Time for tea

One morning last week, we were in a rush. The alarm didn’t go off and we overslept. Like a drill sergeant, I barked “hurry, let’s go, now!”. Within fourteen minutes flat, Jess ate and got dressed with barely a minute to spare before her ride arrived. She didn’t have enough time to tell me what she wanted for breakfast and we didn’t talk about our plans for the rest of the day.  As I waved goodbye, I realized I was still wearing part of my jams.

Even though mornings like this rarely happen, it makes me feel bad. In my opinion, lack of time is the number one reason for communication breakdowns. We can spend hours modeling language but if they feel pressure due to lack of time, then don’t be surprised when not much is said.

Jess has learned to compensate by speaking in a holophrastic manner, using single words to express herself rather than a full phrase. Sometimes her opinion is stated in an emphatic “yes, yes, yes”, but mostly she interjects adjectives such as, “exceptional, ridiculous, rude”. This method is effective when she is with multiple people.

Jess has also learned that one word can be used as an icebreaker. For example, she tapped the word “conversation”, then looked at Dad. She decided it was time they should talk, and they did.  All it took was one word to get his attention and all it takes is one word to get her on a roll.

At home, we encourage Jess to expand her sentences. A single word is not enough, especially if she is requesting something. The rule is, if it’s not in a sentence and if she isn’t specific, then the answer is no. Sounds harsh, but the bar needed to be raised. After imposing our demands, Jess said, “attention you, cookie, more Graham crackers.”     

I love it when she uses words in a different way. Even though she lacks proper grammar in this example, she used “attention” in a way that she hadn’t before. Too often, people look too closely at what an AAC user says and forgets (or doesn’t appreciate the importance) that they need to practice playing with their voice. It doesn’t matter that she said this incorrectly because we have seen her self-correct over time.

We are at the stage where we need to revisit how to have a polite conversation. Typical talkers (those that don’t use an AAC device) learn to ask, “how are you?”, “I am fine, how are you?”. We have never taught Jess to use a script, however, I think she’s ready. I don’t expect her to carry a conversation (not now, not yet) but I do expect her to be part of one. 

Maybe it would be helpful to have an afternoon tea? Jess would enjoy having scones and biscuits with polite conversation. She can practice proper etiquette by not holding her pinky out.

Yes, this is what we will do. If this goes well, she may want to send invites?  Stay tuned.

AAC- Pay it Forward

Every month has a holiday associated with it.

New Year’s, we wipe the slate clean.

June is for brides, graduations and the start of summer.

Then there is October, which is AAC awareness month. Fooled ya. Betcha thought I was going to say Halloween! I’m not afraid of spooks but I am afraid that people don’t know what AAC is.

Over the course of Jessie’s day, she sees only one other person using an AAC device (we call it her Talker). Imagine going to the market, a party or to work and no one expressed themselves or talked the way you did? Jess isn’t speaking a foreign language but she might as well be when she talks through her AAC device. This is why awareness is so vital. Half our problem is that people don’t know what AAC is much less it’s many forms. The other half is the assumptions people make.

For example, yesterday Jess and I were at a planning committee meeting. She saw a plate of cookies and asked for some using her Talker. Fine. No problem. Then she smiled at the lady sitting next to her and did her version of shaking hands resulting in the “oh aren’t you special” treatment (I mean this as no disrespect because Jess does present herself this way. It’s her way of working a crowd).

As the meeting went on, I don’t recall if Jess was making a comment, or was exasperated by the first speaker monologing (there were five more departments sharing reports) when she tapped “ridiculous”. This caused three people in earshot to chuckle and they gave knowing glances. At that moment, the woman next to Jess did a double take, she was re-assessing Jess. I then asked Jess to put her Talker into whisper mode so she didn’t interrupt the meeting again. I’m pretty sure she was bored and wanted to change the subject. 

Whenever Jess goes anywhere, she wears her Talker. Every day she is exposing people to “her” voice. However, we need to do more.

