Radio Silence

I have some startling news for you...  Well, it may not be news to some of you, but here goes:

A person not returning your text, phone call, social media message, email or even your letter sent by carrier pigeon...  Isn't about you.  It's about that person.

Wait.  Hold up.  What?  

Yep.  It has nothing to do with you!  You are now free to relax and go about your business!

I can't believe I even have to write about this.

I feel the need to explain this concept because it recently became an issue.  I'm seldom this harsh with my posts, but the point needs to be made.  This may be a bit of a rant, but also apparently a lesson which should be taught.

Most of my friends understand I am busy.  They understand I have two children whom I homeschool.  These two children also have autism and a variety of other needs, all requiring multiple therapies, several of which are an hour's drive away.  I make that drive several times a week.  Most of my friends also understand this time of year is difficult for me due to grief and now, missing my oldest.  What I haven't shared publicly (until now) is my health has taken another unexpected turn.  I am not feeling well and I am just plain emotionally, physically and spiritually drained.  Right now, just breathing and walking around my house are taking more effort than they should.  I'm doing my best to compartmentalize this year in order to concentrate on my family.  I am trying my best, and mostly succeeding, to be present for them (instead, I'm over here fuming over this entire matter which should be a non-issue).  As you can see, my plate is quite full.  So please forgive me when it takes a few days to reply or when I don't reply at all.  Sometimes I just don't have the emotional energy to do so.  I have to pick and choose what receives the energy I do have, and most often, the recipients are my immediate family.  It's called prioritizing.  Sometimes, because I'm an adult, I recognize I don't have anything nice to say, so I refrain from replying to those particular texts and emails.  And yep, I'm human, so sometimes I just forget!  So yes, I just might be posting to social media even though I'm not replying to various forms of communication.  Why?  Because social media often does not require the headspace that responding does.  And quite frankly, if I want to take out a space in the newspaper, charter an airplane to write a message in the sky or rent a billboard all while not responding to communications--I can do that as well!  It's really none of your business.  Why?  You do not own my time and it is not my job to feed needy, fragile egos.  I do not owe you, or anyone else, a thing.  This is my life and I'm the one who decides how I live it.  

When a friend of mine is slow to respond or doesn't respond at all, I know it's not personal.  We are all living in a world of massive overwhelm right now and I'm okay with my attempts at communication being delayed or even disregarded.  A few of us exchange memes back and forth, understanding life is just too much most days.  We check in, we send jokes, we understand the other person most likely won't be able to respond--and as adults, we're okay with it.  We expect nothing (and certainly do not demand) from one another.  We love each other through life, accepting each other where we are, never attempting to force communication--and we absolutely know to not ever take radio silence personally.  I know my friends have lives, families, jobs and so many other responsibilities and obligations.  I also realize there are things I don't know about my friends, things which might delay a reply.   I understand that sometimes we, as humans, just need to shut down.  My friends just might be prioritizing.  I don't allow my feelings to get hurt--this is an active choice I make, but kind of feels like a no-brainer.  I do not jump to conclusions, I do not accuse my friends of things I know aren't true, I don't take to social media to complain, and, key point here, I know it's.  Not.  About.  Me.  In fact, I typically wonder if everything is okay, especially if such radio silence is unusual for my friend.  I might even reach out again a few days later to check in.  If I absolutely need a response, I'll circle back to double check if my friend even received my text.  The last thing I'm going to do is make my friend's lack of response about myself.

So, why I am explaining a concept most people understand?

Last week there were several texts I did not return, but I did post to social media.  Radio silence.  I did not have the capacity required to even reply "Thank you," but social media was there providing a good distraction. 

And someone took issue with it.

