Nicole K. Twedt

Being Brave When Life Is Hard

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The Rest of the Autism Story

06.12.2017 by Nicole Kristin Twedt //

How do I possibly begin this post, this mini-essay of sorts?  I really don’t know.  But I feel the burn, the excitement rising within me, bringing me life and begging me to write.  It is time.

I know from writing long enough that I should start with a picture, a snapshot in time to pave the way for what I’m about to say.  Yet the only image that comes to mind is that of the mounting pile of laundry of our family of five that’s piled in plastic baskets on the floor in front of the caramel-colored couch in the living room.  Of course, there’s clothes and towels piled over the couch as well.  What we lack for in life, we make up for in laundry.  But that’s not really the point.  It’s not where this story is headed.

I’ve wanted to write this post since Wednesday.  But I didn’t know how to begin.  On one hand, I want to let the world know what God has done and is doing for us and our son, even if it’s in an out-of-sorts kind of way.  I want to shout for joy for what we have been spared because this news is good news and should be proclaimed from the rooftops.  Yet I resist.  It’s been difficult for me to share this part of Steven’s story because it will take our son out of one camp and place him in another, not that he can be sorted.   What’s more, I don’t want to sound relieved by our news, yet I am all the same.  Of course I am.  What parent wouldn’t be?

It shouldn’t be difficult for you to imagine the state I was in last Wednesday morning, ten sharp.  A bundle of nerves I was.  A bundle of nerves doesn’t even begin to describe my anxious state.  Let’s just say I was too jumpy to drink my morning coffee, which was ignored at my feet in a stainless tumbler from Starbucks, the one I chose for myself as a Christmas present a few years ago when Steven was in kindergarten.  It’s built to keep my Tony’s coffee (sorry Starbucks) and Organic Valley vanilla soy creamer piping hot like nobody’s business.  I knocked over the coffee tumbler with my foot twice while I waited for my iPhone to chime the opening verse of the Veronica Mars theme song, which I’m embarrassed to say is my ring tone.  The phone call I was waiting for was from the autism center.  It was supposed to happen four minutes ago.

***

“I’m sorry,” the child psychologist began, “but I found it difficult to put your son into a neat box.”

Of course.  It’s ironic that I’ve  clung to Sally Clarkson and Nathan Clarkson’s book, Different: The Story of an Outside-the-Box Kid and the Mom Who Loved Him over the last few months.  Was the Holy Spirit going before me?

“…difficult to put your son into a neat box.

Not autistic.

…not neurologically different in any way.

Steven doesn’t have ADHD…

…unspecified anxiety disorder.

…possibly sensory processing disorder, but not autism.”

Steven doesn’t have autism.  This is good news.

Yet I feel like a fraud.  For crying-out-loud, I wrote an essay that was published on the Kindred Mom site about our decision to have Steven evaluated and some of what led up to that moment the decision was made.  Also, I feel a little like Julia from Parenthood when she breaks the news to her sister-in-law, Kristina, that her daughter isn’t autistic like Kristina’s son, Max.  Julia is conflicted, grateful, celebratory, guilty, yet relieved all the same, and so am I. We suffer from survivor’s guilt of sorts, Julia and me, because nothing is “wrong” with our children.  Not that autism is “wrong.”  I hope you know what I mean.

It all feels wrong to be rejoicing over the plot twist of Steven’s story.  You see, I’ve had many friends, family and neighbors, even a writer, come out of the woodwork to support me as a parent of a child who was potentially autistic.  Many took time out of their lives to share their stories, comment on my essay, send texts, Facebook messages.  A handful of friends met for coffee or invited me into their homes to build me up, let me vent and share resources that have helped them as they learned to navigate life with autism.  One friend from our old church took time out of her busy work day to meet.  She’s on salary and was willing to work late in order to encourage me during a time during her workday that worked for me.  I don’t even know her well.  Another friend drove over an hour to meet late at night at an Applebee’s between her home and mine.  For reasons like this, It saddens me to leave the autism community.

Leave?  I was never even part of it.

Call me crazy, but at first I was kind of ticked off that Steven isn’t a child with autism.  He has all of these spectrum-y behaviors, yet not enough characteristics across the board to get a diagnosis, to qualify for help.  He is an outside-the-box child, for sure, but socially aware enough to pull himself together in certain situations.  Also, autism is kind of a buzz word right now.  Let me clarify.  There’s much misunderstanding with autism but there’s an emerging understanding as people are becoming more aware of what autism is and what autism isn’t, as it looses it’s stigma.  Can the same be said about anxiety?

