I talk. I talk too much. I sometimes get in trouble for not keeping my mouth shut, but I just love sharing what’s going on with me with those I care about. (You do know that includes you, my faithful readers.) I don’t know why I think everyone should be interested in what goes on with me. And, it’s not that exactly, it’s just that I like to talk. A lot.
Well, I’m not into making big changes here in the ‘mature’ years of my life. Today, I wish to continue to share with you the story of my grandson, Levi. You walked the way with me as we waited for him to be born and have shared my joy as I have spent days with him here at home. You have shared his birthdays and Christmases with me. He has been such a joy and continues to delight us day after day with his determination and spunkiness! He is a wonderful gift to this family.
We began to notice, when he was 10-14 months old, that he was not verbally where we thought he should be. He was not saying those first words that we were all waiting to hear…”MaMa…DaDa…ByeBye…Go…Ball…you remember. When it was first mentioned to a pediatrician (not his regular one), he said “no problem…he’s just a boy. He’ll talk soon.” His parents and we grandparents noticed how he was often frustrated when trying to communicate with us. He would go to the refrigerator and make sounds…loudly…but there was never any “BaBa”. I began teaching him some very simple sign language. He quickly learned “please, thank you, cookie, more, eat, drink, all done, help. ” He picked these up and soon it was easier for him to communicate with us. This seemed to make him less frustrated. However…it was always obvious to us all that he fully understood all that was said to him. We slowly began to hear Ma and then Da…finally he began to wave bye bye…but not say it. Still, he was not making the sounds that seemed to lead into recognizable speech. He surely tried…always making lots of sounds…but they weren’t the right sounds.
I suppose since I have worked with young children all my life, I noticed it first. And, also, having the history we do with our 3 boys, we know the importance of watching carefully and picking up things early. Early intervention and early diagnosis is what saved Adam’s life. And Ian came into this world fighting to eat and suck. And, we knew if there was a problem with Levi, it needed to be discovered early. Adam and Suzanne are such good parents and have been closely watching Levi. They read with him every night and he knows many words…when they say them, he will point to them. We have all worked with him to get him to speak. And, he has recently rewarded us all with ‘tact-tor’. His Papa rides on one to cut his yard. He’s has his own version of ‘turtle’ also, but I couldn’t express it to you how he says it. It is obvious to us how badly he wants to speak.
When he went to his two year check up, Suzanne and Adam talked to his regular pediatrician about this and fully conveyed their concern, and he suggested that the first step was a hearing evaluation. Levi seems to hear well, but there are times when he doesn’t acknowledge us at all. It’s as if he’s turned his hearing off. But, the evaluation showed his hearing was normal. It was then suggested that he go to a speech pathologist for a full evaluation. And, that was where we found ourselves on Friday.
Because Ian was born with a cleft lip and palatte, he spent much time in speech therapy. But, both my other boys did, too for short times. We were so fortunate to have the therapist that we did. And, even more fortunately, she was willing to take on Levi. We know what a blessing this is and are so excited to have her guiding our sweet Levi.
So, does he have just a problem with pronunciation or a lisp or stuttering? No, none of those and we knew it wasn’t that before we went. He has a disorder called Childhood Apraxia of Speech. Bet you never heard of it. Well, we know lots about it now.
“Developmental apraxia of speech is also known as childhood apraxia of speech. This condition is present from birth, and it affects a child’s ability to form sounds and words. Children with speech apraxia often have far greater abilities to understand speech than to express themselves with spoken words.”
“Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words”. From the American Speech-Hearing-Language Association
“With apraxia of speech a person finds it difficult or impossible to move his or her mouth and tongue to speak. This happens, even though the person has the desire to speak and the mouth and tongue muscles are physically able to form words.”
So, this is where we find ourselves now. We have a diagnosis which is always the best first step. And, so we begin to tackle Levi’s speech. He will require extensive speech therapy for years. Another thing that is a concern is the speech in CAS often aquires a monotone sound with no inflection. So, as we work on the proper pronounciation, we also have to work on the inflection he uses. Inflection to me is like the ‘music of speech’. It is almost like a melody line as we speak normally. The highs and lows we use in our speech (such as in “UH! OH! or BYE-BYE) is like the melody line in a written piece of music. (This is a Tonja explanation. If it doesn’t make sense…consider the source!}
Some children may require sign language on a permenant basis or a word pad that says the words as you type them or touch pictures. We, however, are believing that God is going to help Levi have the best outcome possible! This is not on the autism spectrum or a form of Asperger’s. Levi is very intelligent and quite strong willed. He has a determined spirit and loves to figure out ways to do what he wants. (This sometimes gets him in trouble.) We are, at this point, teaching Levi how to listen to speech. He has to learn that what he hears can be spoken. This seems to be his greatest need at the present…to learn how to listen. Funny thing… I can hear myself saying “You need to listen”…or “Why don’t you try listening?” to my own boys through the years. But, in this case, Levi actually has to be taught how to listen.
We have such a wonderful opportunity here to show just how God works. We had a problem, and at first, we did not know which direction to travel. After prayer, God impressed upon us the need to talk with the pediatrician and to continue on with the followup. When it became known to us that we needed a speech therapist, we knew who we wanted to use, but I also knew she did not take many patients anymore. We all prayed about it and she agreed to see Levi for evaluation and for therapy. Isn’t God good? He is meeting every need as it comes up. I have seen Him do this before. And, since we know that He never changes, He will continue to help us as problems comes up. I do not know about you, but this is one of the dearest truths that I hold onto in my life.
“And, my God will meet all your needs according to the riches of
His glory in Christ Jesus” Phillipians 4:19 NIV
This little boy is so fortuate to be surrounded by family and friends who will be constantly helping him. So we walk this new path with thanks and gratitude for his determined spirit and strong will. We give thanks for his fine hearing and for his ability to learn. We give thanks for the ability to pay for his private lessons. Nothing, nothing, nothing good comes to us by any means other than God. So, Levi will learn to talk slower than most children…and he will learn to talk a whole new way from most children. And, we parents, and grandparents and aunts and uncles will all learn how to help him and encourage and all will be well! We claim that promise!
“Tell the righteous it will be well with them, for they will enjoy
the fruit of their deeds.” Isaiah 3:10 NIV