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A Palilalia example. Have you ever heard of palilalia? Jess has done this ever since she started talking. Osmosis.org describes palilalia as “a rare speech disorder in which the speaker involuntarily repeats words, phrases, or sentences they have just spoken, often several times. The individual’s speech typically decreases in audibility and often accelerates in speed with each iteration.”
This is a perfect description for Jessica’s presentation of palilalia. In this video, I point out palilalia (echoing herself), self-talk, and engaging talk. Conversations with Jess almost always includes multiple elements of speech presentation such as echolalia, palilalia, self-talk, vocal stims, verbal stims, and back and forth engagement.
We are having a great start to the week! Everyone is here is happy and looking forward to the week. It definitely gives us all a boost when Jess wakes up in such a good mood. She also woke up decisive - announcing right away that she was making ‘crispies’ for breakfast. Crispies are bite sized hashbrowns, one of her long-term favorite breakfasts.
Jess is more engaged than she has been for a few days. On this morning, we were able to have more of a conversational morning. I am grateful for this turn-around.
One strategy I have been trying for several nights at least is to turn her tv onto a long movie or nature series simply in hopes of taking up a little space that is usually used for excessive thoughts. Jess is liking this strategy as well so we will be keeping it up.
“Siri, what time is it?” Jess being able to find out the time independently is important to all of us. Until Siri came into Jessica’s life, Jess asked us constantly, what time is it, or, how much longer until___. And when I say constantly, I mean like at least once a minute for hours on end when she was waiting on something, like a phone call, to happen. Bless Siri for filling in this gap. Sadly, with the most recent update Siri seems to not be able to answer “how much longer” anymore. 😭 So, we are working on having Siri set a timer then asking how much time is left. Unfortunately, for now this reduces some independence because we still have to help Jess by telling her how long to set the timer for. Anyway, I digress…
Sometimes, Jess will key in on a number, like the ‘6’ in 4:06 when she is waiting on 6:00. That’s what this discussion is in this video. When Jessica’s thoughts are busy with so many things all of the time, she just catches bits ands pieces of information coming her way. So, she’s waiting on 6, she hears a 6, so it must be 6:00.
What is Perseveration? Good morning, good ones! Can Jess independently set the table this morning? No, not today. As a continuation of yesterday morning’s post, Jess is still very distracted by inner thoughts. She struggles to keep any lines of thinking intact, except for her own that she is stuck on. This is called perseveration. Jess goes through phases of this and it can be very challenging to break through it and get a new line of thinking going. But, we will keep trying to engage with her and bring up new topics to see if we can get her switched to something else. #perseveration
Self-talk - what is it? We all do it, only most people self-talk inside their head rather than outloud. Jess self-talks outloud. When she’s busy with self-talk, she can still hear, of course, but she doesn’t process what she’s hearing as well. She also doesn’t perform tasks as well when she’s that busy with her own thoughts. This is very common for Jess, though sometimes she’s more wrapped up in thoughts than others.
When Jess self-talks out loud, we can get a good idea of what’s on her mind, and sometimes it’s a good way for us to help her through something that she might be stuck on. Other times, she’s very quiet about it and I am not sure what all is on her mind. The clue today was when she said ‘some people don’t like to talk about it, but it’s okay for me to’. I think she’s referring to talking about losing Abby, our dog that we lost a few years ago, but that some peole don’t want to talk about losing a pet or a loved one. It was probably on her mind because we were going to the vet.
Happy Friday, good ones! Jess got a special gift from her good friend Tinsel yesterday. Since she had already eaten, we saved it for this morning. She woke up bright and early ready to heat it up and good daddy helped her. Jess sounds pretty stuffy this morning, partly from being up early, but also she’s been sneezing a lot, I think from allergies. Hopefully it’s not a cold. 🤧
Happy Thanksgiving! We are gearing up for a long and good day. As usual for Thanksgiving, Jess is full of memories of Granny. But I’m determined to keep her active and engaged in buidling new and happy memories today.
