to get out of my own head.  I need to get out of my own way.  Sometimes the weight and enormity of it all just hits me--it's real and it's freaking hard.

Avery's psychiatrist used the word "disability" five times in 30 minutes today.  I know this is the true nature of autism and the word "disability" itself is not a dirty one.  In fact, our society needs to normalize the proper use of the word.   However, it's not a word we use much in our home because we don't ever want our kids to fall back on the "I have autism/adhd/anxiety/dyslexia/etc so I can't" excuse.  There are absolutely things they won't be able to do--but it may not be due to a diagnosis.  We also don't want them to give up trying, or not try at all.  They may have to use a different way to get from Point A to Point B, and it might take them a little bit longer--but we still want them to try.  That said, I do feel they are doing their absolute best in every aspect of their lives.  But as his/their mom--it freaking sucks.  It hurts.  It's hard to hear.  It's a big punch to the gut.  

I put awareness in quotes because if you were to ask any of us within the autism community, we'd tell you there's plenty of awareness.  There seems to be such a shroud of mystery surrounding autism due to its unpredictability in who it will affect, how differently it affects each individual and why it happens, that it absolutely fascinates many people. 

Of course, we're talking about the Hollywood version of autism kind of awareness.  Let's be realistic--very few people likely know someone who knows of someone with autism (the current autism prevalence rate is 1 in 54 children)--so the everyday Joe can relate to autism only as far as the most recent show or movie featuring a character with autism (if that).  Most of these characters range from the nonverbal savant, to quirky and endearing, to, well, portraying a child as a spoiled brat.  Typically I stay away from such shows and movies because 1, I live it, and  2, their representation usually just makes my head explode.  Sometimes these impressions make me angry because they hit too close to home.  Anger is often easier than parental anguish.  I have yet to see a character played by an actual person with autism, and I have yet to see a proper depiction of the downright dirty sides of autism.  While some of the acting may be spot on, it's just that--acting.  These actors are able to leave autism on the set and go home to their neurotypical lives at the end of each day.  There's no real understanding of the totality of this disorder. 

When we talk about awareness, what does that actually mean?  For many, it means being afraid of it for your own child--fearing the unknown.  You count your blessings when it doesn't happen to your child.  Perhaps you know about it only in this vague, obtuse manner because it doesn't affect you--you know it exists, but you don't have any actual knowledge.  Maybe you believe it's the result of helicopter parenting (or some other parental fault), not the result of DNA gone haywire--and you believe you hold all the secrets to parenting better (and feel it's your duty to share them), and/or think it's perfectly fine to compare your neurotypical kid to my kids when I try to talk about our daily life.  Possibly, autism is either Rainman or Sheldon for you, there is no in between.  Or, perhaps you've got some understanding of it so you are more patient with the child having a difficult time in the grocery store--you know he's having a hard time, not giving a hard time.  See the difference?

I'm certain you'd agree with me in my assessment of awareness.  Yes Amy, we get it, your kids have autism.  You're a warrior.  You're a saint.  We get it.  Your kids think differently.  Your kids have meltdowns.  There are certain situations they can't handle.  Yeah, yeah, yeah, we get it.  

The word autism has just about become a buzz word these days.  It's certainly advantageous for many.  There are people with no attachment whatsoever to autism who profit from it, making shirts and hats and pins and magnets and stickers (some of which I purchase, but I try to vet the maker first).  Others profit from making weighted products (for which I'm grateful), fidgets and other sensory and autism related items.  Very few of these people even know of someone on the spectrum.  I obviously can't possibly know every maker's motive--are they genuinely interested in propelling the autism community forward, or are they just in it for the money?--but sometimes it really just rubs me the wrong way.  I love my children and I do not believe their diagnoses to be a point of sale for others.  Autism has almost become a racket--all the therapies, the necessary stim and sensory items, the specialists, the physical provisions other parents need to care for their adult children, law services, day care, home care/respite, and facilities for adult children--all of these are steeply priced (yet incredibly necessary) and for many, out of reach, even with insurance.  

Yes.  You can't get through Etsy, the day's news, college classes, tv, social media and an abundance of other outlets without being made aware of autism.  It's out there, folks!   

So yes, there's plenty of awareness.  

But what of acceptance?  After all, this is the ultimate goal of any parent of a child with special needs--knowing our children will be accepted.  What of public education?

