"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.

If You Give a Mom a Muffin

If you give a mom a muffin, she just might want hot tea with it.  

And a quiet moment to enjoy them, but well, kids.

Upon opening the microwave to heat up the water, she sees the microwave really should be cleaned.  She goes to the cleaning cabinet for some cleaner.

When she reaches for the cleaner, she realizes she's out of cleaner, along with a few other household items.  Soooo she heads for her computer to add those items to the shopping list.  

On her way to the computer, she notices the floors really could use a good vacuuming (dust bunnies and duck feathers everywhere while Jeeves the Robot Vacuum is still on Christmas vacation!).  She takes a detour from the computer to the closet for the vacuum.

When she opens the coat closet for the vacuum, she notices several coats on the floor.  The coats the kids were supposed to hang up.  *Sigh*  After hanging the coats up--

"Hmmmm.  What was I doing?," she thinks to herself.

Unable to remember, she heads upstairs to tackle the laundry.  

From the stairwell, she hears children fighting.  Changing course, she heads to break up the fight.

While breaking up the fight, she notices how awful the boy's room looks.  

"Okay!  Let's tackle this room," she shouts.

She gives the children their marching (cleaning) orders, and exclaims, "Let's do this bathroom while we're at it!" 

Boys are sooooo gross.

It's time for dinner and with everything else she didn't do today, she forgot to prepare something for dinner!  Frozen pizza it is!

Okay, a little bit of TV before bed--but only a little, okay?  Hoping to just flop on the couch and completely zone out with her kids, instead she notices the blankets that need folding and pillows that need picking up.  Ah yes, and the wee one has a lot on his mind and it allllll needs to come out before bed!

Time to put the children to bed!  But the middle has so much to tell her about his book and his prayers, and the small one keeps coming out for one more hug.  

Hugging her children with all her might just one more time, she tucks them, kisses their sweet foreheads and reminds them how much they are loved.

Ahhhhh, the moment she's been waiting for--bedtime!  But her brain is buzzing and refuses to settle down.  Too many thoughts.  Oh, and the dog wants to go potty. 

After letting the dog out, she hears the pet water fountain beginning to buzz, signaling it's low.  Down to the basement to fill it, she goes!

On the landing, she spies the paper plate her muffin had once sat upon.  The dog had eaten it, wrapping and all.

"Might as well check the cat food bowl while I'm down here," she says to herself.  

After refilling the cat food, she lets the dog back in and realizes her brain is still oh so very busy.  

Sitting down to write a blog, she wants a cup of Bedtime Tea to sip on.  Opening the microwave, she finds the mug from that morning, still full, just waiting to be warmed up.

And, wait just a minute--do you hear that?  

Nope, she doesn't either.

Bittersweet

Preface: I have hesitated with posting this one.  I've had it in the queue for about three weeks as I've continued to tweak, delete, rewrite and delete some more.  It just felt preachy, pretentious, brag-y.  However, Avery had such a thoughtful, mature and profound conversation with me the other morning about 2020--speaking all of my own thoughts back to me nearly word for word--and I realized--maybe someone needs to hear this (also, maybe I've done my job with him concerning 2020 after all!).  He shared with me that while multitudes seem to concentrate on how awful 2020 was, he really wants to remember the good stuff.  He said he's learned a lot and God has opened his eyes and he doesn't want to live in the negative.  Whoa, right? 

I also changed the title to this.  Originally it was entitled, "The Upside of the Downside."  I thought it was a good title, but it sounded, well, Pollyanna-ish at the same time.  After receiving a heartfelt gift from a friend however, and given the toll so many events in 2020 have taken on our hearts, "Bittersweet" just seems more apropos.  Remembering the good in spite of the bad--and recognizing that even in the midst of utter chaos, it's still okay to acknowledge the good.    

(Please bear with any grammatical errors.  I've tried to find all the tenses and change them, but I'm certain I missed at least a few!)

So, here goes.

It’s certainly no exaggeration 2020 was an absolute shitshow. A real dumpster fire of a year.  A dumpster set on fire as it careened downhill during a disastrous flood kind of shitshow.

For so very many people, it was exceedingly worse than for others. For those individuals and families, my heart is continually broken. 

I'm not even talking just politics and Covid; there were hurricanes literally on top of hurricanes, wildfires, deaths of celebrated athletes and celebrities--deaths of beloved family members--the stock market crash, shocking worldwide events--the list could easily go on.  Oh, and let's not forget the murder hornets!

