Guardians of the Galaxy, music and summer colds

Groot is a non-verbal celebrity in our house!

Right now our favorite movie is Guardians of the Galaxy, Vol 2. At first, I thought there must have been a wager involved when this movie was made, something to the effect.. “any movie can be made better if it has a good soundtrack.”.  Actually, the producer wanted to connect the mainstream audience with those that love science fiction. The end result was the 1980’s Walkman has much of a starring role as do the actors.

Baby Groot. He’s even cuter in person in that “only a mother can love kind of way”

There are some people who only like to watch a movie once but Jess and I both enjoy watching our favorites repeatedly till we know the lines. Where I find Chris Pratt charming, Jess is enamored with baby Groot, We both love the music and the opening scene with Groot dancing gets her dancing too.

Where the audience hears the same phrase, “I am Groot”, the other characters understand the literal meaning of each utterance. Jess has a few words. She often says “Mom, Mom, Mom”, however, she does produce specific sounds in place of words. I’ve caught myself filling in the blanks based on her inflection. Of course, I can’t read her mind and we rely on her AAC device for her to communicate. How cool would be if in the next movie Groot has his own AAC device!

Of all the characters Jess has seen over the years, baby Groot is the first one that she has taken a shine to. I’m venturing a guess that she relates to him because he is non-verbal. Even though he only says the one phrase in every situation, it shouldn’t be assumed that he doesn’t have complex thoughts. Jess can attest to that.

Baby Groot does have problems following verbal instructions. When Yondu asked him to find his prototype fin, he returned with underwear, a space rat, and Vorker’s eye. After a few more attempts, he finally got some help. When Jess was younger, if she was asked to get something that was in the other end of the house (her shoes or socks), she’d either get lost along the way or return with something that caught her eye. This isn’t a problem for her now. In fact, she rarely gets sidetracked and has become the finder of my glasses and keys.

The scene where baby Groot is pressed against the spaceship window gave me the idea to get a Groot for my car. It would help me identify it in a parking lot because there are always at least three cars the same make and color. Unfortunately, as soon as Jess saw Groot, her eyes got big and she claimed him for herself. I have to admit, Groot is pretty cute in his own way.

Yesterday, Jess came home with a slight cough. This morning, she felt warm and I’m guessing it’s the beginnings of a cold. The best medicine is to stay home and rest. She’s laying pretty low right now. It’s probably going to be a movie day. I betcha can guess what we will be watching!

Peace out.

Don’t feed the Sharks

It’s summer and who doesn’t like a good shark tale?

When Peter Benchley wrote the book Jaws, he happened to live down the street from my parents. I babysat for his family a couple of times and his kids even rode one of my ponies. After his book came out, they moved from our small town to Princeton. Thanks to him, no one wanted to go in the water in the summer of 1975.

Racing outrigger canoes in Maui

Years later, I was living on Maui and spent as much time as possible in the ocean. My girlfriends and I raced outrigger canoes and the local boys took us night fishing. We oohed and aahed at the site of Humpback whales but when the fishermen spotted barracuda in the water, we decided to get out of the water. My diver friends saw manta rays, Moray eels and the occasional sea turtle (they were still being hunted at that time, however, now they are showing a resurgence). The only time I ever thought about sharks was after hearing about a surfboard being bitten. The joke was not to wear a swimsuit that was the color of yum-yum yellow.

On our last visit to Maui, we went to Olowalu reef. My friend had suggested it because the water is shallow and the waves tend to be flat. Jessie and I stayed near the shore and my husband snorkeled out a bit farther.

Later that night, as we were sharing our day with my friend, she turned to another guest and asked, “how long ago was that shark attack?”.  I don’t recall if the answer had been five or ten years, it was a detail that didn’t seem very important. All I could think of why did she send us there? cue music.