My worst fear during all of the waiting time was that I’d find out that nothing was wrong except my parenting or that Steven was just in a really bad mood for the last eight years.  I write this with a smile on my face because I’m being funny.  But if I’m honest, this was my true fear.  And it’s kind of what happened in the end.  Well, not exactly.  Anxiety is nothing to make light of.  I should know, I was the poster child for anxiety.   What’s the saying about the apple and the tree?  Jokes aside, the evaluation experience with Steven is perhaps something we had to go through as a family in order for me to learn that I’m not a lousy parent, none of us are.  I should proclaim this truth every day.  I didn’t even realize that I believed this about myself until I wrote the Kindred Mom essay.  There’s freedom whenever something is spoken aloud or written about.  False beliefs loose their power to make way for truth as it rises to the surface.

Despite my mixed feelings, I can’t ignore the fact that I’m singing songs of thanksgiving, songs of praise. Even now as I type, Bethel Music and Francesca Battistelli’s There’s No Other Name fills the walls of my small family room and kitchen, my own holy ground of sorts.  You need to know that much healing has occurred in my heart during the waiting, even now.  You see, since the beginning of this process I prayed for my son over and over, for his here-and-now and  for his future.  You better believe I did.  But I didn’t pray against autism, not once.  And not just because there isn’t a cure.  I didn’t pray against autism because I can see its beauty.  It takes all kinds of people.  And every single one of them is unique and their lives are worthy and valuable.  And to loosely quote Temple Grandin, “If we didn’t have autism we wouldn’t have the geniuses in Silicon Valley.” Or Microsoft, as my friend B. says.

Let there be no confusion.  This really is the best possible news.  God saw fit to allow Steven to experience these markers of ASD in a way that, with help, should not hinder him in his adolescent years or carry into adulthood.  There is no cure for autism, but in Steven’s story he gets to work through his struggles and come out on the other side.  It’s not supposed to be a life-long struggle.  I cringe as I write this because I don’t even want to know how it sounds to those who have a child on the spectrum.  I don’t want to bring God into this to say he did this or didn’t do this.  All the same, I don’t want to deprive him of glory.  The truth is, in my life, there is no other name worthy of praise.  There is no other name than Jesus.  And for whatever reason he’s once again changing the course that we thought was clearly marked out for us.  He’s done infinitely more for Steven than what I ever dared to ask for.

Still, we have a long road ahead of us.  The road will be long and hard.

But we are ready to run.

 

 

 

 

Categories // Anxiety, Family Tags // parenting, Steven

(Learning to Be) Flexible

02.28.2017 by Nicole Kristin Twedt //

Photo by Hannah Tasker on Unsplash

When Emily started kindergarten, all those years ago, this rule-following mom read the school handbook from cover to cover.  Our school administrators (whom I love dearly) gently, or not so gently, discourgaed parents from scheduling appointments during school hours.  So I didn’t.  Until this year when it all came down to free babysitting.

Emily has homework most nights so it’s no longer practical to run errands after school, not that I ever run errands with three kids by choice.  And for a second-grader, Steven has a bit to do too.  And there’s Lauren.  She’s in a sweetheart stage once again but tired after a full day of kindergarten.  It’s our fifth academic year at our school, but it just occurred to me that I’m the parent.  I can take my child out of school if necessary.  I have to do what’s best for our family when life happens.  Why take two along for the ride when I could just take Steven during school hours?  Lesson learned.

I’m learning to go with the flow, that’s the other lesson I’m learning.  And it only took thirty-eight years.  Well, I’ve always been able to go with the flow, just not with a gracious heart.  I’d smile on the outside but the smile would end there.    I like my ducks in a row and I very much like knowing what’s going to happen, when it’s going to happen and how it’s going to happen, thank you very much.

They say practice makes perfect.  Let’s just say I’ve had plenty of practice being flexible this week and last.  Who am I kidding? Being a parent for ten years will teach flexibility, if nothing else.

