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Any Augmented Communication Users?

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    Any Augmented Communication Users?

    Our two and half year old son has a trach and can not use his vocal chords. He uses a combination of sign and an iPad app for augmented communication. His expressive language skills are significantly behind his developmental stage and his receptive language abilities.

    With the help of his speech therapist, we are focused primarily on increasing core vocabulary on his talker right now. He does offer appropriate and reliable head shakes for yes and no, and he points, so I can sometimes adjust oral language/fine motor questions towards those sort of expressive answers. Sometimes I ask the questions and then answer for him.
    Example using ABC book - Me: "What is Sammy doing?" Pause. Me: "He is sipping soda!" (I don't expect a response because he doesn't have any words available to him to answer that question. Sipping, soda and drink are not priority words to have on his device or in sign right now. No plans to teach those words soon either as this is the only context we would use them.)
    Another day I might review by saying "What is Sammy doing? Sammy is sipping soda, isn't he?" (expect head nod for yes) "Yes, Sammy is sippy soda." or Me: "Is Sammy playing?" (expect head nod of no) "No, Sammy is sipping soda."

    Questions: Are there other augmented communication users on this forum and how do you manage the specific book vocabulary and the oral language questions? If your child isn't ready to have the suggested vocab words added to their device, how are you incorporating those into life? Also, any ideas on managing scripture memory when using an augmented communication device?

    Lastly, this little guy is 100% g-tube feed due to aspiration. Some days I can do the food related activities with him simply as a sensory experience and keep it light and fun. Some days it breaks my heart to work with food with him and constantly have to say, "No eat." He sits with us at meals and takes his g-tube feed while we are eating. This is a priority for us for all the social aspects associated with being at the table together. He has a basket of small quiet toys, puzzles, crayons, etc that he can do at the table during a meal. But he very much understands the purpose of food, he watches us eat, and he wants to eat. How have other parents of children who can't eat orally explored all the wonderful sensory options associated with food without it becoming a tempting situation? How have you managed food prep as a family or practice setting the table knowing the child will not personally benefit from the work? Do these activities become a foundation for learning to serve others?

    Thanks for any insights!
    Wife to Rich - 27 years.
    Step-Mom to DS age 33 years, 30 years. Mom to DD 26 years old and DS(s) 23 years, 22 years, 21 years, 17 years, 3 years.
    Grandma to baby girl due June, 2016.
    Began homeschooling in 1992. Graduated 6. Use a mixture of curriculum for DS (Senior year '16-'17). Use SC for 3 year old.

    #2
    Just a quick note of background for readers:

    Kim is a longtime homeschooler who is currently teaching her young son with Simply Classical Curriculum Level A. Any suggestions from families in similar situations would be welcome. Clearly she already has good ideas for adaptations!


    Some notes to Kim:

    Focus on Service
    I think you answered one of your own questions near the end, when you suggested that as your son helps set the table, he receives an opportunity to serve others! This is so important to instill early. Such thinking has made a powerful impact on my own twins over the years. (This occurred in part by witnessing your own family's habits of helping with chores from an early age.)

    We have some unusual dietary needs here, but my son can prepare special food for his sister, even though he does not benefit. Focusing on service, as you suggested, is key. This is normal family life. After all, few of us benefit directly from folding the socks of others!

    We want our children with special needs to enjoy lives of service, not merely "receiving services." Especially for our children with significant special needs, this change in mindset can be powerful. Small tasks can help them gain a sense of belonging while developing a healthy habit of thinking outside themselves. Setting the table, giving each person a napkin, eventually "hopping" the table at the end -- all of these may help your son become more a part of the meals over time.

    Even today, my own daughter has a strong tremor in both hands and cannot help very much with cooking, but she enjoys drawing some representational image to depict each person on a place card. (Given her fine-motor difficulties, we often need to ask what the image is, so this adds to the enjoyment!) My husband might receive a lawnmower, my son a book, and a flower for me. We keep a stack of index cards accessible for this purpose. Folded lengthwise with the blank side visible, these make nice place cards. Dinner guests especially appreciate her personal touch. Initially, your son might just select one color to paint or draw for each person. As he grows, perhaps he can write or trace names. We have also practiced handwriting with these.


    Another thought:
    Table Prayer
    Because I know your family to be a praying family -
    You might consider praying before each meal to include such words as, "Thank you, Father, for the food you give us in every form." Your son's receptive vocabulary is strong, so you could then be specific with the words he understands to describe the various forms in which people can receive nourishment.

    Or if you would rather not call attention to this, you could draw the prayer's content away from food to simply give thanks for the people gathered: "Thank you for gathering our entire family around this table, because seeing the face of each person in our family -- [name each person here] -- strengthens and encourages our family at every mealtime." Perhaps even call it a gathering time, rather than a mealtime. Many families include a devotional reading after a meal, because everyone is gathered. You could conclude with, or even post, one of our favorite verses of thanksgiving: "God sets the solitary in families." Psalm 68:6 NKJV


    I hope some of this helps as a springboard for more ideas.

    Thanks-
    Cheryl


    Simply Classical: A Beautiful Education for Any Child

    Comment


      #3
      Wonderful Ideas!