With July 4th weekend nearly upon us, they are showing movie trailers for Jaws. I don’t believe Jessie has seen that movie. I’m not sure if it is a good idea or not. We just got her comfortable swimming in the ocean and I don’t want to alarm her. She freaks at the sound of E.T. and I’m sure theme music for Jaws will haunt her too, just like it does everyone who has seen the movie.

Thank goodness we don’t have to worry about sharks in the pool, at least not until we hear the music.

And one more thing, don’t feed sharks. This woman just learned this lesson the hard way.

Stay cool.

A day in the life of an Angelman Mom

My favorite day is Monday. This is when everyone goes back to where they belong. Husband to work, Jess to her program and I do the voodoo that I do. In less dramatic terms, my job consists of all those things people pay others to perform. Except for balancing the checkbook, mowing the lawn, oh, and working on the cars, my to-do list is everything else not named above.

Sure, being a stay at home mom sounds glamorous, and working mothers have looked at me with envy, but don’t think I’m eating Bonbons on the couch.  All I’m saying is the grass isn’t greener. In fact, my private pasture is rather isolating. At least my job isn’t as stressful as those who have to juggle home with work, however, it’s a FACT that they get paid better. (I get paid in hugs and kisses so…not complaining).

Though it may appear as though I make my own schedule, it really revolves around her health and the families needs. When Jess first started attending school, it seemed as though she was sick at least once a week (along with the rest of her classmates). We spent our spare time either visiting specialists or going to therapy, some of which I could only get appointments during the day. Even so, I was able to work part-time when Jess was in school and my boss did not grief me when I needed to be home. Not everyone is so fortunate.

As soon as Jess recovered from the flu that kept her home all last week, I came down with a cold. Disrupted sleep, long nights and being “hands-on”, my resistance was low and it was only a matter of time. When the nasal drip started, my paranoia, fear of what was to come, ran rampant. Fortunately, I only developed a summer cold. I felt lousy but it could have been much worse.

The first time I had the flu was years ago. It happened within a week of having my one and only flu vaccine. That strain of flu was rather violent compared to our recent experience. I remember asking my husband, “can you please stay home?”

“No, I can’t, I have meetings” 

Fortunately, my sister drove two and a half hours to help me off the floor and into the bathroom.

A day or so after I recovered, my husband came down with the same virus. The sweetest words I ever heard were, “I’m sorry, I had no idea, I was wrong”. From that day forward, he never ignored my request for help.

Today’s thoughts upon waking were about taking a nap. I took this as a sign that I needed more rest and canceled my obligations. By 8:30, Jess’s ride hadn’t shown. Her Program told me that staff had called out and they were short handed but a ride was coming. 45-minutes later, I learned that the driver had forgotten Jess and they were sending a car for her asap. At 9:45, her ride arrived. I’m not upset with the driver. She was picking up the slack and this wasn’t her regular route, however, in her rush she didn’t have a complete list and Jess was missed. Once a month they have early dismissal and, of course, that happened to be today. This is the first problem we’ve had with this group. The school buses were famous for not showing up at all. I’m happy those days are behind us.

As much as I wanted to rest, I ended up dealing with SSI (for Jess). Last week I received a second notice that I had missed an appointment, however, I never received the first notice. The letter threatened to end her services if I didn’t respond. All previous calls I made had gone into voicemail. The third time was a charm and did get to a person. It was then I learned my contact person only works part-time, so I was fortunate that she answered. A phone meeting has been scheduled and the problem resolved. That’s a win.

Even though today wasn’t great, we are all on the mend and Mondays are still my favorite day. As I read this, I realize my life is ordinarily boring and I’m okay with that. These are times I can catch my breath.

There are no random words

It had been awhile since we attended Church. Crisis, illness, and travel kept us away. As we drove over the river and through the woods, Jess rocked out to Swingtown. When the song was over,  I turned the radio down and she then began to tap on what seemed to be random words. To anyone listening, it would appear there was no method to her madness.

Wrong.

