Megan Fry: How a Child Who is Nonverbal Learns to Read: Phonics and Eyegaze/AAC

A child usually learns how to read by sounding out words and receiving immediate feedback from a teacher on those attempted sounds.  As a child who had a disability and was nonverbal, that process could not work for me.
My first communication device had buttons with pictures for each word, but I did not understand how to sound out those words.  Instead, I relied on symbols for each word’s meaning.   In early elementary school, my classmates were taught phonics, and they used their voices to figure out new words.  As a nonverbal child, I was not able to sound out new words or listen to my own voice attempting new words.  Because of this limitation, my teachers taught me to committ each new word to memory (sight words) instead of phonics.
As I grew older, I slowly realized I was behind my peers’ reading level.  I was so focused on figuring out each word by sight that my reading comprehension skills suffered.  I would pretend to read just to fit in with my classmates.  When my teachers would ask me questions about what I just read, I would base my answers on the pictures in the book.   My teachers could not see the hidden truth.  I began expressing concerns to my teachers hoping someone could help me, but they often looked away in denial.  When they did try to tutor me, they did not know a way to teach a nonverbal child phonics.
With a low reading level, I needed auditory assistance on tests and assignments, which led to me being pulled out of the classroom often.  I purchased an OCR software called NaturalReader that could read anything to me aloud.  With only having to plug in my headphones, I could still be in the classroom!
Finally, in my freshmen of high school, a teacher took me under her wings and taught me phonics.  Week after week, we covered one phonic at a time in her classroom after school.  She slowly sounded out words to let me hear her voice as if I was sounding them out myself.  This slow, methodical process helped me make the connection between letters and sounds, and my reading skills began to grow.
As I made the committment and put in the hard work to make myself a better reader, I became more confident in school.  I still use NaturalReader when I have a long passage or book to read, but my reading comprehension skills have skyrocketed right on time for college.
By Megan Fry

My Elementary School Story with Eyegaze and AAC (Augmentative Communication) by Megan Fry

Today, my social media manager, Megan Fry, is sharing the story of her elementary school years!
My Elementary Story (Megan Fry)
With cerebral palsy, I was just a rag doll that was nonverbal and bounded to a wheelchair.  My mother put me on the bus to go to school on my third birthday.  Within a few days, my teacher saw a spark of intelligence in my eyes — that was the day the battle began for me to participate socially in my elementary school years.
The school system researched which assistive device would help me communicate and complete my assignments, and purchased my first device, the DynaVox.  I accessed the device with two head switches. Although I was using pages with only a few buttons at the time, I quickly learned how to communicate with the world.
As I increased the number of buttons on a page and used more buttons to communicate, I started interacting with my peers. I would come home and tell my mother how many friends I had made that day. I had sleepovers, movie nights, and girls’ nights out.  A phone call came for me one evening.  My mother answered, and a small high-pitched voice asked if she could talk with me.  My mother ran to me with excitement, and I asked her to put the phone on the table and on speaker.  Although it took me awhile to formulate what I wanted to say, the conversation between my high-pitched friend and me lasted more than an hour!
As a student in a general mainstream class, I wanted to participate as much as possible.  During reading circle time, every student would take turns reading aloud to the class.  I learned how to download a book on my computer and make it read aloud.  The next time my teacher asked the class who wanted to read that day, I immediately pushed play on my ebook.  Joy filled the room while my teacher glanced at me with tears in her eyes. In that moment, I felt like I was finally contributing in my classroom.
Without assistive technology, I would be trapped in the darkness of my own body. I can face the world now. The DynaVox helped me blossom into a social butterfly during my elementary years.

AAC In Action! My Employee, Megan Fry

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My social media manager is Megan Fry.  She uses AAC and eye gaze for all her communication and work. She is an incredible young lady who is a great employee. My communication with all my employees is primarily by text and it is no different with Megan. She writes posts for me and schedules social media as well as doing occasional research.  Megan has offered to tell her story for my blog. Her first post will be published tomorrow. It’s all about her elementary school years using AAC and eyegaze.

Setting Goals for Your Child and Skyrocket Their AAC Use

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When working with a child who is nonverbal, it is very important to develop goals toward their communication. Using an iPad or communication device to speak (AAC), requires a systematic process. When families make goals, they achieve results faster! 

SMART goals are very popular in the business world.  This goal setting framework has helped me frame my business goals in realistic and achievable ways.  This framework will help you focus on your goals for your child, give you a method of accountability, and help you meet the goals! 

SMART is an acronym for: 

S = Specific – Make your goal detailed and specific.  This could include who, what, where, how, and when. 

M = Measurable – Make your goal measurable.  This includes details about measurements and tracking details.  

A = Attainable – Make your goal attainable.  You and your child should be able to be successful with the goal. 

R = Relevant – Make your goal relevant.  The goal should be meaningful to you and your child.  

T = Time Bound – Make a time limit for your goal.   

When you go through these five steps, you will really know your goal and understand how you are going to meet it.  This thoughtful method of goal setting is very powerful! 

Here are the steps:

Write your goal:

Specific:  Make your goal specific (who is involved, where will it happen, what will happen, when  does this need to happen, how will it happen)

Measurable:  How will you measure your goal?

Achievable: Can you reach this goal in a reasonable amount of time?

Relevant:  Is the goal relevant to you and your child?

Time Bound:  Does your goal have a time limit? 