Rather than come directly to me to with her issue (Matthew 18:15-17), this person made a very snarky, very passive aggressive post to social media about it.  This person made an active decision to make it about her.  Before you accuse me of doing the same with this post, I did go directly to her and was summarily dismissed.  With two short sentences, she continued to make it about herself, then ignored any further communication from me.  I suppose she might've thought she was turning the tables, so to speak.  Or perhaps she's actually embarrassed by her behavior.  Who knows?  Who cares?  Nothing ruins good friendships like behavior like this.  Anyway, we're adults, so I handled it like an adult.  Speaking in not-so-hypotheticals, I named the above reasons in an effort to help this person understand where someone not responding to texts but posting to social media may be coming from.  I also spoke of the need for compassion, grace, empathy and understanding, and reminded her of Matthew 18.  Courtesy and respect go a long way.  I did not receive an apology.  What I did receive was the equivalent of a spoiled 5 year old stomping her feet while pitching a temper tantrum and screaming "I NEED ATTENTION!"

Folks, I just don't have the time, patience and energy for this level of immaturity and disrespect.  I really don't.  Grow up.  I don't know if it's age (I'm too old for this shit and life is too short), that I value myself more than I used to, or growing up with a mother with Narcissistic Personality Disorder (among others), but my tolerance for bullshit behavior is much lower than it used to be.  I've spent the past few days trying to move past this, but I'll admit I'm having some difficulty with it.  I'm extremely frustrated and upset with this presumptuous and audacious behavior.  It's awfully sad I have to discuss this at all.

I've said it a hundred times already, I'll say it thousands more:  We never know the battles another person is fighting, and assuming we do and believing we should take precedent in another person's life quickly leads down a slippery slope (to say the least).  Not just this time of year, but all year long, please remember everyone deserves grace and understanding.  Those go much further than an egocentric view of the world.

I Need a Silent Night

Amy Grant and Michael W. Smith are my two favorite Christian artists.  They have unwittingly written the soundtrack to my life.  At every stage, there's always been a poignant song which has hit home.

As a mom, two of Amy Grant's Christmas songs never fail to bring on the tears.  Breath of Heaven is one, I Need a Silent Night is the other:

"I need a silent night, a holy night

To hear an angel voice through the chaos and the noise

I need a midnight clear, a little peace right here

To end this crazy day with a silent night

What was it like back there in Bethlehem

With peace on earth, good will toward men?

Every shepherd's out in the field

Keeping watch over their flock by night

And the glory of the Lord shone around them

And they were so afraid

And the angels said fear not for behold

I bring you good news of a great joy that shall be for all people

For unto you is born this day a Savior, who is Christ the Lord

And his name shall be called Wonderful Counselor, Prince of Peace"

This song especially makes me realize the things--which aren't really things at all--I'm missing in my life.

It's no secret the past three years have been really difficult for me.  One of Amy Grant's albums in particular has been the accompaniment music to my grief.  I miss my best friend, I miss my sister--I desperately miss what might have been with both of them.  What should have been.

 I'm not over it, I'm still searching for comfort and much-needed solace.  I'm begging for a little peace right here.  PLEASE.  I need to hear an angel voice through all of this fucking chaos and noise.  I want to believe again that Abba is still good, even if not (Daniel 3:18).  I want my faith in humanity restored.  I want my life back to the way it was.  I want to laugh and smile and feel that genuine contentment I had.  I just want normal again.  I'm tired of learning lessons, I'm tired of--I'm just plain tired.  Christmas only makes grief that much more profound--the empty chair at the table, the laugh that is missing, the silence which becomes deafening.  Most days I can stuff the pain down, I can keep it at bay, I try to ignore it, I try to go on about my ways pretending that shadow isn't hanging over my shoulder.  However, even with the resounding message of hope, the holidays make it nearly impossible to ignore that looming pall.

Today, it's been three years without my best friend.  Three fucking years.  I still miss her as much today as I did those first weeks, as the shock wore off and reality sank in.  There's still an ache deep in my gut.  A feeling of utter anguish, with peace and comfort just out of my grasp. 

