Thursday, January 29, 2015

The “A-word”

On February 24th, we are taking my youngest son, Wesley, to the Marcus Autism Institute to see if he needs some further testing. So as you read our story, please know that I don’t know if Wesley is on the spectrum. I am writing this because I think it’s time. I am writing because being in Autism limbo is confusing and maddening. I am mostly writing because I don’t want anyone out there to be afraid to explore a potential diagnosis or intervention because of fear or because someone tells you they are too young. I have already begun to see the benefits of early intervention.    

In February of last year, I noticed my youngest standing about an inch away from license plates…a lot.  He was getting to an age where it was becoming apparent that his speech was delayed, but honestly, that was the least of my worries.  It was his fascination with letters, his constant counting and his tendency to isolate himself that secretly terrified me and kept me up late Googling.  After failing the 18 month MCHAT (the autism screen), my pediatrician recommended first addressing his chronic ear infections before jumping to any neuro-conclusions (totally made that word up). 

So within a week, he had tubes put in, adenoids removed and allergy testing done.  In terms of ear infections, it was a game changer. To date, he hasn’t had an ear infection in almost a year.  Also, he began to isolate himself less, he attempted more words, his balance seemed to get a bit better.  What remained was his obsession with letters and numbers and no real interest in communicating.  Always sweet, giggly and laid back – I didn’t see anything that I thought was considered “on the spectrum”.  I mean, I have a Masters in Googling and what not.

We began the Babies Can’t Wait process for his speech delay.  This is a state offered program that offers a free evaluation for kids showing delays. If you qualify, the therapy is affordable. I would recommend it to ANYONE in the state of Georgia.  Wesley got evaluated in July, qualified for the program and we began speech and play therapy in August about a month before he turned two.  At the start of Babies Can’t Wait he knew 13 words and ten of them were the numbers 1 - 10.

A few weeks in he had a language explosion.  He went from a few words to all of them.  I began to relax. Autism left my mind.  An idea that had once terrified me seemed preposterous now.  He was talking like crazy. But what I would soon realize is that he was doing more repeating than communicating.

I went to his follow up ENT appt.  When it was over, the doctor looked at me and asked if I thought my son’s behavior was normal.  I felt my heart sink to the floor, but I tried to play it cool.  I knew he had some quirks.  We ALL have quirks. He told me to make an appointment with the Marcus Institute. Two is a good age to go I remember him saying as I tried not to cry.  

I did end up crying in a parking lot to my husband as I was giving Wesley to him to take home so I could go to work.  He grabbed my shoulders and said words that I won’t ever ever forget, “None of this changes who he already is, Rachel. THIS is not cancer. THIS is not fatal. WE can deal with THIS. Whatever IT is.” 

I love that man.

Later that week, I relayed the ridiculous interaction with the ENT with his play therapist.  I looked at her and said, “I mean, are YOU watching him for Autism?”

She nodded her head.

Wait.

She nodded her head?

OMG I have given my child Autism.

A few weeks later, I took Wesley to an after-hours pediatrician.  He literally wouldn’t talk about Wesley’s upset stomach because he was too busy commenting on his toe-walking, on his lack of eye contact. All I wanted was a prescription but he wanted me to know that Wesley had some characteristics of a child with Autism.

I wasn’t sure how to process this. It was now October and I had been afraid of Autism since February. All the people who knew him on a medical/therapy level, told me he showed characteristics. All the people who knew him on a personal/educational level told me he was a typical two-year old. I was exhausted. I was stressed out. I was so done thinking about it. Every time Wesley did anything, I would think to myself, “Is that an autism thing?”

When really, it was just a Wesley thing.  

And as my wonderful girlfriends reminded me on a desperate FB thread I started, Wesley was the happiest kid they knew. 

He wasn’t a bit upset about what we all thought HE had.

It was around that time that I realized he knew the alphabet. It was the next week that I realized one night he was sitting in his car seat spelling the word train. He was barely two. After train came snow, stop, Wesley, frog, lion, dog, dad, ice, key, etc.  It was fascinating. I soon counted about 40 words that he could spell, identify when spelled and read off of a page. Trust me when I say that I wasn’t working with him. He was spelling words my 7 year old struggled through.  His play therapist called it Hyperlexia…and it can be a splinter skill of autism or it can be its own thing.  It was the one bright spot “red flag” wedged in the am-I-doing-what’s-right-for-my-child world I was in. 

Wesley is a bright, sweet, funny, laid back and happy kid.  He’s goofy and silly in ways that leave Andy and I in stitches. He cuddles with me where my first, I am in charge of the world, child never did. He sleeps like an angel, rarely throws tantrums and is never happier than when we are leaving Target and he can scream out the numbers on the check out lane signs.

We have heard the word “aspergers”, “mild” and “high-functioning” as it relates to him. The statement that took all my fears away was when I was wavering on this Marcus appointment and my pediatrician looked at me and said, “Rachel, do this now.  Have him evaluated now. If he does have Autism, at this age with intervention, I’m not going to tell you he can be cured of it, but he can overcome it.”