Example Goal:

Sam will use his AAC device to say “hi” his teacher every morning when he enters the classroom for an entire week. This will be accomplished in a month. 

Specific:  Yes.  Who – Sam and his teacher.  Where – In the classroom.  What – Say “hi” with his AAC device.  When – Each morning.  

Measurable:  Yes. Every day for a week. 

Achievable: Yes.  He can activate the device and has said “hi” a few times. 

Relevant:  Yes. It will increase his AAC use and social language. 

Time Bound: Yes: It will be accomplished in a month. 

Find out more about how to help your child communicate with an iPad or communication device with my book, Talking With Tech: Solutions for Children and Adults Who Are Nonverbal. 

https://www.amazon.com/Talking-Tech-Solutions-Nonverbal-Technology/dp/1976035937/ref=sr_1_2?ie=UTF8&qid=1527563399&sr=8-2&keywords=talking+with+tech

Make Summer Fun and Educational!

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Summer is wonderful! A relaxed schedule, long days and family time all make for incredible memories. School seems far off but it will be here before we know it. By making a few plans and being strategic, you can make the summer educational while having fun. Here are a few ideas:

  1. Plan pretend play everyday – Play is a child’s work. Children of all age benefit educationally and socially from pretend play. Pretend play can be casual – play with stuffed animals, toy soldiers, dolls or a dollhouse – or very structured such as an activity like an Escape Room.
  2. Board or card games – Board games and card games foster cooperation, turn taking and good sportsmanship. Playing board games on a regular basis during the summer keeps children in the habit of structured activities while they are bonding with their family. Some of our favorites include: Candy Land, UNO, Monopoly, Clue and Apples to Apples.
  3. Educational Apps – If you need some down time, make your child’s screentime educational. There are many fun apps that will also build academic skills. I’ve written about many of these on my blog, www.yourapplady.com. A few of my favorites for math include: Todo Math, Hungry Guppy, Marble Math and Marble Math Jr and the Dragonbox apps. 
  4. Cooking activities- Cook with your child and have fun while working on math, following directions and sequencing. There are some great resources with recipes and tips on the web. One is www.cookingwithkids.org. Another good one is www.thekidscookmonday.org. The app, Tasty by BuzzFeed, is available for iPhone and iPad. The app contains recipes with step by step videos to follow. The app also allows you to export the ingredients list for grocery shopping. 

Have a great summer! 

Betsy

Crowdsourced Hospital Tips

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It is hard being the mom of a child with a disability. I have been living this truth for twenty years. My son, Henry, has been hospitalized over 100 times in his life. We also know many other families with medically complex kids. I asked them to share their best hospital tips with you. Here they are!

I bought a cheap $10 tiny coffee pot and take it with me and all my own coffee stuff! Too many times I can’t or won’t leave the room and I at least have my coffee, I have many more because we are always there but that is my #1!

I also buy the really large bag of trail mix and keep it for hospital at least it is something easy and not completely junk to have if it is an unplanned trip.

The Starbuck Via instant coffee is pretty decent. Costco sells 24 packs of them. My husband likes to get the flavored creamer shelf stable pods which will help any coffee…

I pack tuna, oatmeal, packets of mayo and relish, honey and instant coffee and creamers, I keep a prepaid debit card loaded with $100 specifically for inpatient stays, IF I leave the room.  Wireless phone charger, iPad and laptop with notebook, adult coloring books and pencils, reading book, and highlighters.   I also keep colored markers and plain paper to make signs throughout the room about my child.

Definitely having portable chargers and more than one device.  Critical few on clothing – like yoga pants and tshirts. It’s ok to wear the same outfit for days – just brush your teeth. Bring your own pillow and maybe a sweater because it’s always cold even if you can adjust the temperature.  Sleeping is probably not likely to happen – nights are usually worse than days for getting rest.  Make sure you are up early as the parent to catch to folks that round pre-dawn so you can have your say.  Be prepared to have to repeat history multiple times as everyone will ask from the med student to the resident, fellow, attending. Make sure you keep notes so you can remind folks of what to look for. And make friends with your nurses they are what stands between you and going home.

I always take a grocery sack filled with snacks, cereal, teabags, quick meals, a loaf of bread, oatmeal, peanut butter, etc. since the cafeteria at our children’s hospital closes early. I take at least two light weight quilts for each of us to use. I keep several boxes of unopened Kleenex in my car so I will have them during our stay. Take a sharpie to put your name on stuff. Extra chargers for electronics stay in my car at all times too for unexpected admissions. We don’t live close to the children’s hospital so I have to keep my car stocked with a lot of this stuff and ready for the unexpected drive. Word puzzle books are a necessity as well as my bible.

When I shower at the hospital, I ask for 4 bed sheets. I put them on the bathroom floor so I can get out of the shower and step directly on the floor and dry off. I never touch a hospital floor with bare feet…ever. I always take an empty ikea bag to hold all the things we end up coming back home with such as the things volunteers bring to the kids. 

I take my own pillows to the hospital if I have enough notice. If I don’t, I ask for two pillows and two cases. I put both pillows in one case and then put the extra case over that going in the opposite direction. It give my neck better support and I try to avoid touching those nasty things. 

I take Clorox wipes and wipe down all surfaces, phone remotes, etc because they never get it clean enough in a hospital.

Take your normal meds with you…. often it takes much too long to get them unfortunately!

 

What is is your best tip for hospital stays?

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