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| The twins at the Children's Museum |
It is nothing short of an emotional triathlon having a child, let alone a child with disabilities. Even more challenging is that once we get into a routine, everything changes! The biggest transformations occurred recently. My son is a completely different child than he was five months ago.
Suddenly he is... more capable. In so many different ways.
He turned two-years-old and started talking. (With a speech impediment, poor thing, will nothing come easily for him?!) Saying words! He has been retaining knowledge all of this time, but only now is he able to express his learning. In one week he went from "duh-duh-duh" to identifying all twenty-six letters of the alphabet (both uppercase and lowercase letters) in and out of order, the numbers one through ten, twelve shapes and most colors. He can say "up" and "walk" and "eat" and "milk" and "apple." He watches his Baby Signing Time videos and while still he does not sign, he now speaks the words aloud! He says "Bless you!" when you sneeze and sometimes says, "Achoo!" then "Bless you!" and laughs at his own joke.
That, and he can stand. He stands in his crib. He stands at the baby gate. He pulls himself up to standing at the coffee table. Last night he crawled up two steps on his gym mat and got stuck, with a huge smile on his face because he knew he did something great. His facial expressions were torn between the distress of not being able to go up or down, and the pride of having gotten there on his own. He had followed his sister up the mat and almost made it all the way, yelling loudly so we would come and see. And then help him down.
"So he has conversations now," the case worker from his Early Steps intervention team said during our re-evaluation meeting this week.
"It's more like scripted lines," my wife corrected her. We are still working on saying hello and goodbye. We are still working on anything social. But if we are talking about letters and numbers and shapes - he can repeat the same phrases again and again, with great excitement. We can take turns reciting consecutive letters in the alphabet, counting objects around the room, singing songs. After months of practice he can roll a ball back and forth with another person, and he understands the concept of taking turns while speaking and while playing catch. But despite our best efforts, and the efforts of all of his providers, basic social interactions remain elusive. What comes out of his mouth has clearly been long-practiced in his mind.
How can I feel so completely proud of my child and unbearably heavyhearted at the same time? How is it possible that despite my endless love for my son, my ongoing quest to provide him with every possible opportunity, and the joy that fills me just by spending quality time with him, how it is possible that sometimes I feel so down? There are days when I put him in his crib for nap and then cry at the unfairness of it all. These times are easily countered by the many moments I cheer and laugh and dance around the house with him giggling in my arms.
I imagine that my son (once he agrees to follow directions) will do well in school. We are fortunate that he perseverates on academic subjects. We have yet to begin his ABA (Applied Behavior Analysis) therapy due to waitlists and scheduling conflicts. Once ABA begins, I hope that my son will learn social norms and become adept enough that he will be able to be mainstreamed in school. Time will tell.
In the meantime, he wears his special orthotic braces on his feet and ankles, and shoes, and he walks slowly with me from the car into the restaurant, a huge smile on his face We practice for long periods every day, much to his excitement. My son wants to walk. He loves to walk. He will walk. He is happy to shuffle along with Mama holding both of his hands. Then we go into the restaurant and put him in his high chair, and he begins to scream. I pull out books, shapes, letters, sing songs... nothing works for long. Mommy spends most of the meal singing to him and giving him one bite of food at the time. Our son randomly emits bloodcurdling shrieks triggered by nothing we can identify. Randomly he puts food in his mouth, and randomly he launches food to the the floor. Other people stare in our direction. It is in these moments that I see the "differences" that make up my son, and my insides stoop in sorrow. Then in the car ride home, my son and daughter laugh and play together side-by-side in their carseats. I am reminded by the normalcy of our lives, and I am thankful.
