Angelman Syndrome, AAC and everything in between
Over the last three years, we have shared over 500 business cards and now we have run out. These cards were given to people who either needed information or were so curious, they’d ask questions I didn’t find appropriate answering. Besides, I don’t believe we should talk about someone in front of them, it’s rude. With Jess’s permission, the cards allow us to share her story. [Read more…] about She found her voice by Chance
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. [Read more…] about There IS a reason for everything
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.
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.
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!
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.
The problem with having fun is you want to have more of it.
It’s sad to say but having fun has become a problem.
This all started when we tried to diversify Jess’s week. Jess has been with a day program, five days a week for awhile now. It’s a social group that is kept on the go. The only downside is that they aren’t able to support her AAC device very well (They try but there is too much turnover to maintain consistency. This is a chronic problem in this field) In the beginning of the year, an opportunity became available for Jess to partake in another program for two days a week, we jumped at it. The second group said they could/would support her Talker and their focus was on pre-vocational activities. This seemed like a pretty good balance so we took a chance.
Unfortunately, the good times were not to last. A few months in, the second group fired their manager without finding a replacement first. This left the girls working the program without any guidance or support. When the job trainer that we liked pulled me aside and shared that she was looking for another job, I realized this support program was not going to survive. Immediately I asked Jess’s first group if she could return to five days a week. Was told YES, they have space available. In order to get the ball rolling, we had to end the second group and submit our request. I didn’t learn till after the fact that even though they technically could accommodate Jessie, they didn’t have the support staff which meant Jess would not be able to return until they hired more people. It’s now going on two months and Jess is without services on Thursday and Friday.
Self-direction means we are ‘suppose” to be able to customize Jess’s week and create a program that meets her needs. I wish that before we tried to “expand” Jess’s opportunities that we had been forewarned “change at our own risk”. This is when reality smacked me in the face. There just aren’t enough quality programs available.
As they say, when you are given lemons, make lemonade. We have been making the best of Jess’s two days at home. In fact, there’s been too much fun. We’ve taken advantage of our time together by doing things we haven’t had time to do and also work on tasks that she needs more time to complete.
The result of too much fun reared it’s head last Tuesday morning. Jess saw a different driver and refused to get in the car and go to the program. When Jess says no, there usually is more to it. Based on what I’ve been able to gather, Jess has been listening to the drivers’ talk/complain and now there is only one support staff that she likes. I’m constantly reminded how people talk in front of the non-verbal, assuming that they don’t understand. I explained to Jess that just because they are unhappy, doesn’t mean they are unhappy with her, it doesn’t mean that they don’t like her either and not to take it personally. I think this is a girl thing. Anyhow, I explained that there are parts of their job they just don’t like. In this case, they don’t like driving.
When Jess refused to get in the car, I gave her a choice. Either go to the program or spend the day in her room. She chose her room. One of the most effective ways to make my point is to ignore her, no eye contact and no talking. Here’s the rub. The last thing I want to do is not model language. It’s important to treat her like anyone else. Sometimes the silent treatment is a very effective tool. However, It was suggested that I still use her Talker, but not directed at her and I found this effective.
Punishment is too strong a word. Jess wasn’t being punished per se, but I don’t want to reward her by making this time at home too enjoyable. It’s her job to attend her program. The purpose of her program is to make her world bigger. Even though it’s a social group, she has picked up life skills. She goes with the flow when transitioning from one activity to another. We also are enjoying each other’s company on shopping errands and when traveling too.
I explained to Jess that she has her work to do and I have mine and neither of us can accomplish this if we don’t do our own work. The following day, Jess was back to schedule.
By Thursday, it was a different story. It’s our day for fun. We went to the market, cooked together, did laundry, had company for lunch and then we went shopping at our favorite store in town.
Chance on Main is a little shop where Jess can browse to her heart’s content. When we arrived, she saw a young man she knew. Jess is a little flirt. She was all smiles and giggles. This was the first time that they both paid attention to each other, he was smiles too. I love capturing these moments.
While I was picking out a gift, Jess checked out a backpack, bracelets, chocolate covered coffee beans and then settled on a pair of Elephant pants, which she tried on when we returned home. To my surprise, they are adorable! Not only are they cute, but 10% goes directly to supporting elephants (this is something my mother would have loved. Our family has a special fondness for elephants).
The majority of the items at Chance on Main supports the local community as well as from abroad. It’s a store whose soul focuses on opportunity, not fast fashion. There is something charming about the homemade gift. I was raised that these were the most valuable of all, the ones that you crafted yourself. Check out tyler’s blog Something to Say.
This long Memorial Day weekend, we are balancing work with fun. Jess needs to help me work in the yard and tidy the house before company comes. I think we will set a place for my father at the table. I just realized that he would have turned 100 in February.
After we have fun, we will all go back to work.. work gives us purpose, fun needs no explanation…life is about balance.
