The Beauty of an Unexpected Life
Dealing daily with the unexpected, never knowing or understanding when, what or where this mystery began, hoping for God’s grace to carry you from day to day and that society will learn to understand what may not be understood… This is the reality for my family as we live with autism.
In 2014, after failed attempts and much prayer, my husband and I were blessed with a son, Caleb. He was perfect to us. He was healthy and had ten fingers and ten toes. At that moment, nothing else mattered. We marveled over his every move! We videoed every smile, bath, laugh and even some crying. As a mother of advanced age with adult children, I watched milestones and tried to assure his development was on track. He met or exceeded all goals for his age until he was about 18 months old. I was faced with a word that I now know no mother wants to hear or say when talking about their children. Our son had “regressed!”
Regression in speech was the first thing I noticed. My baby, who could already spell his name and many other words, was no longer using his words. I was devasted! I didn’t know if this was a phase or if I should be worried. I no longer experienced the joy of hearing him say “Maaa” which he previously had so affectionally called me. Daddy would no longer hear him say, “Do it!” or “Go get it!” for what seemed like an eternity. Many friends would tell us it would be okay, but my heart didn’t say it was going to be ok. Why was this happening to my perfect little boy?
I expressed my concerns to medical professionals, but I was instructed to wait until he was three years old to seek therapy for his speech. I went against the medical advice I was given and made an appointment at a local speech therapy clinic to have him evaluated! Of course, as I feared, he qualified for services. My prayer was that this would be the end of our journey, but it wasn’t. Occupational therapy was also added.
At this point, I ran through his entire life in my head from pregnancy to birth, then from birth until the day he stopped speaking. I questioned if I had made a mistake. Had I taken something during my pregnancy? Did he bump his head? Did I wait too long to check on ear infections? No matter the question, I could not find the answer.
One day I reached out to a friend who is a speech therapist. I told her I wanted to talk and visit the facility where she worked. She agreed to meet with me and gave me a tour. I asked her if she knew of anything that would help my son. I told her about our journey, and she suggested I try to get an appointment at the Dennis Developmental Center in Little Rock. I had never heard of this place, but I needed answers. So, I called and made an appointment but was told our wait would be six months or longer. Would I get answers? If I did, would I be able to handle what I would hear?
After an excruciatingly long wait, the day finally came to head to Little Rock for our appointment. By this time, I had been blessed with another child. We decided going early would ease stress and we would add an extra day to the trip for fun. The night before we left, I searched for a movie to watch and finally settled on “Temple Grandin,” about an autistic woman. I did not know what the movie was about, but I feel now that the choice was led by God. The more the movie played, the more I was reminded of a little girl in my daughter’s kindergarten class in 2002. I began to consider the future I may be facing. I feel that night was like many moments in my life when God prepared me for what was to come. It was the first time I ever imagined my son could be autistic. Although a seed had been planted, autism wasn’t the outcome I was hoping for.
We arrived at Dennis Developmental Center early on Friday morning. They didn’t normally take this type of appointment on a Friday, and there were no other families in the waiting area. We didn’t have to wait long to be called back. Once in the room, several women came to visit with us and then they took Caleb away to be tested. I wish it had felt like hours since he had been gone, but in my memory, it just didn’t seem they had him long enough for them to deliver news so permanent to us.
I remember hearing them say it was quite clear that Caleb had Autism Spectrum Disorder (ASD). My heart fought the idea. They couldn’t know what they were saying. They hadn’t spent enough time with him. Why wouldn’t they pay more attention to him? But God had prepared me for this moment. I held myself together, and I didn’t cry. I listened to the information provided to assist with his sleep routine and that we should begin something called Applied Behavioral Analysis (ABA).
Keeping my composure lasted only long enough for my family to walk to the car. It was in that moment the tears began to flow and I was unable to stop them. My husband pulled into a parking lot. Before he exited the car, he looked at me and asked, “Does this diagnosis make you love Caleb any less?” Of course, it didn’t! “Does this make him any less our son?” Again, the answer was no. While it didn’t take my sadness away, it let me know it was going to be okay. My husband is my ROCK, and he has been in so many moments throughout this journey. Where I often see a roadblock, thankfully, he has always seen a springboard!
It began to sink in. Will anything make my son any less mine? Will anything make me love him any less than I did the day I found out about him or the first moment I held him? No! And as his parents, it is our job to fight for a world and a community that feels the same about each child. It has truly taken a village to walk this journey. I have called on every friend I know who has any experience in dealing with education and autism. It has been five years since that day, and it probably took me three of those five to accept ASD as the truth for my son. I held on to hope, but sometimes it just takes that long to accept a new challenge as our new reality.
If we expect each person to fit a pre-made mold, we will always miss the opportunity to see the uniqueness of individuals. I pray my son can grow up in a world that is more like a jigsaw puzzle. Each individual piece fits perfectly with the other pieces. Even though they are different shapes, when they fit together, they make a beautiful masterpiece. No one piece can be left out of a puzzle, or it will be incomplete and leave a hole. Just like that, every person living with a child who has autism would be incomplete without them.
Through this journey, I have learned so much more than my education could have taught me. April is Autism Awareness Month and April 2 is recognized as World Autism Awareness Day. I hope everyone will take this opportunity to realize that autistic children simply have a unique vantage point. They see, feel and experience parts of the world differently than most, but my son is smart and capable. He loves God, Pokémon, math, babies, meeting people and pizza. He can work a puzzle without ever seeing the box, and he started playing chess with his dad when he was just two years old. He is perfect as he is, and I’m so blessed to be his mom.