So let's talk about acceptance, then.  Let's talk about education.  As parents, we need to know our children will be accepted and respected--not because of your pity, not for social media likes and other forms of saintly recognition, but because you and your children genuinely believe our children are worthy of such treatment.  After all, don't you want to be treated with respect, and liked based on your own merits, your own personality and your own morals?  For the record, please don't ever confuse pity and virtue signaling with acceptance and respect.  Will you and your children be kind to my children when I'm not there to stand guard?  Will you make them feel seen and heard?  What are YOU teaching your children?  How will they behave when you're not there?  You can be just as aware as you want to be that autism exists, but unless you are properly educated about it, you're still going to judge me as a bad mother and my kid as a brat when he's melting down because it doesn't look like your Hollywood knowledge of autism.  One of my favorites: "He doesn't look autistic!"  Well thank you, that's because we use a lot of make up to cover up that particular blemish!  You still won't be able to comprehend the fights with insurance and schools, the waitlists for therapies and specialists, the absolute need for that piece of paper with the diagnosis on it necessary to receive any sort of help, the meltdowns which leave you and your child feeling like wet noodles, the outbursts resulting in physical harm to you, your child, someone else or property, the mental and emotional fatigue in just trying to get through each day.  I'll share a secret with you: I have yet to read the littles' full evals from our trips to Children's for their diagnoses.  I just can't bring myself to do it.  I've caught bits and pieces as I've made photocopies for specialists and therapists, but I always dissolve into tears.  I know I need to read them, but it's something I just don't feel I have the strength for.  Most nights I go to bed feeling as though I've failed my kids.  That's just how it is. 

I am not a saint.  I am not a warrior.  I'm certainly not Super Woman.  And yes, if this was your only choice, you could in fact do what I do everyday.  Not doing it is simply not a choice--and not doing it well is even less of a choice.  My kids are not your inspiration.  They deal with things far beyond their exterior quirks.  They have executive functioning disorders and higher learning disabilities.  They constantly battle their own brains, which often betray them.  Ezra is behind academically by at least two years.  No amount of rigorous, intense homeschooling is going to catch him up as far as he needs to be--and it's also not fair to him.  He loves school.  He's excited about school.  But right now, he's simply not good at school.   My kids have bottomless anxiety.  I have bottomless anxiety.  When your child is released from the care of any particular therapy, you really want it to be one of those released-from-captivity butterfly moments--the sun is shining, the birds are singing and your little butterfly just takes off!  Instead, it's more like a turtle being released--he slowly takes four tentative steps, he stops, and while trying to turn around, he tips over on his back.  Oh, and it's pouring.  We are in the trenches day in and day out.  Therapies and other necessities often bankrupt many families.  My kids are square pegs in a round hole kind of world.  They aren't going to fit in.  I can't--and won't--force it.  And that's just fine.  My job as their mom is twofold: to help them learn to adapt (not change, mind you) so they can function in this world without me, and to educate the world to allow my kids grace.  For my kids, this means therapies upon therapies, it means daily grace and mercy, it means homeschooling and practicing our coping strategies.  For our world, it's a lot of leading by example, screaming talking about what my kids need and how best to help--it means being an endless loop for them.  Many times, especially when we meet with a dead end, it means circling back around and starting over.  It means doing things our own way and making our own path.  It means teaching my kids from the very beginning it's absolutely necessary to use their voices, to speak up, to advocate for themselves, to ask questions and to answer the unasked questions of others.  

Acceptance means my kids being able to go through life without others questioning them any longer.  It means the parents caring for their adult child no longer have to be terrified of dying before their child, or wondering how they're going to pay for the next case of adult diapers because these things are already taken care of.  Acceptance means insurance pays for necessary therapies and items--and it means those therapies and items are affordably priced.  It means parents receive the help we need when we need it.  Acceptance means more than adequate representation and inclusion within neurotypical communities and activities.

There's so much I want you to learn about autism as a whole, and my kids specifically--but this is a good start.  Just like any parent--Just.  Like.  You.--I want my kids to feel safe, to be safe.  I want them to be loved for who they are and to be comfortable in their own skin.  I want you to get to know them, to really know their personalities beyond autism.

I want the world to see them the way my husband, God and I see them.