Diagnosis

Today is the day Aaron and I officially became “autism parents”. This morning Sam received a diagnosis of autism spectrum disorder. Under the previous diagnostic criteria it would have been called Asperger’s Syndrome, but that term is no longer officially used. I debated whether to put this out there, but I decided to because I have things to say (shocking, I know…)

I don’t post much of the yucky stuff on social media. I don’t mean to hide it; I just don’t see a reason to put it out there for everyone to see. I’ve realized, though, that only posting the funny things has left a false impression with friends who don’t see us regularly. Those people don’t see the meltdowns, the repetitive behaviors, or the social anxiety. They don’t see the sensory processing issues that cause Sam to end up watching from the sidelines instead of participating in activities. They don’t know about the countless times we have had to say no to things we really wanted to do because Sam needed a quiet day to decompress. Yes, Sam is hilarious and brilliant, but he also has some big, giant struggles that are incredibly overwhelming for our little family. We laugh often. We have a great time together. But most nights we all three go to bed exhausted, frustrated, and wondering if tomorrow is going to be any easier.

This diagnosis changes nothing and it changes everything. It changes nothing because words on a paper don’t magically make Sam struggle less and they don’t make Aaron and I less exhausted. It changes everything because now we know the reason for the struggles. It has a NAME. And we can take that information and move forward proactively. We can get therapy and services that weren’t available to us before those words were on the paper, and hopefully in the near future the struggles and exhaustion will be less. Or at least maybe they’ll be different.

The first question people have asked me today is “How do you feel?”. The answer is FANTASTIC. Sam is Sam. He is still my precocious child who uses every ounce of energy and patience I have by 10:30am every single day. This diagnosis doesn’t change that one bit. It’s just that sometimes on the really bad days I’ve looked at him and I’ve wondered “Am I doing something wrong? Am I not equipped to be the kind of mom you need? Why is every day exactly the same kind of hard? Why are we not making progress?”. It’s not me. It’s autism. Just saying those words lifts a weight from my shoulders and lets me take a deep breath. For nearly five years I have been told what I was doing wrong. I’ve been told my expectations were too high, my discipline was too harsh, I didn’t give him enough structure, I required too much structure, I wasn’t feeding him the right foods, I let him watch too much TV, and – my personal favorite – I needed to give him a sibling so he could learn the world doesn’t revolve around him. I’ve been given condescending head tilts from doctors and I’ve listened to countless bits of advice from well-meaning people who just don’t get it. I’ve read news article after news article after news article. After awhile those things start to get to you. They make you doubt yourself. But today I got VALIDATION. The doctor looked me straight in the eye and said “You are doing an absolutely fantastic job with him. You should be proud of what you have done so far.” And so I am thrilled. And I am ready to do battle for my little man.

Here’s the last thing I want to say…I don’t want to buy anything from you. I don’t want essential oils, or supplements, or exercise routines. I’m not saying those things don’t work – I actually think a lot of them are very beneficial – but let me come to you if I decide I want to explore that option. The fastest way to ensure you will never have me as a customer is to use this moment to pitch your product.

If you have been part of this journey with us so far, from the bottom of my heart, THANK YOU. God has given me so many resources and shoulders to lean on, and I really don’t know how I would have made it without those people. I know that His hand is all over this, and I know that He has already gone before us as we start down this road. He has never failed, and He won’t start now!

Three Days After Easter

Today is Wednesday.  It's three days after Easter.  Three days since I stood in a crowded room full of people singing songs of praise about an empty tomb and a risen Savior.

Do the last three days feel like a month to anyone else?

It just feels like there is chaos everywhere.  I'm grieving with friends over loss and helping family members fight battles over serious illnesses.  My son has had a week full of major behavior problems that I was thinking we had started to move past.  My best friend has four kids - all with strep throat.  My husband is traveling for work and ended up at Urgent Care after falling down.  He now has seven stitches and what is destined to be a pretty fantastic scar on his elbow.  Co-workers are reorganizing their lives after family tragedies.  Emotions are high.  Energy is low.

