We just got back from camping at Edisto Beach and Beaufort on Friday afternoon. Kayla’s sister mentioned that she wanted to take Kayla to the upstate to her aunt’s house Friday night and then go to a Southern gospel hymn sing on Saturday. I began preparing Kayla for the possibility (the choice would ultimately be hers!), on Friday morning while traveling the road to home. At first she gave me a adamant NO! by shaking her head. I always try to make her sign “No, thank you” so it seems more kindly given. She did just that a few times upon my mentioning the trip/visit. When we got home, I told her we needed to get her in the shower, and took out a magic purple overnight bag that she and I use when we go visit her aunt. I casually put it on the bed in the guest bedroom and slowly began placing some clothes and other necessities in it throughout the day. (Kayla glanced into that room every time she went down the hall to watch the progression on my packing). When her sister came after supper, Kayla was excited to see her and then perched on the couch in the living room. We visited awhile and low and behold Kayla signed “L” for her aunt’s name and her sister jumped up and said, “Oh, are you ready to go?” and Kayla shook her Yes sign, and got up from the couch. They had a great trip and I have been told Kayla giggled a lot and occasionally asked about me! While she was gone on Saturday, I was able to get a lot of things done without interruption that would have taken me much longer had Kayla been here. When Kayla got home she was excited to be here and checked out all around the kitchen to see what I had been doing, what I was preparing for Sunday lunch, and observe if I had purchased any new groceries. I missed her but am glad she was content to be somewhere without me and spend quality time with her sister and aunt.
My How Things Change
I don’t know about your child with Special Needs, but MINE has a hard time adapting to change! So this year of Covid has been one to remember. Kayla LOVES to shake hands with everyone at church! We have worked on fist and elbow bumps, but it’s not the same to her. So we are really going through the hand sanitizer. Clean hands have always been important, but more so in this time of uncertainty. I am more protective of Kayla because I know that IF we end up in the hospital our lives will be super stressed and if she ever goes on a ventilator, I’ll need to be on one too! Meanwhile, Kayla rides in the car a lot but she doesn’t go in to stores and other places like she did before. One of us sits in the vehicle with her while the other runs the errands. She HAS become more compliant with a mask while entering and exiting church, so that is a blessing!
COUNT DOWN!!!
We are back to summer time!! Kayla is counting down the days to getting in the pool. We have a little problem, the pool is not up yet and is still in the box. She points to the box on the sidewalk, signs “PULL” and signs “daddy work”. I have told her we have about 10 days left, but with the temperatures soaring next week, we may have to bump that number a little. That girl LOVES her pool and will spend 5-6 hours minimum in it each day, if she gets her way, and why wouldn’t she???
15
Apr, 2019
Congratulations Friend!!!
Our friend, Ryan, is a 2019 High School graduate!! We have known him since 4th grade and we were invited to his graduation party recently and had a great time. We had a blast as we ate cake, took pictures of Ryan in his cap and gown, and watched him open his gifts. I know he and his mom worked very hard to accomplish this goal for many years. A shout out to Ryan is in order!!!!!!
23
Dec, 2018
Cookie Time
Last week we made cookies to give our friends. I mixed and rolled out the dough and asked Kayla if she wanted to cut out the bells on the dough. She took the cookie cutter and pressed down into the dough and was successful with 3 bells until sensory overload became an issue and she began to look toward the ceiling and shaking her head and banging out lots of bells on top of one another. I had to roll the dough out again and guide her through the process. She watched while I removed them from the oven, mixed up the icing and completed the project. She managed to sneek 2 cookies and eat them before I caught her and quickly boxed them up so that we wouldn’t have a sugar overload to match the sensory overload. She anxiously awaits the day she gets to open her surprises. Well she has already opened some from friends who sent theirs early. She is VERY curious this year!!
Being Honest
Well, it’s time to let you know that all of our days are not enjoyable. As soon as the pool is taken down, or closed for the winter, Kayla is in the mood to get all of the Christmas decorations down from the attic and into the front yard. She KNOWS that pumpkins and fall leaf decorations mean its nearly time to bring on the greatest holiday of all. Kayla started asking (in sign language) around September 15, so each day we discuss what has to happen BEFORE we are ready and how many days are left until we decorate. Each day the emotions escalate as do the frustration levels. Kayla cannot express her feelings verbally, and has difficulty with expressing them in sign language, so she begins the process of pinching and torturing others while pulling out her own hair. Sometimes everyone ends up in tears, despite the fact that we have tried to redirect her attention and reason with her. Anytime we go on the front porch to get to the garage she reminds us that there is work to be done on this situation. We are glad that it is getting dark earlier now so that she stops harassing us to get busy on this task, at least for 15 hours.
8
Oct, 2018
A Kiss is Worth A Thousand Words
Since Kayla has never uttered intelligible words, we often assume what she is thinking. Here is what she leaned over to do in a restaurant recently while getting to know her brand new cousin. Maybe she is saying, “I love you little boy!! I am happy to be your cousin and in your presence. I can’t wait for you to get bigger and climb all over the place, and scoot and run and jump and talk to me just like your big sister does. I cannot tell you in words how much I love you, but I do and maybe this picture will show everyone that a kiss is worth a thousand words.”
8
Oct, 2018
The Newest Family Member
Kayla was so excited to meet her new second cousin in person. She loves watching but seldom wants to touch. She likes sitting next to whoever is holding him at the moment. This time it is Kayla’s mom (the great aunt) who received the honor. He is growing so fast that the next time we see him (Thanksgiving) he will probably be sitting straight up!!
25
Sep, 2018
Opa!! It’s All Greek To Me!
Kayla enjoyed eating at the Greek festival last weekend. The weather was just right to sit outside and chomp down on some Greek fries. The Baklava was too sticky to manage so mom got to enjoy that along with Greek chicken, salad and cheesecake. We will try to get to some other country’s foods soon since the President is speaking at the UN and we don’t want to hurt feelings of those who are from other places!!
25
Sep, 2018
Have YOU Been to the Ark?
Kayla visited the Ark Encounter in Kentucky a few years ago. Here is a picture of her there beside her brother and sister-in-law. There are SO many things to see and questions to be answered, like, “How did Noah get all those animals to fit?” Or, “How did they handle the feeding of the animals and getting rid of their waste?” “How did they plant a garden when they went out of the Ark after the flood waters went down?” All of these questions are given possible answers throughout the visit. And there is a petting zoo, and a great restaurant as well as the Creation Museum which is just down the road a piece. Plan to visit, it is well worth the time, trip and money.