Mary1991

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.

 

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.

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.

 

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 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! 

 

As I recall our early years, I’m reminded of a song from the movie Gigi;

We met at nine, we met at eight, I was on time, no, you were late

Ah, yes, I remember it well

We dined with friends, we dined alone, a tenor sang, a baritone

Ah, yes, I remember it well…

When it comes to remembering specific dates, as to the correct order events took place, please forgive me for discrepancies. I’m pretty certain that one of my first blog posts was correct, however, at this point when I look back, I’m afraid some of the dates might be off. This is what is so interesting about memory. What feels so important at the time isn’t as critical years later. Regardless, I get annoyed with myself when I get it wrong.

With negative experiences, it’s been a gift not to remember. Those painful moments are not recalled with the same intensity as when they happened. For example, when pregnant with Jess, I had sciatica. I couldn’t sit without feeling a sharp shooting pain, more like an electrical shot coursing through my body. Just before her birth, I experienced 24 hours of back labor. The only relief was to stand in a hot shower. I sobbed while the water washed my tears away. Yet, within minutes of Jess being born, I remember looking at her and saying to myself “I could do this again!”  

I guess the point is, as we go through these type of events, as quickly as they rear their ugly head, they are soon behind us. Most of the time we had a reprieve before facing the next challenge. Some challenges take longer to resolve than others and some we will never fully be resolved. We do our best to find ways to negate them.

I’m happy that my brain doesn’t leave a lot of space for the traumatic moments . Though I shudder at the thoughts, I find my mind has allowed more room for the people and events that have brought me pleasure. Hopefully, this is a sign that I won’t grow into a sour old woman. I’m grateful for how I remember things. For me, it’s better believing the glass is half full. If you think about it, half a glass may be more than others have, so be grateful for the manna you have been given.

…just one more, I can’t write about memories without thinking about Tom Hanks in “Big”.

This is our Goldilocks story regarding protective iPad cases, except our story, has a happy ending.

Over the years, Jess has used several different cases for her Talker.

The iAdapter case looks industrial is built like a tank and is heavy.  It had a built-in stand and carrying strap, as well as, a built-in speaker which is helpful in loud classrooms.  Within a year, the carrying strap broke where it attached to the case. I will say their Customer service was excellent, but this case was too bulky and too expensive, and Jess needed the carry strap (helps prevent being left behind).

The Lifeproof case was more affordable and sturdy, however, it had a crappy carrying strap that either unthreaded or broke. Didn’t last. Note, there’s nothing wrong with the case itself, it just didn’t suit our purposes.

Out of desperation, I sewed a bag that enveloped the Lifeproof case. Jess needed to be able to carry her device. Wearing it prevents her from leaving it behind 99% of the time. (Yes, I repeated myself for emphasis.) This worked “okay” but was not a long-term solution.

We now have an Otterbox. First, I bought the carrying strap directly through the company, which we used with the Lifeproof case. I quickly realized we needed the Otterbox case for the carrying straps to hold on securely (the Otterbox is designed so the straps don’t slip off). The utility straps have a pouch. When attached a certain way, it doubles as a stand.

When considering the carrying strap for her Talker, I spoke with Otterbox directly. They have excellent customer service. The main office is in Colorado. Apparently, they have Otters!* Not sure if they help with the product testing but they sure are cute. I want one!

Upon realizing we needed the case, again I called the company. They only had black cases and have discontinued the colors (argh). They suggested I try Amazon. Sure enough, Amazon had a purple case and it was priced well.

Last night, the husband set up Jess’s new purple case (we prefer a color over black because it stands out and is easier to find). Jess’s Talker is labeled “This iPad is my voice…if found please return to…” 

As soon as Jess saw her new purple pad, she said “mine!”

The end

*the Otters are only 90 minutes north of Castle Rock. Might need to add this to the     “sites to see list” when I visit west.

There’s a trick to re-arranging furniture. The room needs to be emptied so you can have a blank slate. You can’t visualize a different floor plan when the old one is still in place. This allows you to have a fresh perspective.

I’m applying this concept to a few things. It’s time to revamp.

All these years, I’ve set time aside to model, or I have practiced on my own while Jess was in earshot. I’m realizing I should be using the talker all the time when speaking with her (Instead of checking the history to see her usage, I’ll be using the history feature to make sure my modeling time increases). Not convenient but it does put Jess and me on equal footing. She isn’t getting much support for her device outside the home (that’s the one downside to aging out of school) and she doesn’t have anyone in her social circle that uses a Talker either. Jess prefers to be succinct. The outside world isn’t going to take the time to follow her flow of thinking, so she needs to expand her thoughts and the only way to do that use her Talker.

This isn’t the only change for this New Year. I’ve fallen into the trap of taking the path of least resistance. It’s easier to do things myself and it’s more work asking Jess to help, or anyone for that matter. Even though I have, I don’t like making a career out of housework.  I like to get the jobs done quickly.  We’ve watched enough movies where the rich girls suddenly have to provide for themselves. It’s time for life to imitate art. Jess can do more for herself than I’ve let her. I’m sure this is a control thing but this post isn’t about me…lol

I’ve been witnessing Jess attempt things that had made her self-conscience. Up until recently, she’s needed a lot of cajoling. It probably doesn’t help to realize the words I say the most have been, “hurry up, let’s go, now, schnell’. Instead, I should be saying, “you can do this, I’ll wait, thank you for helping”!  

On New Year’s Day, we were watching the Mummer’s Parade. Some of the participants were well choreographed, however, the ones that looked like a group of friend’s (or should I say drunks) running around being silly were the ones who caught Jess’s attention. Maybe it’s because they made it look easy, or maybe because they were willing to make fools of themselves (I say that with love), it was enough to make Jess attempt to follow their dance moves. This is huge! Girl, if you can dance, then it’s not a stretch to ask you to make a bed!. It’s time for me to pass the baton. I’ve cleared the room, you are in control, you can do this!

 

*this has been implemented these last few days as has been successful!