A wonderful friend of mine has been encouraging me to write for an upcoming Chicken Soup book for parents of kiddos on the Autism or Asperger's Spectrum. Tonight I felt inspired to take a stab at a 1200 or less word letter to Caleb. When I finished it was 1,196 words! Someday, I will actually have him read it. But for now, you get to be my test audience. Of course, the Chicken Soup books don't have pictures, but I had to add some here!
Not What I Expected
You have been surprising us from the day you were born. From the time you entered this world six weeks early you have been surprising us. The doctor hoped you would be at least five pounds; you were almost six! The doctor had a team of specialists waiting to help you breathe in case you couldn’t on your own. You never needed oxygen; your gusty cry tore through the room announcing your entry into a bigger, wide open world.
No one knows this but I secretly prayed that God would give us a son as our firstborn. I prayed that God would give us a young man we could be proud of, a big brother that his siblings could look up to. I prayed for a young man after God’s own heart, one with compassion and a heart for serving others. We imagined your life reflecting the model child from the many parenting magazines in the doctor’s office.
Then you turned three weeks old. Your three week birthday marked an apparent end to our dreams. You were no longer the tiny preemie who slept all the time. You woke up when you were three weeks old and have been very alert to the world around you ever since. From the time you were three weeks old you began letting us know that the big world around you was overwhelming to you. You probably wished you were back inside of me where it was warm and quiet, where you didn’t have to wear scratchy clothes and squint at the lights all around you.
When you were three weeks old you started screaming. All of a sudden one Wednesday afternoon, you began to cry and didn’t stop except to eat and occasionally sleep. Each day turned into a week and each week turned into a month. You rarely stopped crying. The doctor said you had colic, but as the weeks turned into months and you refused to be soothed, I began to wonder why. My heart told me that you didn’t just have an upset tummy.
My heart told me that the other moms who had babies when I did were not going through what we were. They were eventually getting sleep. They had babies who sat and crawled. My heart told me you were different. I didn’t want different. I wanted a son whom I could be proud of. It was hard to be proud of a baby who screamed all the time. It was hard to be proud of a baby who met very few of the milestones mentioned in the What to Expect books that first time moms fervently read to make sure their babies are normal. You were getting further and further from the normal described in all the baby advice books and I was getting further and further worried about you.
The day finally came almost six years later when your dear kindergarten teacher told us that you were not like all the other kids in her class. “But, I just can’t put my finger on why,” she would tell us. A year later your first grade teacher told us, “I’m not sure what it is about Caleb, but it seems to be neurological.” It was time to figure out if your differences had a name.
Your differences were becoming more apparent as you grew older. Things that most kids outgrew before they started school were still a struggle to you. You had a hard time taking turns. You had a hard time handling noises. You didn’t wear jeans because they “were too hard.” You didn’t like it when your routine changed. You didn’t like to eat French fries because they were too gritty. You still had tantrums when you didn’t get your way. Tying shoes and handwriting were very difficult for you.
The reason we didn’t seem overly concerned about finding a name for your behavior is because you were so special in so many ways. Your sweet nature and amazing science vocabulary often made you seem older than you really were. How many 5 year olds already know they will be a meteorologist when they grow up? We just assumed that you were a stubborn and headstrong little boy who liked to do things his own way. Besides, could anyone who communicates so closely with God when he prays really have something “wrong” with him? By the time you were seven though, our hearts told us that your behaviors differed enough from the other kids at school and even from your own siblings that there must be a reason why.
Some parents fight against a diagnosis or a name for their child’s peculiar behaviors. But after years of feeling guilty for not being able to make you behave, never being able to help make you adjust to something new, and always trying make you be normal, we were relieved that these behaviors had a name. We were relieved that they weren’t our fault. We were even relieved that you didn’t do these things on purpose. The day the doctor told us “I’m seeing so many patterns here; can we keep talking?” we were actually excited!
Our excitement was buffered however by the fact that the name for your behaviors fell on the autism spectrum. Wasn’t the word autism reserved for guys like Rainman? You were nothing like that. In all of my years training to be an elementary teacher no one ever taught that kids can have a high functioning form of autism called Asperger’s Syndrome. We had so much to learn about the way your brain ticked.
The word Asperger’s or autism no longer frightens us. We have learned so much over the past five years about your brain, your amazing brain! Your abilities by far outweigh your shortcomings! Your hearing is remarkable. Your sight is amazing. You may have trouble controlling your emotions but you have an amazing ability to love. You may not handle routine changes well but you are learning how to adapt. You may not be super organized but have amazing focus when it comes to studying meteorology. You may be easily hurt by others but you are the most tenderhearted boy when we visit the nursing home. You may not read other’s emotions and facial expressions as well as your peers but you love everyone just the way they are. You don’t care about the latest fashions and trends to hit America’s middle schools, but you care deeply for everyone around you. When other people just see a cat, you see a friend.
You may not be the son we imagined you to be but you are so much more. Those prayers I prayed when I was carrying you were not just answered, but were so beautifully carried out. Your tender heart that loves to serve others is evident in your everyday life. Your love of meteorology may lead you down a vocational path, but your heart will lead you exactly where God wants you to be. That’s exactly where we want you to be. That’s exactly who we dreamed you to be!
Love, Mom (& Dad)