Grace is so lucky to start her school day this way!

Coming into class:

Flag salute & Good Morning:

Grace is here!
Teacher, later said, that she didn't think she'd ever have to tell G to stop talking! :)

 Getting the class started:

Grace told me about her school day!

I picked up Grace after school at our regular pick-up spot. Her para (assistant) told me some bits and pieces about Grace's day. I love these bits of info because usually Grace can't tell me anything about her day. Then, I gathered up her equipment and saw her PODD communication book was missing. So the para went to get it while Grace and I waited.

I asked Grace, "How was your school day. Did you enjoy it?"
I kid you, not, but Grace touched her nose (her sign for "no")
I said, "Oh, you said, 'no,' you didn't enjoy your day?"
Grace touched her nose, again, then touched her ears.
I said, "Oh, it was too loud today?"
Grace signed, "Yes," by touching her chest.
To recap: Grace told me that she didn't enjoy her day because it was too loud.

Just after our exchange, a different para of Grace's came up and asked if the first para had told me about Grace's morning, the time when this para was with Grace. She hadn't seen/ heard our conversation but went head and told me this little story about Grace's morning:

It turns out there was a surprise fire alarm at the school, today, meaning unplanned by everyone except another curious student. This para was with Grace and realized that this was the "real" thing and had to get Grace out of the building. During planned fire drills, Grace along with a handful of other students are taken outside before the alarms go off because they are so loud. The para tried to cover Grace's ears as much as possible but was also focused on getting Grace out of the building as fast and safely as she could. It sounds like she did the right thing.

So- back to the afternoon pick up: Grace told me something about her school day!
How incredible and exciting is that!

Of course, I would never have known about the fire alarm loud noises if the para hadn't mentioned it but I was able to understand from Grace that she had had a loud day because Grace had communicated that to me. AWESOME.

PODD Frustration Galore

I figured out why I get so frustrated with PODD sometimes. The frustration comes when I try to use PODD to say what Grace needs/wants to say. What I mean is I will use PODD and try to say what Grace looks like she needs to say to me at that moment. Then it's frustrating because she doesn't seem happy about what I choose for her to say to me. But, that is the wrong way to use PODD.
When I stop and look at the situation and remember all the rules and how-to's of PODD use, I remember that I am to use the communication book to "say what I want to say" in that moment. Right now, I am modeling what I want to say to Grace- not what "I think" Grace wants to say. I can not possibly know what Grace wants to say. I can guess what Grace needs or wants but I can not know what she wants to say in any given moment. It's much more relaxing when I recognize this.

Posting about PODD in summer

Summer vacation came and chances to post flew out my window. We are working with PODD all the time. I am still trying to make Grace's personalized book. I have found that I am not doing all the pages in high contrast symbols as that is not needed at this time. The main pages that she uses all the time are being switched. The book is heavy to carry around all day,every day. But, we're getting used to that and it's s worth it, for Grace's sake. The personalized book will be a little more compact and I think a little less heavy as it won't have a ton of page protectors. We'll see.

Enjoying the Rain

Personalizing PODD

Personalizing PODD is awesome. Yeah, it’s a lot of work but oh, so worth it! Originally I printed out the generic 12 per page PODD book. I put it all together by putting the generic pages in page protectors, taping on the page numbers and threading all the pages onto 3 split key rings. I’ve added a binder back to use as an easel. I started right off using the generic book. After my first two weeks of using the first 2 pages (Quick Words, only), I ventured onto page 2a via [more to say]. I worked with this generic version for a few days and quickly figured out that I needed to make this page more personal to Grace.

Page 2a- generic version

Moved columns around

First I moved the columns around. Then quite quickly I decided to go ahead and start adding the high contrast symbols that I think Grace could see/use better. I also moved some of the icons around as you can see below. It’s incredible how easy I flow through the book when it’s personalized for Grace.

Page 2a personalized for Grace

The activities page, our page 11a, is the best example of personalization so far. I changed the generic page to Grace’s preferred & regular activities. You can see the difference here:

Page 11a- generic version

Page 11a- personalized for Grace

Personalizing this page has made communicating with PODD flow so quickly for Grace's regular activities. For example: As the weather has become nicer we go outside all of the time. I can zip through Grace’s communication book so quickly to communicate that we are going to do water play outside.

“Grace, I have something to say”

Starting on page 1- [more to say]

turn to page 2a- [I want...do an activity]  

go to section 11a [outside activities]

go to page 11e [water play]

Repeat in English Word Order: “ Grace, we are going outside to play with water.”

And I get big smiles and usually a happy “yes or please” signed by Grace.

Note that this page does continue with a touch of [turn the page] to offer additional regular activities on 11b. I see from the picture above that I have already personalized the page again. Since that picture I moved the [watch TV] to 11b because that is not a regular activity for Grace. I put [squeezes & pushes] in its place. And as I review the page while writing tonight, I think I need to put in an icon for [activities at school] so we can get quickly to regular activities done at school. This icon will have a number in the top right corner to get it to the school section- section 25, I think.