The funny thing is, I know Angie would shake her head at me for carrying on this way.  She'd be upset with me for my inability to move forward.  My grief would absolutely earn me a stern lecture from her!  When her oldest daughter died, Angie had these prophetic words for me, "I miss her so bad, but I know she's in heaven and I would never take that away from her."  I remember the look in my friend's eyes, her smile when she said that.  The moment we shared was tragic, wistful and oddly amazing at the same time.  I had no words were for her, but words were not what she needed.  Although neither of us knew it then, Angie was telling me how she wanted to be grieved.  I would never take my friend away from the beauty she gets to live with now, but there are so many things I want to tell her and there are still days I deeply want her back.  The stupid fucking god-awful irony of grief is quite often, the person you need to help you through the pain is the person you are grieving.  I need Angie to tell me how to do this.  I know she would want me to celebrate her life.  I also know the best way to do so is to stop mourning her so much, concentrate on my family and do for others.  That's what she would want.

At a time in my life when I no longer wanted to believe in God and I was so very angry at Him, when I lost faith in myself, no longer wanted to live and was making really stupid choices, when my marriage was failing and I knew I would lose my only child, Angie became a lifeline for me.  Complete strangers when we met, she immediately recognized my need for unconditional love and acceptance, my need for hope, my desperate search for belonging.  At yet another time when I needed hope, peace and the voices of angels amid the chaos and noise in my own head, Angie stepped in and stepped up.  

Easing me into a comfort zone, earning my trust, she first invited me to her home for what her church called "small group," a Bible study of sorts, but more importantly, a gathering of friends who became family.  Then she invited me to her church.  It grew from there.  I grew from there.  My family grew from there.  My marriage repaired itself, my mental health restored, my relationship with Abba healed.  Even better, I healed.  I no longer felt the daily need to escape, the daily desire to just check out.  

Angie was a gift.  Even when her own family often went without, she made sure the neighborhood kids did not.  She made sure those kids felt loved, she made sure they knew they had a family, she made sure they had a home to go to when they needed to escape their own chaos and noise.  Angie had the biggest heart.  This is how I choose to remember her.  The world is so much better for having had her light shine in it, and certainly at a deficit without her any longer.  

This is my request for today:  Be Angie to someone in need.  Carry on her legacy.  Help someone fight through their fear.  Help someone make it through another day, and then another, and another.  Be the calm in their storm.  Give them the anchor they need.  Hold the door open for someone.  Make a meal for a friend and leave it on their porch.  Treat a stranger to a meal or coffee. Tuck a note for a tired mama in the diaper aisle.  Hide a $20 with a Christmas turkey or under the lid of a can of formula.  Hand out flowers to strangers.  Hug someone who needs it.  Compliment a stranger.  Smile and ask how someone else's day is going.  Call a friend you haven't spoken with in a while.  Encourage someone.  Listen well.  Help someone find the peace they need, be that angel voice, help someone have that silent night we are all so desperately in need of.  Be someone's lifeline.  Lead someone to hope.

It costs nothing to be kind, and often takes very little of your time.  

Most importantly: Please, love big, love hard and love well.  

The world needs more Angies. 

Santa Claus and Toothpaste Words

Yesterday was a day here in our household.  

An hour-long tantrum was had by one of our children over his schoolwork.  We'd given him some extra chores for lying to us and mistreating us, and that only fueled his fire.

Capping off his tantrum, he screamed, "I KNOW YOU AND DAD ARE SANTA AND THE ELF AND I HATE YOU!"  A snide smirk, an absolutely hateful look in his eyes and a just plain nasty tone of voice accompanied these words, and he was trying to be loud enough for his brother to hear in the basement.  Judging by his tone and the look on his face, he did this to intentionally hurt me, knowing how deeply it would cut.  Even worse, he really seemed to want to hurt his brother.  The entire matter broke my heart.  In the words of our OTs and ABA therapists, I'm having a lot of big feelings--anger, shock, disappointment, frustration and the intense loss of my child's childhood, to name a few.  Even trying to write about it now, fresh tears are clouding my vision.

