Voices of Autism: Milestones

Every day throughout April–Autism Awareness Month–we will be featuring a different reader-submitted story about living with autism. Today’s story was written by Pam Byrne, mother of Alex, 19, and author of the blog One Autism Moms Notes:

Last summer, as I was reorganizing some drawers and closets, I ran across my son Alex’s baby book. I hadn’t looked at it for years and had forgotten how carefully I had recorded the events of his first year, describing his first trips, Christmas, birthday, and other events in detail. During those first 12 months, Alex met his major developmental motor milestones within the normal range. According to my notes, Alex first turned over at two-and-a-half months, sat up alone at seven months, began to crawl at eight-and-a-half months, and took his first step around his first birthday.

What is more revealing, however, is to note the blanks I have left in his baby book: “Mother was first recognized at age___, ” Father was first recognized at age ___,” “That little hand first reached for ___ at age ___,” and “The very first word spoken was ___, and it was said at age ___.” Now I realize that these were all red flags pointing to autism, but I kept waiting, hoping to fill in the blanks.

I have heard from other mothers of children with autism that they, like me, could no longer write in their children’s baby books once they suspected something was wrong. After getting a diagnosis of autism, some put their baby books away, as I did, partly because we were too busy helping our children get better, but partly because we were overwhelmed by uncertainty as to what the future might hold for those babies.

Near the end of the baby book, I found a brief narrative that I wrote a few years after Alex was diagnosed with autism, summarizing what had transpired during those years I left spaces blank. I wrote the following explanation for what had happened to Alex: ”At age 4, Alex was diagnosed with hyperlexia, an autism spectrum disorder characterized by precocious reading skills. (Alex began reading at age 3) and delayed language and social skills. He began speech therapy at age 4 years, three months, and he began occupational therapy for delayed fine motor skills and sensory defensiveness at age 4 years, 10 months.”

The objectivity in this description belies the range of emotions I have felt through the years in dealing with autism. Had I known what I know now when I wrote that paragraph, I could have faced the future with far less fear and even greater hope. Whenever I consider what the future holds for Alex, I remember that he eventually learned to recognize my husband and me, reach for things he wanted, and speak thousands of words. While Alex masters skills on his on his own time table, God teaches us patience. With anticipation and faith, we wait for the next milestone to be met and celebrate how far he has already come.

To read previous stories in this series, click here. For instructions on how to submit your story, click here.

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  1. by A. Sheposh

    On April 22, 2011 at 10:51 am

    Very inciteful. Thanks!

  2. by Alysia

    On April 22, 2011 at 11:33 am

    Thank you for sharing this. Our baby book ends at 4 months old when things were so hard. It’s nice to read that I’m not the only one, and as someone just starting this journey, your words are so helpful to read.

  3. by Lynn

    On April 22, 2011 at 10:43 pm

    I stopped writing in the baby book right around the same time that I pitched my copy of “What to Expect the Toddler Years”. It’s so hard for me to even articulate milestones on the reams of forms that we are always asked to fill out. When did she crawl? Well, she scooted on her butt at about a year, and then leap-frogged until about 19 months when she finally started to crawl “right”, eg: reciprocally. We never have short answers do we? There is usually not enough room on the form or in the baby book for my long stories :)

  4. by Ross Coe

    On April 23, 2011 at 4:28 pm

    Were these children vaccinated? Funny, no mention. No doubt part of the cover up. Many writers seek out the parents who don’t understand the connection, or call it a gift and other nonsense responses. If you mention vaccines you get one and only one response, Wakefield. His story has been twisted and made unrecognizable, but somehow its become a fraudulent explanation why vaccines don’t cause autisn. Anyone who does real research knows there is no proof vaccines are not involved. But many accept Pharma’s claim vaccines are not involved just because they say so.

  5. by Berthajane Vandegrift

    On April 23, 2011 at 5:31 pm

    My autistic son is now 54, and I never stopped recording his acchievements. I tried, but I was never able to overcome my regret that he didn’t grow up to live an self-sufficient life. He had a happy childhood, and he is a sweet, contened adult. I don’t think he has ever regreted his nature. My son was diagnosed in the days when autism was thought to be caused by “maternal rejection” and the treatment was psychotherapy for mother. Our story can be read at:

    http://30145.myauthorsite.com/

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