Knowing the context

Sometimes, it’s a mystery what Jess is trying to tell me. Yesterday, she bounded through the door, tapped her Talker and said,

“Police car, visited, carnival, pizza”.  I said, “sounds like you had an interesting day”!

Did you see a police car when you were having pizza? As for “carnival”, she did come home wearing Mardi Gras beads so, it’s anyone’s guess. Regardless, Jess was excited to talk to me, it all came out at once. Then she ended our conversation with “ha ha ha” and off she went with Roxy.

Jess’s comments may seem random but this is only because I don’t know what the context was. It made sense to her when she said it but it isn’t as easily understood if you weren’t part of the conversation. How many times have you walked up to people and didn’t follow what they were talking about until they brought you up to speed? It’s no different with Jess.

In the mornings, I try to have AAC modeling time. Recently, as soon as Jess sees me get my Talker, she leaves the room. Funny, I have the effect on people. I share a home with non-talkers…sigh…but…when they want something…they’re in my face and they won’t shut up!

This really is no surprise. People talk when it’s important to them. Reminds me of the joke about a boy who didn’t talk. Years later, he spoke his first words, the mother asked why he hadn’t talked for all these years? and he responded, “because up until now everything had been satisfactory”. (If you watch the video, there’s one comment that annoys me. Because he doesn’t talk, they think he’s “stupid” their words.  Seriously? These aren’t mutually exclusive. Just because someone is not talking doesn’t mean they aren’t intelligent. It’s the same erroneous logic speaking louder to a deaf person. SMH)

Maybe life is too easy for Jess? Maybe I need to leave some things unfinished so she has something to complain about? Hmmm, I could get the husband talking more using this logic but I don’t need to go borrowing trouble. He already wonders what I do all day.

If Jess doesn’t clear her words on her Talker, I can see what she said, or I can go into the history feature which tells me everything, as well as when she said it.

The best ways to get Jess to start monologuing though is to talk about what interests her. Once the pump is primed, the skies the limit!

“So, Jessie, where did you get those beads“?  She’s a straight arrow so I’m pretty sure all she did was smile to earn them.

Frustration; it’s why I blog.

When I started writing, three and a half years ago, there weren’t many blogs about young adults with Angelman Syndrome. It seemed once your child aged out of school, they might as well have dropped off the face of the planet. I wanted to know, what happens next? So, I started writing about Jess, an older Angel, hoping that something I said would help another parent. By sharing our journey, the mistakes, the lessons, and the success, maybe, just maybe someone else would benefit. In our own way, we have been trying to pave a way.

At one time, there was little expectation for the Down Syndrome community. However, the parents pushed and questioned what they had been told was possible. By presuming competence and raising expectations, the perception with regards to abilities morphed into “anything is possible”. I believe the Angelman Community is following a similar path.

When Jess was finally given the correct diagnosis (at 13), she was taken off the educational track and the focus was on self-help skills. This was done with my knowledge, however, I was naive. I didn’t realize why the change until years later. I didn’t realize that the diagnosis caused the shift. I dumbly followed schools lead believing they had her best interest at heart.

Because communication is the foundation for learning, my main focus for this blog has been about AAC. These are the bullet points that you need to know:

  1. if you child isn’t able to communicate, you can ask the school for help, but most likely, you will need to research AAC apps and devices yourself. Be aware that SLP’s are not created equal and are not required to take courses in Augmentative and Alternative Communication. They learn after they graduate, on the job and many do this on their own time. Where once speech was about articulation, there’s a growing need for SLP’s to be versed in AAC technology.
  2. When asking for supports from school, put it in writing. They will kindly blow smoke up your butt making you believe action is taking place when it is not. Requests do not exist unless it is in writing.
  3. AAC evals are only as good as the person giving the evaluation. A two-week trial isn’t enough to know if the AAC is a match.
  4. If you succeed in getting an AAC device, insist that it comes home with the child. Consider the device a voice prosthesis. A child wouldn’t leave a wheelchair at school and come home without one and they shouldn’t leave their voice at school either.
  5. Ask for training, not just at school, but in the home too. You need to know how to support your child. How can they be successful with an AAC app unless you are able to model comfortably? You can’t just hand the child a device and expect them to talk and they especially need someone to talk to.
  6. Get the whole family involved. Get your friends involved. Have your child out in the community using their Talker. Share with those that have never seen an AAC app in action so they understand this is your child’s voice and not a toy. Not only will this help your child but will make your child’s world bigger because it will encourage acceptance.
  7. There is no such thing as too old to learn.

For Jess to have a voice and the ability to speak for herself, it has been life-changing. If you are reading this and are waiting for school, do me a favor. Stop talking for an hour or two and try and communicate to your family. Or go out into the community and try and get help. You will learn quickly how difficult it is to not have a voice. So how old is your child that isn’t talking, seven, twelve, eighteen? Do you think you could be as patient without a voice as they are?  If they’re acting out, then they have given you their opinion. If they aren’t responding, maybe they have given up. Jess was a combination of both. We are trying to make up for that now. It’s the best we can do. The point is, don’t wait for school.