Important backstory so you are able to understand why this is such a profound wound: I LOVE Christmas.  As a 45 year old woman, I still want to believe (I'll never forget the Christmas morning a few years ago when all of the "sleigh runway" luminaries in our driveway were knocked over as if by the SWOOSH of a sleigh.  I remember jumping up and down while clapping my hands, grinning like a fool, thinking, "SANTA?!?!?!")!  By the time I figured things out when I was a child, my sister had two littles; I never wanted the magic to end, so I didn't say a word.  My love language is gift giving, which puts Christmas right up my alley.  I love the music, the memories (I was 35 weeks pregnant with Noah our first Christmas as husband and wife, and I listened to Amy Grant's song Breath of Heaven on repeat.  I was so scared and so excited and that song just spoke to me--it still does, but for different reasons now), the traditions, the decorations, the laughter and smiles and everything else about this entire season of HOPE.  I love doing everything I can to make sure Christmas happens for those who may not otherwise have it--I LIVE to play Santa (I don't even mind that he gets all the credit for our hard work), and as tired as I am of the Elf,  I love seeing my kids' faces light up when he returns, and the treasure hunt for him each morning.  As much as I dread having to reply every night to the many Santa letters my kids put in the Santa mailbox each day, I know I will miss this terribly when it's all over.  While I still have these moments with my kids, I'm doing my very best to soak them up.  I love the warmth of the fireplace, the cozy tree lights and allllllll the gaudy, tacky decorations my kids choose.  I love the daily advent readings with my kids, and on Christmas Eve, listening to my grandmother read The Night Before Christmas and the Christmas story from the Bible on a cassette tape my husband lovingly restored for me (she first recorded it when I was just a few days old).  Christmas is thirty days of "me time" while doing for others.  I nearly ruined the past two Christmases with my intense grief, so this year I'm determined to be okay because my kids need this, especially with Noah missing.  This is the time of year when every shitty thing can be brushed aside as we usher in another year of hope, symbolized by a tiny little baby born to humble circumstances, yet destined for greatness.  Even through all the tears I cry throughout all of these holiday festivities (I've always been a Christmas cryer though--happy, sad, reflective--those tears are going to come) and the heavy grief I still carry physically, as well as in my heart and soul, Christmas is still a time of pure joy and excitement for me.  Christmas is a time of restoration for my soul, my heart and my body.

Okay, back to the actual point of my story.

At the end of Avery's accusation, and before he could say anything else, I owned our Santa and Elf roles quickly, for Ezra's sake and hoping to avoid anymore screamed exclamations.  When Shawn and I talked about it later, he said he was going to try to play it off, but it all happened so quickly, he couldn't interject in time.  I just did not want Ezra to come upstairs in the heat of the moment and overhear any of it.  Immediately, I was angry, hurt and crying.  I could not understand why my child chose this way to hurt me so much, nor could I understand why he would ruin the magic for himself in such a tremendous way.  I understood even less why he felt the need to try to destroy the wonder of Christmas for his youngest brother.  I can be a bit of a drama queen at times, but when I say this has devastated me, I'm not exaggerating in the least.

When Noah was this child's age, Shawn and I talked to him about Santa, mainly due to fear he'd accidentally blurt something out in front of Avery (because autism, yo)--and, as I learned last night, Noah and I have very different memories of how it happened!  I remember it as a whole ordeal my best friend had to talk me through, as the idea of my child no longer believing in Santa absolutely shattered me:  How to tell him without crushing his spirit, enlisting him as Santa's helper, explaining why his dad and I chose to do the Santa 'thing,' as well as reminding him of the origin of Saint Nicholas, and connecting the love of Jesus to all of it.  Noah took to his new role, seemed to enjoy being in on the secret and even helped with the Elf once he arrived.  And please don't allow Noah to tell you otherwise--he loves giving gifts every year just as much as I do.  He's even laughed as he told me his goal is to outdo the Santa and parents' gifts (I quote, "I'm going to win Christmas this year!  PBBLLTTT!")!  Avery's declaration feels akin to the death of his childhood, whereas with Noah, it was an opening to a new chapter in his life.

