Mary

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.

For the life of me, I can’t read a menu. Every time I go to a restaurant, I always prefer what other people had chosen. The problem is I order food I like and end up being disappointed because it never meets my expectations. Now I know why my Mother ordered last. It wasn’t because she couldn’t make a decision but rather she couldn’t read a menu either. [Read more…] about Guy Harvey’s Grill & Grog review

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.

 

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