Callie was born in March of 2001. The day is still vivid to me because I woke up feeling fine in one moment and then a couple of hours into my day, my water broke. No contractions. No pain. No warning. I wasn’t ready. Callie was coming and I wasn’t ready. Three weeks early and I wasn’t ready. I remember asking the doctor if I could have a couple of days to get my Mom here. He laughed as if I was kidding. We weren’t prepared. I wasn’t ready. And as I write, I see how ironic those three words really are. “I wasn’t ready” predicted more than not having enough bottles, pampers and bibs. It’s like the words were a foreshadowing of an unrehearsed, unplanned journey that our family was about to embark on. . . .and I wasn’t ready.
Callie didn’t cry at first. I am told that the nurse had to smack his bottom to get him to make any kind of noise. I held this 6 lbs 15 oz baby and gleamed with delight. The lack of baby supplies and the awareness that my Mom wasn’t coming ’til 3 days later – all seem to disappear at one sight of this precious gift I was holding. I thought, “hey, we’ll get through it.” Now, those are the words that should have been more impactful but “I wasn’t ready” superseded that.
Even after coming home, Callie did not cry a lot. I thought this was a blessing from God, because his older brother cried so much that I don’t think he slept. (I know I didn’t). Callie, on the other hand, stared, slept and ate, and the beginning of his existence consisted of just that. He was soundlessly pleasant. He only cried when necessary and that ceased when satisfied. I loved watching him look at his surroundings, wondering what his eyes captured and what his brain absorbed. As he became older, the staring, sleeping & eating routine continued. That didn’t bother me, but the no initiating contact, no words, no smile, no giggle….that did bother me. Certain developmental skills took a far left turn. . . . .and then worry set in. For the most part, Callie engaged only in puzzles and books. Of course, we learned of his interests after spending a pretty penny on toys that we assumed he would enjoy, when in actuality, these gadgets, games & objects might as well have been fine china. . . .something he looked at once but never touched. The television also kept his attention. He seemed in tune with any cartoon character he would watch. He was so mesmerized by the collaboration of color, sound, emotion & action that he really didn’t appear to appreciate the story. He could careless about the lesson learned or the moral taught. The happy moments, tears, the funny did not phase him, but instead all was meshed together as if the parts of the whole did not exist, just the whole. It was fascinating to observe but disturbing too. Callie had no reaction to what he saw. Even with books, he was obsessed with the pages but detached from the narrative. He just sat, motionless in a place of nonchalant…..and I sat, motionless in a place, puzzled over where morning went. Night had taken a stand and was adamant that I knew it was a force to be reckoned with. It took a minute for my position to be known & feel superior to the fear that flaunted itself daily, especially during the nonverbal years. Callie was almost 4 years old before he spoke. This delay was virtually unbearable. How do you communicate with a child who does not speak? Obviously there are numerous ways for one without speech to connect & relate feelings, wants and ideas but I was not mindful of any. And yes, over the years technology has changed for the better yet not one of any kind was introduced to me at the time. All I knew was vocal cords, voice, mumble, sound.. .and there was none. Only a cry could be heard when hunger, wet & sleepy occurred. His concentration was on routine and that seemingly did not require language. The familiar was his safe place. Change was not invited and affection was left at the door. All he wanted was to live in his world, on his terms, on his time. Nothing else mattered. When Callie was a year and a half, we enrolled him into daycare. I thought the communicative and social skills could benefit tremendously, not realizing that these skills he lacked were the very things that also defined the problem. The diagnosis of autism came a couple of years later, but it’s meaning had already been demonstrated and continue to do so on a daily basis. The social skills, I thought would eventually come, especially from watching his older brother on those rare moments that the books, puzzles & TV became a bore. Communication was huge for me. If my son could not talk, how on earth am I going to help him? How can he be taught? How can he learn? How can he survive life? Misconception #1 – Nonverbal is not equivalent to not understanding. Neither does it mean incapable of communicating. I didn’t get that at first. I saw the obvious and was convinced that there was no alternatives to learning. Before coming up with this conclusion, I did try. Repeat after me “A, B, C, D, E, F, G….” and no response. Numbers 1, 2, 3, 4, 5, 6, 7, 8, 9, 10 on his board… and blank stare. Picture books of animals with sounds. . .cat – meow, dog – bark, lion – roar, birds – chirp. . .and my wall came tumbling down. I watched my efforts meet a stop light every time. Green would have been too good to be true but a blinking yellow would have suggested hope. Neither transpired. But I’m not sure if the mere glimpse of another color would have shown through. The stop light was bright and it was clear that it wasn’t changing any time soon. Games and picture cards. My voice ringing with learning material, but cracking at every failed attempt. Therapists were brought in. I needed help. Even an ENT corrected Callie’s hearing “under water.” That was his explanation of why Callie wasn’t developing. He couldn’t hear. Great! Tubes were brought in. “In 3 months, your son will be talking.” Six months. 1 year. Another year. No words. Callie would transcend to a world where no one could enter but him. He was content or at least appeared that way. . . . .and I walked the floor, wondering if I would ever reach him. . . .praying I wasn’t losing him. However after many tries, I believed my tears flooded heaven. I heard a grunt. . .other noises that remotely murmured the undertaking of animals sounds. A babble here and there. He began using other forms of communication like pointing and even a few signs his teacher taught him, that frankly I thought, he ignored ….when in fact, he heard and he compartmentalized and he remembered. No eye contact to let me know that something was going to the brain. No expression of wanting to pursue any form of learning, but I was wrong. He was learning in his own way and his own time. He just couldn’t articulate how to let me know he was “here” every time. Maybe my focus was centered around delays instead of abilities. Maybe my unpreparedness clouded my view of really seeing my son. But you learn. You hope. You pray. You keep walking until you slowly see morning rise above night, taking back its rightful place. . . . . .and then you can breathe.
Thanks for listening,