As I relayed Avery's actions to one of my best friends, she replied, "Ohhhh those are toothpaste words.  Once they're out, you can't put them back in."  I'd never heard it put this way before, but that's PRECISELY how it felt (if you'd like to read more about the Toothpaste Words origin, here's the link: https://www.scarymommy.com/toothpaste-lesson-amy-beth-gardner/ ).  I'm quite certain Avery realized how badly he hurt me rather quickly because he did apologize, as well as backpedal, but it really was not a genuine apology, but more of a "Crap, I messed up."  We do teach our children to apologize (and we want them to mean it, so forcing apologies is out of the question), and we lead by example, but we also teach them they don't have to immediately accept the apology if they aren't ready to do so.  Last night, I did just that--I calmly told Avery I was deeply hurt by his words and behavior, so I just wasn't ready to accept his apology.  I explained further, as I knew this was his way of intentionally hurting me.  I did not withhold love, gaslight him, mistreat him or retaliate, nor did we punish him (I stress this point because that was how my mother--still--handles her anger towards me, and anyone else, for that matter).  I simply told him I was extremely upset and unable to accept his apology.

We've known for the past year or so that Avery's time of believing was coming to an end, but I was hopeful it would be an easy, understanding transition.  Given how dedicated Avery has been to believing, I wasn't even sure he'd say it out loud when he figured out the truth.  In past years, he's completely thrown himself into believing the magic, and this year didn't appear any different.  Because Avery believed so hard, Shawn and I threw ourselves into doing everything in our power to keep that magic alive.  I never could have anticipated the anger and spitefulness he exhibited last night.

Shawn and I really tried to be calm about it.  Emotions were already running fairly high and anything short of calm would've been counterproductive.  Knowing we had to protect Ezra's belief, but still address Avery's revelation and behavior, we tread carefully.  We explained why his actions were wrong, and discussed better ways he could have handled it.  As we did with Noah, we approached it from the Santa/Jesus angle, explained our reasons for Santa (wanting our kids to have that magic and hope, because we love them and want Christmas to be a time of fun and wonder). We stressed the importance of continued secrecy for Ezra, then we tried to enlist his help.  We tried to empathize, telling him we understand if he feels lied to, but again, explaining (malicious) lying was not our intent, only to add joy to the season because we love them so much.  Using the "toothpaste words" suggestion, we also talked with Avery about carefully choosing our words, especially in the heat in the moment.  We explained he can never take back the words he said.  Impulsivity and the inability to think ahead are symptoms of not just autism and ADHD, but the age and stage Avery is in right now.  I'm genuinely hoping the toothpaste example put things at the very least, in a partial perspective for him.

I know I need to find a way to move through this.  And I will, but in the meantime, if you need me, I'll be over here trying to cram this toothpaste back in the tube.

Think Before You Speak

 During Avery's ABA session today (Digression: shockingly, Avery's therapist hasn't quit yet! *sarcasm* However, apparently Ezra's new therapist was supposed to start today--which I wouldn't have known had I not emailed the site manager this morning--but she quit yesterday after being hired on Monday.  Why am I not surprised?  I haven't responded to the email because I really have nothing nice to say--a few suggestions, definitely [maybe improve your hiring standards?], but nothing nice), anyway, after working on some math lessons, our case manager remarked to him, "Yeah, you'll never need the math you're learning when you're an adult."  She just might need someone to save her from me.  I sat at my kitchen table fairly stunned by her words, absolutely fuming, unable to step in and correct her because I knew I couldn't respond kindly.  

Later, she wondered out loud who invented kinetic sand, "Like, maybe a glue specialist?"  Uhhhh, perhaps an ENGINEER who used MATH??????

My kid struggles with math enough as it is.  He struggles to like it, he struggles to learn it.  My husband (math nerd) works really hard to make it as fun and interesting as possible.  We know how much Avery loves science, 'useless' facts, and research, so we do our best to approach math from those aspects.  He also loves a good challenge, so Shawn makes huge efforts to devise fun math challenges for Avery.  So, to have a person who specializes in children with autism (although, this applies to typical children as well!) tell my kid he's not going to need this math as an adult sets us back yet again.  She should know better.   This was not up to her to speak over my child's life, and certainly not his future.  

