Sunday, September 26, 2010

Jacob’s words

Jacob will probably never talk. It is pretty easy to dismiss someone who doesn’t have words. Some feel uncomfortable to talk to Jacob when you won’t get an answer back. Some feel uncomfortable to approach Jacob, since he might not always look you in the eyes. Silence makes people uncomfortable. It is a known fact. Silence is a commonly used tool for anyone in an interview situation, let it be a journalist, HR manager or interrogator. It always works. Silence makes people talk. Words give people comfort.

Jacob vocalizes, sometimes with purpose, sometimes not. I often refer to it as Jacob is talking. At times, I get this questioning look staring back at me. I have to quickly change my wording from talking to vocalizing – just so we are on the same page.

For me it’s amazing to be so close to a non-verbal person, from whom I have learned what every little vocalization, head shake, movement of a body part, or eye movement means – it’s all language. We’re a small close circle of family, nurses and therapists who know Jacob’s language to the teeth. They all know what Jacob wants and needs by spending a lot of time with him, but more importantly, they never ever stop talking to Jacob, never ever stop treating Jacob as a human being that understands what we say and do – day in and day out. I love my core group so very much for this.

The week before Jacob went into status epilepticus last year, Jacob had just started to communicate his needs with his foot by hitting a communication device when he wanted something “more”. It was very purposeful, and due to Jacob’s foot being stronger than his hand, that was his way of communicating. We were SO excited about this progress.

Jacob’s status epilepticus and major changes in seizure medications by the end of last year into this year made Jacob loose this skill. It hurts and stinks, but we have never stopped talking to Jacob. We have never stopped treating Jacob as an equal. We have never stopped to interpret his communication. So as his speech therapist took out his communication cards for “yes” and “no” this week to see if Jacob wanted to start making choices with his eyes again, we were amazed, yes amazed, that Jacob had no problem to clearly indicate what he wanted as his speech therapist asked him simple questions on what he wanted to do next. It was an amazing breakthrough to realize that Jacob hadn’t lost this skill, and that he wants to use it again! We’re now actively using two choices for Jacob to pick from and using his “yes” and “no” cards.

It just shows me once again that you can never give up on anyone. As Jacob’s mom, I just have to continue to be the strongest and best advocate for him. One “yes” it’s all I need to continue down this path.

With happiness,


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