I guess I’m writing about this because I’m frustrated. It saddens me when I learn schools do not follow through and let time go by.  Either it is due to ignorance or because they want to save their district money. This I know because I’ve had many teachers pull me aside over the years saying such. They’d share with me their concerns and how the administration has constrained them. I realize our schools are overwhelmed, however, you have to be the squeaky wheel.

Unfortunately, I didn’t learn all of this until Jess was about to age out of school. I was ignorant about how technology was changing, however, the SFY app wasn’t available to Jess when she was eight (though that first device worked initially, it soon became apparent it didn’t meet her needs).  I shudder to think what Jess’s life would have been like if we hadn’t found her voice when she turned 21. Fortunately, no child should have to wait that long anymore.

PS- I forgot to mention, even though I was labeled “that over-involved parent” and teachers were “warned” about me (told to me recently by one of Jess’s teachers), I didn’t buck the system till her last two years of school. Up until then, I followed the school’s advice. In all transparency, I was that parent whose child didn’t have a (reliable) voice when she was 18.

Humor: it’s the Get-out-of-jail card

Yesterday, Jessie asked for ice cream. It was in the kitchen freezer in a yellow Shop-rite shopping bag. I thought if it was camoflauged she wouldn’t notice it when getting herself ice for water (which she does several times a day). I fooled no one. After getting permission, she quietly put the carten into her backpack. Was this for delayed gratification? Did she want to eat the ice cream later? I know she covets certain foods and will hold on to an apple, cookie and even M&M’s. It pleases her knowing it’s secretly in her possession. As I took the carton out of her backpack and helped her fix a bowl, I told her “ice cream waits for no one”.
I’m sure the snacking rules in our house encourage sneaky behavior. We walk a fine line. As far as Jess is concerned, she won’t get in trouble if Mom doesn’t find out. Unfortunately, she doesn’t have a governor when it comes to food. In all fairness, we are all are trying to be mindful of what we eat. Believe me, there are reasons for these rules:
Mom’s log…March 13, 2017
If you were at our house this afternoon, you would have heard this:
Me yelling…”Sure Mom’s cornbread is yummy, but if you are going to take it out of the fridge and proceed to eat it all, you’re gonna get in trouble.”
Silence.
still yelling…”Yes, I’m mad. I’m mad. I’m mad. Just go. I don’t want you in the kitchen.”
A few minutes later, I found Jess in her room, wearing her St. Patty’s hat and these were the words on her Talker.

Oh, my goodness… using humor to get out of trouble?

Brilliant.

Wee trouble?  No, you were in big trouble, 

Now, not so much because you made me laugh.

This is one of the main reasons I like having a high-tech AAC device. If she pointed to the words, no one would have seen them.  Even if Jess had cleared her words, I would have seen it in the history.

In all fairness, I don’t believe Jess witnesses ice cream melting. It just doesn’t last that long. Thank goodness she has learned how to use humor. It will take her far.

The Morning Dilemma

Ryan is sitting to the right of her. She didn’t want me to post his photo. I got the Oh Mother look when I asked…

It’s cold. To be correct, it’s colder than it has been. Jess waited outside for her ride only to learn that it was going to be late. When the van finally arrived, she had a choice where to sit. Before entering, Jess braced herself at the door. The brisk wind blowing through us made me impatient. I thought she was thinking about how to navigate the narrow walkway but realized the delay was because she wasn’t sure who she wanted to sit next to.

The back of the van has the best view and that is where Ryan was. I told Matt and James that this was not an easy decision for her and that she was lucky to spend the day with them. Matt is pretty quiet. James is the most chatty and always reminds Jess when she needs cash to spend. Alex was to be picked up next. Jess enjoys being with all the boys. It’s fun watching her navigate socially. Jess has always had boy-friends but as she’s gotten older, it’s a bit different. I know who she’s crushing on. She blushes when I talk about it… it’s okay Jess, you can tell your secrets when you are ready.

Brash confidence

As far as Jess is concerned, there are three things car rides are good for…getting from here to there, talking and waiving to boys. The first two are fine of course but I’m a little uncomfortable about Jessie waiving to people she doesn’t know.

I’ve seen this play before. When newly married, we were tooling down Interstate 505 in husband’s Supra. A young attractive woman, wearing a tank top, driving a red convertible, long, blonde curly hair flying in the wind, one hand on the wheel while waiving with the other at my husband. As she slowly passed, she gawked and mouthed “Hello”. Her brash confidence was comic like an old MTV video. She didn’t pay any mind that his passenger was another woman. After she sped off, I turned to husband and asked: “do you know her”?  He said matter-of-factly, “no but this happens all the time, it’s California”…

And here, now, my daughter is the confident, sassy girl. At least Jess’s actions are innocent and there’s no agenda. I’m not sure if it is the age or just a rite of passage that some people experience but she is feeling pretty good about herself. Other’s think this is amusing and say, “she’s a trip”.  Me, not so much.

A moment ago, Jess handed me her lip gloss. She wanted my help. Maybe she does have plans of her own? I’m afraid I’d better buckle my seatbelt. Blossoming self-awareness can be a bumpy road.

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!