Mary1991

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.

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.