Steven’s glasses broke on Thursday.  And there wasn’t a thing I could do about it.  It was the day of big sister’s and little sister’s Girl Scouts so we couldn’t get the frames fixed after school.  After Girl Scouts, Steven was unusually grouchy, wanting to go to bed without dinner even.  Vomiting began within a few hours but only lasted until midnight.  Not bad for the stomach bug.   There would be no going anywhere Friday because, you know, you gotta wait 24 hours after the last bout of vomit.  Or is it 48 hours?  I really don’t know.  I should, because the handbook.

Anyway, Saturday was World Thinking Day with the Girl Scouts.  Afterward, the five of us went to lunch at our favorite spot in Redmond, if you count a taco bus as “going to lunch.”  I do.

We didn’t exactly run out of time to get the glasses fixed.  It’s just that three kids were busy all day and were done with it all. The eyewear shop is closed Sunday and Monday.

Normally I would freak out over Steven not wearing glasses for five days, fearing his vision would be further damaged.  But there was nothing I could do.  So I didn’t.

I’m not usually this chill.  But something about being sick for so long, and not being able to do a thing about it, has taught me the fine art of chilling out.  The cold, by the way, it turned out to be a sinus infection.  All of the Sudafed in the world wouldn’t have helped.  That’s another story for another day but it’s too boring to write about.

Today is Tuesday.  Steven and I butted heads all morning before school.  At one point he was literally on the ground, kicking.  A flashback to toddlerhood if there ever was one.  We were almost late.  And it was my turn to help with Sight Words first thing.  The plan was for me to come for Sight Words and then check Steven out of school to run to Woodinville to the eyewear shop.  But the student teacher needed to film her lesson.   And that was okay.  I couldn’t have cared less that I came to school for nothing.  I totally remember student teaching and it’s requirements.  I wasn’t feeling put out at all.  I just went home, played with Chloe, worked on a Bible Study and finished my morning coffee.  I couldn’t have asked for a better and more focused 45 minutes.  Just knowing I had to turn around and get back to school to pick up Steven did the trick.  Thank you, God.  This is not typical Nicole behavior.

It was snowing when I picked Steven up.  Not enough to stick, but enough to fill our hearts with wonder.  By the time I delivered Steven and his glasses to the eyewear shop, we were both calm, enjoying each other’s company even.

And I would need to be calm and cool.  Our favorite technician, Katherine, could tell Steven’s glasses didn’t accidentally break.  Sigh.  The Holy Spirit and mama intuition is telling me that he’s angry that he’s different.  Little Nicole hated her hearing aids for the same reason.  Grown up Nicole knows it really doesn’t matter.  You have to do what you have to do to see or hear.  Now is the time to wear glasses, anyway, the bigger and bolder the better.  It’s hard to explain to an eight-year-old who is still learning that God loves him and doesn’t want him to be the same.  In fact, God sets us apart on purpose.  We are uniquely made and he calls us his own.  It hurts watching my son learn this one, but learn it he must.  We all need to be reminded of this painful yet life-giving lesson from time to time.  I know I do.

I’m not sure where I was going with this.  Once again this ADHD mind of mine has gone walking.  Anyway, I’ve got to get out of here.  The school bell will ring in about twenty minutes.  I need to bring the Smith Brother’s milk in from the box on the front porch and put Chloe in her crate before I bundle up and walk the half-mile to school.

 

 

Categories // Eyes & Ears, Family Tags // Glasses, mothering, Steven

Christmas 2008

02.27.2017 by Nicole Kristin Twedt //

Originally from December 2008

I’m an odd duck, it’s true.  I look forward to writing our family Christmas letter all year long.  Now that it’s that time of year, however, I’m encountering a case of writer’s block, severe as they come.  Perhaps writer’s block, at least for me, has to due with me being nine months pregnant.  Excuses, excuses.

I’m going to be easy on myself this year and just write a blurb about each of us, oldest to youngest.

Greg: After all most four years of marriage, good ol’ Greg is still my very best friend and the love of my life, no less.  Good thing we still like each other.  We’re on this crazy adventure called marriage for the long haul.  Greg’s generosity and faithfulness blows me away.  I’m learning so much from my husband about patience and gentleness.  I’d like to think he’s learning a lot from me, but it hasn’t been the case this year.  I’m not nice when pregnant.  Don’t hold your breath, but maybe he’ll learn something from me next year.