I did use this as a learning opportunity for Avery later.  We talked about using our words wisely and not to discourage others.  We also did our own research and brainstorming, finding all the careers, and even daily life experiences which use math.  Just a few things in which math is applied that immediately came to mind: a cashier or bank teller counting change for a customer (and balancing out the till at the end of a shift), a customer counting out cash to a cashier, understanding a bank loan, and prerequisite/foundational math for any college major involving further math classes (I had to take statistics as a psychology major!).  How many of you love video games?  Whether you realize it or not, you're using math!  Many artists even need to know math!  According to https://www.cuemath.com/learn/math-in-daily-life/, other necessary daily math skills include managing money and being able to budget, calculating time, understanding discounts, exercising and dieting (anyone counting calories out there?) and driving.  https://www.mathunion.org/icmi/role-mathematics-overall-curriculum states "Mathematics is a fundamental part of human thought and logic, and integral to attempts at understanding the world and ourselves. Mathematics provides an effective way of building mental discipline and encourages logical reasoning and mental rigor. In addition, mathematical knowledge plays a crucial role in understanding the contents of other school subjects such as science, social studies, and even music and art."  Mathnasium.com ("Ten Reasons Why Math is Important to Life"),  https://blog.mindresearch.org/blog/why-is-math-so-important and https://edubirdie.com/blog/why-is-math-important list even more reasons from cooking and sewing to critical thinking skills (and, if you know anything about autism, critical thinking skills can be difficult to build, and a reason why we chose ABA is to help us help our kids build those skills!).  There are also many medical reasons a lay person uses daily math, for example, calculating the correct dose of an OTC medicine; diabetics often need to count carbs in order to properly calculate the insulin necessary for their meals.  And let's not forget homeschooling parents, and even parents with children in traditional schools who have to help with math homework (and in some cases even teach it, depending on the child's teacher)!  

I hope you can understand why my brain was on fire over this one.  As one of my close friends said, "Math runs the world."  Whether you liked it or not as a student yourself (I didn't), whether you excelled in it or not (I didn't), math is an everyday fact of life. 

"Mathematics is the queen of science and arithmetic is the queen of mathematics." 

--Carl Friedrich Gauss

When Working With Children, Ask Yourself These Questions First

Our littles began ABA therapy about six months ago.  Their care has been disrupted numerous times due to high turn-over with our RBTs, site directors, BCBAs and FAs, various long-term illnesses from those serving our kids, and an entire month's quarantine when Covid hit our home.  This high turn-over has by far been the most difficult interference.  If there's one (of many) thing(s) you should know about autism, consistency is key.  One site director cheerfully tried to tell me all of these constant changes are a great lesson in ABA in themselves.  I cheerfully replied if she really believes so, she's in the wrong business.  This tired, fed-up mom is D-O-N-E.  I'm no longer pulling punches.  If it's in my head, chances are good it's coming out my mouth.

We are experiencing yet another disturbance to Ezra's services, as his RBT quit last week with only 24 hours notice (I'm learning this is the norm).  This is not the first time, and unfortunately, I doubt it will be the last.  I'm at my wit's end and quite frankly, finding it difficult to not feel angry and even betrayed.  To be fair, this particular RBT was with Ezra from the beginning, and he made amazing progress with her.  But right now, I'm struggling deeply with how she handled her decision and my child's needs.  To say the least, we were caught off guard.  Less than two weeks before she gave her notice, she sat in my kitchen and lied to me about her dedication to my son.  She gave her employer 5 days notice, but she gave the child--MY child--she had formed a bond with only 24 hours.  I understand there are times and reasons a person must move on from a job, but it's the way in which the moving-on has been done each time that has left me feeling less than charitable.  We are the kind of people who become attached easily, especially when someone makes a difference in our children's lives.  I'm just wondering what my children are being taught about these attachments specifically, and about people in general, with the revolving door which has been created by these situations.  I do my best to spin it positively for my kids--"It's time for her to help other children the way she helped us!"  "We were so fortunate to have her while we did!"--and I do my best to keep my opinions between myself and my husband, but kids are smart and pick up on more than we often realize.

My children don't understand the constant flux of strangers passing in and out of our home.  Week to week, things are subject to change and it's confusing for them.  It's downright maddening for me.  We have been subjected to the seeming whims of those who have pledged their commitment to my children without warning or cautions, just up-ended one day to the next.

