“My job is to pave the way, not to carry her conversations.
Having a voice means having a choice.
Angelman Syndrome, AAC and everything in between
We made this because Jessie was zooming with her day program. I like to parallel what they are doing at home. Here’s the link that goes with this.
Simple syrup:
Lemonade:
Chill the syrup and lemonade.
Most recipes say simple syrup is ready as soon as all the sugar dissolves, however, I prefer to reduce it a little bit to make it thicker. The goal is to layer the colors and you want this heavier than the lemonade.
Dissolve the sugar in the water. I prefer lemonade to have more of a pucker so added another 1/4 cup lemon juice, which gave a more contrasting color.
Put ice in the glass.
Pour 1-2 ounces of the simple syrup (depends on the size of glass, the goal is to make layers of color. Bottom blue, light green, and the top should be pale yellow.
Next, gently pour the lemonade.
Umbrella, optional.
If you are all dressed up this Easter and have nowhere to go, then you too are experiencing the coronavirus blues. Even though social distancing has forced us to celebrate differently, this didn’t stop Jessie from enjoying tea with a few of her oldest friends.
For us, this is a day of mixed emotions. As we celebrate Easter, we also mourn the loss of my mother and Jessie’s dog Ginger who both passed on this day, five years ago. Though they are not with us, their memory always will be and that is what we focus on. No one is spared. We all experience grief and we don’t get to choose what or when, however, this year it seems like it can’t get much worse.
After a month of social distancing and isolation, if we haven’t gotten sick, we probably have been passed over. At some point, we all need to venture out. If we don’t let go of fear, the suffering will be far greater. I’m concerned about people like our hairdresser who also has a second job as a waitress. How can she survive not working for a month or more? The models that restaurants operate from are based on how many tables they turn over. If we don’t venture out how many of the 650,000 restaurants will close their doors? How many jobs will suddenly be lost with them? Does this mean that the brick and mortar stores can no longer operate? Are we to order all our clothes online? I don’t know about you but I want to feel the material and try the clothes on that I purchase. This may not seem very important but it is to the people that work these jobs. It’s unrealistic to expect the government to support the whole country. Let me remind you to do the math. Even though this virus is one of the worst we’ve experienced, living in bubble wrap isn’t the long term solution either.
We may have not exactly lived off the grid but it feels like we have and for the most part, I think we have benefitted from it. Without the noise and distractions, this has allowed us to recenter our family and we have found ways to entertain ourselves, as well as, making do with what we have. The few times I’ve gone to the market, it’s been a positive experience, however, I’m disappointed when seeing latex gloves strewn all over the parking lot. There are convenient wastebaskets but apparently, some people only think of themselves. These same people that worry about getting sick probably don’t have the same regard for others. In times like this, we see the best and we see the worst in people.
Okay, this was supposed to be an upbeat, positive post. I digressed. I guess all I want is for people to have consideration and use common sense. If you are at risk and are afraid of venturing out, stay home and let others get back to work. Of course, if you have been exposed, self-quarantine and stay home.
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.
White Chicken Chili
Ingredients:
Add:
Add:
Garnish with:
Season with S&P to taste.
If it still lacks flavor, you can increase the spices to your liking, add more salsa, a tablespoon of Better than Bouillon, or all of the above. Like it creamier, add more sour cream. Like it hotter, add Tabasco or your choice of hot sauce. If you have chicken to use up, go ahead and add that too. This is a good way to use up a rotisserie chicken.
*Serve the chili with a dollop of sour cream, shredded cheddar cheese, a sprinkle of cilantro and a side of Tortilla chips