Author: chow128

Fin

One of the most important functions of any communication book is giving the individual a means to express they need Help. That is actually what initially gave me the idea for this project: when a nurse asked my grandpa if he needed help with his medication he could not say he did or properly nod his head yes. This section also provides a means for the person to identify what part of their body is in pain, a scale to tell how much pain they are in, and phrases they may need to communicate quickly such as “Take me to the ER.”

Here is a great resource for helping AAC learners communicate about illness or injury: http://praacticalaac.org/praactical/5-things-to-do-to-help-aac-learners-communicate-about-illness-or-injury/

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This is the last section of my grandpa’s communication book and therefore the end of this blogging journey. I hope that my posts have given you some ideas of where to start and how to go about creating a communication book for your loved one or client.

The most important things to remember are:

1. Involve the individual for whom the book is for as much as possible. After all, this book is going to serve as his/her voice.

2. Don’t be afraid of not doing it “right” that it keeps you from doing it all. There is no right or wrong way…just start gluing some pictures!

3. It’s an evolving process that is going to change as the needs/wants of the individual changes.

4. Don’t just include what you would want in the book.

5. Pictures and photographs, as opposed to words, are the way to go.

Giving back the power of communication is truly the best gift you could give someone. I would love to see and hear about your experience creating a communication book. If you need any encouragement along the way, feel free to contact me 🙂

How are you?

One of the sessions I was able to get in with my grandpa before he passed away included going through different emotions and him telling me whether he wanted it included in his book. I tried to make it as clear as possible that although he may feel a myriad of different emotions, we only wanted to include emotions he would commonly feel or need to express to others. I didn’t want his communication book to be full of pictures he wouldn’t use because this would just create more pages for him to flip through – conciseness was a goal.

In the end, he settled on 16 emotions that ranged from “excited” to “worried.” Feelings is important to include in an adult communication book because nothing could be more frustrating than for someone who can’t express how they feel.

When going through the process of having the individual choose which emotions to include in their book, I suggest printing out pictures of a person expressing that emotion (these can easily be found online). Since emotion is an abstract concept, it will be easier for the person to identify the emotion from a picture rather than a verbal or written presentation.

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Personalize it

There are so many resources you can find online when looking for ideas on what to include in a communication book. One of my favorite resources has been PrAACtical AAC (http://praacticalaac.org/) which has TONS of articles and videos to sift through. However, it’s also important to recognize that the communication book can and should be customized and tailored to the individual’s specific needs. This book will serve as his voice so it’s important to continually ask, “What would he want to say?” or better yet, involve him in the process.

The next section of my grandpa’s communication book is Common Phrases which is a highly individualized section because it is what he would commonly say to communicate with his family, the nursing staff, or his friends. For example, “I need a shave” is a phrase my grandpa needed to tell my mom so she knew when to shave him. Before the book, she would just ask him every once in a while if he needed one. Now, he had a means to request for one himself. For any adult, getting back the power to initiate communication is so invaluable and not feeling like their wants and needs are continually being anticipated.

Another example of a common phrase my grandpa used was “Get my handicap parking placard.” Every time we took him out, he made sure we didn’t forget to bring it. Often he would just grunt before we left as his way of saying to get it. And although this form of communication worked for him, having it included in his book allowed him to communicate this to unfamiliar communication partners and made him feel like he got his voice back rather than having to resort to grunting.

I used Google to find most of the images I included in the book but if you have an actual picture of the particular object or of the person doing the action (such as the picture of my grandpa getting a shave), that’s even better. The more personalized the book, the more meaningful it will be, and the more likely the person is to use it.

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Bon Appetit!

Food is important to a lot of people and my grandpa is no exception. When he first came to the U.S., he actually owned and worked in a Chinese restaurant in Pasadena. Some of his favorite stories and people’s favorite stories about him revolved around food so naturally, it was an important section to include in his communication book. Now that I work with a lot of adults with dysphagia, I am so thankful my grandpa didn’t have any difficulties swallowing so that he could enjoy eating. His assisted living facility didn’t have an immense selection of meals however, his children would often bring him something that they cooked or picked up at one of his favorite restaurants. Although they would often assume what he wanted to eat, he now had a means to request for something in particular.