Shawn and I rung in 2020 in the ER when I had a heart attack, then life as we personally knew it in February came to a screeching halt in March, as it did for the majority of the entire world, when Covid became a scary reality.  The original projection of only two weeks to 'flatten the curve' turned into nine incredibly long months, and the timeline continues to be in a constant state of flux.  At the time, I thought to myself not much would change for us--we're a homeschool family, after all!  And then--everything and anything changed.  One week we were at co-op; the next week, co-op was officially canceled for the remainder of our school year. Just as happened for kids around the globe, our kids didn’t get to say goodbye to tutors and friends, there wasn’t any closure for them (or us parents). We--co-op parents--scrambled to master apps like Marco Polo and Zoom, hoping to give our kids any sort of contact with each other, clinging to any semblance of normal for them, even holding socially distant playdates in our driveways.  The teachers from Avery's independent co-op finished classes through Zoom, but there still wasn't any tangible sort of school-year ending for the kids (even homeschooled kids still expect end of the year parties!).  On a high note, while social media and the news overflowed with those lamenting missed vacations, special events and various parties, Avery was able to have his first ever (and autism-social anxiety-sensory friendly) birthday 'party' this year, thanks to a few socially distant driveway visits from friend!  Nearly all of our own specialist appointments transitioned to telehealth (yay for not having to drive into the city!), the boys’ various therapies were deemed nonessential (best to not get me started on that one) and church moved to our living room, live streamed from YouTube.  Extracurricular activities were discontinued, and as masks became mandatory, even just going to the grocery store became dangerous. We could no longer eat in restaurants, and ridiculously long drive thru lines are now a sign of the times.  Having misunderstood the Stay at Home orders, Avery became anxious about playing outside in our own yard, fearing he would be arrested.  His anxiety skyrockets each time I have to go to the hospital or the doctor, more so than it typically would, and he's filled with dread over the environments and people Shawn and Noah are exposed to through work and errand running.  No longer able to foray through Target, play in parks, peruse the library stacks, attend our co-ops, and visit museums and with friends, we struggled with how to fill our days.  "What to do over Easter break," became, "What to do with all of our free time at home for the next nine months."  I’ll be the first to have some strong words with anyone judging another mama for allowing “too much” screen time. We were in survival mode, y’all.  Oh wait--we still are!  Whoops.   

My introverted self became perilously apathetic while my extroverted children downright withered to their cores. My own already fragile grief and depression worsened even further.  I burrowed deeper into my hole, nearly shutting down--and wishing I could.  While the lockdown was exactly what my damaged mental health craved, it dangerously conflicted with what I really needed, with what was truly best for me. 

But this isn't at all how I want my kids to remember 2020!  They will no doubt look back and remember this year as a difficult one which certainly tested us.  They will most likely tell their own children tales of the TP Shortage of 2020.  I hope they will also tell stories about their mom dressing concrete animals up in masks, Halloween costumes, Christmas displays, and different arrangements around the front yard.  But here's what I want my kids to really remember--we persevered.  In spite of everything that happened, and is still happening, we have not thrown our hands up and just quit (even when I've wanted to).  

We are surviving. 

As it happens, we aren’t just surviving, we’ve thriving--I mean, we're doing okay. 

In many ways, we're better off than we were in February. 

Though many days it feels like an uphill climb, we're still actively forging that climb.