For AAC awareness month, our wish is for every family that uses a device (or any of AAC’s many forms) to Pay it Forward. Tell three friends and ask them to tell three friends. Explain that when they share that they are making our world bigger. I want AAC to be as commonly known as a phone.

And if you are not an AAC family, I want you to pay it forward too. Here’s a sample script:

You: I just met a person that uses AAC

Them: What’s AAC?

You: It’s augmentative and alternative communication.

Them:  What does that mean?

You: Dude you are already using it… when you text on your phone, you are talking without speaking. Some people aren’t able to speak so they use a computer to talk for them. 

Even emoji’s are AAC.

Actually, this script wasn’t made up. A few years ago we were having breakfast at IHOP. I overheard our waiter tell a co-worker how Jess ordered using an iPad.   

Even though we educate people every chance we get, there is more emphasis during October. I’m hoping that when people Pay it Forward we feel a ripple effect because awareness has been shared. 

Remember, knowledge is good!

 

 

 

 

 

Friend or foe, Fox or friend

Often I listen to Talk Radio while running errands. The other day, the host was wondering how news reporters can watch someone in a dire situation and not rush to aid. For a photographer, if they stop, they will lose their shot. Of course, there are times you can’t help and you can only witness. I have read about many who picked up their camera afterward and continued. They saved the day but lost the moment.

This topic intrigued me. Turning the question around, asking what would I do? I’d like to think that I’d jump in to help but you won’t know till you are in the moment.The husband says, there are two types of people. Those that run towards an opportunity or away from a problem. However, there’s a third option, those that don’t react and do nothing.

Later in the day. Jess and I went apple picking with friends. It was a beautiful day to walk in the orchard. The trees were heavy with fruit and it was easy pickings. It didn’t take long to fill our bags with apples.

As we headed back, slowly meandering out, Jess was leading the way. She was about forty-two feet ahead of us ( I’m specific because I replayed this event in my mind. I’ve also walked enough courses for fences to know my stride.)

Just after the bend in the dirt road, I glanced up at Jess and my heart stopped. There was a Red Fox jumping at her feet! Jess had a small bottle of bubbles in her right hand and she was holding it high above her head as if she were playing keep away. The fox seemed interested in what she had and was dancing around her.

Instantly, I started running towards Jess yelling, “go, go, go…”. All I could do was make noise so the fox would move along. I sensed that Jess would want to reach down to pet him like she does when she is greeted by a dog. The thought that should could get bitten made me run faster.

Fox tend to keep their distance from people. To be approached could mean he was sick but this one looked healthy. My guess is he lives in the orchard and has become comfortable with humans, maybe had been released after rehabilitation.  Regardless, I reacted and didn’t think.

While I was alarmed, my friends were not. Was this because it wasn’t their child, or was it because they didn’t grow up on a farm? Their laid-back nature made me feel like a drama queen. (found out later that one didn’t see and the other caught a glimpse, so this explains)

We were a short walk back to the register (where we’d weigh and pay for the apples), Jess voiced her displeasure the whole way. Because I yelled, she thought she was in trouble and protested the unfairness all the way back to our car. She had been minding her own business, hadn’t done anything wrong, was not afraid of the fox and couldn’t understand why she had been wrongly accused.

Over and over I repeated why I was scared. I explained that whenever an animal shows unusual behavior, you need to be careful. It took us both awhile to calm down.

Earlier this summer, the husband saw a Black Bear walking through our backyard. I griefed him about not taking a photo. Now I get it. I understand how he felt. Even though the bear was just passing through, it was unusual to see and he went into protection mode.

It’s been a few days and I can still visualize the fox standing at Jess’s feet, his eyes turning to look at me before fox-trotting off. He did not understand why he was being yelled at. I’m sure he too felt he did nothing wrong. It’s human nature to fear what we don’t understand.

Not till I had shooed the fox did I say “damn, that would have been an awesome photo”.

It’s ironic, after raising the “what would I do” question that I was tested.

I guess the answer depends on what your element is. I may not have street smarts but have lived on farms, This is my comfort zone.

