Mary

As soon as Jess got out of the car, I realized what was missing, her Talker. It’s one thing to leave her coat or backpack behind but it’s another to return home without her AAC device. It’s been a couple of years since this has happened, so as upset as this makes me, I can’t complain too much.

The person that Jessie was closest to at her program had recently given notice. She’d been with us for many years but it was her time to move on. This news is always devastating, however, we’ve weathered this before. When you lose that most trusted person, it takes time before the void is filled. Until then, I need to pay even closer attention.

Often Jess sets her Talker down next to her lunch and sometimes she takes it off before putting her jacket on, so I can see how she can forget from time to time but ultimately, it is her responsibility. Even so, before the driver left, I made sure she realized how important it is to double-check for the Talker before leaving the program. I then reminded her that Jess has no voice if it isn’t with her. Then I called the program manager to tell her the same and asked for her to please make sure Jessie’s device was locked up for the night. I emphasized again that this is Jessie’s voice and needs to be with her at all times and that they were not to take this matter lightly. What I didn’t tell them is that Jessie has a backup Talker at home

After dealing with the staff, I then gave Jessie grief for not being responsible. I modeled my displeasure. If she wants people to take her seriously, then she needs to step it up too.

The following morning, our breakfast was interrupted by a very loud cricket. I know Jess has heard crickets before, and I don’t mean an awkward silence (though we’ve had plenty of those moments), however, I’m not sure if she has ever seen one. After listening to several on Youtube, we found one that sang like ours. Then we added cricket and chirping to her Talker, as well as, learned how and why they chirp.  If Jessie didn’t have access to her Talker, we would have missed this learning opportunity. 

Secretly, I hope the cricket joins us for breakfast tomorrow, but we won’t go all Big Bang Theory if we find it but it will give us the opportunity to talk about it again.

As you can see, we take AAC communication very seriously in this house. No wonder our motto is, don’t leave home without it!

Today I needed to use the app Speak for Yourself to help me talk! Being that October is AAC awareness month, I found this very serendipitous!

In years past, I have chosen to go voiceless but today after a dental appointment, I was in need. The right side of my face was numb, the corner of my mouth was drooping, and I could barely drink from a straw without dribbling. The last thing I wanted to do was talk, however, I had errands to run before my next appointment and I needed my voice. Fortunately, I have SFY on my phone for modeling language. In fact, I never leave home without it and I was good to go.

My first stop was for gas. I used the Hold That Thought feature to preprogram the phrase, “fill up with regular please”. Of course, I could tap out those words, however, being mindful of the line behind me, I chose the quickest way to make my request. When the attendant handed me the receipt, he smiled when I tapped, “thank you”. What impressed me the most was he was unfazed as if he sees someone using AAC every day. The reality is, it’s rather rare. If I’m lucky, I see one, maybe two people a year out in the community using devices.

The next stop was Trader Joe’s. The checker asked if I found everything and I tapped yes, and then said, “thank you for bagging”. I showed him my phone while it spoke and that helped him quickly connect the dots that this was my voice. He winked.

Nearer home, I stopped at my favorite coffee spot. I’m a regular and often chat with the cashier. After I tapped thank you, she tilted her head in question. I then tapped, “I am not able to talk”, then added, “dentist” which was all the explanation I needed. Next time I see her, I’ll tell her what AAC is about and why it is important to our family but now I was running late and had to scoot. It was a little frustrating to “talk and run” and didn’t complete the spreading awareness mission. As important it is to see AAC in action, it needs to be explained. Though none of these were long conversations, it was enough to convey my needs.

For every three people we have shared our AAC with, we’ve witnessed at least one of them telling another person, “we just met a girl who uses an iPad to talk”. Now if every AAC user did the same, our world would be that much bigger and this is what awareness is all about.

All good things start small. My first mommy retreat was a long weekend at the Black Bass Hotel. It is a historic inn, tucked in the heart of Bucks County on the Delaware River. With the blessing of my husband and the help of Jessie’s grandmother, I was able to get away with a friend. The end result was a rested Mom and a family that had missed me.

