Team Med

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

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

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

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

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

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

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

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

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

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

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

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

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

Life in Left Field

 My blog was born almost eleven years ago when we received Noah's Autism diagnosis.  

Today we received Ezra's diagnoses.

That day, Shawn and I were taking a collective breath in the parking lot after loading our six month old and our newly diagnosed nine year old in the car.  I still remember what we wearing, the chill in the air, the specific color blue of the sky.

We stood behind the car, taking turns staring at the ground, the sky and each other, kicking the bumper, heaving sighs trying to contain sobs--and trying to get ourselves together enough to make the 90 minute drive home.  Covid meant today was a telehealth appointment, so hey, no three hour drive home while trying to digest the day's news.  There's that, right?

Ten years ago, I shouted, "DAMMIT!  They just dumped us way out in left field!"

Noah's diagnosis wasn't necessarily a shock to us, but the diagnostician's treatment of the entire situation was.  They handed us a little packet of information (all of which I could've written for them at that point), helped us make an appointment for six months out and sent us on our way: "Congratulations!  Your kid has Autism!  We'll see you in six months!"  We did not return to them in six months.  We did not return to them at all.  We took our Autism and went elsewhere.

That was it; no supportive care, no interventive therapies, no recommendations: just a diagnosis and we'll see ya later!  At the time, Noah was not considered severe enough for interventions.  We found our own interventions, and made our own path through life with Autism.

We'd been living in left field all along, we just didn't have a name for it until that moment.  

Over the years we've found our groove here in Left Field.  Some days we're groovier than others.  Some days I forget my groove, things feel entirely too fragile and I fear I might break under the weight of all of this.  Some days I'm angry and I shake my fist--not at my children, not at God, but at a painfully slow and broken system, at things beyond my control, at a society which demands I constantly explain and excuse my kids.  Sometimes I scream CAN WE PLEASE JUST HAVE ONE NORMAL DAY--and I remember--this is normal.  It's our normal.  Some days I mourn the 'easier'--different--life I dreamed of for my kids, while other days I'm able to fully celebrate being able to live here at all in Left Field.  Some days I have some really big, hard feelings about it all.  And--other days I recognize this is not the end of things: no diagnosis, no specialist, no stranger gets to write the final word in our history.  My kids are healthy, happy and well loved.  I have a husband who does all of this with me, and some days, for me.  We have the ability to ensure our kids receive all the help they need, and because I'm able to stay home with them, we're able to provide what a traditional school setting cannot: curricula tailored specifically to their needs and one-on-one attention.  We are able to choose specialists who not only see the best in our kids, but work hard to help them.  Most days I completely thoroughly laud every little thing about my kids, and every day, every single day, I glorify the One who made them.  I know they are the way they are because this is how He needs them.

If you've made it through your child's formative years without having to go through any sort of diagnostic process, without having to fight a system which is supposed to be for your child yet is designed against your child, without having to fill your weekly calendar with specialist after specialist--there is no possible way you can comprehend any of what I'm telling you.  You might think you can draw a parallel here or there--but you simply cannot.  And I'm not saying that to be angry or bitter with you--but you are in that population that cannot comprehend a life steeped in special needs.  It's just a simple truth.  When your kids come with 'extras,' you live on an entirely different planet, often even an entirely different solar system.  We speak a different language and walk a different walk (sometimes rather literally).  For this matter--if you haven't gone through this, I pray you won't ever

I love my boys dearly.  I cherish them.  I'm so grateful for them.  They are funny and full of life, they have the most musical giggles, we have plenty of inside jokes--and they've helped shape who I am, and who I need to be.  I wouldn't change our kids at all, for anything.  

But would I change things for them?  In a heartbeat.

Heavy (and The Light)

 Sometimes, life with kids on the spectrum gets heavy.  

Having three of them under one roof gets (insert your own personal choice of adjective here) HEAVY.

Honestly, I try to not think about it too much.  If I think about it too much, it just gets heavier.  

I know--I know--in the grand scheme of things, we're lucky.  Our kids don't risk the chance of dying from autism.  They won't lose a limb, or time out of their lives.  We're lucky our kids are on the mild end of things.  Most likely, with the proper interventions now, our kids will be able to function on their own as adults.  They could attend college and have families if they want.  

But sometimes, it's just. So. Much. When I stop to think about it.  

So I try to not think about it.

But on days like today--I can't help but feel the weight of it all.  

I can't help but hate autism just a little bit.  I can't help but just be sick of all of it and want to scream, shout, yell, cry, throw things and hit things. 

I'm so tired.  That weary kind of tired, not the kind of tired sleep will fix.

It helps to lean on other parents who understand all of this.  

Most of the time the weight turns to tears, but I genuinely hate feeling sorry for myself and my kids, and I don't like how it makes me feel like a victim.  

Also--those floodgates.  Oh, those red hot tears behind those floodgates.  Those angry, anguished, maternal wails.  That painful wailing which rises up from so incredibly deep inside me.  

Today though, I had a much needed reminder of Who is really carrying all of this heavy weight for me.  Who carries it for my kids.  My very HELP.  I was reminded whose Hand is in this, and on them.  

I was reminded of the Light inside the heavy.

He is good.  He. Is. GOOD.  When nothing else feels good--God remains GOOD.  

It is from Him where my peace comes from.  

It is from Him my children, my answered prayers--heavy autism and all--are from.  

I lift up my eyes to the hills—
where does my help come from?
My help comes from the Lord,
the Maker of heaven and earth.

Psalm 121:1–2

Well, At Least There's That

Sometimes I have to find humor where it really isn't. 

Sometimes it's not that I have to do so, it's that I just do. 

Most of the time my humor is self-deprecating and a little defensive.

I recently started seeing a new doctor.  To start things off, she ran a lot of lab work.