I love knowing that Jess is an animal whisperer. It’s one of her gifts. Animals sense that she will not harm. Dog, cats, and horses are drawn to her, so why not foxes? It’s all beginning to make perfect sense.

Bad choices make good stories

Sometimes I can’t see the forest for the trees. When I watch Jess too closely, I often miss the big picture. I hate it when other people do this and I abhor it when I catch myself falling into this same trap.

A couple of weeks ago, Jess had a day where she did not utter a word on her iPad. I gave her grief about her not making an effort. As it turns out, she wasn’t feeling well. Of course, no one wants to talk when they feel poorly. What annoys me most is that I didn’t allow her this option and I jumped to conclusions. I let fear take a front seat, allowing it to drive my emotions.

That’s the thing about hindsight, it’s 20/20. Can’t tell you how many times I’ve assumed too much and needed to apologize to Jess. More often than not, I say,  “Mommy was wrong”. How frustrating it must be for her to be misunderstood. How fortunate I am that she always forgives me. Thank goodness she doesn’t hold a grudge.

Maybe I need to add the phrase “oh Mother” or my favorite “oh the humanity” so she can express the feeling of injustice? (I will ask her, maybe she will want to say both).

Sometimes, Jess uses non-verbal ways when frustrated. Over the summer, as we were finishing breakfast, she reached over and made a grab for a plate of bacon. As she was lunging across the table for the food (Angelman parent’s, I know you know what I mean), our host caught her by the wrist. Before I could say anything, he turned to me and sternly said,  “don’t say a word”.  

The first thing that swirled through my brain was disappointment. We didn’t make it through our visit without a scene. I never excuse bad behavior, however, I did try to make light of it and was shut down. In hindsight, no one asked Jess if she wanted seconds (this is where I failed). Unfortunately, it was painfully obvious that there was no tolerance at the table. 

This was a humiliating experience. I felt bullied because I know that the host would not have spoken to my husband this way. I felt bad for Jess because she acted out of frustration. After we left, I reminded Jess that she could have asked and then told her that we were all partly to blame. Regardless, this was not handled well. There is no excuse for bad manners/ bad behavior. 

Last night we had more non-verbal drama. Dinner was a two-course meal. We started with chili and then would have Chef salad. Jess saw the salad and objected to the chili. She smacked the table and left the room. So much for family unity.

Within minutes, Jess returned and asked for salad on her Talker and all was well again.  When she cleaned her plate, she asked for more salad. I’m not happy with how she expressed herself in the beginning, however, she pulled it together and we were all able to enjoy our meal.

At dinner’s end, she said, “afterwards anybody want ice cream…eat remarkable ice cream…sprinkles”?  We’ve been on a strict Whole30 diet for the last few weeks, so there has been no dessert. However, I was not going to refuse her after she made such a nice request.

There wasn’t any ice cream in our freezer, one cone at our local drive-in costs as much as a half-gallon at the market, so we went to Shop-rite. 

Not only did I buy ice cream (which was on sale) but I picked up a bottle of sprinkles because Jess had been specific. When I was in line, I changed my mind, returned the sprinkles and purchased M&M’s instead.

Back at home, I told Jess I didn’t get sprinkles. I bought M&M’s. Asked her if she was okay with this. The answer was an enthusiastic yes! Then I added the word “substituted” in her Talker.

This is a typical day in our life.  This is part of our Angelman journey. We are far from perfect, but we are trying to do the best we can. 

Honestly, I don’t know who is the grasshopper and who is the master. 

Learning never ends.

especially when you learn from them.

 

Chasing dreams

Over the summer, I had a bad case of writer’s block. I had nothing, nada, zilch. 

Looking for inspiration, I listened to a TED talk hoping to learn how writers found their spark. One lecture, had me mesmerized. Elizabeth Gilbert shared about poet Ruth Stone, how she “would run like hell home”, chased by a poem. She had to get to a piece of paper to write before the words thundered through her. If she didn’t write, it would be lost. Continue reading

Does she remember me?

