Tuesday, June 14, 2016

A Words

Editor's Note: Today we bring you another great piece from Courtney Hand. I would suggest following her on Twitter @CourtneyHand9 and on the interwebs at happilystruggling.wordpress.com
 



Have you ever had a nightmare in which you couldn’t speak? You open your mouth to scream or yell and you cannot produce any sound.   It’s terrifying, isn’t it? And maybe some of us even experience this sort of little nightmare in real life when we don’t know what to say. Occasionally when I’m nervous my words come out in a jumbled mess. Thankfully these moments of feeling at a loss for words are temporary.
Can you imagine what it would be like to always feel that way?   What if you knew exactly what you wanted to say but just couldn’t get your mouth to cooperate with your brain? This sort of brain-to-mouth motor planning dysfunction is, in a nutshell, the description of something called verbal apraxia, a condition that my three-year-old son, Theo, was diagnosed with last year.
Along with apraxia, Theo was also diagnosed with another A-word last fall. But I can’t bring myself to type it out publicly, even though I’m sure you can fill in the blanks. It’s not that I’m ashamed or embarrassed. That’s not it at all. It’s just that the diagnosis still seems so subjective. Some of the doctors, therapists, and teachers that currently work with Theo, and those who have worked with him in the past, disagree with this A-word diagnosis. With such confusing feedback, I’m not ready to attach such a weighty and often misunderstood label to my young son. Perhaps it’s because I still don’t understand what that label means.
With or without an A-word label, speech remains an incredible challenge for him at this time. Just for some perspective, a typically developing child will be able to say about 200 words or more by the time he reaches age three. My son could only say about two.   Just a couple days ago, at nearly three and a half years old, Theo added his version of “uh-oh” to his slowly but surely growing vocabulary and it was incredibly exciting.  
Despite his expressive language challenges, Theo comprehends language at about a four and a half year old level. His teachers at his early childhood preschool say that he understands almost everything they say. However, for his first three months of school, Theo did not utter one word. One day this spring, a teacher asked him who holds his hand and he finally spoke for the first time at school answering, “Momma”. I was so proud!
Although I am so proud of the progress that Theo has made in the two years since we started investigating the cause of his speech delay, I still feel quite anxious about his future. I am trying to remember that God has a plan for Theo and for our family as a whole. But sometimes I’m impatient and I just want to know if Theo learning to talk, in the conventional sense, is part of that plan.
When Theo lashes out at me in frustration or when he gropes for words, I just want to know if there is a light at the end of the tunnel. As I write this I hear Jesus saying: “IF there is a light at the end of the tunnel? IF?   My child, there is always a light at the end of the tunnel, for that is hope. The light may be a different color from what you were expecting, but I assure you that it is brighter than you could ever imagine.” And sometimes I do see glimmers of that light.
A couple months ago, I scoured Catholic websites, trying to find the perfect saint to intercede on behalf of Theo. Then on Easter Sunday, as my family and I drove home from my mom’s house, we learned that Mother Angelica had passed away. Perhaps I should have been a little sad from this news, but all I felt was joy because I knew that her suffering had come to an end and that now Theo and our family could have an amazing intercessor up in heaven.   During her time on Earth, Mother Angelica was the type of lady who made the seemingly impossible a reality, especially when it came to communication. Her voice reached people all around the world. If she could accomplish this on earth, just imagine what she can do in heaven!
So, in the car on Easter evening, I began praying for Mother Angelica’s intercession. I can’t remember what I said. It certainly was not anything fancy. Within days, completely out of the blue, Theo started pointing to the letter A and saying “A”. I should point out that he had never before verbalized a letter, much less pointed one out. He pointed to and said no other letters for a couple of months. Just A.
I have been inundated with A-words in the past year: apraxia, autism, anxiety, anger… But when Theo started pointing to the letter A, a NAME, not a just a word, came to my mind. Angelica. With all of my heart I believe that this was a sign from heaven reassuring me that Mother Angelica was listening to my prayers and praying for our little family.
In the past couple of months, Theo has been learning to communicate using a communication application on an iPad at school. In about a month, he’s going to get to bring this talking device home.   We are so excited that we will soon have the technology that will enable us to hear his “voice”. We know he has so much he wants to share with us. I’m beginning to see a light at the end of the tunnel. It’s a different color than I imagined, but it’s getting brighter. I’m finally moving towards another A-word: Acceptance.   I’m not accepting this label or that diagnosis. Instead I’m accepting my son where he is with the unique light he brings to this world.

3 comments:

  1. Courtney, Thank you so much for sharing about your precious son. We have also asked for the intercession of Mother Angelica for our son Brandon who just had a tumor removed from his brain last Wednesday.
    As the mother of a child on the Autism scale (different kiddo) who also had speech issues (understood everything but couldn't get his words out) I would suggest an EEG to rule out seizures that are not visible. It's actually more common than not with A kids. Once my son's seizures were under control he gradually started speaking (he was almost 4). His seizures were directly in his speech area. Now his is 19 and motor mouth! I don't know if your situation is that 'simple' but it's worth looking into.

    You're a great mom! May Mother Angelica look down upon you and bless your little boy with all that God intends for him.

    Debbie

    ReplyDelete
    Replies
    1. Debbie,
      Thank you for all of your kind words! First, I pray that all is well with Brandon. That sounds scary!
      I really appreciate your insights regarding Autism and seizures. Theo has actually had two EEGs. We had one when he was about 4 months old because we suspected he was having infantile spasms. A 1 hour EEG showed no abnormal brain activity. When he was about 20 months, Theo had a 72 hour EEG to investigate whether or not he was having absent seizures. Again, the EEG showed only mildly abnormal brainwaves which did not indicate seizures. But, we were told to continue to monitor him... So, I'm glad that you brought this up because perhaps we are not really out of the woods on the seizures. Truly, I would be so relieved if that were the case because it would seem that we could have a more objective way of helping him.
      I very much appreciate your encouragement and I'm so happy to hear that your son is so talkative now! Gives me hope!
      God bless!

      Delete
  2. This comment has been removed by the author.

    ReplyDelete