Without a Crystal Ball

Our Journey through Chronic Illness

“Mommy need Dik,” Von looks at me impatiently.

Whatever I had in my mouth spits out, and I respond, “What do you want, Von.”

“Dik,” He says emphatically.

I’m still very confused at this point, but I can’t help but giggle now. This child really wants dik. Though I’m not totally sure what dik would be. “Honey, what do you want?” Hoping this will encourage him to try to use the skills he has learned in speech therapy to find the right letters to say.

Instead he looks a bit mad and now frustrated. He takes his finger and he points to something over on his night stand. Now he raises his voice and he says, “Dik.” I follow his finger to the bottle, and I see that he wants his water.

Slowly I turn back to him, and I say, “Do you want a drink, Von?”

At this point, the communication break down has gotten to Von. He’s annoyed with me for not understanding earlier. He says, “DIK, PLEASE.”

I walk to his dresser, and I grab his water bottle. I had it to him, and he takes the bottle with great authority. He puts his lips on the straw and gets that desired drink. After a long sip, he gives the bottle back to me. He looks at me and he says, “Ri Ri, Mommy. Li Off.”

I say, “Night, Von.” I remind him we need to go through our ritual of saying goodnight to various people in our lives. We make our list as we start saying all the people we love. He proclaims his love for Mommy, Daddy, Grandma, and Poppa.  When we are through, I say you forgot one person.

He looks at me with a smile and he says, “I UH JEE-see.” I remind him how to pronounce the name. Gently, I touch his hair and I say, “Yes, you love, Jesus.”

I prop myself off of the bed. I give him one last kiss, and touch his hair one last time before I walk away. As I walk to the door, I look back to him and I say, “Sleep Tight.”

He lifts his head up to me and he screams, “SEE TIH.”

I closed the door. I ran to Todd, and I told him about the whole exchange. While for many parents this may be a really funny exchange, and typical mis-communication. This is the kind of experience I have been dying to have as a mom.

Von was non-verbal until about September of this year. He had a few words, but he couldn’t express himself clearly due to Severe Apraxia of Speech. We started therapy last spring. At the time his speech pathologist estimated his expressive speech to be less than 1% of children his age. The news at the time was devastating. The diagnosis was so hard to swallow. Many children with Severe Apraxia of Speech find it difficult to talk. It’s on a flexible spectrum. There will be some children that will move from Severe to mild. While other children stay at Severe forever. The doubt of that diagnosis last spring provided me many sleepless nights. There was a time when a therapist told me that they weren’t sure Von would ever communicate. We were working on getting ready for sign language and an alternative communication device. We truly weren’t sure if he would speak.

After months of therapy, with a very determined therapist, Von had a verbal break through in September. Within in a few weeks, he went from having a single word of Dada to speaking hundreds of words and speaking in sentences. His therapist was astounded. She said the results were miraculous and not typical. Most children with Severe Apraxia don’t start speaking this quickly. He was even moved from Severe to Moderate Apraxia of speech. We had conquered another goal that was unexplainable.

Over the past four months, Von’s verbal skills have improved dramatically. Our biggest challenge now is his pronunciation and the intelligibility of the language. Most people that don’t know Von would have a hard time understanding him. However, we know what he’s saying because the same attempts and approximations are used consistently when he speaks. He continues to work with his therapist on building, molding and shaping his letters. There are times he still struggles to get the words out, gropes for words, and says the words in the wrong order. However, he’s speaking. This was something we were not expecting.

Last night as I laid my head down for bed. I thought of all the hard work he does every single day. The amount of issues he tackles daily is impressive. He works incredibly hard with his therapists and is a very eager, agreeable student for them. I continue to marvel at what he continues to show us. He isn’t suppose to be here. He wasn’t suppose to be make it this far, and now he’s beat another thing he wasn’t suppose to do. As I laid down last night, I silently said to myself, “I Uh Jee-see.” I know he’s up there and helping us reach these milestones and miracles. I am not sure why he’s picked Von for it. But I’m not going to argue.

As Von would say, “Tak U Jee-see.”

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4 thoughts on “The Night Von asked me for “Dik”

  1. Love love love this!! Yay Von, yay speech breakthrough and YAY JEE SEE ❤️❤️❤️

    Liked by 1 person

    1. We love us some JEE SEE

      Liked by 1 person

      1. Pat stanton says:

        Love this little guy so much. Keep up the good work Von.

        Liked by 1 person

  2. Mandi Wilson says:

    My nine year old is still completely non-verbal. Your story gives me hope. Thank you for sharing.

    Like

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