Jess has sensory processing disorder, but thankfully, this is another area where we are seeing progress. Just watch her pat out these biscuits!
On our agenda today is roasting a turkey, cooking 2 casseroles, 2 pies, green beans, crock pot mac & cheese, corn souffle, gravy, and rolls.
Please share with us what you are cooking today!
How cool is this coaster? @opticoaster sent us this to try out. I was surprised and impressed how she was able to set her cup right on the coaster on her first try. I’m looking forward to continuing to work on this with her.
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As a young mother, I struggled to let messy activities unfold with all of my children. Jess also struggled with activities that meant messy hands. Until recently, messy hands often meant avoiding trying things. It’s part of sensory processing disorder. The sensation of things on her hands was a real issue. Recently, however, she’s making amazing progress in many areas, and that includes getting her hands messy.
Jess is 36, autistic and blind, developmentally delayed, and struggles with fine motor skills. If you are on a similar journey as ours, remember… progress never stops.
We did something a little different last night. We took Zoe to dinner at Jonathan’s! She did so great. The first few minutes she was a little nervous, then she settled and enjoyed watching the other dogs, people, and of course, food. This was Jessica’s first time at this restaurant and she approves! 😄 Besides allowing dogs, they had mozzarella sticks, pizza, and chocolate cake, and so much more. #dogfriendly #eatingoutside #standardpoodlesofinstagram
Jess is working on getting into a habit of putting her dishes in the dishwasher. You may wonder why we don’t just show her the correct method right away. I have previously shown her many times, but right now, the bigger goal is the step of getting them into the dishwasher. There are always new and/or additional things to learn, and it can get overwhelming, frustrating, and feel like a lot of pressure. For Jess, focusing on adding one skill or habit at a time is what works best.
Good morning good ones! Who ate the crispy crowns (hash browns)? I am pretty sure it was Jess, but she said it must have been someone else. 😄 Have you been following us for a long time? What do you think about how well Jess pours her juice? I’m so incredibly impressed with her progress.
And also, how about the spatula and potatoes? We’re trying using the smaller one because it’s easier for her coordination. Here’s the thing. It’s much easier for her to just reach down and pick them up, but she understands that working on the skill is important, and she sticks with it!
Hi everyone! Apologies for being absent for a while. I was a tad sick for a few days then got behind on everything while we started redecorating the living room. I’m working on getting caught up and will share some updates on the living room soon.
Jess has cortical blindess. Did you know? Sometimes the term cortical visual impairment is better known. We use the term cortical blindness more often because that is Jessica’s diagnosis. Not all people with cortical visual impairment are blind, but Jess is blind.
It is not unusual for people to not recognize her blindness or even that she is visually impaired. We have heard, “she doesn’t look blind,” many times. But generally speaking, blindness doesn’t have a ‘look’.
With cortical visual impairments, how much useable vision an individual has on any particular day can vary partly because of the significant effort required to use vision. The instability is often related to fatigue, illness, or lighting changes among other things.
While editing today’s video of the morning, I noticed that today is one of those days where it seems Jess is seeing very little, and consequently her blindess is more obvious as pointed out in this video.
Is there anything in this video you are surprised by?
A review of our week!
1 - Last Friday started off in the kitchen with sausage grits. Jess has been helping more and more in the kitchen.
About midday we noticed Zoë rubbing an eye a lot and I ended up taking her to the vet where they managed to get most of the debris out of her eye and put her on preventative antibiotic drops.
2 - Big breakfast Saturday! Biscuits and gravy with sausage. For supper, I made a wonderful Cashew Chicken sheet pan dinner.
3 - Sunday, we went to a local festival at Camp Jordan. Check out the size of @hannahbroooks frozen strawberry lemonade! There were lots of retail booths, food trucks, food tents, and live music. We had a fun time. For supper, Jess and I made a pretzel sheet pan dinner.
