Guest Post with CeJe Thompson Hearn: A Decade of God's Grace

A decade, ten years, that is how long my family has been on the Autism journey. I like to believe that I am not old. However, in the Autism world, I am ancient. Zachary was first labeled “Autistic” at three years old. Shockingly, this diagnosis was actually somewhat okay with us. I had been called “nuts” by so many pediatricians there was almost some redemption in a label. I remember when he got the diagnosis, walking out of Children’s Hospital with my Mom. I put Zach in his car seat and then I walked to the front of our car and just looked over the edge of the parking deck. It was a beautiful day and I remember breathing deeply and holding my breath for a moment, letting it out, and looking at Mom and with full determination saying, “I wanted answers. We have answers. Now we know what to do.” Looking back, that breath and statement of assurance was probably one of the most hilarious moments of my life. I had no idea the path we were about to walk down, what my child would require from us and what would be required of him. However, even then I was aware that the diagnosis of Autism changed everything about how I saw my own child.

Autism is a more common diagnosis now. I do not say that to belittle the diagnosis. I say that to applaud all that has been done in the form of research. Just last year, the Alabama Legislature passed historic insurance reform led by the late Jim Patterson who Zach was privileged to meet during the discussion phase of that bill and before that during Leni’s Law. (Yes my 13 year old is cool enough to hang in Montgomery haha) Yet, at the time of Zach’s diagnosis, Autism was rare. We didn’t know about Autism and despite what I’d said, we had no clue “what to do”, we just knew we weren’t going down without a fight. We quickly discovered that all of the therapies we needed were going to require us to win the lottery or rob a bank. Zach needed speech therapy, physical therapy, occupational therapy, play therapy and he could also possibly benefit from music therapy and equine therapy. $$$. We were encouraged to get a DAN (Defeat Autism Now) Doctor, which was only located in Georgia, and didn’t take our insurance, so we did it. Zach went through another round of terrible testing that designed for him a special diet of foods only Hollywood millionaires could afford to maintain. Yet, we did it all. You see, we were before Autism was prevalent in schools and churches and even public. My family was on a hamster wheel willing to run as long as it took, and ready to spend every dime we had to “fix” our child. Writing that sentence and remembering all we put him through breaks my heart.

I wasted Zach’s childhood in many ways. For six years I spent so much time wanting society’s picture perfect child, that I missed God’s perfect picture. I wanted to hear, “I love you”. I wanted my child to read me his first book. I wanted to fuss about going to baseball practices and say “no” to a spend the night party. I wanted Zach to be invited to a party - he never has without his sister. I wanted to hold a real report card without an IEP evaluation. I wanted us all to sleep and eat and go places like normal families. So, I focused on these things and “fixing” them. I also prayed God would change Zach to be like other “normal” kids. I am again ashamed, but I’m being honest. I missed the beauty of my life with my son because of an inability to seek God’s will for his life instead of my own. Like I could know better than my child’s creator?!

Then one day we realized Autism was not our only issue. Zach also had a very life-threatening illness. That’s when I woke up. I was broken and thrown into a place where I was forced to recognize what was really important, Zach, just the human-being Zach. He was my God-given gift; just as he was; God didn’t want me to make him into something else. If God had needed someone different he would have made someone different. I was to treasure what I had been given, an absolutely gorgeous child. He didn’t say, “I love you,” but instead I learned that if I say it, and watch he will squint his little eyes and touch my face to tell me back. He will still cuddle in my lap at 13. We do therapies at school and in summer, but we have quit torturing this child with every new idea that comes along. Zach didn’t need to be fixed, we did. God knew that, and Zach was given to help us. When I finally realized this fact, I remember thinking so clearly, “I want to meet my child.” He was also sick and I didn’t want to lose him and never know him. So I became Mommy, not therapist. I watched “Cars” and “Milo and Otis” 10,000 times. I learned to flip flash cards, Zach’s favorite stem. Then, eventually, I would be brought cards, the same cards, daily. We had our first game. I had become a Mom and I had let my child become a boy instead of a medical project.

I am now thankful for Autism. We were told all of the bad things about Autism; no sleep, no social life, marital problems and money problems are guaranteed; yep they are all there... Nonetheless, nobody tells the good stuff. We have had a lot to laugh at. Our marriage has been made stronger. Our daughter has learned empathy and kindness that is extraordinary for a child her age. We have been humbled as we are forced to realize “perfection” isn’t always possible, “normal” is relative and sometimes you must ask for help. We have also seen that many people are very good. Lastly, and most importantly, we have learned God is faithful. Psalm 86:15 says, But you, O Lord, are a God merciful and gracious, slow to anger and abounding in steadfast love and faithfulness. He has seen us through every step of this crazy journey and given us the world’s most perfect tour guide to carry us along the way. We have truly experienced a decade of God’s grace in action.

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Guest Post with CeJe Thompson Hearn: A Decade of God's Grace