Personalizing Grace’s communication book is like magic. Once I modify a page to suit Grace’s needs, it’s amazing how communication flows while using the book. And I can tell Grace knows there is magic in her communication book. She gets time to process what I am saying as using the communication book slows down my speech. She sees my hand movement around the book and knows that she gets something from my using this book to talk to her. I feel Grace really listens when I use the communication book to talk with her. And, she’s still reaching for her communication book from time to time, like she has something to say. It’s happening, I believe.

Side note: As I proofread this post, I realized how cool it is to say, "...with the nice weather we are always going outside.". Just a few years ago, when we moved into the house we live in, now, I remember having such a hard time getting Grace to be happy outside. We didn't spend much time outside. Now, we have a hard time getting her to stay inside. This make me happy.

Maybe- just maybe, I believe

We were on the porch the other day. I was busy cleaning the turtles' tank and Martin was playing water with Grace. Grace started fussing a bit with him and then started hitting her Communication Book. I stepped in to help with the navigation of the communication book. While touching keywords on her communication book,  I said to Grace, "Grace, I have something to say. It [looks] like you want to change [more to say] your [activity]. "I see you want to do a different activity. [outside activity] [not] [water play]... You don't want water play anymore..." Then Grace reached out and hit the book. Her index finger was closest to [ball]. And I swear Grace looked over to the side where a white ball was laying on the ground next to her wheelchair. "You want to play ball with Martin.” Grace then patted her chest, which means "yes or please." I picked up the ball and gave it to her and Martin joined her play. She was happy. And I was thrilled. I believe Grace knows her communication book is meaningful and gets her what she wants, when she wants it, where she wants it.
BTW: The words in brackets are the keywords I touched as I navigated Grace's Communication Book. I found, this is an easy way to indicate words in her Communication Book when writing

Into The School

Yesterday, I took PODD into Grace’s school. I did training with Grace’s Special Ed teacher and speech therapist. I taught the “How” to use PODD language with Grace’s Communication Book in the school setting. Wahoo! Instead of just having her Communication Book at home, it now will be with her at school, also. Now, Grace will have her Communication Book with her, 24 hours a day, 7 days a week. What a giant step in this journey. The way I presented PODD to the school was I focused on the Smart Partners. In a way, I almost took Grace out of the picture at this point. I did this because I really wanted the people who are going to help Grace navigate through the Communication Book to understand that learning PODD is not just about the icons. Traditionally, introducing icons was really about the icons symbolizing something. In Grace’s past, the icons often represented 1 single object. However, becoming a Smart Partner involves so much more than seeing & knowing a symbol. (Another post will have to be written about this concept.) A smart partner will read the environment, Grace’s temperament, body language, and gestures along with using the Communication Book. The beauty of PODD is the Smart Partner’s role and abilities. In addition, I want the Smart Partner to understand that right now they are the ones learning how to use the book. They are going to carry the book and use the book to communicate to Grace, to say what they, themselves, are wanting to say to Grace- not what they think Grace might want to say. We do not have a clue what Grace might want to say, we do not know what anyone else wants to say. I created a general time frame of “Phases.” The first phase will be all about Establishing Habits. The Smart Partner will learn to have the book with Grace and preferably within her reach at all times. The Smart Partner will use only the first 2 pages of Grace’s Communication Book, which have the “Quick Words.” And the Smart Partner will learn to use [ooops!] when they make mistakes. We all do and we all will make a ton of mistakes when we are learning to use PODD. As we are learning to use the book in these early phases, we are already modeling the use of Grace’s Communication Book to her. The key to Grace learning to use PODD, herself is the repetition, modeling, immersion, and seeing others communicate in a way that Grace will learn to communicate. The best example, Linda Burkhart gave at the workshop was that in the first year of a newborn baby’s life, we talk to the child for a whole year before expecting the child to speak back to us. That is why it is so great that Grace’s school is willing to take this on. Grace will now be immersed in the PODD language all day long, everyday. I am thankful to her school team who is eager and excited of the potential of helping Grace learn this language, just as I am.

Yes or No for PODD use

It would be really helpful if Grace had an understandable Yes and No for her use with PODD. She is good at using her "please" sign as YES. She pats her chest for YES pretty regularly. We are on the edge of getting a regular "no" by Grace touching the side of her nose.She can say "no" in context of reading a certain book and with a repetitive game of saying "no" but we are trying to generalize it so that Grace can learn to say, "no" especially in response to a given item or suggestion. This video shows a practice of getting Grace to say, "yes" for the bubbles, not just reach for them and PODD use.

PODD use is messy

It's only the first couple of weeks and anything new is bound to be unorganized, strange and messy. But, I feel quite discombobulated using the PODD with Grace. I look at the Quick Words on the first two pages of the PODD and try to come up with things I can say with Grace. But then when I am with Grace and using the communication book, I just have to touch icons and spur of the moment add to them and vice versus. It's good to follow the rules and only access the first two pages in the beginning, but I have manipulated some of the words quite a bit to fit our conversation.There's a [go away] that I have adapted to use as "shall we go," many many times. Technically [let's go] is a pragmatic branch starter and found a bit later in the book. Sometimes I start to touch an icon to 'keyword' my phrase that I am saying, only to find no appropriate word available, so then my hand does this little sweep up away from the page. Like anything, I know it will get easier with practice. Also, not all these quick words are appropriate for Grace. This is the generic book we are currently using. I'm keeping notes about what words might be better or more relevant for Grace's quick word pages in her personal communication book.