As their mom, it is my job to advocate for my kids.  Besides Shawn, I am the only one who knows what is best for our children.  We have to anticipate their needs.  We are their voices. We are the only help they have at this moment.  One way in which we advocate for our children is to provide examples for, and teach them how to take over our jobs as their own advocate and voice when they are adults.  I know of many parents who continually bang their heads up against the wall, desperately begging for help for their children.  They are often left with no other choice but to hire lawyers and advocates to battle school systems and insurance companies.  One part of advocating means screening who we allow in our home and in their lives.  A big part of advocating for my kids happened when we began homeschooling.  I could no longer fight the school system; watching our kids blossom with what we're able to provide has been absolutely magnificent.  Another big part of advocating (as well as homeschooling) means actually providing what, and who they need to become the best versions of themselves.  Sometimes I get tired of being warm and welcoming, I am exhausted from having to play nice, but I keep it up because these people provide very necessary services for my children.  Just because I plaster a smile on my face does not I'm weak.  It does not mean I won't hesitate to take the hard road for my children's needs.  And it certainly doesn't mean I'm not wondering, "And how long will you last," with each new person who walks into our home.  This revolving door doesn't help my trust issues.

I've had a lot of time to think since our latest tech gave her notice last week.  I have so many thoughts I want you to know, and questions I want you to consider before you enter into any field working with children.

Please, before you begin working with any child, but specifically kids with special needs, ask yourself if you are worthy of being welcomed into their home and family.  Jobs like this are very personal and relational.  You become part of the family while you are here because that's just how it works best.  Yes, the family and children need the services you are providing, but they also need (and deserve) consistency and dependability.  They deserve someone who will be responsible in every way.  This family will need to be able to rely on you for their child's needs and progress.  You are being given a gift with this job:  Our trust.  Parents of kids with special needs do not trust easily, and it takes a lot for us to allow a person into our children's lives.  Are you worthy of such trust?  

Can you truly commit to the child, to a regular schedule, to the necessary work and continuing education, and if there comes a time you are no longer able to commit, can you give at the very least, the respectful, courteous two weeks notice (also, I don't care who you are, how old you and what your job is, GIVE TWO WEEKS NOTICE at the minimum.  It's just the proper, considerate thing to do)?  When you do leave, will you take the time to help my children understand, or do you plan on only doing what's best and easiest for yourself?  Are you able to tell the parent you are in this for the long haul--and truly mean it?

Are you able to maturely communicate your own needs and plans (far in enough in advance)? Are you able to communicate in person, or via phone when in person isn't possible, not through texts or emails (barring emergencies)?

How do you feel about the monotony of collecting data, daily paperwork and insurance reports?  What about traveling to and from your client's home, the time spent on the road and the mileage on your car?

Do you fully understand what your commitment involves?  You are not a babysitter.  You are here to work.  You are here to make my children work.  You are here to help me make sure they are able to cope within the world--not conform to it--to be able to work within it, because the world certainly isn't going to work with them.  You are here to keep up with energetic 12 yr old and 6 yr old boys.  These are not dogs in need of a 20 minute walk who would probably be okay if you forget or skip a day.  These are children learning to form relationships and how to cope in a world of neurotypicals.  As parents, we rely on you to be here.

Are you able to separate your own bad day, and the child's bad day, from the child and the work session?  Can you continue responding in a positive manner, understanding the child is not giving you a hard time, but instead, is having a hard time?  How are you with temper tantrums and meltdowns--and do you know the difference?  Do you know when to call it a day with work and move on to something else?  Can you be calm enough to give my child a few minutes to collect himself, but strong enough to let him know he is still required to complete his task?  Can you easily adapt to changing moods, changing needs and changing seasons in a child's life on a minute-to-minute basis?  Do you have good people skills? Are you able to offer the flexibility my children need but do not have themselves?  Are you the role model you'd want for your own children?

