Having a non-verbal child is a challenge. Especially when they start to lead more independent lives. We rely on word of mouth to piece together his experiences away from us. We rely on our ability to ask the right questions and trust that we’re receiving truthful and factual answers from both Cole and those who are with him. We also have to accept that there is some much we’ll never know about his experiences, his days, or his life away from us. Which if you’re me is no easy feat.

We receive daily notes about his school day. It’s supposed to detail what he’s studying and doing in each class as well as any notable things that happen each day. There’s also space to note which friends he hung out with at lunch, nutrition or in class. The notes are often pretty bleak so we try to fill in the blanks by asking a tired, uninterested child countless questions which largely go unanswered. Occasionally we get a smile here or there, probably remembering something funny he and a friend chatted about or did but not wholly valuable to those who are not in the know.

I am blessed to have some mom friends who have children in his class who share need to know information, but this only goes so far. There’s so much of his school life that remains unknown. I wish I could live in his head to experience life from his perspective and to peek into his thoughts.   Just for a day. Oh, the insight I could gain.

Much of his free time is spent with one or both parents so we have a beat on what’s happening with him during the weeknights and weekends. However, my curiosity roams to the internal thoughts. Not having the ability to have rambling random conversations leaves so much about him a mystery. What does he think about when he’s just relaxing and chilling in the evening? What’s going through his head when he shares a big family dinner with my brother and his family and my mom? What does he really think of my dancing – I know what he thinks of my singing…he’s communicated his distaste for my singing very ably! (I admit, I cannot sing…it doesn’t stop me but alas…I song bird I am not).

Even with the use of his Tobii, a voice output device he manipulates via eye gaze, much of his conversation currently is limited to answering or asking questions not to chatting. Not yet anyway.




One Response

  1. My daughter has a mild form of cp its great to see others out there

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