Week 1 with PODD

This was spring break. A good week to begin to incorporate the PODD communication book into our daily lives. We were generally home all the time. If not, PODD went with us. I took PODD on our walks and to therapy and everywhere. Following the suggestions for a first-timer, I stuck to the first 2 pages most of the time. The words on the first 2 pages are called "Quick Words." The words from Page 1a and Page 1b that I used the most were: [stop][help][finished][more][I love you][just joking] and especially [look] and [I don't know]. The last 2 words were used often. There were many things I could point at [look] then point at to communicate to Grace to look at: her siblings, the rabbit, the tree, the water, the pretty flowers, etc. And [I don't know] came in handy so often because at this point I still just don't know what Grace is saying so often.[Uh oh] came in handy lots of times when we were playing and I think Grace hit at it several times, too. I don't know if she intentionally hit at that icon or she was just trying to touch the book but I went with it and used it often. At the Easter Egg hunt she attended,
an egg fell down her jacket and she hit the PODD book on page 1a on the icon [uh oh]. Coincidence? I don't care. I called it communication and boy did we have a laugh about that egg in her jacket, uh-oh!

PODD post

Our PODD software arrived yesterday. I can't wait to get started.
It has been a long two weeks, waiting for the software. I first wanted to use a coupon code to get it a little discount. Wouldn't you know it but there wasn't a sale or code anywhere online that included the PODD this month. After patiently waiting (only a week), I called and asked the phone representative if she knew of any codes. She was able to find a discount code for 20% off. Wahoo! Then I waited for the software to fly across America.
During that long wait, I started recopying my notes from the workshop- the parts I really needed to review & that apply to Grace. Kinda boring work for you to know about but it's all part of the process to get this up and going for Grace. And really the long wait was only two weeks but when you are as excited about giving your daughter language as I am, it's a long time.

Oh, I also started working harder on helping Grace develop a definite "Yes" and "No."
Grace has a good "yes" by patting her chest.I'm trying to convince her to add a head nod with it.

The "no" has been much harder for Grace. I think it is hard for her to shake her head left to right and vice-versa.. There might be a sensory thing there. But, when we are reading her favorite Biscuit books, I can get Grace to reach up and touch the side of her nose. I'm trying to get her to push her nose a little so that she turns her head as she touches her nose- creating a turn of the head. It would really help if she could do this consistently and in more settings then with her books.

Now, I need to print out a draft copy of the generic communication book so that we can start practicing and give Grace access to language. The people who help navigate the communication book are called "Smart Partners." They are anyone who is willing to learn how to use the communication book for Grace. To teach Grace how to use the book, her Smart Partners need to learn how to use the book and get comfortable carrying it around. I'll provide a picture of her draft communication book as soon as it's ready.
We begin with a draft quality communication book because we need to feel out how Grace will use the book. Will she be more auditory- listening to her SMP (Smart Partner) saying the vocabulary? Will she want to look for the word, herself? Or will she want to touch the symbols? Will she have enough vocabulary with the book I have chosen for her? There are several options of which type of book to print out. I will explain why I am starting with the communication book that I am, in another post.

A Voice for Grace

Watch out world! Grace is going to get a voice of her own real soon.
I have been attending a workshop about PODD (Pragmatic Organisation Dynamic Display) with instructor Linda Burkhart. I have no doubt that this is the language Grace will learn to use and become a functional communicator: talking to whom she wants, when she wants, wherever she wants. The PODD is not another "system" for Grace but a language that will become meaningful for her to use to communicate. She will be able to communicate with PODD with the help of a smart-partner, which I hope becomes all her friends, teachers, therapists and family.
This workshop has flown by, I have only one more day, left. We are in class, 8 hours each day and I just can't get enough information. I am filled with an energy of awe, admiration, promise, inspiration, empowerment and certainity. I hold a strong belief that Grace will take to PODD and we are going to learn a lot more about a very lovely young girl. I just know it!

Grace's Wish

Create your own free digital slideshow

Foil Ribbon

Like any kid, you give them fancy, expensive toys and what becomes their favorite toy- the box or the packaging or in Grace's case, a piece of the shiny, crinkly foil ribbon that once wrapped a gift, long ago.

Back up Photos

How many times do I tell myself, I need to back up photos. We have lost several years of digital photos in the past. You would think I would learn. But, no. Once again, I lost some recent photos of Grace that I really wanted to post. I was trying to save them and move them into categories but managed to delete them the other night, late the other night. Bummer. Note to self- don't move photos around late at night. The photos are of Grace swimming. One of these days, I will be able to show you our happy-happy Grace, swimming in her new hot tub from the Make-a-Wish Foundation. Grace now has year round access to a swimming pool. We are so excited for her! P.S. You may notice that I changed the name of Grace's Blog. It is still the same Grace you should know if you have signed up for the posts previously. Just thought you should be aware of the different blog name.