Trella, CJ & Orlando

Hello World,

This post is written by Trella Stringer Crawford.  Although we both attended the University of Georgia at the same time, we never met.  Actually, we “met” through a UGA social media Web site similar to Facebook and have become fast friends through our love of writing. 

Please read Trella’s poignant story about her journey into autism and of course, comment 🙂 .

This is my truth: I am the mother of a child with autism.  Nine simple words; yet, these words encompass many emotions for me – pride, fear, disappointment, worry, confusion, joy, pain, and perseverance.  More importantly, these words remind me that God has chosen me to raise one of his special angels – not a role I might have selected but one I realize is God’s purpose for me.

You’ve probably seen the public service announcements with Toni Braxton or billboards and news stories about autism and wondered what autism is. According to the National Institute of Neurological Disorders and Stroke fact sheet, autism is a neurological and developmental disorder defined by difficulties with social interaction, verbal and nonverbal communication problems, repetitive behaviors and narrow, obsessive interests.  This disorder affects one in 150 children and seems to affect boys four times more than girls. 

My journey into autism began on January 31,^, 2005.  After eight years of marriage, my husband and I were blessed with the arrival of Orlando Augustus Crawford, IV.  It was such a regal sounding name for a little baby, according to the neonatologist. We thought so, too, and decreed that CJ was a more appropriate moniker to distinguish him from all the other Orlandos in the family. Our little boy was perfect and healthy in every way; however, he spent seven days in the neonatal intensive care unit because he had a neonatal seizure. Still, he seemed to flourish and thrive after that, meeting all of his milestones well ahead of schedule.  He walked at ten months old and could use a spoon by the time he was a year old.  

However, I noticed that while my son was thriving in many areas, he still was not talking.  I also noticed that he was not responding when his name was called.  By the time CJ was 15 months, I began to realize that something was not right. I mentioned this to his pediatrician at his checkup, and she felt that he was just a late bloomer with language.  Still, my motherly instincts had kicked in, and I knew that something was going on with my child. We had his hearing checked and everything came back all clear.  Then, I started to notice other things like CJ biting himself or having violent, inconsolable temper tantrums.  He also had a fascination with eating non-food items (called pica).  

As my son was going into the “Terrible Twos,” I rationalized his behavior.  Still, restlessness in my soul persisted. I felt like God was trying to tell me something.  However, as anyone will attest who has ever heard my testimony, I don’t always listen to God’s subtle hints, and He often has to give me the in-your-face treatment.  Every time I drove I kept seeing billboards with AUTISM splashed on them, proclaiming “1 in 166” (it’s now 1 in 150) children. These billboards leapt out at me in brilliant and bold colors.  Every time I turned on the television, there were the autism PSAs.   Finally, I asked out loud, “Lord, what are you trying to tell me?”

I began researching online and found an autism symptom checklist. As I perused the checklist, I felt like I was reading about my own child.   My whole world shifted.  I had only voiced my suspicions to my mother at this point and didn’t have a name for what was wrong with my child.  All I could tell her was that I thought CJ was “special.”  I knew that I needed to approach my husband with my concerns but didn’t know how to tell him that I suspected our only child-the son named after him, his father, and his father’s father- had a disorder that I was only aware of because of the movie, Rain Man.  As expected, my husband did not initially react well to my suspicions.  After he thought about what I said, though, my husband listened to my concerns. 

However, it wasn’t until CJ was 32 months old (17 months since I first noticed differences in my child) that we even mentioned anything about getting CJ screened for autism.  My husband took CJ in for a sinus infection, and I insisted that my husband ask his pediatrician for an autism screening.   She referred us to our state’s Early Intervention program and that’s when things began to happen quickly. 

CJ

On December 4, 2007, a day I will never forget, our son was officially diagnosed with autism.  I was relieved because I finally had a name for what was plaguing my child. I also felt profound grief and loss.  I grieved for the typical child I’d never have. I grieved for the loss of all of the hopes and dreams I had for him.  I grieved for the struggles and challenges that I knew were ahead for our family. 

I would love to say that I turned to my faith in God and His ability to carry me through the storm. Instead, I was angry, hurt, and devastated. I remember ranting at God and asking him, “Why?”  I tried bargaining with God to make my child “normal.”  There were even times when I prayed for forgiveness because I felt like CJ’s condition was punishment for some past sin. 

One night, after an especially rough night with CJ (erratic sleep patterns and bedtime tantrums happen often), I was at my wits end.  I was exhausted, and I felt like I had no way out.  I was frustrated with myself because of my lack of patience in handling my child.  I remember thinking that I needed the patience of Job.  We all know the story of Job – the purest example of faith, obedience, patience, and redemption.  Job’s story is one of my favorite Bible stories; yet, I’ve occasionally and jokingly coined myself the “anti-Job” because of my lack of patience.  That night at 3- something in the morning, with tears in my eyes, I opened my Bible for the first time in over a year. I turned to the book of Job, and there was the epiphany.

Job lost everything but through it all, he continued to trust in God completely and wholly.   That’s what I needed to do — trust in God completely and wholly.  I needed to be patient that He was going to provide my CJ and us with everything we needed.  That night I gained a sense of purpose and shifted my thinking.  Instead of worrying about my child being “normal” to others, I began to focus on making the world “normal” for him. I stopped grieving for what I thought I had lost and began to appreciate the things that I had gained. Keeping this focus is an ongoing process, but when I feel discouraged, I turn to Job.

My child is now four years old and is in his second year of preschool. He has an amazing teacher who has a high success rate working with special needs children and particularly, autistic children.  That very same teacher introduced us to a wonderful woman named Jill who has experience working with autistic children and providing Applied Behavioral Analysis therapy.  CJ has been with Jill since October 2008, and the changes we’ve seen in our child have been exponential.  Upon reflection, I understand that my journey with CJ and this thing called autism has been carefully orchestrated by God to put the right people in our lives at the right place and the right time.   I also realize that God has allowed me to find my voice in advocacy.  I have quietly supported many causes over the years, but I’ve found my voice getting louder and stronger as I support an issue that is not just a cause for me but the reality of my life. 

This is my truth: I am the mother of a child with autism.  Nine simple words; yet, words I have come to accept and words of honor because God chose me as this child’s champion.

 For more information, go to www.autismspeaks.org.

Any thoughts?