Many times, we’ve been asked, “does she remember me?”

Why is it that when people realize Jess isn’t verbal, they assume she has a memory problem too? (They also presume she doesn’t understand but I’m not going to go into that now.) 

Over the weekend, Jess tapped “Grand Daddy” on her Talker.

I asked, “can you find me his photo?”

Immediately, she got up, went to another room, returned with his picture.

I can’t remember the last time Jess asked about my father. He passed twelve years ago, seven years before she got her AAC voice. Though I think of him often, I rarely talk about him. With so many years in between, it makes me wonder what else she thinks about?

I don’t know what sparked her memory. Often when people ask about others, it’s because they want to know more. It makes me realize that I need to share family lore. I’ve been shortchanging her by keeping it to myself.

Jess will be home soon. I’m going to tell her that her Grand Daddy grew up during the Great Depression. Will then have to explain to her what the Depression was.

I’ll tell her when I was a pre-teen, he took me to the 1000 islands on a fishing trip. (I’d better get a map out). After spending the day on a small outboard motorboat, our guide took us to a tiny island, built a fire and cooked bacon, eggs and the fresh trout we caught.

Even though these stories may interest her, she will probably want to hear about the times she spent with him. Photos will help tell the stories.

And, of course, Jess needs to know that her Grand Daddy never stopped researching why she was unable to talk. His generation went to the library and Google hadn’t been invented yet.  We didn’t find out Jess’s Angelman Diagnosis till two-months after he passed.

While reminiscing, we will be modeling language and reinforcing motor-planning memory.

Jess may not share all the details that she holds in her memory, but I assure you, when she sets her mind to something, it’s a steel trap.

I’d better go, Jess and I have a lot to talk about.

 

We had that talk

Well, today it happened.

One of my worst fears realized.

When Jess came home, I noticed there were no words on her Talker. I looked in the history (on her iPad) and sure enough, she did not utter a word all day.

Upon this discovery, I turned to her and said,

“If you do not use your voice, then someone will talk for you. If you do not make your own choices, someone else will decide for you. What do you have to say for yourself?”.

Jess dropped her head in shame. She pondered this for a few minutes, then she said,

 “don’t let the door hit you on the way out”.

I know that Jess hasn’t been feeling well (she stayed home yesterday, did not eat and napped on the couch). I know it’s a struggle to talk when she is on the go with a group.  I know sometimes she doesn’t feel like talking and I know that she doesn’t think people are always listening. However, I will not let her take her AAC voice for granted.

For the rest of the afternoon, Jess wouldn’t shut up and we were both happy. 

I’m so glad we had that talk.

Fringe benefits!

What do these words have in common?

  • Horses
  • Chicks, Ducks, Geese
  • Surrey
  • Fringe
  • Shutters, Eyes, etc…

They are core words from the song “Surrey with the Fringe on the Top”. If Curly sang the lyrics using only fringe words, there wouldn’t be anything to sing about, however, It’s the fringe words that makes the song memorable. No pun intended. (The lyrics are at the bottom of the page. Descriptive language enables you to visualize as he sings.)

Why is this important? It’s important because we begin AAC with core words but often fail to introduce a fringe word vocabulary soon enough. For years, SLP’s asked what interested Jess. They wanted to program words that motivated her. I realize now that they only got it half right. They were focusing only on core words but without the fringe words, Jess lost interest and the AAC novelty wore off.

Jess had unsuccessfully used over a half-dozen AAC systems before finding Speak for Yourself. What made this app different from the rest? The Babble feature. She began with a half dozen core words open, but when she tapped Babble, it opened all the words that had been preprogrammed into SFY, core and fringe. Babble is a not so secret passage to a world that is language-rich and robust.

The first fringe word Jess opened was “exceptional”. For her, this is when the light went on. This is what had been missing. Everyone has their own vernacular and Jess is no different. She doesn’t want a hamburger, without condiments and she definitely wants ice cream with toppings! The fun is in the fringe.

