The “A-word”

On February 24^th, 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 24^th 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