The next time I went away, it was for a week. The time after that was 15 days and that was a day too long for my husband. Over the years, here and there we took separate vacations, as well as, a family vacation which revolved around family. Mind you, vacation typically means a long weekend and for me, those times away alone were a minimum of five years apart. That’s a long time to wait to get off the grid.

Why do I share this? I share because it’s not selfish to take time for yourself. When you take care of a child with multiple needs, it’s easy to feel lost and rundown. It’s easy to find yourself filling everyone else’s needs before your own. Not that there is anything wrong with that but there comes a point you need to allow yourself to be first. Even so, once everyone’s needs were met, I did my best to make sure mine were met too. Needless to say, it’s exhausting always being on-duty.

There are several things I loved about getting out of Dodge; no school buses to wait for, no therapy appointments to rush off to, and not being on a schedule. My life had boiled down to “wash, rinse and repeat”. I’ve often said that when the family leaves in the morning the house is clean and it’s clean when they return. To the casual observer, it looks like I don’t do anything, however, anything that looks easy really takes a lot of work.

Upon return, I loved that I had been missed. I loved seeing and feeling appreciated. Dr. Phil would say that was my payoff. He may be a jerk in real life but that doesn’t mean he didn’t have wisdom to share.

Ultimately, the best part about running away from home is returning because I love my life and the people in it.

This summer, I didn’t find time away but I did take time off and stopped writing. It was the one thing I could control. The family needed me, my little jobs needed me and I felt like I had nothing to say. One week turned to two, then a month went by and I still hadn’t written. So now, this is my attempt to get back in the saddle again. Sometimes a physical break is needed and sometimes a mental one. I’m hoping now that my mind is rested, inspiration will come and the stories will write themselves. Haha, maybe not, we shall see.

PS- when summer was over, I did go to the shore for the weekend. Off-season calls me to the ocean. Though I didn’t need to get-away, I did feel at peace hearing the ocean. It’s good for the soul.

 

 

Last month, I had an unexpected trip to the emergency room. I was pleased how quickly I was taken care of but as I left, I was afraid to see what this was going to cost.

This is what happened. While chopping garlic, I sliced my left index finger, cutting through the nail. I didn’t know how deep. As it started to spurt blood, I quickly wrapped it with a paper towel and left for the ER. I could have gone to my local doctor but when I called, the message said: “in case of emergency, dial 911”. Even though this was urgent, I didn’t need an ambulance. My best option seemed to be to drive to the ER myself.

This is where the phrase, insult to injury applies. The hospital charged nearly $8,000 just for me to walk through the door. Their pharmacy fee was $328 and medical supplies nearly $800. Today I received another bill from the doctor and that was over $1,600. The grand total for my finger came to over $10,000 and that isn’t even with a ring on it.

Let me break this down further. The hospital charged over $1,000 for “medical supplies”; a bandaid and medical-grade superglue. I spent more time being processed as a patient than I did with the nurse practitioner. The majority of the time, I was sitting alone in a room.

My responsibility for the two bills is nearly $900. Insurance said I didn’t meet my deductible but this isn’t my issue. The fees make me feel like a victim of highway robbery.

THIS is one of the biggest problems with our insurance system. How do they justify these costs?

I work part-time, fifteen hours a week and make less than $10 an hour, before taxes. In order to pay this bill, I need to work a lot of hours.

I’ve called the hospital, the doctor and my insurance company. I’m just so disgusted.

Vent over.

PS- the medical community should be ashamed of itself.

UPDATE: The hospital immediately responded to my letter and we found a compromise however, the doctor group did not budge. They felt justified with the proper code and informed me that “they don’t charge by the hour”. Of course, they don’t because it can’t be justified. As for the code, I think they just picked one because there isn’t a code for a procedure that required no special equipment or for a procedure less than 15 minutes. I repeat, they should be ashamed of themselves. This is a legal white color crime.

