A NEW PATH TO WALK

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

 

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11 Comments

  1. I never heard of that diagnosis either. My mom used to say that she didn't talk until she was four years old. She remembers being at a zoo and seeing a peacock. She suddenly said, "Birdie has a hammer on its head." And everyone fussed and exclaimed that she had talked! Sounds crazy, I know. Jeremy didn't talk till he was about 2 years and 3 months old, then he started big time and we couldn't shut him up! Sometimes I think Sammy isn't saying as many words as he should be by now (19 months old), so this post is extremely interesting to me.

    Yes, Levi is a very blessed child, and I love hearing how God is showing the way and providing for every need each step of the way. Love you and your family, Tonja!

  2. June Kilgore |

    To me, when seeing Levi's photos, he has always had an expression in his eyes of deep thought, as though his mind was soaking in the moment. To read all of this gives me understanding to his beautiful eyes and facial expressions; you know I have written in response to some of the photos…"What must his little mind be thinking?!" I am in awe to it all! In God's time and plan, it will be revealed by Levi just how wonderful his mind truly is. He will master this and be used of the Lord to show incredible abilities and strengths…he will amaze us! God knew he had the perfect family in which to bring glory unto Himself…how many grandmothers would be teaching sign language to their grandchildren?! My love, prayers, and blessings to you…always.

  3. lisamcgriff |

    Will be praying for sweet Levi and all of his "speech helpers". He is so blessed to have the wonderful parents, grandparents, aunts and uncles to help him through this!

  4. I know that our God is an awesome God and he will bring you through. ((HUGS)) Keeping Levi on my prayer list.

  5. Just sending love and encouragement from way up here—I cannot imagine a better family or home to nurture and teach that sweet child.

    Thinking of you my Dear Friend—I have not a doubt in my mind that Levi is going to sing.

    love and,

    rachel

  6. I have heard of apraxia, but don't know much about it……I'm thankful with you and know what a testimony you will have from this trial!

  7. Thank you for sharing. I love your faith and the commitment of the family to this dear little one. Remember you all in my prayers.

  8. Our sweet Jesus knew when your three boys were born that you would be the grandmother to Levi. He knew when you went thru your struggles with them that you would have the knowledge and the patience to guide Levi's parents thru some difficult times. He also knows what will work for Levi. As you all walk thru learning in a different way, may you be reminded that He knew evi before he was even born, and He certainly knows him now. He will meet you're very need. Excited to watch him grow and learn and talk and sing!

  9. Lori hewitt |

    Keeping you close in my thoughts and prayers…

  10. When I read this, I recall you sharing that after the birth of one of your sons, that a minister sought you out, because he just had to meet the special lady whom God trusted so much to gift you with the unique needs your baby presented. And now? God certainly has chosen you and the rest of Levi's family for this very thing. You are a blessed family, and he is a blessed little boy! You have such a wonderful way of explaining things, and teaching others – I've not heard of this until now…and in today's newspaper is included a story of a 2 year old girl who is "coping with an unusual speech disorder"…apraxia of speech…interesting to hear from two diverse sources of this same disorder. Awareness is a wonderful thing, thank you for sharing! God bless you "real good"!

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