This woman is exactly who I've been looking for in a doctor.  Her approach has been a major sigh of relief for myself and Shawn.

The results from the lab work came back... And we're trying to figure out how I'm still standing.  How am I still functioning?  How I am waking up every morning and managing to get through my days?

 It's one of those things where this has been my norm for so long, I really don't know any different.  I don't know I'm supposed to feel better than I do--well, I do know, but I haven't had the energy to advocate for myself, to find better doctors, to scream for the attention my health needs.  The results explain so very much.

*This* is too low, *that* is too high... You get the idea.  The report was four pages of bad news, a sea of alarming red words screaming at us.  I did laugh as I read asterisked notations under many of the tests stating the lab ran them more than once because the results were so off.  Some of them more than twice.

Then, there it was.  Down at the bottom of the last page.  Big bold letters announcing the wonderful news.  My Covid antibody test was negative.

My laughter about the notations turned to cackling, Shawn's chuckling turned to full-on laughter.  I laughed until I had tears streaming down my face and couldn't breathe.

Well, at least there's that.

More than a Mom

When Shawn and Avery arrived home from the grocery store the other night, Avery said he had something to tell me during dinner.

After we sat down to eat and everyone was squared away, Avery filled me in about a mom he saw in the self-checkout line.

She had five small children (Shawn confirmed they were all younger than Avery) she was trying to corral and keep happy while attempting to just purchase her groceries (remember those days, mamas?).

"Mom, you would've had two of those kids on your hips and played with the other three as you scanned her groceries, dried her tears, made her laugh, and given her a mom pin, all while praying with her."

I made an excuse to leave the table for a moment--then had a moment.

With that, Avery saw ME.  Not Mom, not Teacher, Short Order Chef, Chauffeur, not Chore Minder--he just saw ME.  Avery saw me as a human being.

Avery acknowledged my heart, my desires to follow God's path set before me and my ministry.  Avery was able to appreciate I am more than just his mom.

The significance of this goes deeper than what I'm telling you.

As any mom of a child with autism will tell you, it's often difficult for our kiddos to relate to others.  It can be baffling for them to understand the feelings and emotions of other people, considering they are often perplexed by their own.  Most things are black and white, and deeper meanings can be elusive.

My boy sees me.

"This Too Shall Pass"

The other day I saw a meme which first gave me pause, then a great deal of laughter:

"Ohhh, this too shall pass!"
"So does uncontrollable diarrhea, but that doesn't mean it doesn't suck until it does!"

Not only did I laugh, I even passed it around.

It's possible I laughed a little too hard, and a little too long over this.  All the same--I loathe that phrase.  LOATHE.

As a Christian, one hears, "this too shall pass" often (Fun fact: Did you know this phrase actually originated from a Persian fable?).  I grew up hearing it, and over the past 18 months, I've threatened (under my breath, of course) to throat punch the next person who said it to me.

*Please note: I've decided the response from this meme will now be my response.  You've been warned.*

I mean--can we just allow others to feel their feelings completely, wholly, without trying to shut them down with Christian-speak?

Can we agree with the person who dares to say, "This sucks.  I'm sad," or "I really hate this right now"?  Can we be in the moment with our friends, our families, our children, our fellow parishioners and their feelings, rather than shoving them into the future, where we are more comfortable, but they aren't yet ready for?

It boils down to discomfort, doesn't it?

In shutting others down, we are gravely invalidating them.  Think about that for a minute--we are squelching the voice of a fellow human being.  We are robbing them of their power, the only power they might feel they have in a specific situation.  Without so many words, we are saying what they're going through, what they are feeling isn't important.

This is how children learn to be silent.  This is how children grow into adults who don't know how to work through their emotions, who don't know they are important, and who don't know it's okay to feel how one feels.  This is how we shut others down before they can even begin.  It's how we offend others, lose friends, and cause rifts within the church, the workplace and other communities.

I'm sure most people think they mean well.  In their minds, it is akin to a pat on the shoulder, a way to comfort another person, to tell them no matter how bad it is now, it's not going to last (sooooo... perhaps just say that instead???).

I think sometimes--perhaps even most of the time--it's said without even thinking, it's an automatic reaction.  I wonder if sometimes it's used even in a flippant way, though.  They don't want to take the time to listen, so they throw out an easy catchphrase.

It just rings with insincerity. 

Let's make a promise to each other: Let's begin with sincere hearts for one another.  Let's sit down and make time for intentional conversation.  Let's check in, and check on, each other.  Let's promise to be more purposeful with our actions and our words.

Even if it's about uncontrollable diarrhea.

Faith Like My Boy

When I became a mom, I envisioned myself as the teacher in our relationships.  I would be the mom to impart all the knowledge, and then some, upon my children!  I imagined myself as the wise adult, helping my children grasp everything they would need to know for adulthood.

Good grief, how wrong I was!

I quickly learned I'm not always the teacher.

Many, many times, so very often, I am the student and my children are my teachers.

My kids are my mentors, my professors, opening my eyes to things I could never imagine.  Daily, they teach me more than I could ever hope to teach them.  I am but a mere pupil.

I frequently forget important lessons.  Sometimes, there are lessons I haven't learned at all yet.

And God uses my kids in amazing ways to educate me.  

Yesterday, while at the vet for Elijah, I was reassuring Avery.  I told him the doctor would make his duck better and we would all get through this.  My teary boy stopped for a minute, looked me square in the eyes and firmly, confidently replied, "NO, Mom. GOD is going to make Elijah better."

And I have no doubt that God hears Avery's prayers and is already busy answering them.

Oh, to have the kind of faith Avery reminds me to have, time after time after time.  This boy of mine. It's such a privilege, being his mom--as well as his student--getting to raise him, having this front row seat to his life and his love for Jesus.