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.


barb bits said...

In an email from Lori:

Very nice Barb and interesting too.
You have a lot to be proud of.
The struggle was rough in the beginning, but you had Dave and the State to help you.
That was and is a Godsend when having a special needs child.
Look how well he’s doing now!
That is terrific.

barb bits said...

Thanks, Lori. We are proud of Chase. He is doing well and that is true what you say. We did have the support we needed. But it's also important to reach out to get the help you need. Many times my pride stood in my way, and that wasn't helpful at all.

Christina Julian said...

This is wonderful Barbara. You bring us right into your world in an instant. I look forward to reading more.

barb bits said...

Thanks for reading, Christina. Will have more real life moments for you to read in my next installment. It seems to just keep coming, but that is really no surprise to me as I have been writing about Chase for years now. By the way it was great seeing you at the writers club meeting last week!