4 thoughts on “TGIF

  1. Mindy,

    I am the “other” grandma of Afton Jane. Jeanne Fruit has talked to you occasionally, and now you are hearing from me. We do often speak of you.

    First, I do read your post several times a week. I am praying for you and your family, and seeing what it could have been for Afton’s family had she not been transplanted last spring.

    I am looking at your recent post of language. Last summer, after the “sickies” (hospitalizations) slowed down post transplant, I read a book on Language Apraxia that has been helpful for Afton. Apraxia is A=not typical Proxia=language. It is a type of language disability where the connection from the brain processing does not work with the oral motor area.

    I don’t know or care if Afton or Corrigan would be diagnosed with it, but the beginning recommendations of the a book called “Becoming Verbal with Childhood Apraxia” by Pam Marshalla ( a well known speech pathologist who is a trainer for the profession) helped Afton to start language going.

    Afton had almost no sounds. She was so silent. When she had Cit, I think any use of the mouth was screened out because it made her throw up and have distress. She was 1.5 years old at transplant, so we were saying: Say MMMMMa MMMMMa. She’d just stare at us. She never chatted in her bed like other children. She would make sounds once in a while, but not a lot.

    The idea is to go back to the beginning stages of language: Back to getting “crib talk” going. So instead of trying to get Afton to imitate us (she hardly imitates at all…More now on little spontaneous things, but definitely is not able to do so on anything consistently) we began to imitate her. We’d wait for a sound, then imitate it back to her.
    I remember the very first time I did this. She said eeeee. I said eeee. Her head snapped up and she focused on me like “Hey! You heard me! That’s a first!” This stage is called “Pre speech vocalization” or crib talk.

    In two weeks we were amazed at the sounds and language coming out of her. We still hear her verbalizing all day, sometimes when she is alone in bed and feeling ok.

    I guess we do this all the time with younger kids, but as they get older, just don’t. The whole process is about using Piaget’s stuff on Cognitive development to go back to the stage of the child, then bring them up to a higher level of functioning.

    Two weeks after us all doing this, her language play exploded! She now talks all day (unless we want her to or if she is watching tv or out in a busy place where she gets to see that there is a world out there!)

    I’d like to say that she is moving ahead a lot, but … not.
    She is using her voice, practicing sounds, but we are not hearing consanants yet. I wish I had charted the sounds when we started this last summer, so I could see if there are new sounds, but..Oh. Well.

    This book takes a step by step look at going back, before a child imitates and building the structures toward imitating.

    Now, in the second stage, we are going to start verbalizing along WITH Afton, starting and stopping, doing the volume, inflection and etc along with her. This is called Verbal Synchrony. It helps the child to tune into the verbal parts of the body, like diaphram and mouth as he is saying a sound.

    In the first stage, I made a “language bag” that contained stuff to just get her to make verbal sounds. Her favorite thing is the echo microphone (3.00 at Target). She still likes that.

    In her language bag, I gave her a flexible tube with two funnels on it. This is used to talk into and hear/whisper, etc. to just make verbal play fun. Jim Fruit said it was really a “beer bong”. Alas, male humor! I also put in toilet tube, scarves for blowing, whistles, etc. The book asks for a lot more blowing stuff, but Afton is too young for that.
    Now we might add blowing cotton balls, bubbles, baloons, straws with soap bubbles and food coloring in a cup (NO sucking! and keep it where it won’t make a mess!) , using a kazoo, etc. They also talk about making animal sounds and vehicle sounds being easier and a place where kids often start with verbal play. (Boys more than girls)

    So, we as a family are on this journey toward language. She is not getting any speech therapy at this time, but is going to an eating clinic, which also can/will cause a spurt in language, I understand from my reading. So far, four appointments and she is using a straw with 80% efficiency. (Afton has a lot more motor compromises than Corrigan, including significant CP.) That can’t help but help her say “Ooooooo! as in Booooo!, right?

    Have a good weekend and get prepared, we are sending this cold your way!
    Maggie Lundorff


  2. Maggie,
    So good to hear from you! As you know, Jeanne and I have been in contact, well…for years now! Contact with Jeanne was the very first to come from my blog and I have always prayed for Afton, looked forward to updates from Jeanne and even spent a lot of time in prayer for Afton’s Mama and hear health situation. Afton is such a precious little gift and I am so glad that her transplant has “stuck” and that she is growing and such a joy to your family.

    I will look into finding a copy of the book that you recommended. You are right, as Corrigan gets older we do less and less of the simple language exercises and maybe that is the wrong way to approach his delay. Though Corrigan has a fascination (one might say “obsession”) with letters and numbers and thanks to a recent phonics toy from his Aunt Erica is slowly learning the letter sounds. The other day he brought me a letter D and then said “Duh!” He knows how to pronounce 19 of his letters but this is the first time he has connected, phonetically, to the letters.

    The things that you are doing with Afton sound just like professional speech therapy, is this something in your personal background or are you teaching yourself in order to help Afton? because nearly everything you mentioned are things that Corrigan’s therapists have tried, or continue to work with him on! Go Grandma!

    Corrigan also loves his echo mic! The first time his therapist used it, she tried the word GO! and now that is the only word that he will speak into the mic. It is a great, simple, word for practice. “Go” is a great word to work on too because you can connect an action, something exciting, with the word..building anticipation by adding READY…SET…and then GO! Pushing a car across the room, snapping a balloon in the air, dropping a ball from up high, to the ground. GO also just has a nice first consonant and echos really well in that mic!

    We are fortunate in that Corrigan was a relatively good eater the first year of so of his life. He always drank well from a bottle and chewed and swallowed fine. I know there are correlations between kids that are tube fed and have aversions, or difficulties, eating and language development, but Corrigan didn’t get his tube until nearly 2 years old so he got the oral practice up until then. His team has found that Corrigan does not have any muscle/coordination issues with his tongue but he did have some sensory issues with texture, temperature that made him not want to eat. Corrigan LOVES bubbles but his therapist said that teaching a child to BLOW is one of the hardest tasks. Some kids just get it and others, even neuro-typical kids, take much longer to coordinate/understand the mechanics of “blowing.”

    Corrigan is one of those kids. He just CANNOT figure out how to blow. Or spit. We are working on it!

    Listening to Corrigan so clearly enunciate his letters and numbers, and he does work hard to properly pronounce the few words that he does know, it is becoming clearer that the issue is def. not muscle related but brain related. He kind of “pauses” slightly before he speaks each letter or word. Almost as if he has to really think about it, to convince the words/sound to come. He is very deliberate and speech is coming slowly for him.

    If you read my last post, he is fascinated with watching little kids speak. Adults, not so much, but maybe because he doesn’t see anyone his own size they are mesmerizing to him so he really focuses on them and what they are doing. Even their mannerisms. He definitely “acts out” what he has seen after watching toddler’s talking on video, he so clearly WANTS to speak like they do but something in his brain is making it difficult for him. We pray that the switch will be flipped soon, and his therapists are encouraged that it will come, but Corrigan’s brain took a big hit during that neonatal period (day one through 6) and the affect of that damage is rearing its head in learning/language.

    Keep doing what you are doing Maggie! My goodness, it just makes my heart swell, and tears come to my eyes, to realize the amazing support that Afton, Bridget and Aaron have with both sets of Grandparents. Your dedication to Afton, and willingness to go through so much to be a help and support, is just so incredibly admirable.

    Please keep in touch often. Thank you for your comment and all of the information that you shared today!



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