Most of these problems were there before Easter, but I don't think I was as sensitive to them.  Maybe because the last two years have been such constant chaos?  Or maybe it's because there's a spiritual battle going on and the enemy wants me to focus on my problems instead of on the empty tomb and so he's made those problems louder.

I have no perfect answers for life's struggles and I have no cute anecdotes to tie this all up with a bow.  What I do have is a body that is weary, a husband who is injured, a son whose emotions war within him in such a way that his two-year-old brain just turns to screaming mush.  I have a grandfather losing the fight against Parkinson's disease.  I have a dad facing major surgery.  I have a mother trying to maintain her sanity while caring for us all.  But I also have the knowledge that the tomb was empty.

The tomb was empty.  

Ann Voskamp wrote a stunningly beautiful blog post this week called The Truth You've Got To Know About After Easter.  You should take the time to read it and savor her words and pictures in their entirety.  But one quote jumped out at me like a flashing neon sign:

They say that the most hilarious line in the Bible is Pilate speaking about Jesus’ tomb: “Go, make it as secure as you can.“  Good luck with that.  Because the thing is:  We now get to live secure through family messes and wearying trials and bloody places because nothing could secure that tomb.  We can live secure through anything now because nothing could secure that tomb.

We can live secure through anything now because nothing could secure that tomb.

So if you're fighting like I am can we just all take a deep collective breath together?  Can we lay our burdens down at the foot of the cross?  And can we smile in the knowledge that God restores shattered dreams and completes the impossible?

I've stared at this screen for 15 minutes trying to find a way to wrap this up, and now I'm struck with the realization that this doesn't get wrapped up.  It just stands on its own.  So I'm just going to try to let this ring in my ears throughout the night and the upcoming days that promise more chaos.

We can live secure through anything now because nothing could secure that tomb.

Phteven

My best friend and I have a joke.  It began with this...

I got this picture from her via text.  Or maybe it was on Pinterest and we just started texting about it.  Anyway, the point is that we both had the picture.  And we laughed.  We laughed hard.  We laughed until there were tears.  And "Phteven" became a mantra.

What do you say when you don't know what to say?  Phteven.

Rude lady at Target?  Phteven.

The kids have mysteriously shed all their clothing and are running around the house acting like rabid howler monkeys and it's only 11:30am?  Phteven.

You miscalculated and overdrew the bank account and now there's no money until next week and the car is on empty and the only food in the fridge is a tiny bit of milk, a questionable hunk of cheese, and some mustard?  PHTEVEN!

Poor Phteven with his unfortunate overbite and fantastic bow-tie has gotten us laughing in situations where we really just wanted to curl up in the fetal position with a bag of cookies and a margarita the size of a birdbath. 

But Phteven also got me thinking.  About what to say when you don't know what to say.  And I know a thing or two about this because I have been in a few situations where people just didn't know what to say.

My husband and I suffered through miscarriages and several years of infertility.

My family spent about 18 months weathering one tragedy after another.  Seriously.  Total chaos.  I'm pretty sure people thought I was making things up to get attention.  I wasn't.

My husband and I have had major financial difficulties for an extended period of time.  Every time there was a light at the end of the tunnel it turned out to be a train.  We spent 6 months on food stamps.  Our son is on government insurance.  We finally declared bankruptcy, surrendered our house to the bank, and downsized dramatically.  (There!  I said it!  In public!)  We are currently rebuilding our finances from the ground up.

We've had severe marriage problems.

The child that we begged God for over a period of about 8 years has turned out to have a very unique temperament that has required us to make some tough sacrifices in our social life to help him thrive.  (Not that I regret or resent those sacrifices, but they were still hard.)

I know how it feels to be isolated.  I know how it feels to be the one asking for prayers so often that you finally stop asking because it dawns on you that people just might not care anymore.  I know how it feels to have to smile and nod through advice from well-meaning people who have never walked one single day in shoes that even resemble yours.  And I know how it feels to receive judgement from eyes and words and body language.  I still carry that judgement around with me every single day.