Do you understand this is a job you take because you love kids and want to help them be the best version of themselves?  It's not a job to cure your boredom, nor pad your wallet (trust me, this job will not pad your wallet).  Another thing to consider: Are you knowledgeable about children in general and their diagnoses specifically?  There is on the job training, but there are things you absolutely need to know before entering into a relationship with these children.  

These questions, and many I haven't put here, are what you should be asking yourself before entering into any kind of job contract involving children.  I'm asking you to do some serious soul-searching.  If you pray, do that as well.  Ask questions--ask your friends, your family, your previous bosses and coworkers, fellow students, your teachers and professors--ask them the hard questions you may not want the answers to because the family who needs you does want, and deserves those answers.  We are asking for honesty, reliability, consistency and trustworthiness.  We are asking you to give our kids the best of yourself, day in and day out, even when you're tired, even on the days you don't think you have anymore to give.  Perhaps especially, on those days you are stretched to your thinnest.

No means no, right?  To some people, yes.  That's enough, it's all they need to hear.  Message received.  For others, it's a line to be crossed or a boundary to be flat out ignored.  It's a challenge, even.

One thing we've tried to raise our children with is "No is a complete sentence."  That's it.  "No."  Full stop.

This is handy for parenting (when it works, sigh) but for me, more importantly, it falls under the incredibly critical life skill for setting boundaries.  My children absolutely must be capable of saying no to friends, family, peers, strangers, and even adults who play large roles in their lives, such as their therapists, other parents within our homeschool community, friends' parents, and those we know from church.  Yes, you read that correctly.  I want my children to have the confidence, and know they have the support to say "No" to adults.  Most crimes committed against (vulnerable) children are committed by an adult they know and trust.  It is important my children know how to self-advocate, so being able to say no and stick to it is high on my list of priorities. 

Knowing how to say no is imperative concerning things which are unhealthy, dangerous, illegal and uncomfortable.  This is crucial when you are at risk of being taken advantage of, overextending yourself and people-pleasing.  It is even essential when you simply do not want to do something.

Digression: We all have things we don't want to do but we must do them anyway.  Sometimes they are scary and uncomfortable, or even feel as though they could be unsafe.  But we must to tackle these tasks for growth, maturity and daily life.  I'm not addressing those responsibilities.  What I'm speaking to here are boundaries one must put in place for an emotionally and physically safe, healthy life.

"No," can also sound like "I don't want to," "Please leave me alone," "I asked you to stop bothering me," "I'm blocking your number/social media privileges," "That makes me uncomfortable," and "That doesn't sound safe."  There are any number of ways to say no, but it still means NO.

You do not owe the other person an explanation, a reason, or elaboration of any kind.  When you are taking care of yourself and your family by using this word, there is no need to feel guilty.  The irony here is how often Avery calls me out on this.  "Mom, you always tell us to stand firm in our no because it's a full sentence, but you just gave that person a laundry list of reasons."  Perhaps this is why it's so important to me for my children to be able to self advocate--because I still have great difficulty with it.

I practice this quite a bit with the littles: Tone of voice (say it nicely yet firm, no need to be rude about it), facial expressions, how to walk away or otherwise end the conversation when No is not accepted, blocking phone numbers, game users, etc.  It's important they understand someone unwilling to accept No as their answer is not being persistent, but is being disrespectful.  They need to be able to recognize coercion, abuse, harassment and other red flags.  

There are any number of reasons why people might violate such boundaries.  Perhaps there is a mental health disorder, or they simply weren't taught respect.

Bear in mind, the opposite is also true: My children are learning to accept no as a complete sentence from others, also.  As respectable boys growing into respectable men, as human beings in general, this matters.  

Would I be teaching this to my children if they did not have autism?  Absolutely.  But, they do have autism, making lessons like this one even more significant.  The world operates differently than they do and they need to be aware of this.  Am I at risk of making my kids cynical and skeptical of the world?  Too late, they already are.  Probably.  But just as with anything in parenthood, it's a balance that must be taught.

Here's a quick lesson for you: If any of my kids tell you no in any way, shape or form, they mean it.  Have the decency to respect them.  

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.

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....