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. Continue reading
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.
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.
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 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!
First of all, our needs are simple and our wants are few.
Second, we don’t want anything, we only think we do.
For years I fretted about purchasing the perfect gift until I realized, there is no such thing! As my mother said, “it’s the thought that counts”. She’s right, but honestly “the thought” doesn’t come out of nowhere, it emanates from listening. People will tell you everything you need to know if you give them time. Really, the best gift is giving someone your full attention (and for Jessie,,. modeling language is #1).
This year, I wrapped gifts in front of Jess so there wouldn’t be any mystery. She did attempt to peek at one, but quickly realized it wasn’t something that interested her. She left a trail of unwrapped paper. Someday she will learn to be a sleuth.
Up until now, no present had been safe. It’s an Angel thing. Nothing more exasperating than finding Jess opening gifts, especially ones not meant for her. It isn’t the mess that upsets me, it’s because I hate to wrap, and especially hate to re-wrap! So far, Jess has controlled her curiosity. I don’t know why I didn’t think of this sooner? I classify reaching a milestone as a gift.
When it comes to taking information in, Jess doesn’t have a filter. Like a thief, she cases a room. While in this process, it may appear that she’s overwhelmed and distracted but really she is memorizing every item. Once this is achieved she settles in.
Several days after we decorated our tree, a friend gave me an ornament. As soon as Jess returned home, she immediately walked up to the tree and touched it. Jess has the ability to find anything new within moments (this is why I’m concerned about putting gifts under the tree that were wrapped by others). When I misplace my glasses or keys, I can count on Jess to find them, however, sometimes I hide things from her and can’t find them myself, like her iPad. Last week she couldn’t help herself from watching E.T. It’s the only thing that is 86‘d from her movie list. Upon hearing the music, Jess whimpers and will cry. This has been going on for years…sigh… After being warned, she lost her viewing privileges. It was the only way to break the obsessive cycle. The iPad is so well hidden, now it is lost.
We did get an unexpected big present early this month. After running errands one morning, I returned home hours later to find the dishwasher running (this reminds me of a phone prank but I’m afraid many readers are too young to know the joke). The odd thing was when I powered it off, it didn’t shut down, had to flip the breaker. We now tease Jess that she got a new dishwasher for Christmas so she won’t have to do dishes! When you are happy about an appliance for a gift, it means you have crossed over to being a grown-up.
My parents gave me money for a washing machine when I was in my 20’s. It was used and it was hooked up outside (this is possible when living in a tropical climate). The WM’s name was Willy, the Wonder Washer. I was thrilled not to have to go to a laundromat. Jess’s DW is named May, as in May-tag a long, the quietest DW in the east! Okay, so a DW isn’t a simple gift. I’m not sure if it’s a need or a want, however, we do appreciate it being a time saver and working on life skills.
Some of the best presents have been cards delivered, unexpected phone calls and finding cookies at our door. It really isn’t about the gift, but the mystery of what it could be. Maybe this is why Jess is excited about a wrapped gift or prefers going out on adventures. It’s the anticipation of the unknown that is thrilling to her. Gifts are hard to find but time I have plenty.
Merry Christmas, Happy Holidays and wishing for Peace on Earth for the New Year!
PS- feeling grateful for all that we have.
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.