      We want our children with special needs to enjoy lives of service, not merely "receiving services." Especially for our children with significant special needs, this change in mindset can be powerful. Small tasks can help them gain a sense of belonging while developing a healthy habit of thinking outside themselves.

      I needed this reminder today. Thank you Cheryl. Yes, we want him to serve not just receive.

      You might consider praying before each meal to include such words as, "Thank you, Father, for the food you give us in every form." Your son's receptive vocabulary is strong, so you could then be specific with the words he understands to describe the various forms in which people can receive nourishment.

      Excellent! Thank you filling in the words I was missing. He loves to pray and multiple times a meal will call our names using his talker and then stretch out his hands like we do for prayer. I have added AMEN to his talker and we model that after we pray. But your brief prayer made me realize I could also add a prayer as a phrase on his talker so that he only has to hit one button to activate the whole phrase. I've wondered how to "practice" saying the Lord's Prayer or Apostle's Creed for participation in church. I assumed I would break it down into phrases and teach him how/when to tap each button to stay with the congregation in unison. Starting with this one phrase at meals will be a fantastic foundation for lengthier prayers to come.

      Or if you would rather not call attention to this, you could draw the prayer's content away from food to simply give thanks for the people gathered: "Thank you for gathering our entire family around this table, because seeing the face of each person in our family -- [name each person here] -- strengthens and encourages our family at every mealtime."

      Another great idea! This would also reinforce using his talker at meals. I can allow him to find his sibling's names on his talker and help contribute to our prayer time. Thanks.
      Wife to Rich - 27 years.
      Step-Mom to DS age 33 years, 30 years. Mom to DD 26 years old and DS(s) 23 years, 22 years, 21 years, 17 years, 3 years.
      Grandma to baby girl due June, 2016.
      Began homeschooling in 1992. Graduated 6. Use a mixture of curriculum for DS (Senior year '16-'17). Use SC for 3 year old.

      Comment


        #4
        Hi Kim

        I'm one of those here to offer moral support! Our older son, now 7, did not speak until he was 5. And his receptive and expressive language at the age of 3 was virutally nonexistent. He could only string vowels together. No consonants. Very little pointing. He was a super happy kid (we called him "Guy-Smiley-The-Smiley-Guy") but did not even understand simple sentences. As his understanding and temperament were not yet ready, we did not use a device. But I did have to give myself a crash course in ASL (while my daughter, 2, toddled around, and I was pregnant with our youngest). Our daughter also has significant processing issues, though her speech is much better than Winston's. The baby (now almost 3) is so far the most verbal all three children have been at this age, but he still has delays and issues. So I understand some of your challenges.

        Two things:

        1) While you may ask yourself if what you are doing is "working" some days, trust that everything you are doing IS important. And it IS "getting in". Winston remembers stories I read him when he was your son's age. Even though, at the time, I had no idea if I was just reading to myself. "The Very Hungry Caterpillar" and "Goodnight Gorilla" have to be hidden away or he will love them to pieces -- literally. So keep going. The Q&A you described with "Sammy" (from Dr Seuss ABC's) sounds almost exactly the same as the Q&A format I STILL do with Winston -- and he's Level C.

        One tip: Ask either-or questions and let him choose. I still sign "pick-choose" in ASL to my kids when we are doing school. It gives them an opportunity to answer and it gives me insight into whether they know the answer and the material being covered. It also gives them power and the opportunity to feel proud that they answered correctly.
        Example: "Is Sammy playing?" (one thumb out) "Or is Sammy sipping?" (Other thumb out) "Pick, choose" (alternate thumbs, like a wild hitchhiker) And let him point to the correct thumb. Reward a correct answer with a sticker or a notch on his behavior chart (if you use one).

        Also, since questions are a pathway to understanding, conversation and expression but he might not have the expressive ability to answer (even with a device) giving him an answer (even one of several possibilites) is GREAT. I did this with Winston for a LOOOOONG time. Now he is beginning to answer himself. Just this past week, he has started to be able to answer open-ended questions. (!!!) As our SLP would say, cast and recast, cast and recast, cast and recast. Eventually it "clicks".

        2) I will echo what you and Cheryl discussed about our SN kids not just "receiving services" but offering them too -- even when there is no tangible reward. The gains they make from the self-mastery, independence, initiative and (sometimes) courage that service to others requires cannot be overstated. The BEST things we could have given Winston for his growth and development were siblings! He helps take care of them very well. I call him my "Big Helper". And is there anything more beautiful than someone with significant challenges using ALL their heart and soul to make the world better by serving others? Most people with stellar abilities can't come close to the beauty of that! These beautiful, challenging children are close to the Heart of God because (if we rear them in His Love) they will use everything He has given them, not just part. The potential of that is, literally, awe-some.

        Best to you and your family. God bless you for YOUR service to your son and the rest of your family. Huge hugs.
        Boy Wonder: 12, Seton and MP Electives (Special Needs)
        Joy Bubble: 10, Seton and MP Electives (Special Needs)
        Snuggly Cowboy: 8, Seton and MP Electives
        The Comedian: 4, Seton/MP Pre-K, though she’ll probably zoom through that in a week.

        “Have no fear of moving into the unknown. Simply step out fearlessly knowing that I am with you, therefore no harm can befall you; all is very, very well. Do this in complete faith and confidence.”
        ~Pope St John Paul II

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