The Best of Times … And the Worst

Puzzle HeartFrom the outset, my daughter was a gorgeous, easy baby. She gurgled contentedly in her bouncy seat and slept through the night at four weeks. I stared into her blue eyes and she was dazzling as the sun. My husband and I orbited her like a pair of pale moons.

Yet Katie wasn’t born under ordinary circumstances. Her birthmother had been in and out of jail due to a several-year-old minor drug conviction. I didn’t know the extent of her drug use, but I naively assumed it wasn’t much. I think it’s safe to say that any drug use is too much when you’re preparing to adopt.

Despite this, her birth was straightforward and uncomplicated. For a year we watched for signs of trouble I feared would come. But at every checkup Katie exceeded the developmental milestones. The doctor shrugged and said she’d flown under the radar. I took it as a sign. This was the child we were meant to have.

When Katie was 16 months old, she climbed into my lap with a book. As I read she babbled and trilled, but no matter how I encouraged her, she wouldn’t attempt a word. A knot lodged between my shoulder blades. It was hard to tell, but she seemed to understand everything I said and part argued there was no reason for concern. Katie had sat, crawled, and walked on schedule. She would talk when she was ready.

Two months later, Katie’s pediatrician asked if Katie could identify five body parts, and I said she knew fourteen. “I mix them up—just to make sure.”

The doctor laughed and assured me everything was fine. But as the months progressed and words never came, I couldn’t shake the suspicion something was wrong.


Katie was diagnosed with a speech delay at 26 months, then sensory processing disorder, then pervasive developmental delay—not otherwise specified (PDD-NOS). (This would later change to autism when I sought a second opinion.) My husband of twelve years, the troubled but charismatic man I considered my soul mate, moved out three weeks later. To say it was a rough time would be an understatement.

I longed to curl up in bed and hibernate, but I couldn’t. I had a child who needed me. I bottled up my tears and threw myself into Katie’s recovery, spending long nights reading books, websites, anything I could find.

About the time I filed for divorce, a few weeks after Katie’s third birthday, a friend asked how things were going. I said I was depressed, that when I looked into Katie’s eyes I saw an IQ boiling, just out of reach, and I wanted to smash something, anything, on her behalf. I couldn’t imagine facing each day trapped, the thoughts spilling over with nowhere to go. I was surprised to find myself in tears.

He nodded and I wished he could calm the emotional storm that threatened to capsize me. Just tell me, I wanted to say to him (or anyone who would listen). Just tell me what to do. I suspect that’s how most of us feel following an autism diagnosis. Please, someone, just give me the answers.

And the unfortunate truth: No one has them.

This is the reality of autism.

Until next time,
Cynthia Patton

About Cynthia J. Patton

Writer, Editor, Advocate, Speaker, Special Needs Attorney, and Autism Mom. Also the Founder and Chairperson of Autism A to Z, a nonprofit providing resources and solutions for life on the spectrum.
This entry was posted in Autism, My Life and tagged , , , , , . Bookmark the permalink.

6 Responses to The Best of Times … And the Worst

  1. Karen Hogan says:

    Great post, Cynthia.
    Robert McKee talks about the inciting incident, the incident that upends the character’s life and from which she struggles to right herself again. Story is a metaphor for life he says.
    One could say that your life got upeneded (do you think? the ironic voice enters).
    Life has a way of pitching us into the place we fear to go but probably really belong. Such as being Katie’s mother. I can’t imagine what her life would have been like had she not found you. And, what your life would have been like had you not found her. Easier, perhaps, but I suspect not as rich.
    Here’s to you for being willing to embrace a life of searching for the answers.

    • cjpatton says:

      Thank you, Karen. Yes, hard to know what my life would be like had Katie and I not found each other, but it would most definitely be less rich. And for that I am grateful.

  2. Lora King says:

    I am in awe and amazed at the woman you have become. I know we didn’t know each other that well growing up, but I can still see you smiling in band or choir. I can only imagine the fear, anger and pain you have endured since bringing Katie into your life. I can also imagine the joy and love that comes from loving so unconditionally.

    As a special education teacher, I have had the great joy and pleasure of working with many autistic children. It is so hard to know that they have so much to give and are trapped inside themselves. It is my prayer, hope and professional goal to do all I can to help break open these precious gems, these children with autism.

    I look forward to reading more of your work. Know that I am always here as a resource or a place to just vent or share questions or concerns, although I think I would do better to come to you for help and advice. I may give your blog out to parents I work with.

    Blessings on you and Katie….

    • cjpatton says:

      Thank you for the beautiful comments. One of the best things about having an autistic child is all the wonderful special ed teachers and therapists I have met as a result. All of you dedicated and hard-working individuals rock my world! Together I think we can “break open these precious gems.” Please do pass along my blog. One of my goals is to prevent parents from feeling the isolation I felt when Katie was first diagnosed. Thanks for everything you do.

  3. cjpatton says:

    I created the website myself. Thanks for the compliment. :)

  4. Can I simply say what a comfort to find somebody that truly understands what they are discussing over the internet. You certainly understand how to bring a problem to light and make it important. More and more people ought to read this and understand this side of your story. It’s surprising you are not more popular given that you surely possess the gift.

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>