The Ringers

Rhea, Jessie and Nicole

The best parties look effortless. When every aspect of the event has been thought out, guests feel comfortable. If you’ve ever gone to a bat mitzvah, or sweet 16 party and they have music, no doubt they will have dancers. I call them Ringers. These Ringers make sure everyone is on their feet and they keep the party moving.

We are so fortunate that Jess gets to attend dances like these once a month. Tonight she met two new Ringers, Nicole and Rhea. Jess relies on first impressions. When they greeted her at the door with a smile, this set the tone for the evening. As I left, I knew Jess was going to have a fun evening.

We are grateful to all the many volunteers who give up their time on a Friday night so they can make a difference in someone else’s life. For this parent, this is a big deal and we thank you! 

Jess has been going to this dance for a few years now. It’s taken her that long to get comfortable. The music is loud, there’s a lot of activity, as well as, new people to meet. These social situations are good for her. Besides, she doesn’t want to hang with her parents all the time.

PS- Debra and Hope, a pleasure to get to talk to you tonight! This is a nice start to our weekend! Thank you!



Her Secret Life…

Usually, Jess rides shotgun. Even though she has no problem getting into other people’s personal space, she has a thing about her own and can get pushy, so she sits up front.

Today, when Jess returned, I was surprised to see she was riding in the back of the van.  As soon as I peeked in, I knew why. She was sitting next to Ryan.

Ryan is one of her favorite boy friends. He likes talking to her and she enjoys listening. At the mere mention of his name, she giggles. It’s important to be with people that “get” you and you don’t have to explain yourself. (darn, I should have taken their picture, next time)

It was obvious Jess had a good day. She tells me a little bit on her Talker, but most of the time she keeps me guessing and doesn’t share many details, thus her secret life.

Tonight there’s a dance in Princeton. Any moment, she will want to get ready. I wonder what dress she will choose? I think she wants to wear her Witches hat. It goes with everything! The hat is the only part of Halloween she cares about. Long ago are the days of running from house to house filling her bag with candy.

The gym floors were just refinished. They said “no spiky heels”. Not a problem, she’s a sneaker kind of girl but socks will do too. I’d call it a sock hop but she can’t hop.

Sometimes Jess dances. Sometimes I find her sitting on the side watching. She likes to hang out with the adults while she observes. This isn’t for lack of confidence, she’s been known to walk up to the boys and pull them onto the floor. She’ll do her signature moves, “the goal” and the “bop” and then leave them hanging.

At the end of the night, as soon as she sees me, she runs the other way. She wants to stay and doesn’t want the night to end. 

Dance night is date night for us. Most of the time, we are a party of three, however, this is the one night out of the month we are left to our own devices. It’s not enough time to see a movie and too much time for a leisurely dinner, but we are not complaining.

Jess attends a day program and they are always on the go. It balances out this mom who isn’t that much fun anymore. Outside of church and these monthly dances, there’s not a lot of things for Jess to do.

Even though she rarely appears to be lonely, she does get bored. I wish she had a friend to hang out with…sigh…

This isn’t to say Jess doesn’t have a best friend. Roxy is devoted. They enjoy watching movies together. One of Jess’s chores is to feed Roxy and sometimes shares her meals with her too. 

It’s time to get a move on. Time for you know who to get pretty.

All for now.

There IS a reason for everything

These last few weeks have been difficult. Jess has been grinding her teeth. Like nails on a chalkboard, this sound makes me cringe. As it became increasingly constant, it felt like Chinese water torture. When she started grinding her teeth at the dinner table, I couldn’t take it anymore, she pushed me over the edge and I asked her to leave. Continue reading

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.