This is what Jess does in her spare time. She taps words she hasn’t used in awhile so she can refresh her motor planning. Jess also does this to warm up before she starts a conversation.

It’s hard to explain this to people when they are seeing an AAC device for the first time. They don’t realize how long it takes to put sentences together. They also expect longer sentences. Jess, can and will, but only when she is not pressured and is given enough time to form her thoughts. 

Later, I don’t remember what Jess did to prompt me to tell her “she’s the smartest” (she said something pertinent and clever) but she told me I was “right”. There are no random words…she knows exactly what she wants to say.

AAC Awareness, 365

Jess prefers to order for herself at restaurants

While traveling this weekend, we stopped at a Publix to pick up a few necessities. On our way out, a woman ran up to us, pointed to Jess’s iPad and asked, “ what is that?” For a split second, I thought she was just curious and then I realized, she knew it was an AAC device. Most people assume Jess’s iPad is for entertainment and they don’t realize it is her voice. 

Quickly, I gave her an overview::

  • Speak for Yourself can hold over 14,000 words and only has two layers.
  • Words are added as we use/need them.
  • Repeating a motor plan is how we remember where the words are.

Before the woman returned to work, I handed her Jess’s card. I wish I could have shared more.

This moment was a reminder that Jess needs to take her Talker everywhere.  AAC awareness is celebrated every October, however, in our house it is 365 days a year. You never know who you will meet and what a difference you can make.

 

Chocolate Banana Bread

Jessie likes to talk when she’s cooking

Growing up, my Mom made everything from scratch which meant she didn’t buy bread, cookies or prepared foods. This is just how it was. For the most part, I have followed her lead but I don’t always have time to bake my own bread. 

Jessie prefers making quick breads. They are simple and don’t take all day. When it comes to food, she isn’t always patient. During the summer we make zucchini bread and the rest of the year, she likes making banana bread and chocolate is her favorite:

Chocolate Banana Bread

  1. preheat oven: 350 degrees
  2. grease bread pan, line with waxed paper.
  3. make sure all ingredients are room temperature.
  • 3 large bananas mashed
  • 2/3 cup sugar
  • 2 eggs
  • 1/3 cup melted butter
  • 1 tsp. vanilla
  • 1 1/2   cup flour
  • 1  tsp. baking soda
  • 1  tsp. salt
  • 1/2      cup cocoa
  • 1/2      chocolate chips
  • 1/2      cup chopped walnuts.
  • Avocado*
  1. Mash bananas. Add sugar and eggs, mix until smooth.
  2. Add butter and vanilla.
  3. Combine all dry ingredients (tossing the chips and nuts in the flour helps prevent them from sinking) then add to the bananas.
  4. Bake for 60-70 minutes
  5. *When we were short one banana for the recipe, we substituted it with an avocado. The avocado hides in the background but does make the bread extra moist.
  6. Of course, if you want traditional Banana Bread, just omit the chocolate and cocoa.

It took years to get her to peel a banana properly. It’s the little things we take for granted.

Missed opportunities

Jessie ordering using SFY

We have a saying in our house, don’t state the obvious. However, sometimes what is obvious is easily overlooked. As I was falling asleep last night, I replayed the day’s events and realized I had missed an opportunity.

Because Jess isn’t as chatty at home as she is when we are out, the ice cream social was created. I don’t know which is more exciting for her, having ice cream or seeing Heidi, however, the combination is a magical combination.

I wish I could say Jess had a bevy of friends, she doesn’t. It’s easy to assume that this is because she has Angelman Syndrome (AS) but on closer scrutiny, Jess is particular about who she wants to be with. She does gravitate towards other AS people but she has only met a few. Fortunately, Jess is content with quality, not quantity, and doesn’t need to be part of a crowd. One thing I know for sure is that Heidi is on her A-list.