We are one of the fortunate--blessed--families who are making it through this.  We’ve been reminded of what—and even more paramount, Who (and who)—is important.  With the majority of our lives on hold, we haven't had to hurry or rush; we've been able to really slow down and take stock of everything, and everyone, around us.  We’ve able to spend more time together as a full family and as a result, we’ve grown closer.  We’ve healed in many ways, growing individually and as a family unit.  We’ve been able to pour into each other.  We have learned new things (this is where I'm supposed to brag about a new hobby developed, but here's the honest truth--there's not even an old hobby, although we are all--Shawn included--trying our hands at knitting, perhaps in vain, in order to help both littles learn!), cultivating little projects here and there.  Our learning surpassed the concrete, as we've all had too much time to think, journal, pray and talk with each other. I’ve clung to gratitude and hope, desperate to find my joy again.  I'm still not okay by a long shot, but I'm getting there.  Much to my delight, I've watched as friends have added to their families.  With a grateful nod to social media, I've been able to share in joys across the country (that said, I've also been able to comfort friends in their grief and sadness).  I've read countless stories of people making the best of postponed weddings and canceled receptions, stories about new non-profits--and just plain old individuals striking out on their own--popping up to fill the needs of others, stories about anonymous benefactors who just want others to be okay.  Look for the helpers.  Shawn’s work from home schedule has given him valuable time, sweet moments, and special memories with the boys, many of which he would not have had if working full time in the office.   Even considering 2020's many bumps, we did successfully finish last school year and excitedly begin this year; and though it seemed unlikely, we were able to resume our co-op days in person!  Noah has decided to start cooking twice a week, Avery is working on gaining independence around the neighborhood, while Ezra learned how to ride a bike.  Particularly on the hard days, we’ve pushed ourselves to find the humor and the good.  We’ve coined our own phrases, shouting things like “Mask up, Buttercup!” as we exit our car, even while Ezra bemoans how much he hates the "nonavirus".  Avery's specialists have all finally 'met' Elijah, and all the cats have made appearances in various appointments and classes as well.  We've tried to spread fun and laughter by dressing up and arranging my lawn statues in the front yard, putting our Christmas lights up early, writing notes to friends and neighbors and even strangers, and writing chalk messages in the driveway.  We've done more for others because we can.  We are still attempting to be the good.

Bear in mind we are still very firmly and extremely far out, waaaaaaayyyy out, in Left Field, but it's our Left Field.  It's right where we belong.

So yeah, 2020 has been a mess, but man, we’re coming out of this, and we’re going to be just fine. 

However, just in 2021 gets any ideas, here's a reminder....

Defeated

It's been a Monday today--a full-on autism kind of Monday--but I don't want to just sit here and whine.  I want my genuine gratitude to come through my writing, while at the same time successfully relating my entire thinking process in addition to the autism experience.  I strive for constructive outcomes to my blogs (most of the time), but you need to understand my Point A -----> Point C road trip. 

Yes, it was a full-on autism kind of Monday--all before 9 am.  Before I'd showered, before I had my tea, before my eyes were fully open and my brain was thoroughly ready to begin working (let's be honest... is it ever, though?), before I could process a single word being said to me, before before before.  To digress for a moment, even as I write "it's been a Monday," this really could be, and typically is, any and every day for us.  It's never relegated to just Mondays.  In fact, we'll most likely repeat the majority of this tomorrow!  Yeehaw.

One child was throwing some major attitude my way.  Recently, he's been pushing boundaries more; what he thinks is funny and fun, often is straight up disrespectful and rude.  We've always given our kids leeway when it comes to our relationships with them, but this is more than leeway.  It's hold onto your hats we're skidding into the preteens way.  I'm calling him on his behavior, and I'm being harsher than I typically would.  I want to stop this sort of thing before it truly gets off the ground, you know?  He was also wound tighter than a spring, despite having had his meds, and that takes a toll on everyone in the house.

Ezra was just having a plain old rough day.  He is by far my "most" autistic, if that makes sense.  I'm not entirely certain what happened, but it began when I told him he would need proper clothing in order to go out to the store with me--so it most likely had something to do with learning he needed to put pants on (Frankly, if we hadn't just run out of milk, I would've called it and just stayed home.  My kid just really needed a break).  Ezra hates--HATES--clothing (many of you already know, naked is the norm!).  Because it was so cold this morning, I explained if he wanted to wear short sleeves, he would need his heavy coat; if he wanted his lighter "most comfiest coat," as he refers to it, he would need long sleeves.  I have to continually remind myself, he is not giving me a hard time, he is having an incredibly hard time.  I tried redirection, I tried positive re-phrasing, I tried our anxiety/calming techniques, I tried just sitting with him until he would allow me to hold him.  I tried everything in my little bag of tricks, using my most upbeat voice (which I even despise!), even though I wasn't feeling it at all.  

With regard to the preceding matters, it is emotionally fatiguing to watch your kids flounder--even when, especially when, they're making every effort.  Especially when their brain gets in the way of every effort.  As taxing as it is for me, I know it's more so for them.  But as their mama--it's freaking heartbreaking.  

As if the emotional heaviness of all of the above wasn't enough, we were scheduled to get back on track with our school year, and head back to co-op tomorrow.  Truthfully, we simply just were not ready.  We've had a five-week break and oh my gosh, do we need to be back on schedule and routine and back into life--but good grief, thinking about everything that needed doing to have us ready sent my brain right into an anxiety-laden spiral.  Yes, I've known about tomorrow for the past five weeks, but good grief, these past five weeks have been filled with so much, it really just kind of slipped away from me. 