But occasionally during those really rough times someone would ask me how I was doing and I knew they genuinely wanted to know.  So I told them the ugly truth.  And most of those times their response was very simple.

"I'm so sorry you're struggling.  What can I pray for specifically?"

"Wow.  That's big stuff.  But you're doing a great job and I'm proud of you."

"I wish I had answers for you, but really all I have is the ability to love and pray you through this."

See, most of the time - and maybe I'm the exception to the rule here but I doubt it - I'm not asking someone to fix it.  Because if it could be fixed I would've done it already.  And I'm not asking for advice.  Because I've spent hours pouring over forums and blogs and books and have realized that there is no simple answer and I'm just going to have to wait it out.  And I've heard every platitude and cliche you can possibly throw at me.

What I need is support.  Unconditional support.  Consistent support.  What I need to know is that wherever I am today emotionally is okay as long as my eyes are on God.  What I need to know is that you see me.  That you see my struggle and you know I'm fighting and that you'll fight with me if I need you to, but you'll also be there to cheer me on if it's a fight I have to do on my own.  And I need it to be okay if my fight lasts longer than you think it should.

Don't give advice unless it's requested.  Don't say "God has a plan".  Don't tell me that "What doesn't kill you makes you stronger".  Don't (DO NOT!) say that "God won't give you more than you can handle."  (I won't rant about this one today.  Besides, this blog post says it better than I ever could.)  Don't get your feelings hurt if you ask what you can do and I say "nothing" because there really genuinely might not be anything you can do.

Sometimes we have to walk roads that are dark and lonely.

And we all walk those roads in our way with our own style.

And that's okay.  We're all in the battle trenches every single day.  My trench just might look and feel different than yours.  

And here's the thing....and hopefully this isn't too harsh...Not understanding my situation doesn't give you the right to judge or condemn (verbally or nonverbally - trust me, I see the look in your eyes).  If you haven't walked in my shoes, give me the benefit of the doubt.  Or if you have walked in my shoes and my stride looks different than yours did, give me some grace because I'm probably still figuring it all out and I'm doing it my way.

I'm on the other side of most of the battles I mentioned earlier and I can look back with fresh eyes and bring to mind the people that helped me the most during those times.  And those people were always the ones who were more interested in how I was doing than they were in fixing me or my situation.  So next time you're in a situation where you're talking to someone and you're not sure what to say maybe the best thing to say is nothing.  Maybe a hug and a smile and a simple "You're doing good, kid" is all that is really needed.

Or, of course, you could just say "Phteven".  But then people might think you were crazy.

The Reason We're Both Still Here

10 years ago today this happened...

10 years ago today I had expectations.  

I expected that he would always be my favorite person.

I expected that we would face trials together, hand in hand, with the same mind and spirit.

I expected that he would always know the right thing to say when I was feeling stressed, or angry, or depressed.

I expected that the bedroom would be a place for intimacy and connection in a way I'd never known.

I expected vacations, dinners out, and surprises for birthdays and anniversaries that he lovingly planned out.

I expected babies - a houseful of babies - that I would stay home and nurture while he went out and earned a comfortable living for us.

I expected that he would lead our home with the wisdom of a strong Godly man and be someone I could count on to always redirect me when I got offtrack.

I expected that our 10th anniversary would be spent on a nice trip without a care in the world.  Somewhere with moutains and a jacuzzi tub and a nice bottle of red wine and chocolate cheesecake.

But here's the reality... 
(Yes, he knows I'm writing this.  He pre-read it.  He approved it wholeheartedly.)

He is not always my favorite person.  Sometimes we disagree so bitterly that I wonder to myself how I could've made this choice.

We do not approach conflict in the same manner, so most of the time we spend trials fighting each other as well as the trial.

He does not know the right thing to say.  He's not good at words.  And when he tries to be poetic he sounds like an SNL skit.

The bedroom is not what I thought it would be.  Sometimes the "passion" just isn't there.  Sometimes there are lengths of time where neither one of us can be who we need to be for other person.

He has never planned a birthday, anniversary, holiday, or vacation.  If I don't plan things they don't happen.  And when I try to get him to help me plan he says "I'm fine with whatever you want to do."

