Mary

Social distancing? We have been doing this for years. This wasn’t exactly our choice but kind of came with the territory. When your child isn’t typical, people naturally distance themselves from you. This natural weeding process allowed for the cream to rise to the top and that is a good thing.

To those special teachers, therapists, caseworkers, and job coaches who by luck or by chance, were drawn to us, I want to thank you. Your time and effort have been life-changing for Jessie and I am grateful. As much as you were Jessie’s champions, the skills you shared have helped me too

We are taking advantage of this time to work on her life skills beginning with dressing. Either she is independent or she isn’t. My tweaking her (sports) bra (because easily gets twisted), or pull up her pants so she didn’t leave the house with plumbers-butt has to stop. Of course, she will need to pass inspection before leaving the house, however, there’s no need for me to be hands-on. Struggling is part of the learning process and we are both up for the challenge.

The only verbal prompt needed for dressing has been, “go back to your room and don’t come out until you are dressed”. Unfortunately, upon closer inspection, I realized she didn’t put on any of her undergarments, so she had to start over. The first few times, this took at least twenty minutes, however, her best time is now around eight. We are using the backward chaining method. This begins with modeling, followed by verbal prompts, then visual cues. Jessie has been doing a lot of the work herself, however, for some reason, I didn’t complete the final step of fading back.

The rest of our day we focus on chores; walking the dogs, moving laundry, and preparing meals to name just a few. Though I prefer to get jobs done quickly, I’m not stressing about it. For Jessie, all of this seems novel. Just wait till she realizes that housework is our new normal!

When the warmer weather arrives, I’ll have Jessie make lemonade. I’d like her to enjoy the fruits of her labor. In essence, isn’t this what we are doing now while staying the distance?

Who knows, maybe margaritas will be in order, along with a side of chips and guacamole. One thing I know for sure, we will be toasting all those special people who helped us along the way. 

Cheers!

When Jess was a newborn, our next-door neighbor couldn’t wait to hold her. As I placed my baby, my first and only child in her arms, she then said, “I have a terrible cold right now…” to which I immediately grabbed Jessie back. What would possess her to be so thoughtless?  Where was the common sense? Unfortunately, the damage was done and Jessie had her first cold before the week was out, however, I did learn a valuable lesson to be more discerning.

Several years later, Jessie had a well-check appointment in early January with her doctor. Being that it was cold and flu season, I had Jess wear mittens while in the waiting room. Too many times, Jessie had gotten sick after being at the doctor’s so it seemed a sensible solution. However, when the doctor saw her, he poo-pooed my logic. Jessie was at the stage where she needed the sensory feedback and put everything in her mouth and it made perfect sense to me to have her not touch toys and books that sick children had handled.

There’s nothing wrong with taking precautions when it comes to our health, yet during this current virus crisis, I’m a bit perplexed. I understand the concern but not the panic. We are being inundated with information, you’d think the world was ending. The difference between the last viral scare compared to now is how the media is covering the story. I don’t think people are stopping to process everything they are hearing. When the CDC advised those at high-risk stock up on supplies, the general public took this to include them. People are fighting over bottled water and there’s no toilet paper on the shelves. I’ve even heard that Corona beer sales were down by over 30% due to its name (think about that for a second and question the logic). This prompted me to write the company and tell them they are missing an opportunity. Their commercials should say that their beer is the perfect antidote because there is no healthier place to be than on the beach breathing in the salty air.

Like everyone else, Jessie’s program has been closed for the last two weeks. We are going to take advantage of this time and head to the shore. Sure, the water is cold, but a good dose of salty air will be refreshing! Even better it won’t be crowded.

It probably would be a good time to work on an art project. We have been collecting magazines for paper piecing and there are a few hikes that are calling our name too.

I’m looking forward to this time together. As they say, every crisis is an opportunity. Hopefully, everyone will chill and find a way to stay calm and carry on.

PS- If you can’t find, hand sanitizer or antibacterial wipes, make your own!

Hand sanitizer:

2/3 cup isopropyl rubbing alcohol, 99%

1/3 cup aloe vera gel

optional, 8-10 drops of essential oil, lavender, lemon, or any scent that you prefer.

Mix all ingredients together and store in a bottle

Here is a link, for antibacterial wipes.

 

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.