I was just feeling utterly defeated--deflated--so when Ezra retreated to his room, I retreated to my closet for a quick cry.  It was completely warranted.  Even as I pushed forward with all my autism tactics with Ezra, I kept up those same tactics with my own inner thoughts.  I continued making efforts to corral my gratitude and maintain a positive attitude, all while just wanting to toss in the towel.  What my kids don't understand--and I can't quite expect them to understand--is when they've had a day, it means Mama has had a day as well.  As much as they need a break, so do I.  As much as they need space, I do also.  So frequently, as the day wears on, it wears on me.  

So, here's what happened...

My child with the attitude apologized on his own, and I recognized (and acknowledged) a genuine effort to improve.  Ezra and I finally agreed on clothing and we made it through the store, his little hand clinging to to mine the entire time.  He stopped shutting down and began perking up.  We even had an OHMYGOSH THAT REALLY JUST HAPPENED moment while watching tv: there was a a shuttle launch on the show and as they counted down, Ezra began to count by twos.  It was pretty exciting and earth shattering, and all kids need encouraging, but in the autism world you learn to not react, or at least keep it to an amazingly low, dull, nonchalant roar.  Putting him to bed tonight, I told him I enjoyed our time just the two of us at the store and he replied, "I love you too, Mama."  Music, sweet music.  At lunch time, we received notice that our return to co-op has been delayed until next week.  That's another week to prepare ourselves (*ahem*, myself), clean up the office and classroom, ease back into routine and start back with the easier things.  To round things out, Noah received the full time position he's been coveting at work! 

Tonight, I'm filled with gratitude for co-op community leaders who are full of wisdom and obedience.  I'm encouraged by the progress Ezra made today, even when it felt like two steps forward, five steps back.  I'm relieved my preteen (still?) responds to correction from me and apologizes with heartfelt regret.  I feel indebted to the many specialists we have who are guiding us and teaching me.  Most importantly, tucking my kids in tonight, telling them I'm glad we had a good day today (as opposed to our standard, "Tomorrow's another day!"), I'm reminded once again how absolutely providential it is I get to be Mama.

Be all of that as it may, I'm ending the day still feeling absolutely defeated, but furthermore, immensely and wholly grateful.

What's WRONG with him?

Aside from the jokes we make within our family as coping mechanisms, any form of "What's WRONG with him/her?" causes me to cringe.  There's a strong possibility it even induces visible smoke to flow from my ears as my face turns tomato-red.  There's also a high probability I may or may not (have) use(d) many tactless comebacks for nosey strangers who ask such questions.  He has autism.  What's wrong with you?  Hey, they're the ones who ask.

It's been several years, yet there's an old scenario which still plays over and over in my head: A family member who was visiting with us loudly asked Shawn that very question, referring to another child at church, within earshot of the child's mom (and many others).  At the time, Shawn was shocked into silence.  We were absolutely mortified.  For weeks afterward I guiltily contemplated how to handle it with the other mom, finally settling on letting it go and hoping maybe the mom didn't hear after all.  I think it still takes up space in my brain because I kick myself for not dealing with our family member right then and there, and because I know how that particular question makes me feel.  We did tackle it later that day with our family member, carefully explaining all of the following...

Please, for the ever-loving love, don't ever ask a parent, caregiver, anyone else related to caring for the child, any family member--and especially not the child--what is wrong with the child.  There are countlessly better ways to handle what can be such a sensitive topic.  I learned much of this while still in college, working as a child advocate and in-home educator for children with special needs.  The rest of it, I've picked up over the years mom to my own kids with special needs.  Yes, God does indeed have a sense of humor!  Also, perhaps most importantly, please bear in mind there is nothing wrong with the child.  I personally hate (yep, that's a strong word for a strong feeling) the idea of allowing my kids to believe they are sick or there is something wrong with them.  Neither are they disabled.  I also hate the idea of the general public mistakenly believing this about my kids or anyone else's.  Their brains simply (well, complexly) work differently.  I appreciate this is a delicate matter for many, and respectfully understand other parents feel differently than I do.

One caveat (I'm sure I'll think of others later, so just hang on to that thought)--before you venture into any sort of conversation concerning another parent's child, please please PLEASE be absolutely certain the parent/other person is on the same page as you, i.e., fully acknowledging (the need for) her child's diagnoses.  I'll never forget when a friend asked me if Noah's doctor would consider increasing his meds.  I was so confused!  What doctor??  And even more--what meds?!?!!?  