To think, for many reasons, we nearly canceled our appointment to preview SFY. The most obvious reason was, I felt the words were too small (I was wrong). Jess could not isolate a finger and had the attention span of a gnat. Her AAC eval said she was not a candidate for any app that used an iPad (they suggested TouchChat because it wasn’t complex and the words were bigger. Because nothing else had worked, we didn’t have anything to lose by exploring.

What I know now that I didn’t know then is though the barriers were real, they were not permanent.

Adaptation is the key to success. Jess began with a full-sized iPad with a key guard,. She needed a stand because she couldn’t close her hand, her fingers would dangle, resulting in miss hits. She also miss hit a lot of words because her eyes were not WYSIWYG. In other words, she had no eye/hand coordination. However, when she finally did tap the word she was seeking, she’d stop and look at whoever she was with, expressing, “that is what I’ve been trying to say”.  When her needs were understood, this motivated her to practice (she’d go to another room and we could hear her modeling to herself. She’d play with the iPad like it was a game of Concentration. What we didn’t realize at the time was she was learning word placement). As important as any other feature, the iPad needed to be portable and hands free. Doesn’t do any good when it is put away in a book bag. All of these things were adaptations needed to be made in order for her to be successful.

Before the nine-month mark, her attention span grew and her fine motor improved. Presently (4 1/2 years later), Jess steals my iPhone when I’m not looking and opens apps, watches movies, podcasts and even will use tiny SFY (the iPhone version).

The problem with AAC apps that start out with larger words and scale down when they need room for more vocabulary is this changes the motor planning. This may not seem like a big deal, but the user needs to re-learn location.

Why am I writing about all of this now? It’s because a friend’s daughter was just told that they either get PQ2Go or get nothing (it’s the lack of choice that is upsetting, not the app). Because any program will fail if you don’t support it correctly. Because when you keep changing the button size, you mess up the motor planning. Because an AAC should have a robust language already programmed, ready and available. It’s so much harder to guess what words you think they may need and time consuming to add them.

And… because a surrey is more interesting when it has a fringe on the top!

Go ahead, sing this without the fringe words, or open the link at the top for the video, you will get my drift.

Surrey With the Fringe on Top lyrics

Curly:

When I take you out tonight with me

Honey, here’s the way it’s gonna be

You will set behind a team of snow-white horses

In the slickest gig you’ll ever see.

 

Chicks and ducks and geese better scurry

When I take you out in the surrey

When I take you out in the surrey with the fringe on top

Watch that fringe an’ see how it flutters

When I drive them high-steppin’ strutters

Nosy pokes will peek through their shutters and their eyes will pop!

 

The wheels are yellow, the upholstery’s brown

The dashboard’s genuine leather.

With isinglass curtains you can roll right down

In case there’s a change in the weather

 

Two bright side-lights winkin’ and blinkin’

Ain’t no finer rig I’m a thinkin’

You can keep yer rig if yer thinkin’ that I’d keer to swap

Fer that shiny little surrey with the fringe on the top

 

Eller:

Would you say the fringe was made of silk?

 

Curly:

Wouldn’t have no other kind but silk!

 

Laurey:

Has it really got a team of snow-white horses?

 

Curly:

One’s like snow, the other’s more like milk.

All the world’ll fly in a flurry

When I take you out in the surrey

When I take you out in the surrey with the fringe on top.

When we hit that road, hell-for-leather

Cats and dogs will dance in the heather

 

Birds and frogs’ll sing all together and the toads will hop!

The wind’ll whistle as we rattle along,

The cows’ll moo in the clover

The river will ripple out a whispered song,

And whisper it over and over 

 

Don’t you wish you’d go on forever

Don’t you wish you’d go on forever

Don’t you wish you’d go on forever

 

And you’d never stop?

In that shiny little surrey 

With the fringe on the top.

I can see the stars gittin’ blurry

When we ride back home in the surrey

Ridin’ slowly home in the surrey 

With the fringe on top

I can feel the day gettin’ older

Feel a sleepy head near my shoulder

Noddin’, droopin’, close to my shoulder 

Till it falls – kerplop.