The staff at It’s Nutt’s know Jessie. Like all their patrons, they never rush her when she’s ordering. On this day, the restaurant was quieter than usual which makes it easier to hear Jessie’s Talker.

photo courtesy Jessie Kay

Exploring features of the 10

 

While waiting for the ice cream to be served (with all the toppings that she ordered), Jess saw Heidi’s new phone and didn’t hesitate to pick it up (only good friends allow others to touch their phone much less explore). Jess wasn’t interested in the apps but instead opened the photos. Somehow, she figured out how to create slideshows (I think they were of Heidi’s kids). After that, she started taking pictures and saw that she could change the filters (our phone doesn’t have this feature). Then she and Heidi played with Snapchat. All in all, it was a fun afternoon and we needed a winter distraction.

Photo courtesy of Heidi LoStracco

One of the biggest challenges being an AAC user is not being able to talk to other people who use a Talker. In this sense, Jess is always the odd man out. This is when I realized that we missed an obvious opportunity. There is no reason why I can’t bring my Talker and Heidi is always packing. As important as modeling language is, it’s just as important for us all to converse with our Talkers because we can. Next time, we will.

Just one more…I don’t like this photo of me but I do like the photos Jessie takes. Of course, these are just some of the unedited photos. At home, Jess uses her old iPad and an iPod. The larger iPhone 10 was easier for her to manipulate.

Jess likes the artsy shots. Courtesy Jessie Kay

 

What You Don’t Know

I read this a while ago but it still resonates with me. When I read this post, I still just want to reach through the computer screen and give the writer a hug. because it reminds me of my child., the child that was out of step with everyone else, including the disability world.

It is lonely when you don’t fit.

If I were to meet this writer, they would see support and understanding in my eyes.

Hopefully, their angst is less now and they are well.

What You Don’t Know About That Wild, Unruly Child 

 

If our life were an AAC game show


If our life were a game show, it would go something like this:

Word of the day Monday. Every time you tap the AAC word of the day (I give her a hint by posting the written word on a door, then she is to find it on her talker) we all yell hurray just like PeeWee Herman! She loves cause and effect. 

Traveling Tuesday.Our best conversations are while we are in the car. No distractions. We’ve got nothing but time to talk. We don’t even need a destination!

New-word Wednesday. A day to add a new vocabulary word.

Two-word Thursday. Must say two words together. Jess is brilliant at interjecting the exact word to interject into a conversation that sums up her thoughts, especially when people talk faster than she can respond. However, when it is just us, she is borderline lazy.

Fill in the blank or Fringe word Friday, . Fill in the last word of a sentence. This can be serious or silly. Silly is more of an icebreaker and she tends to expand what she wants to say. School never gave Jess “homework”, however, that doesn’t mean I can’t.

Secret Saturday. It’s a secret. Even I haven’t figured out the game for the day. I’m open to suggestions…

Short Story Sunday. Sum up the week in a short story. This is a way to model without pressure. Jess often begins this with “guess what” which leads to “and then what happened”.

By the end of the week, I say in my best game show announcer voice,

“Jessie, what have you won?”  (To the tune of the Prices Right)

“You have won a bigger vocabulary! Because you are more interesting people will want to talk to you. You are a winner (actually she is just fortunate) because 9 out of 10 people that are non-verbal don’t have access to a speech AAC system”. In reality, the percentages probably aren’t this high. 

This may all sound silly but talking isn’t always fun for Jess. Of course, these are our games and you can make up your own.

Either conversation moves too quickly, or we fall into using the same script trap. It’s like my asking my husband, “how was your day?”  It’s just too mundane and predictable. This is one of the reasons Jess liked SFY. She wanted fringe words at her fingertips. Without easy access, her old AAC device became an expensive doorstop. The words she had been seeking were the ones no one thought she needed. We don’t want her to be an AAC casualty.

Who knew?

If you ask her, she did.

If minds are not kept moving, then they stay on idle. If you are idle too long, you may need a kickstart. When it comes to talking, we need to engage