Begin the chat by asking the parent to tell you about her child.  Most of us are willing to help educate others and provide examples of various diagnoses, behaviors, strategies, therapies, specialists, and so on.  And like most parents, we typically enjoy talking about our kids!  One of my good friends asks questions, admitting she knew next to nothing about any of it before meeting us.  Honestly?  It's one of my favorite things about her.  A good method to further develop the conversation is to ask specifically about her child's diagnoses.  Both of these are excellent ways to learn not only about the child, but about the parent.  A parent's passion for her child comes across as she talks about him!  Ask about our experiences, listening with your heart.  Remember, you want an open, friendly, genuine heart to heart, not an inquisition.  Please also bear in mind we are usually not looking for advice or your cousin's uncle's goldfish's experience.  We just want someone who will listen and wants to learn. 

Don't be afraid to ask the child either (again, keeping in mind only if the child is on the same page as you--and you have permission from the parents).  Most of us parents make efforts to fully educate our children so they understand what's going on inside their brains.  My own kids can answer questions about autism, ADHD, SPD, anxiety, therapies, meds and specialists in general, as well as how they all pertain specifically to them (my personal favorite is Ezra explaining perseveration... hehehe).  

Consideration and compassion really are key.  If it's something you wouldn't want said to you or to your child or about you or your child--it's just best to not say it yourself, you know? 

Team Med

 Ten years ago I was firmly planted in Team No Meds.  I wasn't willing to even consider such a notion for Noah.  In fact, before we began the diagnostic process, my mind was already made up; and if we weren't going to medicate him, why would we bother having him properly diagnosed? 

Oh my goodness, for such an educated person and mom-as-advocate, I sure was downright ignorant.  

And--ohhhhh how I stood in judgment of parents who did choose meds for their kids.  I remember at one well-check, our pediatrician's nurse told me all five of her kids were on meds and how much simpler it made things.  "Sure, for YOU," I thought.  High and mighty as I was, I thought parents who chose meds were simply incapable of being well, capable parents.  Those parents just want compliant, controllable kids--right?

I also knew the dangers of the side effects.  I absolutely hate, HATE knowing my kids have to choose between growing well or not having their active little neurons bounce around the insides of their brains.  We've learned a lot over the years, trying to work with (against) their suppressed appetites, but it's still a sacrifice to their growth.  A necessary evil.

It was actually Noah's fifth grade teacher--mid diagnosis, having returned Noah to public school from homeschooling mid-year and in the middle of fighting the school for at least a 504--who had the talk with me.  She watched him struggle and enlightened me.  Her name was Mrs Love, and she was absolutely the best thing to happen for Noah and the sunlight in a shit situation.  She heavily advocated for Noah, doing everything within her power to help him.  

So, we (I) agreed to try meds.  It was at least a year of trial and error which included finding a new psychiatrist who finally listened to us, but we hit on the correct meds and the best doses.  

Watching my kid blossom after that, I didn't walk, I ran full sprint to join Team Med.  Watching him thrive and experience life--that was just everything and more.  Honestly, though?  I've learned from it, but I'm still wrestling with guilt because I waited so long to help Noah.

That experience made things quite straightforward when Avery's turn came around.  Thanks to our experiences with Noah, we not only immediately chose meds for Avery, but we also knew where to begin with the particular meds and doses.  

And now we're here with Ezra.  Again, thanks to his older brothers, we have a starting point.  Diagnoses secured, meds prescribed.  He can't learn what I'm trying to teach him if his poor little brain is ping-ponging around inside his skull.

I'll say this again to you, dear readers: If you've never had to watch your child struggle, I genuinely hope you never do.  It is painful in every sense of the word.  I'll also say this: It was wrong of me to judge other parents, and I hope you take my lesson into account as you watch other parents.  

Today was Ezra's first full day on meds.  I had an actual give-and-take conversation with my 5 1/2 year old for the first time ever (it was still about his topic of choice, but I'm taking what I'm getting right now!).  I watched him happily play with his Legos, choosing those over the mind-numbing tablet we typically rely on (surprisingly participating in give-and-take Lego play with Avery for a few minutes).  He sat through an entire game of Go Fish, even calmly attending as I explained the rules to him.  

It was an incredibly emotional morning.  It feels so amazingly great to be able to watch my kids succeed.

I fully understand meds still aren't for everyone.  It is an extremely personal choice.  But over here in Left Field?  We play for Team Med.