Andy and I are in a good place with this. We have had time to digest and discuss and agree on what’s best for Wesley.  We’ve been doing it for a year. We have adopted the mission statement that we will do whatever we can to eliminate frustration and roadblocks for learning long term.  If that means Wesley gets a label, then so be it. We have also discussed the possibility that we will go to Marcus and pay money for people to tell us that Wesley just doesn’t really have anything to say to us. Both would be fine and neither would change all the things about Wesley that we already know.  We all have challenges in our life that we have to overcome.  Wesley is no different.

I have had a wonderful community of people reach out, pray and simply share their input.  In fact, I have learned the most helpful things from other people who have been there and done that.  That’s why I’m unafraid to share this. 

If Wesley is on the spectrum, we will have a lot of things to learn and decisions to make.  I am a bit overwhelmed at the thought and so I would appreciate good thoughts and prayers on the 24th that we will listen and understand what we are being told.

And pray for sweet Wesley. His best interest is at the forefront of our minds and hearts. God chose our two boys to be ours and, like all of you, we are in this for life. He is one of two of the biggest blessings we have ever been given. Andy and I would do anything for these precious boys. 

Through this process I am learning to allow fear its due time but let resolve quickly overtake it so you can focus on doing what’s best for your children and your family. 

And in all things, we thank God for his presence in our lives. 


Rachel 

Thursday, January 1, 2015

A Night Without the Kids

You get back to the house after dropping your kids off with grandma.  New Years in the house by yourself.  You have been looking forward to this for weeks.  Tonight you are going to get caught up with your life, have the quiet to think to yourself and get really ready for 2015.

Walk into the house, remove your coat and savor the silence for about 10 minutes. You don’t know what to do first.  You are overwhelmed with options. You have a running bucket list of things you want to do when you get control of your home again and you literally don’t know where to begin. 

But you are excited…because the undeniable truth is that at some point tonight you, my friend, will get to pee alone.

Tonight you are going to have the quiet to finally whip the house into shape.  Christmas decorations will come down. You will make your purge, donate, return bins and get a jump on that resolution to declutter your home for good.  It’s going to be heaven. But you’ve got time for that…you need some downtime too.

Maybe you’ll watch some tv first. Who are you kidding…it’s time for those yoga pants. Go get them on if you aren’t already wearing them…always.

You walk over to the remote control and hit the “on” button.  Dora immediately begins screeching orders at you. “Not this time, you pint-sized, screeching like nails-on-a-chalkboard, type A banshee.  You have to find your own crap.”  You begin flipping channels.  Several hundred channels of options and you can’t wait. 

Maybe some House Hunters? There’s a marathon on. 

Or perhaps you’ll watch a movie with a lot of profanity…just because you can. 

You could watch the 24-hour crime show channel.  Ring in the New Year with a little “Momsters: When Moms Go Bad.” 

You scroll the channels for a full 15 minutes looking for something to catch your eye. What the heck did you used to watch?  At one time you had complete clicker control, and you were an expert at show choosing.  But now you act like you just arrived in this century and you’ve never seen television before. 

You finally settle on the evil mom show.

You grab your phone because tonight, is the night.  You will play candy crush at full volume. Without the fear of little feet running up behind you and plucking it out of your hands yelling for the Super Why! game. You settle back in your chair of choice, put your feet up, half listen to moms going bad while you crush candies. 

At some point you’ll get into the hummus but pace yourself dear…the night is young.  It’s only 5pm and you won’t start getting drowsy for another 45 minutes at least. 

Even though you are enjoying yourself, there is that voice in the back of your head reminding you what a huge, lame waste of time all of this is. 

It’s a good thing we don’t listen to that hussy. Crush those candies, girl.

The next few hours are a blur.

You decide to get going and go through some of the kids’ toys while they are gone.  Got to make room for the mother load of incoming Legos and V-tech cars and tracks that are sitting in the hallway from Christmas. You'll throw out toys your kids will never miss and have that playroom looking Pinterest ready in no time. 

I mean that was the intention.

At some point you realize you are now just sitting in a bean bag chair in the playroom, playing slots on your tablet and watching moms go bad…still.  Someone ordered Jimmy Johns.  It must have been you.  Taking bites in between spins, you resolve that you are going to get to the next level of Wizard of Oz slots tonight if it kills you. 

Clearly you’ve mastered the art of time suckage. But any minute you’ll get up and start cleaning and organizing like Martha Stewart and June Cleaver. 

Next thing you know, you are waking up on the couch. There’s a half eaten bag of pita chips, and an open container of hummus on the floor beside you.  It’s 6:30 in the morning on the first day of 2015 and you are having a super lame, non hangover “Hangover” experience as you try to piece together your super wild night. Christmas decorations are still up, your butt print is in the kids new beanbag chair and every tv in the house is on the Investigation Discovery channel. 

You get off the couch wide awake because the fact that you had the freedom to stay up late and sleep in doesn't mean you are cable of doing it anymore. 


You wonder how the kids are.  Gosh, you miss those little guys.