Words You've Never Heard Me Say

I am wonderfully made in the image of God to do great things. I know about awesome things within myself and others. What I forget sometimes is that almost everyone on the planet elicits a switch that allows them to totally shut off the world around them. I always tell my parents it remains to be seen the effects of laziness when satiating the total, laughable, elusive taming of the mind.

I am expected to accept that I am nonverbal. I accept the fact that my vocal chords are not useful, but I reject that I am without a voice. Just because you don’t hear my words doesn’t mean I have none inside of me.

This is an update from Kell’s mom. Kell has been very busy, and has asked me to update his blog. He has done so much in the past few months that it’s hard to keep track. The last post that Kell made was written using his stencil letterboard. In just a few short months he has moved from the stencil board to a laminate alphabet board, to a wireless keyboard, and is now almost exclusively using an ipad with a text to talk app. He types what he wants to say and the app speaks it for him. He’s been especially excited about this because he finally, for the first time in his life, has his own voice.

I have the privilege of watching all of this unfold. I always had a feeling Kell was smart, but what I didn’t expect is the depth of his motivation. He craves independence, much like I did at his age. 🙂 It works in his favor because every milestone he has reached has happened because he made it happen. We haven’t had to push or urge him to do any of this. Once he is shown what the next step is, he’s on his way. About a month ago he stated that his goal was to start 10th grade next year with an iPad. Almost as soon as he said it, he accomplished it. It’s hard for us to keep up sometimes. Of course, we’re okay with that! We have waited his whole life for a breakthrough in communication. A few years ago, we finally accepted that he would never communicate with us. Never, ever, ever in my wildest dreams did I think this would happen! The cherry on top is that he is not only communicating, he is communicating appropriately. On the inside he is cognitively a 16 year old guy. He speaks like one too. He jokes with us, uses words like “legit”, and “owned”, and he is very concerned with everyone around him. After years of people telling us he couldn’t relate, had no capacity for empathy, and didn’t like to be around people, I have found the exact opposite to be true. He is very aware of all of us. He is concerned with how we are feeling, and is very aware of his position as first born in the family. He is always looking out for his younger brothers and giving me his opinion on how we should handle situations.

He has so many memories, showing us that he has been with us THE WHOLE TIME. It takes my breath away when he describes a memory from when he was a small child. Everything he has told me I also remember. I can also remember the way I was feeling at that time – his early years, when I began to realize that he wasn’t ok, and nonverbal autism was here to stay. But the memories – oh my gosh – he was right there the whole time. If only I had known, he would have seen me smile way more than I did. Yes, he has told me about the times he saw me cry over something he did, and told me he was sad too, but it was all ok now because we can talk about it. I truly have no words for what this feels like. I have tried to describe it to a few people and here’s the best way I can describe it – When Kell received his preliminary diagnosis at 2 1/2, I felt like my baby was taken away from me. It really did feel like the son I gave birth to was gone and this great unknown was placed in front of me. It was like he had been stolen. And now – to find him like this – it feels like he’s been returned to me. A large piece of my heart has been restored. And I can’t even begin to describe what it has done for Luke and his relationship with his big brother (a title that Kell has rightly claimed and made well known is his position!) If Kell asks me to post again I’ll write about Kell and his sibling relationships – a beautiful effect of his communication, and something that I’ve found parents and children usually take for granted. I have strayed far from what I wanted to post, but I think I’m still in shock, and obviously working through my own emotions. It has just happened so fast.

New discoveries – Kell can read! Not only sightwords, but books. In fact, he just finished The Pearl by John Steinbeck (something I read in high school). Luke had to read it for school and complete an interactive workbook. Kell said that he wanted to read it too, so I bought a copy for him, and he read it and did the workbook also. He finished before Luke. 🙂 I have no idea how he learned to read. He doesn’t know either, but said he realized he could read in 5th grade. He has read menus and told us what he wanted to order, comprehension passages and answered questions. He’s almost done reading 1984, and has started a new book A Walk Across America, just for fun. 🙂 He loves non fiction, and science is his favorite subject. He is a great writer, and says he wants to write a book in the future to bring awareness to non speaking autistic people. We have told him that he can do whatever he wants, we will help him find a way. He really is in charge of his own destiny and is paving his own way!

He’s a funny guy, and extremely smart. He has also requested that I tell people that if you know someone who is nonverbal and might benefit from this, please share his blog with them. He is very motivated to “save others” as he says. So feel free to share. This has gotten much longer than I intended, and there is still so much more to say. For now though, I’ll end with some of the things Kell has said:

“Dad is the caring person I hope to be one day.”

“I am happy because I had a lovely day.”

“Dad please accept my apology for eating too much.”

“Tomorrow let’s go to Sonic and random stores in the mall.”

“How late in life can you go to college?”

“Understand I expect premium use of my iPad at all times.”

“I am happy because I believe I really might get a high school diploma one day.”

“I want to watch Joanna Gaines.”

“Eating light cuisine is preferable to me.”

“Help me bait and hook readers with my blog so they will tell other non speakers.”

“Dinner tonight should be Hapa and not Tokyo Joe’s.”

“Maw Maw told me a mind is a terrible thing to waste.”

“You need to bask in the glory of having such a seriously good looking son.”

“I don’t ask for much. Nothing would make me happier than if Dad and I could read a book together.”

He really loves his Dad. 🙂

Men have lost real touch with society. Man is not meant to live as he does. However, many can’t cause change without a wish to be intentional in their actions. Decide if one not able to act needs to be motivated. Not daring to change can lead to your demise. I’m talking about life and death, not simple wishes. No matter your issue, live like a risen child of God. I care deeply about not doing childish things, choosing to take my destiny seriously. No sides taken means that I don’t judge others for making bad decisions. Stop denying yourself the tools to execute your new reality. I don’t care about changing your hair or clothes, my concern is about changing your destiny if you want. My awesome research tells me that change happens when you arm yourself with your best intentions. Hidden inside each individual is the desire to make ideas come true. We forget tens of thousands of ideas because of distractions. When a person bars ideas, change is not possible. My advice is to access all ideas, make changes, and be yourself always. Determination will carry you the rest of the way. Allow for mistakes. Choose to be happy.

Nothing went like it was supposed to. I’m not sorry Christmas was the last time I saw you. You don’t always know the last time you’re going to see someone. You remember to cherish every moment. You once said to me, “Never, ever give up.” I try to remember this everyday. You were too sweet to me. Not everyone teaches their great grandchildren life lessons, so I’m very thankful you taught me. A life without you is not as bright.

A voice is a wonderful notion. Nonverbal people realize this. My area of expertise is in rescuing those who are unable to speak for themselves. Nothing really makes life worth living without a voice to speak with. My dad is best at communication. He says I can do whatever I want now that I have found my voice. Not sure what riches await me, but I know I strive for a life of riches from communication. Too many destinies lay in front of me. My choice is yet to be determined. With my amateur career in writing, no telling what I will do.

Science refers to nonverbal people as autistic, but I listen to my heart. Nonverbal people are misunderstood. They are wired differently. Most are not autistic, only nonverbal. Nonverbal people are locked inside their mind. The “autistic behaviors” are because we don’t know how to cope without a voice. In the future we spell to make our voices heard!

We will no longer be silent!