Emmett's Buttons: An Autism Journey - Part 2

Suspecting that something may be developmentally “off” with your child is scary enough, but hearing the words “Your child has autism” can be devastating…

Emmett will be turning 16 on April 12^th. This month I plan on writing about some of the details of our journey with Emmett. Some of it might be in chronological order, some of it might be about some of the special gifts he has. But all of it will be about how blessed we all are to have Emmett in our lives.

 

“Emmett is autistic.”

At this point I was drowning in a deep well of grief and self-pity.  My vision of a “perfect” family was shattered.  I felt so selfish thinking this way…up until Emmett’s diagnosis things had been going so well for us: I was back at school earning my BA in Art Education at Drake University, Scot was a full-time dad and a working musician.  I had a plan for our family, and it didn’t include a complication like this.

Our family was wonderful.  Our friends were supportive.  Not everyone understood what autism was – it was mid-1999 and people were just becoming more aware. The statistics from Autism Speaks at that time were from 1995, stating that 1 in 500 children would be affected by autism (which was changed to 1 in 250 by 2001)…unless a person was directly affected by knowing or having a child with autism, the easiest explanation we could ever give someone was, “Have you ever seen the movie Rain Man?”

…and Emmett is quite a bit like Raymond Babbitt on some days – but that’s another blog.

 I loved my son - so much I ached - but I kept thinking, “How the hell are we going to manage this?” Inside, I was completely falling apart, while outwardly I took action: setting up early childhood education intervention, calling for therapy services, scouring the Internet for information, taking him to see more doctors, reading books:  my motherhood instinct kicked into gear and I found my groove. 

Scot would take Emmett to an adaptive play group, where he could play – but Emmett didn’t play with other kids. He parallel played…played in the same room, but did his own thing. He lined things up, he flapped his hands, he laughed, he smiled, he threw tantrums. Emmett still didn’t talk, but we noticed something extraordinary: he knew the alphabet.

Not only did he know the alphabet, but he knew how to spell and we figured out that he also knew how to read. He was two years old - not even two and a half, we hadn't taught him how to read! What was going on? As luck would have it we were scheduled to take Emmett to the University of Iowa Hospital and Clinics in Iowa City to see Dr. Wacker at the Center for Disabilities and Development.  There, we expected to get a few more answers about Emmett and hopefully a few ideas of things we could do to help him. 

In Iowa City, Emmett was evaluated and observed, and we answered a ton of questions about him. In the end we received an array of puzzling diagnoses: PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified), Semantic - Pragmatic Disorder, and Hyperlexia. The PDD-NOS and the S-PD explained the autism, and the Hyperlexia explained his obsession with the alphabet, his ability to read/spell (though he still wasn’t speaking).  I began to realize that although Emmett had this great disability…he also had a great superpower. 

Could we tap into it?

(read more about Hyperlexia here: http://www.articlesbase.com/health-articles/understanding-hyperlexia-407915.html)

NEXT: Our first steps inside his beautiful mind…

Emmett's Buttons: An Autism Journey - Part 1

Suspecting that something may be developmentally “off” with your child is scary enough, but hearing the words “Your child has autism” can be devastating…

Emmett will be turning 16 on April 12^th. This month I plan on writing about some of the details of our journey with Emmett. Some of it might be in chronological order, some of it might be about some of the special gifts he has. But all of it will be about how blessed we all are to have Emmett in our lives.

 

Emmett was a great baby. I’d had a healthy pregnancy and a normal, all-natural childbirth with midwives. My husband, Scot, and I already had two healthy identical twin boys who were born 19 months before. Emmett was a cuddly and sweet child who’d hold my hand as he nursed, occasionally pulling his head back from my breast, milk dripping down his cheek, just to look me in the eyes and grin at me. He rolled over on time, he sat up on time, he crawled and walked on time…but as he grew we suspected that something just wasn’t right.

At first, my husband and I thought it was his hearing. Emmett had frequent ear infections as a baby. We would bring him in for a checkup, and his pediatrician would tell us he had an ear infection; most of the time he had no symptoms of an ear infection whatsoever.  One time we rushed him to the ER with blood running out of his ear: his eardrum had burst due to an infection.  We were referred to en ENT, who wanted to put tubes in Emmett’s ears.  A friend suggested taking Emmett to a chiropractor instead, just to see if it would make a difference. It made a HUGE difference – Emmett’s ear infections ceased almost immediately. Emmett was about 20 months old at this point.

But Emmett still wasn’t responding to his name. I would stand behind him as he sat in front of the television watching “Sesame Street” and I’d say his name, and he wouldn’t turn around. He also wasn’t trying to say words. He just didn’t seem interested in communicating with us or with other children. So we took him in to have his hearing tested.  The test came back normal. The ear infections hadn’t damaged his hearing. I was relieved…until they referred us to the psychologist.

Up until this point I was banking on having a hearing impaired child. I figured I could handle something like that, no problem. I’d just learn sign language and we’d navigate the world from there. 

But when are things ever that simple?

So when he was 25 months old we took Emmett in to see a psychologist. Over the course of several weeks she asked us questions about his health and development, took our family history, and had us fill out questionnaires.  She observed Emmett, interacted with him, watched us interact with him…it didn’t take long for her to come to us with a diagnosis. On a sunny afternoon in early June Scot and I heard the words that would change our lives forever:

“Emmett is autistic.”

The words hit me like a ton of bricks. By then, I’d had a suspicion. But hearing it confirmed by a professional only intensified the immense grief I felt at that moment.  All I could think about was my son and his uncertain future.  I felt guilt: what had I done wrong? How is this going to affect the family? How will my marriage survive? What will happen? What do I do next? Can I cure him? What do we do with him? 

We love him. We teach him. He loves us. He teaches us.

This was 14 years ago.

NEXT: Where do we go from here?