By the way, one of the reasons doctor fees are so ridiculous is due to their need for malpractice insurance. They make mistakes and yet we are paying for that twice. SMH

The last thing I had to prep for dinner was the salad dressing. Instead of peeling off a clove of garlic from the head, I took a short cut and cut the stalk end. Bad idea. I lifted the knife off the board, a rookie mistake, it slipped off the garlic and onto my finger, chopping right through the nail. Immediately I called my husband to say I was going to the ER. He didn’t hesitate to say he would leave immediately and that he would meet Jessie’s ride. This happened at 1:30, Jessie usually returns home around 2:30, and our guests, who were flying in from Colorado, ETA was 4:30. It was going to be tight.

Capital Health is less than ten minutes from the house. I wrapped my finger in a paper towel and kept enough pressure on to prevent the bleeding. Visions of Saturday Night Live with Dan Ackroyd portraying Julie Child came to mind. At least I knew what to do, however, I didn’t know how bad my self-inflicted wound was. It was throbbing and I was afraid to look. What I did know was my finger needed more than a bandaid.

To make a long story short, the doctor irrigated the deep cut, glued my fingernail and the rest of the cut, and I was home by 3:30. This must be some kind of ER record!

While I was at the hospital, I was FaceTiming my husband. If we were going to save dinner, he needed to set the food out so it to come to room temperature, turn on the oven, mince the garlic and slice the tomatoes. I had left the bloody knife on the cutting board and he joked about cleaning up the scene of the crime. When Jessie came home, he then helped her shower and then they chose an outfit for the evening. (At the end of the night, he even did the dishes and cleaned the kitchen)

During all of this, I was so preoccupied with dinner and my injury, I didn’t include Jessie in on the conversation. Sadly, this is what happens when someone is non-verbal. Jessie was sitting with us in our living room when I told my husband about the hospital. I relayed that I was asked how I wanted to be identified, he or she, they rattled off several other options and ended with Q. Honestly, I don’t think this is necessary information with regards to my injured digit but I digress.

As I was finishing telling my story, Jessie said on her Talker, “emergency room”. Then she said, “her, her, her, her”. I wanted to smack my forehead. Of course, Jess was listening and she wanted me to share with her too. She told me this is how I should have answered the identity question. 

Jessie uses the app Speak for Yourself and has a custom vocabulary that is always growing. There is also a Babble feature where she can open all the words that have been preprogrammed into the iPad. So there are two ways to access speech. Babble is what she opened so she could find the word Emergency room. “Her” is on the home page but not a word she uses very often. As soon as she spoke, I felt guilty.

Immediately, I told her my story from the beginning. This answered why her Dad was home to greet her. Then I told her how they super glued my finger back together. Then showed her my bandaged finger. Finally, I made sure the word “emergency room” was opened in her custom vocabulary.

This whole event reminded me of how vital it is to make sure I include Jessie in ALL our conversations. She doesn’t have the social grace of looking a person in the eye when they are speaking. Too often it is assumed that she isn’t listening or doesn’t understand. I know this but people that don’t know Jessie well have a hard time accepting this concept. Jessie’s eye contact improves when we slow down the conversation making which makes her feel included. If she is in a group, then I need to be the one to draw her into the conversation.

Whispers are always messages, and if you don’t hear the message, the message turns into a problem. And if you don’t handle the problem, the problem turns into a crisis. And if you don’t handle the crisis, disaster. Your life is speaking to you. Oprah Winfrey, May 25, 2011

My injured finger was more than a whisper. I wouldn’t say it was a crisis either, however, I did hear my lesson and am sharing it so no one forgets that their Angel is watching and listening to everything you do and say. This was my not so gentle reminder to presume competence.

 

 

 

It’s so important to have a robust vocabulary at your fingertips! If the Babble words weren’t easily accessible to Jess, I would have no idea what she would want to say.