 

The sun is swimmin’ on the rim of the hill

The moon is takin’ a header.

And jist as I’m thinkin’ all the earth is still

A lark’ll wake up in the meader.

Hush, you bird. My baby’s a sleepin’

Maybe got a dream worth a keepin’

Whoa, you team an’ jist keep a creepin’ 

At a slow clip, clop.

Don’t you hurry little Surrey 

With The Fringe On the Top.

Modeling is forever

If I expect Jess to be part of the conversation, I need to speak in her language. This isn’t because she doesn’t understand what is being said, but because it puts us on the same playing field.

A casual verbal conversation is between 110 to 150 words per minute. Jessie’s conversations are much more succinct. If she’s on a roll, she’s closer to 25-30 wpm. This huge gap creates a communication divide. 

When I model in her Speak for Yourself language, our conversations are evenly paced. Not only that but she’s much more willing to volunteer information.

It’s become obvious that modeling language will never end. Though I model every day, I realize that I’m not doing it enough. Short bursts of modeling do not equal a whole conversation.

Modeling is an integral part of our life. I’m afraid it’s easy to fall into the trap and think “I will model till my child starts talking and then I won’t need to”.

Just as we don’t stop talking to a child that is learning to be verbal, we shouldn’t stop modeling AAC either. Modeling AAC isn’t just about building vocabulary or answering requests, the ultimate goal is to have a conversation.

I must confess. I don’t model when we have company, which means inadvertently, I’m excluding Jess. My only consolation is at least I’ve recognized an area that needs improvement.

Another aspect for me to remember is what Jess told me the other day.  After denying her repeated requests, she said,

     “I’m 25 years old” and then proceeded to tell me what she wanted.

I modeled my response,

     “Well Jessie when you put it that way, how can I argue? 

And then, we were both happy.

Modeling is forever.

 

Mama’s got a brand new bag!

On Friday, when Jess returned home, she greeted me by holding her Talker like it was a dangling fish on a line. The strap had broken. As much as I love the iPad, I hate the cases available to us. Every AAC device we’ve had has had the same issue, they break where the strap attaches to the case. Unfortunately, this problem needed to be resolved quickly or Jess would be without a voice.

It’s important for her to be able to wear her Talker. This allows hands to be free, as well as, immediate access to the iPad. The carrying strap is my insurance that she won’t lay her Talker down and forget it like it was a set of keys. This doesn’t mean Jess hasn’t taken her Talker off from time to time (I highly suggest setting up the Find Phone app) but since she started wearing it, I have yet to find the Talker in her backpack after being out for the day.

The iAdapter was her first case. At the time, it was the Cadillac of cases. It had a stand, built in speakers, a carrying strap and appeared to be robust if dropped. The downside is it’s bulky, expensive and it too has strap attachment issues.

When the iAdapter warranty ended, I was tempted to get another one, but just like an old boyfriend, you remember why you broke up. We chose the Otterbox instead. This case has proven to be robust, but let’s just say the strappy is crappy.. I don’t believe that the carrying straps were meant for such heavy use, thus the design is less than desired. My best guess is that most people either hold their iPads in their hands, or it’s put in a bag until needed

I have no issue with the Otterbox case itself, but I must figure out how to adapt a new carrying strap. My best solution was to sew something. There is a company that makes bags, but I see a major flaw in their design and we couldn’t wait. Sometimes knowing what you don’t want is just as important as knowing what you do. I knew I could build a better mousetrap.

Initially, I thought I could rework a bag we already had and be done with it but quickly realized that new construction is much easier to manipulate than old construction. I scrapped this idea and began from scratch. 

Now that the first prototype is complete, I know how I can streamline the process and produce a slicker looking product. 

Who knows, maybe Jess will want to embellish her own bag? Instead of wearing a boring iPad, she can now make a fashion statement!  

Post title inspired by James Brown