Dark House of Hope {Diagnosis Spotlight: PDD-NOS}

This is day 11 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. Today, Meg Melnik is guest-posting about what life is like parenting her daughter who has PDD-NOS. 

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Many, many days I’ve spent wondering and hoping if my daughter, Hope would be able to mature physically, emotionally, mentally and spiritually. It’s not so terribly unusual. Most parents wish for their children to grow up happy and strong. The big difference being that my daughter, Hope suffers with autism. All the hope and dreams that came with our newborn child fell quiet as we searched for clues as to why she cried endlessly, why she couldn’t speak and why she couldn’t even look at us.

Answers eventually came when Hope was three years old. We received the diagnosis of Pervasive Developmental Disorder-Not Otherwise Specified. Huh? What does that mean? Psychiatrists, Behavioral Therapists, Speech Pathologists and endless other professionals answered my questions. PDD-NOS was a form of Hi-functioning Autism, which often accompanied sensory-issues.

The good news was that there were finally some answers. The bad news….It was too painful for her to exist in our world, too painful for her interact with us. The world was just too painful—period. So she hid away in her lonely, quiet world, where it didn’t hurt so much. It made sense to me to protect my child. After all, the world was so overwhelming; filled with noises that caused her pain. The only problem with my desire to protect her meant that she would not grow up healthy and strong as other children did. So we did as the Psychiatrists advised. We took her out, small doses, at first and built from there. But, disaster struck. We tried a trip to Wal-Mart, but we didn’t even make it out of the car. (Sigh) I went back home. “Take smaller steps,” the therapist said to me. A picnic in the front yard? But there were dogs barking down the street. (Sigh) We went back inside. “Smaller steps,” the therapist repeated, take her outside on your deck and hold her in your lap until you can sing the entire song, ‘Twinkle, Twinkle Little Star.”

As I opened the sliding glass doors, a breeze blew across Hope’s cheek. Hope let out a whimper of protest, but I ignored her protests and boldly carried her out onto the deck. Screams erupted from Hope, as if I was peeling her skin off. She squirmed, pushed, and kicked—anything to be out of the arms that had betrayed her.

“Hope, listen to the birdies,” I encouraged. “Let’s sing like the birdies—Twinkle…twinkle…”

I was only two words into the song, when she managed to twist herself out of my arms and terrified ran back into the house.

“Good, good!” my therapist encouraged. “Try it again tomorrow.”

I was incredulous, why would I cause her so much anguish again. She knowingly answered my unspoken questions.

“If you don’t push her beyond her boundaries, she’ll always be afraid of what she doesn’t understand.”

The next day, we tried again—still erupting into hysterics. After a week of trying, I was able to finish the line, “Twinkle, twinkle little star how I wonder what you are.” I was so happy, but exhausted.

Were all these tears really worth it? How much effort would be involved in simply getting my child to exist outside of our house?

‘Small steps’ the words of my therapist still echoed in my head.

Exactly how many small steps am I going to have to take?? I wondered.

Eventually after many months and many, many, small steps, Hope did learn to overcome her sensory over-stimulation. But, there were many other large hurdles to overcome. Always, that same refrain would ring in my ears—one small step at a time, and then reward her (and myself) for that small step that she was able to take. Instead of seeing the world for what she has not accomplished, see the world for what she has done.

It was years later, when we were stumbling through other issues with my beautiful Hope, when I would receive an image which would help me continue on. It was late one night and I had rented a movie. It was the sort of chick-flick, romantic film that my husband hated, but I tended to get lost in. My children were in bed and it had been a long week, so I was looking forward to some escapism. My husband asked if he could pass this one up. “Okay fine,” I said. “Go on to bed.”

While the film started out fine, it had a dark and despairing theme, which left me on edge. I finished watching it, but as I turned off the family room lights, I realized that my husband had turned off all the other lights in the house. I was left to feel my way up the stairs in my dark house. To say that my house was dark was a bit of an understatement. A more accurate assessment would be to say I had no vision in front of my eyes, even as I waited for my eyes to adjust to the dim lighting. There was simply no light to break through the blackness. Carefully, I felt my way along the wall as my feet sought the top of each step. I realized that I had reached the top of the stairs, when there were no more steps for my feet to climb. I knew I was in my kitchen, when I felt the tile floor with my bare toes. But, still…the world around me was black. Should I move forward or would I bump into the wall?? I sought out any source of light, which would tell me how to move. Finally, there was some pale moonlight glowing from the window in the back bedroom. Thank you God—there was a sense of direction. I managed to find my way to my bed, climbed in and felt safe; quite thankful for the pale moonlight which guided my steps.

In my final sleepy thoughts, I realized there was something familiar about that journey up the stairs. My journey with my daughter carried the same blindness, the same groping for answers, the same stumbles and getting up. This single thought gave me great hope:

At the bottom of the stairs, I had to trust that the light would come – only if I moved forward.

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Meg and her husband currently live in Frederick, MD . They have been blessed with two beautiful daughters, Hope is 15 years old and Jillian is 13 years old. Twelve years ago, when Hope was three years old, she was diagnosed with PDD-NOS or Hi-Functioning Autism. Since then, they’ve been on a journey of discovery and growth. Meg loves to spend time with her family. She also volunteers helping special needs children at her church, reading and cooking. Meg is passionate about offering hope and support to families with a special needs loved one. To all of these families that read and are touched by our messages, please know that you are not alone.