Thursday, January 21, 2016

Chase: Part 2: First Words

Chase age 4

Along with the contact information for North Bay Regional Center, the doctor advised David and me to call the Napa Infant Program—NIP—a pre-school for toddlers with special needs. We’re talking just beyond potty training. (Some bragging here, Chase aced the potty by age 2.6.)
The next day I called NIP and they set up a home interview. On a rainy November afternoon, Johanna, a Special Education teacher, arrived at our house on time. I recall her name because she had been so kind. David’s mother, Colleen, had driven over from Petaluma at my request. I didn’t want to be alone. I brewed three cups of hot tea, because my hands were freezing.
“Hello, my name is Johanna,” she said to Chase. He mostly ignored her preferring instead to play with the puzzle his grandmother had offered him. Johanna watched him and took notes. Then she turned to me. “How do you know when Chase is hungry? Or when he wants to play with a toy out of his reach?”
I tried to be honest. “He fusses and fusses until I give in. I just give him what I think he wants.” What did I know about modeling the behavior I wanted from him? Nothing.
She offered Chase a candy—a mini Tootsie Roll—a signal to me that our interview was over. Johanna explained the NIP program to Colleen and me. “I believe Chase would benefit."
The process had begun. That had been the start of Chase’s first Individual Education Plan—IEP—others would follow annually. Four days a week from 12:30 to 3:30 he would attend NIP. Beginning after the holiday break, a little yellow school bus would deliver our toddler from our door to the school and back again.
On the first day of NIP I had been prepared to go with Chase on the bus, but he didn’t seem to need me. He marched right up the steps, took a seat, and didn’t even wave goodbye. Perhaps the bus driver felt guilty when she saw tears well up in my eyes. She waved goodbye to me.
Chase adapted well to pre-school. Parents were invited to visit, but it was noted that some of the kids—our son included—acted up when we did. I settled for sending notes back and forth in a journal that he carried with him in a back pack.
Progress was made. One day the teacher sent home instructions for the use of sign language. “Chase said book today by opening his hands. Try these words at home!” Potty was a word he could say by shaking his little fist. I guess for him that one was a no-brainer. As for talking, it took years for him to learn to communicate.

 His first true words came by age six. One night I couldn’t sleep so I went into the kitchen and poured some milk. Chase must have heard me. Did he want milk too? Leaning against the couch, he watched me while he rocked back and forth.
“Chase, how can I know what you want if you don’t tell me? Do you want milk? Do you understand what I’m saying to you?”
He continued to rock. What kind of an answer was that? “This is hard, Chase. I just want my son to tell me what he wants.” Tears threatened, and I tried to control them. “It makes me very sad that you won’t talk to me. Couldn’t you at least try?”
I was determined to get through to him. “Do the children at your school ever talk?”
No answer.
“What about Ivan?” Although I knew Ivan had Downs syndrome, I remembered hearing him speak. “I bet Ivan could tell me that he wants milk. And I would give him some right away. Can Ivan can say he wants milk?”
            “Ivan mik,” he said. Just like that, my son spoke. Not exactly what I wanted, but he spoke. My hands shook as I poured him a cup of milk. We opened the cookie jar to celebrate.
After that night more words slipped out—incoherent at times—but words, something so simple for most six-year-old children were remarkable for him.

Thursday, January 7, 2016

Chase: Part 1: No Words

photo by Kiljander
Einstein didn’t talk until he was four.
He’ll talk when he has something to say.
Can he hear?

All were remarks from our relatives and friends intending to be supportive, but I mostly ignored them. My child was not Einstein, and it seemed to me that if he could whine and cry he could toss out a word or two.
By age two, at Chase’s physical exam, the doctor asked how his vocabulary was developing. I listed what I knew: da for Dad, dō for dog, ba for bottle, but they were sounds not words. I explained he had never babbled like other babies. Sometimes he gestured for things, a cup, a cookie, but mostly he yelled. 
“He should be putting two words together by now,” the doctor had said. “Make a list of his words and see me again in two months.”
Chase had been born six weeks premature so I expected delays in his development, but when he sat up at eight months, and walked at thirteen months, I stopped worrying. Did he need more time? Was I doing the mom thing right? Did this happen in other families? Chase was my oldest child. I hadn’t been around enough children to know for sure that something was wrong.
One day, feeling desperate, I decided to not let him out of his high chair until he said “down.” Any similar sound would do: dow, deh, doo. Nothing.
“Just sit there then,” I told him, and ignored the consequences. His vocal chords were fine.
“Say ‘down’,” I said.
He stretched out his arms.
“DOWN,” I demanded.
He kicked and his highchair wobbled.
“DOWN,” I yelled. (Not a good strategy, but I was feeling it.)
Afraid that his rocking might land him on the floor, I finally helped him. “Want a cookie?” Perfect. Now I was rewarding him for not talking. He snatched it out of my hand and ran from the room.
Two months later in the doctor’s office, I didn’t need a list. There were no words. Instead, there had been noises, silly noises, elongated vowel sounds, or tuneless humming, endless noise. “Quiet!” I yelled. We were the perfect pair, unable to communicate; there weren’t enough cookies in the world to fix us.
The doctor handed me a slip of paper with the phone number of North Bay Regional Center. He explained it was a state agency that offered free psychiatric testing for families in need of services. He also ordered a hearing test.
The results came back normal. 

To be continued…