There is not a houseful of babies.  There is one baby.  And there might not be any more.  And, honestly, that's okay because this one baby is just almost more than I can handle on most days and I question my ability to nurture him the way I'm supposed to.  And my husband doesn't know the things to say to make me feel better (remember the not being good at words part?), so I spend quite a bit of time alone with my thoughts about this particular issue.  And as for the comfortable living...well, steady finances have been a struggle since Day 1 and I'm not sure there's an end in sight to that.

He does not know how to be a Godly leader.  He assumes that things will take care of themselves if left to their own devices.

Our 10th anniversary is going to be spent pinching pennies with a cheap dinner at home, a DVD or two, and the baby asleep down the hall.

And if you asked him about his expectations I'm sure he could come up with a list equal to mine.

And yet - despite those broken dreams - we're still together.  We like to joke that the only reason that's true is because I'm too stubborn to divorce him and he's too lazy to divorce me.  And, folks, there's some truth to that statement.  But when it all comes down it there are two main reasons that we're still standing side by side ten years into this mess called marriage.

First, we are friends.  When the passion isn't there, when the romantic words don't come easily, when we've argued ourselves into a corner the night before and the tension is still palpable the next morning...we are friends.  We share interests (roadtrips to nowhere, pasta, board games, and cheesy sci-fi tv to name a few).  We can find ways to connect outside the bedroom.  When the romantic love disappears for a season we can focus on the friendship and eventually find common ground to reignite the spark.

But the biggest and most vital reason we are still together is this....God's love.  We believe that 10 years ago the vows we took before God meant something.  It's not because we're afraid of going to hell if we split up.  It's not because "we said 'until death do us part' and now we're stuck so we might as well make the best of it".  It's not guilt or obligation or blissful happiness or fantastic bedroom skills that keep us together.  It's the fact that God loves us unconditionally, unendingly.  A love that is full of grace and second chances.  Even when we don't deserve it.  Especially when we don't deserve it.  My relationship with God is not always sunshine and roses.  Sometimes I get angry with Him.  Sometimes I struggle with trusting Him.  I let him down over and over again with my selfishness and arrogance and need to be in control.  Sometimes I am struck by the absolute certainty that if God could get a migraine I would be giving him one.

And yet, He's still here.  He hasn't given up on me.

He hasn't said "This isn't what I expected.  You haven't lived up to your end of the bargain.  I'm not sure I love you anymore".

He hasn't said "I love you - I really really do - but I just can't handle this struggle any longer".

And so neither will we.

We will keep trying to build our marriage around the example God set for us with Christ and the church.  The example we're called to uphold in Ephesians 5.  We will mess up.  We will fight.  We will let each other down.  But we will choose grace.

My point in this is not to preach at anyone who is struggling in their marriage.  And it's definitely not to condemn or judge anyone whose marriage has fallen apart.  My point is to encourage you.  If it's your 10th anniversary and you're sitting in your house with a sinus headache and no money and no babysitter because your husband didn't plan far enough ahead it's very easy to get on Facebook and look at your friend's "highlight reels".  It's easy to see the sweet things that people say about their spouses and think "MY husband doesn't do/say/act like that".

I could have given you a "highlight reel" today.  I almost did.  A slideshow of pictures of the last 10 years full of smiling faces and tender moments and happy memories.  There are plenty of those things to share; we've had a lot of fun along the way.  But I chose to give you the other side of the coin instead.  If you're struggling, you're not alone.  If you're disappointed, you're not alone.  If you look around and wonder if anyone else feels the same way you do - I love my spouse but this is so HARD - the answer is yes.  Absolutely YES.  But some of those same people who are struggling and disappointed are making the choice to stick it out and see what God has in store.  We're standing up for marriages that can last.  We're not buying into the Hollywood version of "happily ever after".  Because "happily ever after" doesn't just happen...it takes work.  Because when my weary heart says "I can't", God says "I can".  Because when the world says "It's broken", God says "I can fix it".  Because He makes all things new.

