The Day Our Autism Journey Began

Do you remember the first day you suspected your child may have autism? I don’t remember the day, but I know exactly when our autism journey began.

Norrin was about sixteen months old when I first suspected something was “wrong.” I remember telling my mother I was concerned that Norrin wasn’t speaking. My mother waved my concerns away, she said I was just a new mom who read too many books. Joseph felt the same way and told me not to worry.

When I wondered out loud, if Norrin had autism – everyone told me that Norrin was just fine.

I wanted to believe them.

We took Norrin for his eighteen month check up with the pediatrician. And I told him I was concerned about Norrin, but the pediatrician also dismissed my concerns.

“Boys typically develop slower than girls…if he’s not talking by the time he turns two, then call this number,” he said and then scribbled down a number on a scrap of paper.

I wish I could say I ran home and dialed that number.

But I didn’t. I waited. I waited until January 21st – the day after Norrin’s second birthday. Norrin’s first appointment for the developmental pediatrician was scheduled six weeks later.

The moment I picked up that phone, was the first moment of my atypical motherhood.

During my six-week waiting period, I started reading about autism. And the more I read, the more I prepared myself for Norrin to be diagnosed.

Because based on what I read about autism, Norrin had all the signs.

I flipped through Norrin’s baby milestone calendar – you know the cutesy kind with the stickers to track baby’s firsts. I realized most of the stickers were still in their original place. I wasn’t too busy to mark the milestones, those milestones had never been met.

In addition to not speaking, Norrin never pointed, clapped or waved. He didn’t play peek-a-boo either.

Norrin also had the repetitive mannerisms associated with autism, in other words he was a “hand flapper.” All along I thought Norrin was pretending to conduct music like the kids on The Little Einsteins cartoon.

The day finally came when we met with the developmental pediatrician. After two hours of questions and observations, he recommended further evaluation.

We met with a social worker, a speech pathologist, a psychologist and had Norrin’s hearing checked. After two months of evaluations, the developmental pediatrician confirmed what I had suspected all along.

Norrin was diagnosed with autism in May of 2008 and was recommended for Early Intervention services.

By the time Norrin’s Early Intervention services started it was almost the end of June.

Eight whole months after I first expressed concern to Norrin’s regular pediatrician. Eight months wasted.

I blamed myself for a long time after Norrin was diagnosed. I blamed myself for waiting not listening to my initial gut instinct.

I felt like I had failed my child.

But even though I waited, we were lucky in the sense that there was still time. Early Intervention services are for children 0 to 3 years old. And I was determined to make the most of the time Norrin had left. Once Norrin got the services he needed and once I knew how Norrin needed to be taught, that guilt eventually subsided.

By September, Norrin had three words and could say a few letters. He learned to point his finger and clap his hands. He could also sign a few requests. And he laughed when we played peek-a-boo. He was making progress.

The #autism evaluation process wasn’t easy. It hurt to see all the things my child could not do. Click To Tweet

The autism evaluation process wasn’t easy. It hurt to see all the things my child could not do. It hurt to feel like I had done something wrong by waiting. And it hurt to hear the words: your child has autism.

But it felt amazing watching Norrin thrive. And I cherished and celebrated every single first, the way any new mom would. In fact, I cherished them even more because I knew how hard Norrin worked to meet the milestones that came so easily for other kids.

Since Norrin’s initial diagnosis, I’ve received calls and emails from friends who were concerned about their child’s development.

I’m not a doctor but my advice is always the same: If you have any doubt, do not wait.

Do not let anyone – not your mother, your husband or your doctor – dismiss your concerns. Trust your instincts. Take your child to see a developmental pediatrician as soon as you suspect something may be “wrong.” Do not wait until your child turns two.

I have seen too many parents wait too long and they miss the Early Intervention window. And for Norrin, Early Intervention was absolutely critical. He would not be where he is now, had it not been for those intensive early services.

I do not think of Early Invention as the beginning of his journey in special education. I think of Early Invention as the head start Norrin needed for the future he deserves.

And because it’s Flashback Friday and I’m flashing back, here’s an old video (from early 2009, shared from an old FB page) of Norrin spelling his name, writing his name (I’m doing hand over hand), he’s pointing his finger and answering some questions.

Posted by Li Quin on Sunday, March 8, 2009