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Keep Your Eyes on the Ball

Golf page Boxing pageFootball page

The next section in my grandpa’s communication book is TV Shows which for him, really only meant sports. He spent the majority of his days watching TV so it was an important section to include, especially when the guys in the family asked if he caught a particular game. He only expressed two emotions when asked what he thought about the game: frustrated (when his team lost) and happy (when his team won) which is why those icons are consistent on every page. As I was working with my grandpa to decide what to include in his book, I was surprised to find out he watched boxing. He gestured boxing fists to indicate he wanted that included in his book. It made me realize how important it is to include the person in the process of creating their communication book instead of assuming what they want included.

An Alternate Ending

On Sunday, March 8th, my grandfather suffered a massive stroke. Two days later, he passed away peacefully. Although I am saddened to have lost a grandparent, I am so glad I had this project to share with him during his last months on earth.

At his memorial service, many friends and family shared their favorite memories of my grandfather. It brought tears to my eyes getting to hear how he affected so many lives and stories about him – from his first few years in America to the kind of father/grandfather he was. One common theme in everyone’s sharing was the fact that my grandfather loved to talk. Prior to his stroke, family members shared how he would often call them on the phone and could talk for hours about anything and everything. He loved to offer advice – some sound and some not so sound 🙂 It made me realize how much he lost after his stroke – I’m sure he felt like a huge part of him was gone by not getting to speak. I was reminded of the hope and light a communication book can bring to someone’s life by providing the means for them to connect with others again. So though this project will have a different ending that I had originally anticipated, I plan to finish the communication book based on what I know my grandfather wanted included while blogging about the process here. After talking with Dr. Montgomery today about my revised project, I’m excited that the book will serve as a model for future clinicians and clients at Chapman University’s “Learning Lab” Adult Clinic. It’s always helpful to see a sample of what has been done, especially for spouses and family members who don’t have a background in this field but want to get involved in creating the book. My hope is that this project will have a lasting impact and positive contribution long after I graduate. So stay tuned!

It's rare to get all the grandchildren together in one picture but we were able to take this Christmas day last year.

It’s rare to get all the grandchildren together in one picture but we were able to take this Christmas day last year.

Family First

Spring semester started last week which means graduation and this project due date are only a few short months away. Since our family is getting together next week, I wanted to make it a goal to finish the family pages in my grandpa’s communication book by then so he could start using it.

Dr. Montgomery suggested that, in order to keep this book of high-interest, I put my grandpa’s favorite grandchildren in the front of the book (see Elliot’s sample page). I also gave Elliot his own page so I had space to include a couple of pictures about him (e.g. he likes computers, lives in San Francisco) which my grandpa could use to tell other people about Elliot. The rest of us grandkids share a page with someone else and get one other picture about us (see Sami and Amy’s sample page). For example, Amy goes to UCLA so I added that below Amy’s picture.

In my last post, I teased the use of pom poms for my grandpa’s book. I’m actually using them as “page fluffers” which is something added to a page to make it more “3D” so it’s easier for the person to turn the pages. I noticed that at Christmas, when my grandpa was looking through a picture scrapbook my aunt made for him, he needed help to turn the pages which were thin and stuck together. The easier the communication book is to use, the better chance my grandpa will be motivated to use it. They also serve a dual purpose as section dividers in the book. For example, all the family pages will have red pom poms, all the TV show pages will have green pom poms, etc.  Pom poms are just one example of an item that can be used as a page fluffer…I’ve seen some people get really creative and use plastic spoons, buttons, even random junk around the house! It’s easy, inexpensive, and definitely a must when creating a communication book for an individual with limited fine motor skills.

