Friday, February 28, 2014

One

Two years ago today, we received Little Man's autism diagnosis. And I was shocked. We truly didn't suspect autism. Sure, I took him to be evaluated, but I was really just being safe, ruling it out. After all, we got Big Brother's autism diagnosis just 10 months earlier. So, we knew what autism looked like. Right? 

It's been said that, when you've met one person with autism, you've done just that; you've met one person with autism.  Like all people, my boys are fearfully and wonderfully made. They were each given unique characteristics, personalities, strengths and challenges. So, despite the commonalities of the diagnosis, autism looks different in each of them. 


We knew something was different about Big Brother from a very early age. He was a happy, laid back, affectionate baby. He would get so excited that he'd lay on his back, flapping his arms and legs as he squealed with delight. Hubby was in flight school at the time, so we joked that our sweet baby was attempting to fly. We'd never seen anything like it, but none of our friends or doctors thought it odd. He also seemed to take his time with some of the developmental milestones: walking, talking, etc. Then again, we were surrounded by baby girls. What did we know? By 18 months, we were certain that his speech was delayed. Unfortunately, it wasn't delayed enough to qualify for therapy. So, we waited 6 months and the gap grew. At two, you're expected to do more, and he couldn't. So, finally, his early intervention began. Over time, we identified sensory challenges and added occupational therapy to the mix. We visited a developmental pediatrician and after our first two hour visit, she diagnosed him with Global Developmental Delays and Expressive/Receptive Communication Disorder. Course of treatment: continue with early intervention, return for follow up in 6 months. So, we did. Believing that eventually he'd catch up. 
Meeting Baby Brother

Little Man came into the world full of determination, which is an awfully good trait for a little brother. He was much more particular about his desired proximity to mommy, and his development seemed more on-track. But what did we know? We didn't have a good benchmark for typical. Though we had ruled out genetic abnormalities in brother, we stayed on top of Little Man's developmental screenings. We had him screened every 6 months, like clockwork. At 18 months, he was exceeding milestones. The following year, he was still meeting them, but his pace had slowed. 6 months after that, he had fallen behind. Again, not behind enough to qualify for services. We really weren't worried. After all, he was talking up a storm, and he didn't seem to struggle like his big brother. My, how ignorance is bliss!

The Boys at the time Big Brother was Diagnosed
After our firstborn turned three, he transitioned from early intervention at home to a preschool setting. We also started private speech therapy. After a year of therapy, our insurance company needed us to justify our need for services. Since the developmental pediatrician wrote the referral, we needed a copy of her records. She was on maternity leave, but her office was happy to help. As I was reviewing her notes, I was stunned to find a comment about "observing for high functioning autism." Not only had she failed to mention it to us, but she had actually dismissed the idea at one point. So, I never read up on autism. 

When I mentioned the remark at a preschool meeting, the team asked if we'd like to have him evaluated. When I agreed, they leapt into action as though they'd been waiting for me to ask. They were able to get us an appointment with the psychologist pretty quickly. In preparation for our appointment, we were asked to complete some paperwork. Just a few questions into the evaluation form, I began to cry. I wondered, "how did they know?" The questions described my son to a T. I was so upset that I hadn't read up on autism sooner. There was little question in my mind. Global Development Delays failed to capture the full picture; my son had Autism Spectrum Disorder. Upon formal evaluation, the psychologist confirmed what I already knew. 


The Week Little Brother was Diagnosed
As I struggled to get additional therapies and services in place, I met with the psychologist to better understand the diagnosis. Then I began to see her to sort through my own feelings and fears. Since my youngest son only attended German Kindergarten part day, sometimes he came to the appointments with me. As we talked, the psychologist sometimes asked questions like, "does he always...?" or "does he ever...?" It raised a red flag in my mind. Around the same time, his teacher commented that he didn't make much eye contact with her. I could have written it off as a result of their language barrier, but I knew better. When I saw the psychologist again, I asked her if she suspected autism in my youngest son as well. Indeed, she did. We agreed that it would be best for us to travel to the major medical facility a few hours away, to get an objective evaluation. Over the course of two days, we met with a team, including our developmental pediatrician, a child psychologist, and a speech therapist. On Feb 28, 2012 the pediatrician called to let me know the results of the ADOS (Autism Diagnostic Observation Schedule). 

Though they appear so different, the boys were given the same diagnosis: PDD-NOS (an Autism Spectrum Disorder). My oldest son was 4 years 8 months when he was diagnosed, while my youngest was only 3 years 2 months. Though life doesn't look the way we imagined, you can be sure no children have ever been more loved. I hope that you'll stick around to see what autism looks like for us. 


Please visit me at my new blog, www.ericaaklan.com



3 comments:

  1. What a journey you have traveled. I am amazed at how far both boys have come since their diagnosis. But what amazes me more is how hard you work for them, fight for them when needed, advocate for them and others, educate others, give of yourself until there is little left for you, and of course love them. You have been full steam ahead since day one. Be proud of yourself!

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  3. Thank you so much for sharing.

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