I love my husband, but it hasn't been an easy 10 years for either one of us.  Neither one of us are easy to live with.  And there's no guarantee that the next 10 years will be any easier, although I'm very hopeful that it will.  But even if it's not....we will smile through the tears, and find ways to stay connected through the hard times.

We will choose each other.

We will choose grace.

When I Get Tired I Ramble

My brain feels like a pinball machine on steroids today.

My kitchen is full of dirty dishes and laundry is piled almost to the ceiling, but Sam is playing quietly in his crib so I'm typing this instead of cleaning.  Don't judge.

Sam is obsessed with cars.  Especially Lightning McQueen.  I bought him his Easter basket today.  He approves.

After giving him the basket I turned down the next aisle and I saw his eyes light up.  He pointed and said "Beebee!!".  I searched and searched and finally realized he was pointing at a tiny little plush bunny.  It's brown with orange and white gingham ears and feet.  

       "This, Sammy?  The bunny?".  

       "Beebee!  Peeeees, Mama?  Peeeeeeeeeees?  Beebee?"

I bought the bunny.  He has been carrying it around in his Lightning McQueen basket and occasionally pats its ears.  

I have been eating gluten-free for eleven days.  It started as an experiment which I'll blog in more detail about  later.  I cannot even begin to describe how much better I feel.  If I could just get rid of this stupid sinus/allergy junk I might actually feel healthy, and I'm not sure what to do with that.  I've been battling minor health problems for so long that I've just gotten used to them.  I'm looking forward to seeing how this whole thing plays out.

In related news, blue cheese is not gluten free.  Neither are Jack In The Box tacos.  But Reese's Peanut Butter Eggs have no gluten, so the world is not a total disaster.

I had a text conversation with my best friend today about aardvarks.  No really.  I did.  

I also had a conversation with her about how Sam found my bra and put it on his head, but we won't go into detail about that one.  

I usually am not a big fan of Spring.  Ever since I moved back to Texas from living in Oregon I get kind of protective of winter seeing as we don't really have winter here.  Every time it hits 80+ degrees in early March I get a little grumpy.  And so do my sinuses.  But there's one thing that happens every single year that makes me squeal like a little girl.  And it happened today.  BLUEBONNETS.  The bluebonnets are blooming!  Every year I see the first glimpse of bluebonnets and I take a deep breath and I smile about Spring in Texas.  God brings those gorgeous fields of wildflowers back every single year.  The fields might not always look exactly the same, and some years are more vibrant than others, but the beauty is always there.  And today it hit me...the bluebonnets always pop up right around Easter.  The time for celebrating resurrection and new beginnings.  And suddenly the old song was in my head.

Great is Thy faithfulness, O God my Father,There is no shadow of turning with Thee; Thou changest not, Thy compassions, they fail not; As Thou hast been Thou forever wilt be

Great is Thy faithfulness! Great is Thy faithfulness!  Morning by morning new mercies I see; All I have needed Thy hand hath provided—Great is Thy faithfulness, Lord, unto me!

Life is like those fields of wildflowers.  Sometimes life is vibrant and full; sometimes it's muted and the blessings seem sparse.  But God's beauty is there constantly.  He has the power to renew and revive and resurrect.  And He is faithful.

PS.  Pirate's Booty is gluten free.  I may have a situation here that requires intervention.  Send help ASAP.

Doubt

It's been one of those days.  The kind where you want to go sit in a dark room and contemplate your very existence.  And if that dark room happens to have a bubble bath and a glass of Cabernet Sauvignon - even better!  Because some days leave me wondering if everything I think is true is really just a misinterpretation of facts that I have gotten so comfortable with that I stopped paying attention.

I have a child who is...ahem...difficult.  When he was very tiny he started showing signs of having a temper.  He is now nineteen months old and the temper is going strong.  I'm not talking about the "Terrible Twos".  I'm not talking about an occasional fit.  I'm talking about having major temper tantrums involving kicking, biting, flailing, and screaming every time some tiny thing doesn't go exactly his way.  It's all day, every day.  And I'm exhausted.  We've tried every discipline tactic you can imagine - short of chaining him to a wall in a dungeon - with very few positive results.  He takes his punishment and then he goes right back to doing whatever got him in trouble in the first place.

