“We’re talking about Autism.”

(Our boy Griffin)

For the past six months, every waking hour and some of our dreamtime ones, too, have been dominated by what you’re about to read. It’s important to write about stuff like this. That’s why I’m so glad my wife Annie chose to put her thoughts, feelings, and our journey down in words.

“It’s a boy!”

Kelsey and I had been in the ultrasound room for maybe five minutes when the tech announced with certainty the gender of our second child. We looked at each other and smiled. Coming into this, we were both fairly indifferent as to what we were having — we already had a daughter who we were over the moon about, and we knew we would be ecstatic to have another little girl. However, once we heard those words and realized that we not only were having a healthy baby boy, we were going to have the pleasure of experiencing parenting both a daughter and a son, and we couldn’t have been more excited.

After a fairly easy pregnancy and delivery, Griffin Noah entered the world on May 26th, 2011. He was perfect. We brought home our boy and felt our family was complete. He was such a good baby, very content and easily entertained. He was also full of smiles and very affectionate, especially toward me. As he got a little older, we noticed that developmentally, he was behind where his sister, Harper, had been when she was his age. Griffin was nearing 12 months and wasn’t walking or talking yet. But he was a boy, and we had friends and family with boys who were also slow to develop. We felt like it would just take a little extra time and were confident he would come around.

On September 18th, 2012, which happened to be the day before my thirty-second birthday, Kelsey and I were gearing up for a big day. He was speaking at Emens Auditorium that evening as Ball State’s Freshman Common Reader author, and I was excited that I was actually going to be able to attend! His events were typically out of town, and with two kids, it was never easy for me to hear him speak. With a babysitter lined up, and plans to meet up with family and friends later that evening, I was looking forward to a night out. There were just a few things we needed to do first.

Griffin and I dropped Harper off at preschool and headed across town to the pediatrician’s where he was scheduled for his 15-month well visit. While waiting for the doctor to come in, Griffin patiently played with puzzles on the floor. Dr. Burt entered and greeted us as usual and started asking some questions. He had reviewed Griffin’s developmental questionnaire, and because he was not yet talking, he asked, “How does he tell you he wants something?”

I sat there, trying in my mind to come up with an example of a time he had ever shown me that he wanted or needed something. I couldn’t. I said, “Well, if he wants his sippy cup, and it is on the table, he just gets it.”

“Does he bring toys or other things he is interested in to show you?”

“Umm, no, I don’t think he ever really does that.” I could tell Dr. Burt was feeling uneasy about the answers I was giving him.

“Does he imitate you?”

I could think of a few things Griffin would do back and forth with us — smacking the table, wrinkling up his nose and making a silly “oomph” sound, but I was starting to feel nervous about where this conversation was headed. Dr. Burt squatted down next to Griffin, who continued to happily play with his puzzle. He looked from Griffin to me and spoke four words I will never forget, “We’re talking about autism.”

I couldn’t believe what was happening. He had to be wrong. How could I not know that something wasn’t right with my own son? I tried to think what I knew about autism, and it wasn’t much. As prevalent as it is (1 in every 88 children), surprisingly I didn’t know anyone personally who had a child with this diagnosis.

“He interacts,” I managed to choke out through tears. It was like I was grasping for anything that would make Dr. Burt change his mind.

He told me to schedule an appointment in a week to come back with Kelsey after we had a little time to process things and come up with questions. In the meantime, we were referred to Riley Children’s Hospital for an official evaluation and also First Steps, a government program that provides in-home therapy for children ages birth to 3 who have any kind of disability or developmental delay.

I kept turning around to look at Griffin in his car seat on the way home. It felt like I was looking at a different child, like I was bringing home someone else from this doctor’s appointment. We walked in the door to Kelsey asking us how the visit went, and I almost hated to say it out loud because it just made it that much more real. He was just as distraught by my news, and we immediately started pouring over the Internet, reading every article and watching every YouTube video we could find. It was terrifying. We read list after list of red flags for autism and were broken hearted to discover that he did exhibit some of the signs. He wasn’t always responding to his name, he never used gestures such as pointing to indicate he wanted something, and he never engaged in any imaginative play.

I cried for seven days. I was sad, pissed off, and scared.

It was agony waiting to get an appointment with Riley. We waited over a month to hear from them and were finally scheduled for November 26th. We had read so many times how important it is diagnose autism early, and we felt so helpless just waiting around for his appointment. Fortunately, after a few weeks, Griffin was able to start his developmental therapy with First Steps, and his therapist was wonderful. It was such an emotional roller coaster ride, and I looked forward to her Tuesday visits when she would bring me back up. I joked that she was not only taking on little Griffin, but his 32-year-old mother, too.

We were scheduled to see a developmental pediatrician as well as a clinical psychologist for his evaluation at Riley and were relieved when they concluded that, although Griffin did show some red flags, they didn’t feel like there were enough to diagnose him this early and planned to re-evaluate in six months. They recommended a book called An Early Start for Your Child with Autism, and once we started reading it, even though we did not receive a diagnosis, we felt the authors had a way of describing our son. In a way, it was a relief for me to come to this conclusion. The past few months, I had watched Griffin do things that I questioned and wondered and worried about, and my heart just broke over and over and over again. With this new perspective, I could be more understanding of the way he is, and I could start celebrating all the things he was continuing to do and improve on, as opposed to being so afraid of what he was failing at because I didn’t want a diagnosis.

Autism is a neurological disorder that causes social-interaction difficulties, communication challenges, and a tendency to engage in repetitive behaviors. The severity and symptoms of the three impairments across the autism spectrum can vary widely. No two children on the spectrum are the same. Aside from Griffin’s communication delay, he also is not always the easiest to engage. He is willing to play and interact, but it needs to be on his terms. Although other children sometimes amuse him, he doesn’t seek them out, and he can be content to play alone.

Griffin is currently enrolled in preschool two mornings a week, which provides the opportunity to be around other children, and he also now does speech as well as developmental therapy each week. We are excited about the progress he is making! Although this has been such a struggle for me, I try to keep things in perspective, as I know people deal with so much worse.

Griffin loves his momma’s hair. He loves Bob Marley music. He giggles uncontrollably when his daddy swings him through the air. He smiles, laughs, and hugs. He melts our hearts and amazes us every day.

We couldn’t love our boy more.