4 - TGIM! Monday means back to routine, and Jess independently made a breakfast of crispy crowns. We’re working on her scooping skills. A follower suggested a spatula with a shorter handle so we’re working on that. For dinner, Baddaddy helped me with a spaghetti dinner.
5 - Tuesday, Jess did an amazing job pouring her juice so I had to share this picture of that. Also Tuesday, Jess and I got to go out to run errands, have lunch on a patio with Zoë, then finished the day out at Nathan and Danna’s.
6 - Wednesday means spending time with Nonnie, and this week Jess got to go with me. We had a relaxing lunch and visit on the back porch. For dinner, a favorite - Pork Chop Casserole.
7 - Thursday! While Jess went with Nonnie and Granddad, I caught up on some much needed R&R.
Our week was busy but good. I hope you had a great week too!
Crushin’ It 🥨 ☺️ This reminds me of when Jess was a baby and Granddad would let Jess ‘bam bam’ the Tv remote control on the coffee table. She was not yet walking, but cruising, and would stand there and hold on to the table while she bam bammed the remote. He thought it was the cutest thing. She couldn’t say ‘bam’ but tried and it came out “ding ding ding”. 😄
Sometime in the last year or so we were making something in the kitchen and Jess referred to crushing as ‘bam bamming’ it and that has forever stuck in mine and Hannah’s mind and it’s just what we call it now. 🤷🏼♀️😄
Jess has cortical blindness. She was totally blind at birth through ~9 months. Following a shunt placement for hydrocephalus and the resulting lower pressure in her brain, Jess started being able to see lights and reflections. Over the years, Jess learned to utilize the little bit of vision in her left eye. For example, she can see colors, shapes, and detect movement. She can sometimes‘learn’ what something looks like - meaning she doesn’t ’see’ It like we do, but whatever it is that she can see, she can sometimes learn to identify what she is looking at.
In this video, Jess looks out the window. She can’t see things out that window, but she can tell if it’s dark, dawn, or daylight.
On the stove, Jess knows the pot is there and can see the shape or shadow of it, but she can’t see it enough to coordinate putting the lid on it.
Jessica’s functional vision can be difficult to understand. Is definitely difficult to explain. I’m going to start trying to catch these comparisons to point out to help promote understanding of how someone can be blind but also see some things.
How beautiful are these views?! We had a blast on our trip to Doll Mountain Campground at Carters Lake in Ellijay, GA. It was the perfect time to go, as the leaves had changed to the most beautiful colors, the weather was perfect and beautiful. One of our most favorite parts of the trip was walking down to the lake and looking out at all the beautiful fall trees and the crystal-clear water. Which is your favorite photo? Do you like camping in the fall?
We went to a small-town halloween festival and 5k! As caregivers, introverts, and people with depression and anxiety, sometimes we have to force ourselves to get out of the house. For us, usually the hardest part is actually getting ourselves out of the house. Then, we often find ourselves having fun and thankful we went. In this case, it was exactly that! Leading up to the event, we were dreading it, but once we got there, we had an absolute blast! We loved seeing the costumes and decorations and cheering for the costume contest and those finishing the 5k. Then, we went on a hayride, roasted marshmallows, and went on a ghost tour of the town!
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We went to an apple festival at Camp Jordan in East Ridge, Tennessee! This was such a fun day. We saw many different kinds of booths, ate some yummy foods, and of course had to buy a few things we didn’t need 😉
#caringforthecaregiver #caregiver #mentalhealth #anxietydisorder #anxiety #caregiverlife #anxietyfighter #anxietyawareness #selfcare #overcomer #anxietyfighter #yougotthis #Empowerment #independence #independentwomen #independentwoman #mentalhealthawareness #mentalhealthmatters #caregiverlife #fallfestival #fallfun #carnival #applefestival