So for the past several months I have wondered if there could be something "wrong".  Could he have some sort of learning disability?  Could he be on the autism spectrum?  I've talked to friends and family about ways to work with him and I keep being told to contact ECI and get him evaluated, but I don't see any developmental delays (unless you count him being so stubborn he refused to walk until he was 18 months old) so I haven't done that yet.  I wanted a doctor's opinion.

Today we went to a new doctor for his 18 month well-child checkup.  (Yes, we're a month behind.  New insurance is a PAIN.)  I had my list of questions for the doctor and I talked while he listened.  Then he said what I assumed he would say.  "Toddlers are feisty.  It's too early to tell if there's anything really going on in the behavioral or social areas; we'll have to wait and see.  Just keep up the loving discipline.  Etc. Etc. Etc.".  I agreed with him to an extent, but I also felt a little dismissed.  In my head this voice was screaming "You don't understand!  It's NOT just Terrible Twos!  Don't write me off as a weak parent!".

And then the doctor did his physical exam.  

And my kid has a raging double ear infection and a throat is that bright red and inflamed.

I'm the parent who missed that their kid is sick.  

To his credit, the doctor was very nice and assured me that some kids don't show symptoms of ear infections and he could've just developed it yesterday for all we know and that I shouldn't feel bad.  But it was what he said next that bothers me.  He said "When I look at him I just see a little guy that doesn't feel good".

It bothers me because that's not what I see when I look at him.  I mean, it is now.  Now it's painfully obvious.  But I was so busy trying to correct his behavior that I missed the simple fact that he was trying to cope with being sick.  I think back through the last nineteen months and I realize that we have basically gone from diagnosing acid reflux to weaning off reflux medicine when he outgrew it to diagnosing reactive airway disease and working through learning about breathing treatments to flu season to allergy season.  And maybe, just maybe, he has spent the majority of his short little life struggling to keep up despite feeling crappy 90% of the time.  And I missed that.  And now the doubt starts swirling in my head.  Satan starts whispering in my ear and I start beating myself up for all the things I'm not.

I wish I could tell you that I have a profound revelation from God about all this, but right now I don't.  Right now I'm tired and frustrated and disappointed in myself.  I think that's where you come in.  Surely I'm not alone in this, right?  Surely there is someone out there whose kids are grown; someone who has been-there-done-that-has-the-T-shirt and can tell me how they used to feel the same way?  Or maybe a few of my fellow Moms Of Toddlers Club members that can just throw me a comment like "yep, sometimes I suck too but my kid isn't institutionalized yet"?

What do you think?

Books of the Month: February 2013

Here are our favorite books from February.  There are really no surprises when it comes to Sam's favorites this month.  We've been introducing him to several classics and, predictably, they have not disappointed.

Barnyard Dance by Sandra Boynton
Sam FINALLY decided he likes Sandra Boynton!
And I am thrilled because her books are adorable.

Brown Bear. Brown Bear, What Do You See?
by Bill Martin Jr and Eric Carle
Sam brings me this board book and says "bown boooooor"
and then crawls up into my lap and wants to read it
over and over and over and over....

Goodnight Moon by Margaret Wise Brown
We read this EVERY night before bed.

Llama Llama Red Pajama by Anna Dewdney
I get a little dramatic when we read this, and it
makes Sam giggle like crazy.

Where the Wild Things Are by Maurice Sendak
Well.  Of course.

 Sisterchicks On The Loose by Robin Jones Gunn
I borrowed this from a friend and read it on the plane
to and from Portland.  It's simple and fairly brainless, but
pieces of the story have really stuck with me.  If
you like Christian fiction give this a try.  It's the first
in a series, and supposedly the second book is even better.

Code Name Verity by Elizabeth Wein
I cannot put my reaction to this book into words.
I am haunted by it.  In a good way.  Read it.  Soon.

Tomorrow we'll be making a trip to the library and finding some new books for the March list.  Happy reading!