Unplanned Journey
Adoption, Autism, and a Life Worth Saving
Acknowledgments
Writing a book is harder and more time consuming than I ever could have imagined. It would not have been possible without the help of my Mother in the Lord, Vernell Davis. She was my source of encouragement until she went home to be with the Lord.
I remember precisely the day that I received instruction to begin writing. It was wintertime and bitterly cold outside. It was nearly 7:00 p.m.—time for Vernell to dismiss the college class. Turning to me, she said, “I believe the Lord would have you share your story.” Drawing one hand to her chin, she paused momentarily to consider the matter. Then, she said, “Yes, you are to write a book.” Fully aware of my own limitations, a doubtful expression appeared upon my face. “The Lord’s equipping will follow his call,” Vernell assured, and thus the work began. Her passing was a great personal loss.
To my trusted friend, Jerry Brinker, I thank you for believing in the call of God upon our lives, especially Riley’s, when it was yet to be seen. May the Lord reward you richly.
To my dear friend Terri Carpentier, who prayed faithfully that the Lord would inspire my writing as I filled each page, you have been such a blessing. May the Lord bless and keep you always.
To Kenna Boyce and Choices Network, Inc., your unwavering support in Riley’s life has been a real godsend and I wish to say “thank you!”
Introduction
It should come as no surprise that there is no cure for autism.” That’s what I was told. In fact, all the therapists and doctors said something similar. They were wrong! But I didn’t know that until two years after the baby that my husband and I adopted was diagnosed with autism.
At first, you don’t want to acknowledge that your child has autism because you had hoped with your entire being that he/she would be healthy. Yet you know that something is wrong. After getting through the denial stage, you experience great sadness and deep remorse because all the plans and dreams you had for your child were shattered during the initial therapy session.
Almost overnight, you’re plunged into a world vastly different from the one you’re accustomed to. Terms such as “autism spectrum disorder, nonverbal communication, developmental disabilities, behavior analysis therapy, transitions and cognitive adjustments, repetitive behaviors, modeling, meltdowns, sensory processing, bolting, etc.” are commonly used expressions in the mental health field—a language completely foreign to you. There is a ton of new information to assimilate.
You turn to your partner because you need his support—you need to know that he has your back. Not knowing what to say, he stares at you blankly before leaving the room. You try talking to family, friends, and even strangers, but most are coldly indifferent to your situation. This was my induction into the world of autism.
Our son was three years old when we received his autism diagnosis. Unwilling to raise a non-typical child, my husband of eight years filed for divorce, leaving me with the immense responsibility of caring for our son and finding the support and stability that I needed—a full-time job.
Before long, I was overwhelmed and contemplating whether or not l could actually raise my son alone. I needed someone to understand what I was going through! I needed answers! | vii |
So, I turned to the most trustworthy person I knew—my heavenly father. Having fashioned my son in the womb, God loved him more than I’ll ever be capable of loving him. Bearing this in mind, I boldly approached the throne of grace.
I wanted to know why my son’s facial features showed his disorder. Why did he avoid direct eye contact? Why was he well-behaved one minute and out of control the next? Why was his diet so bizarre? Why was he so aggressive at times? Why did he bully other children? Why didn’t he talk?
I must have asked God a hundred questions pertaining to autism. Like King Solomon, I asked for wisdom as well—wisdom to be a mother and strength to endure the race of parenting an autistic child. Gradually God answered all of my questions, including the mystery of why the color of my son’s eyes changed occasionally.
In this book, you will learn the value of advocating for a child with disabilities in the areas of personal growth, development, and education. You also will discover how my son’s life was transformed through prayer, faith, and a miraculous encounter with God. You will see that a child with autism is, indeed, a life worth saving.
10 Autism Diagnosis
By now, Mrs. Waggoner, Riley’s teacher, encouraged me regularly to find a school placement geared toward meeting Riley’s specific needs. In her opinion, this was his best chance for success. Not knowing where to turn for help, I politely thanked her each time, and vowed to consider the advice.
It had been some weeks since the screening at The Heartland Developmental Clinic. Just when I had started to wonder why I hadn’t heard anything, I received a call from Connie Thiel, the school social worker for Central Kansas Cooperative in Education. She informed me that Heartland had recommended that Riley be further evaluated in his familiar home setting and that Dr. Lonnie Parker, the District Evaluational Physiologist, was available to meet with us when convenient.
