Where the Journey Began

Warning: Long post ahead, but a must read.

I am frequently asked when and how I knew Keelie had autism. I feel that to truly explain I need to really elaborate because, well, the truth is, the signs were there for quite some time before I clued in. So I'll start before the journey began.

After Aiden was born, Aaron and I both wanted a break before having another child. That break didn't last long though before we both felt the prompting to try again for another baby. I say prompting because that's exactly what it was. It was a whispering to my soul, an urgency felt by both Aaron and myself.

We had a feeling it would take a while to conceive, so in the interim, we planned a vacation to Japan. Alone. With no children. Two weeks after returning home, I found out I was pregnant. Keelie was on her way. Early on we agreed that we would only consider having another child if this pregnancy went well. That question was answered 31 weeks into the pregnancy when, after having some back pain, the doctor informed me that I was in preterm labor and needed to go on bed rest. Bed rest. For three weeks. With three young children at home to care for. Yeah, right!

It was at this time that the doctor also prescribed some medication (terbutaline) to stop the contractions I was having and I received two large shots of steroids into my buttocks to help Keelie's lungs mature rapidly if labor didn't stop. Fortunately the labor did stop and I only had to take the medication a few times to stop contractions. Harmless, right? Well, maybe not.

At about 35 weeks of pregnancy, during a routine office visit, the doctor placed the Doppler on my stomach to measure Keelie's heart rate. 200 + beats per minute. Too fast. For a full minute the doctor listened to Keelie's heart just waiting for it to slow down. It didn't. "Did you take your terbutaline this morning?" he asked with a look of concern on his face. I responded with a proud No, so happy that I hadn't needed it. "Well, your baby's heart rate is a little too fast. Usually it'll slow down after a minute or two. We'll just go on with the exam and check the heart rate when we're finished."

Now I was worried. What was wrong now? What was happening to my baby?

After the exam was finished, the doctor placed the Doppler on my belly again. The heart rate had dropped to about 180 beats per minute. Still fast, but acceptable. He let me go home, but the look on his face remained concerned. I tried to shoo the worries out of my mind.

Keelie was born two-and-a-half weeks later, healthy as far as we could tell. Her heart rate did soar to 200+ bpm during labor, but no one seemed concerned at the time.

Once home, Keelie soon adopted the nickname Angel Baby. She was so good, so peaceful. She slept well; she ate well. She was a happy and content little angel. But one thing did bother Aaron: Whenever we took Keelie for car rides, she would sit in her car seat for hours on end without an utterance of complaint. "That's just not normal," he insisted. But I just thought it was one of the Lord's tender mercies, a child that actually liked to be fastened into a car seat.

At around nine months of age, Keelie began what we affectionately called "Crazy eye". She would roll her eyes to the side as if to look out of just the farthest corner of her field of vision. She began doing it so much that total strangers would ask what she was doing. "Oh, she's giving you the crazy eye," we'd respond. Other's knew what this meant, that this was a sign of autism, but they didn't say anything--to us, that is.

At ten month's of age, Keelie began having these little jerking movements. I first noticed it while she was sitting up in her high chair. I figured that she was still young and learning motor control. I didn't let the jerking concern me at all. But at the age of one, Keelie only just began to crawl. When all of the other kids were walking, standing and cruising, Keelie was only beginning to rock on her hands and knees and slowly propel herself forward. Add to that the fact that all three of my older children were beginning to use words at the age of one. Keelie hadn't even began babbling. Still, I wasn't phased. "She'll learn at her own rate," I told myself and any one who questioned.

About this time, Aaron picked up Three Weeks With My Brother by Nicholas Sparks. He devoured the book and quickly handed it off to me saying, "You've go to read this." I did. In the book, the author discusses his son's diagnosis of a form of autism. He describes in heart-wrenching detail his son's behaviors, getting the diagnosis, and what the family did to help their son. "I don't ever want to go through that," I said to Aaron after reading about their trial. Just a few short months later, I was eating my words.

The next month, while sitting in church with Keelie on my lap, I felt her suddenly jerk forward. Her whole body tensed with the motion. Then she did it again, and again. Four times in one hour, I felt her little body tense up and jerk forward. What I had thought was a result of poor motor control was definitely something more. "I think she's having seizures," I confessed to my husband before making an appointment with the doctor. Over the next few weeks while we waited for our appointment, these jerking episodes grew worse and worse. Suddenly the jerking was so bad that Keelie couldn't even hold a bottle in her hand without launching it across the room as her body lurched forward.

When the appointment with the doctor actually came, I was calm as I explained to him what was happening. He began to type away on his computer before I could even finish my explanation and what I read over his shoulder sent my world reeling. As I read over his shoulder the only words that seemed legible to me were the words Seizures and Mental Retardation. No, I told myself, not my child. Denial set in instantly.

He handed me a card and told me to contact Davis County Early Intervention. I shrugged, took the card, and dutifully called the office when I got home. They quickly set up an appointment and sent me a large questionnaire to fill out about my daughter's behaviors, habits and abilities. I filled it out, but being that I was in denial, I don't know how honestly I answered the questions. Does your child make eye contact with you? (Recalling "crazy eye" and quickly banishing the thought from my mind.) Well, sure she does. Does she like to be held? Oh, yes. Does she play with toys? ... Um ... Well now that's a hard one. Does your child know who her parents are and show stranger anxiety? I couldn't answer. Wouldn't answer. My own daughter didn't even know who I was, and that I could not accept.

As I drove to the early intervention office for our appointment, I had settled in my mind that they would tell me that she was mildly delayed and to come back in three months for further evaluation. Well, that's not what happened. After they tested Keelie, watching her, offering her toys and recording her reactions, they sat down on the floor around the rocking chair where I was seated. "Your daughter in moderately to severely delayed on every level," they told me without batting an eye. "She qualifies for our services and we'll begin therapy immediately."

I asked if she would catch up, dreaming that after a few months, maybe a year, of therapy, she'd be right on track with the other kids her age. They just looked at each other and answered, "Well, we've seen some amazing things."

What? No.

As I drove home, the grief washed over me like storm-tossed waves. I had the radio on and as Natalie Merchant sang "Trouble Me, " I had to pull over. I cried, my head against the steering wheel while I listened to the words, Why let your shoulders bend underneath this burden when my back is sturdy and strong. Trouble me. And then I prayed.

Later, we asked Aaron's dad to give Keelie a priesthood blessing. During the prayer I listened for those words, those promises of healing. I waited for him to utter the words that meant she would be healed of this. They never came. Instead, I heard, "She will touch the lives of all those she comes in contact with." And I knew. The journey had begun. We were taking the first steps. Or had we taken the first steps a year ago with out realizing it?

It would take over a year and thousands of dollars to get the autism diagnosis, and still, that diagnosis is in question. But none of that matters now. We are on this journey, and loving it. And that is all that matters.