Greg is frantically working on our house, getting it ready for our new addition.  In the process, he discovered a leaky pipe in our family room.  It’s slowly been leaking ever since the house was built in 1988.  But all’s well that ends well.  We no longer have a 5-foot hole in our wall where a little patching had to happen.  He’s in the process of sanding everything so he can texture and repaint, hopefully before Steven comes.  Also, Greg’s working on making a dream of his come true: remodeling the garage, or as I secretly call it, the man cave.

Nicole: I’m about 38 weeks pregnant and about to pop.  I’ve found this pregnancy to be kinder on my body than my pregnancy with Emily, except for the first twenty weeks which almost did me in.  I identify this time around with women who say they enjoy pregnancy.  No words can possibly describe the wonderment of having a human growing inside me.  I’m in awe daily.  I also spend quite a bit of time mulling over the mystery of the stretch marks, which congregate mostly on my right hip.

I’m seriously freaked out about being pregnant again, even more scared to have another baby.   God gently ministered to my heart through a verse from the prophet Zepaniah (Zeph. 3:17).  I know now, without a doubt, that he is with me in this pregnancy, and will be with me as I take care of a newborn again, even though it scares me out of my ever freaking mind.  Above all, he is mighty to save.  All I have to do is run to his outstretched arms and he will calm my fears.  In fact, he rejoices over me with singing.  I never understood this verse until I was lying on the couch during the first few months of pregnancy, too nauseous to do anything but puke.  God spoke to me through a picture of me rocking Emily as I sang a lullaby.  He spoke to my heart about how this is how he wants to nurture me.  He just wants me to lay everything down at his feet as I come to him.  He will quiet my anxious heart with singing.  Pretty cool, I think.  For those who might say at this point that I’m a bit of a fanatic, I probably am.  But everyone has to have a passion.  I really love the Lord and I’m excited about what he’s doing in my life and in the life of my family.

Emily: Believe it or not, our princess will be two at the end of this month.  Emily comes in two speeds, fast and faster.  Surely her motto is, Why walk if you can run and why run if you can skip or hop? Curious, like her daddy, Emmie likes to discover how things work, loves to color, and really loves the letter O.  Best of all, she loves watching me put my make-up on.  And getting into make-up.  Unless it’s chicken nuggets, meat is avoided at all costs.  Emily hates being alone in her big girl bed, camping, and her brown shoes.  She adores her cousins Brad, Margaux and Greta.  If only cousin Isaac lived closer!  Brad, almost eleven, is Emily’s beloved Bro-Bro, and the apple of her eye.

Just the other day, after several attempts to get Em to put her coat on, I tried reasoning with my almost two-year-old.  I told her that she should want to put the darn coat on because it first belonged to Greta.  Emily loves Greta.  When that didn’t work, I threw it out there that maybe, just maybe, it was once Margaux’s coat.  She really loves Maggie.  Emily scowled, but switched gears and asked if the coat ever belonged to Bro-Bro.  I was tempted to lie right then and there.  But I couldn’t lie to my little girl.  I ended up reminding Emily that her coat used to live at Brad’s house, and that maybe, just maybe, it hung next to his coat at one time or other.  It was good enough for my Emily and she gleefully slipped into the darn coat.  Mama for the win.

Baby-to-be: Steven Thomas is due around the twenty-ninth, right before big sister’s birthday.  Given my limited experience in childbirth, no one is holding their breath for a 2008 baby.  We chose the name Steven after my dad.  And the Stephen in the Bible, a gentle man who was martyred for his faith in the days of the early church.  Interestingly enough, Steven literally means crowned or victorious, which is how my dad’s new life is with Jesus.  His life reminds me of the saints in Hebrews 11 who lived by faith but did not receive their crowns or rewards on earth but in heaven.  Julea, my sister-in-law, gave a verse for little Steven that I’m hanging on to.  “He will be a joy and delight to you, and many will rejoice because of his birth, for he will be great in the sight of the Lord…” (Luke 1:14, 15).  That’s my hope and prayer for our baby boy.

Well, the writing was surprisingly simple and pain-free, once I gave it a shot.  It’s amazing how the words come when I start writing.  I wish it was this easy in college.  Anyway, we three Twedts wish you a blessed celebration of our Savior’s birth.  We’ll be sure to let you know when Steven makes his appearance.

Love,

Greg, Nicole and Emily

P.S.

Steven Thomas Twedt. January 3.  9 pounds, 3 ounces.  21 1/4 inches.

Categories // Christmas Letters, Family Tags // Christmas, Emily, Pregnancy, Steven, Toddlerhood

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