At this point, I became alarmed. Why would someone need to come into the home to observe my son? I was never told what to expect or even the nature of the screening. I must admit that I was opposed to opening my door to a perfect stranger.
After much contemplation, I scheduled the appointment with Dr. Parker. Making himself at home, he sat on the living-room floor with Riley. Visualizing objects, making comparisons and deductions, counting, and color recognition made up the scope of their interaction. After mastering half a dozen or so puzzles, he complimented Riley on his reasoning skills by defining them as impressive.
The observation had lasted only thirty minutes. Apart from the puzzles, Dr. Parker had difficulty keeping Riley’s attention. Excusing himself,
he told Riley that he needed to visit with Mom and Dad for a bit and asked that we gather around the kitchen table.
Initiating the conversation, Dr. Parker surmised that Riley was autistic. In his experience, poor eye contact, regressed social skills, and severe language delays were distinct indicators of the disorder. Reading from one side of the sheet of paper lying directly in front of him, and then the other, Dr. Parker asked a multitude of questions, pausing briefly after each to record my answers.
I couldn’t help but wonder if revealing the gross extent of Riley’s behavioral issues was the correct thing to do. What image was I painting in Dr. Parker’s mind? Near the end of the questioning, he’d asked us to identify Riley’s strengths. This was the easy part. So often I had watched the wheels in his mind turning as he created massive structures using blocks and books that stretched from one end of the living room to the other. I marveled at the care and patience he exhibited when placing each piece. It would sometimes take ten or more tries to stabilize an individual piece, but he never gave up or became frustrated. Most adults don’t display this level of endurance.
I finished up by adding that Riley could be polite and helpful, and even loving at times, especially when he was tired. Looking at Jack, Dr. Parker waited for a response, but Jack didn’t reciprocate; in fact, he hadn’t spoken a single word since Dr. Parker’s arrival. I still don’t understand Jack’s unwillingness to assist me that day.
When preparing to leave, Dr. Parker stated that he would contact us again with the results of his analysis. He felt that Riley would benefit from a more restricted environment and suggested that we consider Heartland Programs, which at the time, was a comprehensive, early education program where services were provided for children with, but not limited to, special needs.
Dr. Parker’s prediction couldn’t have been bleaker. To be honest, my first reaction was shell shock. Since bringing Riley home, I knew that there was something different about him, and yet I wasn’t expecting to hear this. I had witnessed the impacts of autism on Lillian’s family
since her son was first diagnosed with the disorder twelve years earlier. The disability had put an enormous strain on her marriage, but she and her husband, Joe, had each other for support—something I couldn’t be sure of with Jack. Time would tell whether or not Dr. Parker’s prediction would hold true.
Purposely confrontational, Jack’s nitpicking annoyed me to no end. In recent weeks, even the shoes I wore were bothersome to him. Knowing that all the little digs were his way of disassociating himself didn’t make them any less hurtful. By now he’d become too self-centered to even realize that I needed help with Riley, and Riley needed both of us. Besides, as Riley’s father, he needed to take responsibility for his child. Still, I had an increasing awareness that he had begun to view Riley as an emotional and financial burden, and this frightened me.
Even so, I was able to convince him to complete the forms that Dr. Mick had provided during Riley’s second session. Four persons: Lillian, Mrs. Waggoner, Jack, and I, were directed to answer the ninety-nine questions independently. The information provided would assist Dr. Mick in determining the cause of Riley’s abnormal behavior. While awaiting a definitive diagnosis, I hoped and prayed with all my might that things wouldn’t be as grim as Dr. Parker had predicted.
Some days later, I received the phone call that I had been dreading. Dr. Parker had completed the evaluation and was prepared to deliver the results at my discretion. Ever since his initial visit, a feeling of dread had settled over me.
Upon greeting one another I directed him to the table where he and I had previously sat. Jack did not wish to participate in this meeting. Without delay, Dr. Parker reached into his briefcase and withdrew his report. He placed a copy before me. I read the title “Child Behavior Checklist (CBCL),” aloud.
I continued reading the first paragraph. “The CBCL/1.5 to 5 (years of age) is a widely used parent-completed questionnaire that obtains the ratings of 99 problem items. In addition, it includes descriptions of the problems, what concerns parents most about their child, as well as the