Elliot's Page
Still have to add a picture under Sami! Hopefully she hears soon which college she'll be attending next year so I can add a picture of her school :)

Still have to add a picture under Sami! Hopefully she hears soon which college she’ll be attending next year so I can add a picture of her school 🙂

Pom poms as page fluffers! When gluing them on the page, don't forget to space them out or it will make the book bulge.

Pom poms as page fluffers! When gluing them on the page, don’t forget to space them out or it will make the book bulge.

The Power of Making Choices

Today I visited my grandpa at his assisted-living facility and brought different options for him to choose from including different book sizes, multiple page layouts, and different pictures associated with the same word. First, I had him choose which size book he wanted from 2 different options: a larger binder with a soft cover (so it’s lighter to carry) or a smaller scrapbook. I explained to him that since I wanted him to carry this book with him wherever he went, it was important that it was big enough for him to see the pictures but also light enough for him to carry. He chose the scrapbook.

Next, I had him choose how many pictures he wanted to a page. I created different sample pages and asked which page could he see the pictures best – he went with 4 pictures to a page. We also did some practicing/testing (e.g. “If you wanted to tell someone you were cold, which picture would you point to?”) so that I was sure he really could see the pictures. At times, I adapted “errorless learning” so that he wouldn’t associate the wrong picture to the word. I’m sure we will do more of this once I start training him how to use the book.

Then, I introduced a rating scale I had found on the PrAACtical AAC blog (http://praacticalaac.org/praactical/5-ways-to-use-rating-scales-to-enhance-communication-with-aac/). My original intention was that he would use the scale to tell me how likely he is to use the picture presented but I could see it was confusing him so I scraped it. I explained to my grandpa that I only wanted to include words in his book that he would actually use. For example, when showing him the picture for “worried” I explained that though he may feel worried at times, is this something he would tell someone? At first, I was afraid he wasn’t understanding the exercise but eventually he was able to look at the picture and either move it to the “yes, I want this included in my book” pile or the “no, I will not use this word” pile.

Lastly, with the help of my mom who is one of the people most familiar with him, I asked him what other words/ideas/phrases he would want included in his book that I hadn’t thought of. We decided he needed to have different sports pages for all the sports he watches on TV – tennis, basketball, football, golf. He motioned boxing with his hands to indicate he also watched boxing which I was surprised to find out! Also, pictures of his grandchildren and friends at his facility so he could talk or ask about them.

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He chose this scrapbook for his book

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4 pictures to a page. He also said that a black background was easier to see the pictures vs. a white background.

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Soft cover binder – another great option for a communication book.

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I originally made his Lakers page for the binder so I will need to modify it for the scrapbook

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Explaining to him how this book can support him as he’s talking by just pointing to a picture

Today took more time than I had originally anticipated but it was a good reminder to me of how difficult a task language is for persons with aphasia, something we take so easily for granted every day. But I feel good about the progress made so far and that through this step, my grandpa was able to take greater ownership in the project.

I’m Back!

After an extremely busy fall semester and a holiday break to recover, I’m finally ready to start putting together the communication book! I met with my adviser, Dr. Montgomery, in early December who provided me with some great tips as I get started: 1. Introduce pages around his interests. For example, before his stroke my grandpa enjoyed playing golf and continues to enjoy watching it on TV so a golf page is a must. Although he has 4 children and 8 grandchildren, he clearly has favorites (and I’m not one of them!) so Dr. Montgomery suggested starting with pictures of the favorite children/grandchildren first. By doing this the book will hopefully be of higher interest to my grandpa and thus be more motivating for him to use. 2. Pictures are preferable to words. Pictures not only grab interest more than written words, but they will help my grandfather who, at 93, is starting to lose his eyesight. This communication book needs to be both functional and practical for him to use. It’s also important to 3. Include him in the process since after all, this book will be his. I plan to make some sample pages with different pictures and have him decide which layout he likes best, which pictures he wants included and which ones he doesn’t. I will keep you updated on my progress!