If you haven’t heard the story, Mr. Tickle by Roger Hargreaves, you are missing out. I absolutely love the Mr. Men book series, and this story in particular always reminds me of Greyson, since he absolutely loves tickles. Mr. Tickle also has a way of making everything completely inconvenient for others due to his love of tickling, but luckily for us, I am not ticklish and Greyson likes receiving those tickles. Interesting enough, our pastor recently read Mr. Fussy as part of his sermon a few weeks ago. He used the connection of Mr. Fussy with a gospel reading where Jesus explains to his disciples the outcome of his life. Mr. Fussy loves to be in control of everything and is so particular about every detail of his life, it seems like utter chaos when his cousin, Mr. Clumsy comes to visit. In the true fashion of a person with OCD, losing control of a situation or any hiccup in the person’s “perfect” world, can cause severe internal panic and uneasiness. I know, because my life has been a complete hiccup since Greyson’s diagnosis journey began and you know there’s not enough Sertraline in the world to calm my nerves. Our pastor goes on to discuss how his life is a lot like the life of Mr. Fussy, with the world only feeling content when he is in complete control of it.
Why does this all matter? Well, about a year or so ago, Derek and I were discussing the benefits of Greyson having an iPad with Proloquo on it, to aid in his communication efforts. We both knew a few clients who used Proloquo to communicate with others and express wants/needs, but we knew that we would need a new iPad to run such an extensive app. After months of research and learning about the program, our hopes of getting the program for Greyson was fading, since the iPad, app and case for the tablet would be about $1,000. And who has that kind of money just hanging around? When Derek was at our church recording a worship service, he was voicing to our pastor and his daughter, the program and the possibility of Proloquo helping Greyson and our wonderful congregation pulled together money to provide us with a grant to fund all the necessary items for the program. We purchased the tablet, program and case and programmed the essentials- Proloquo, Disney Plus and Youtube. In Proloquo, you can personalize the buttons to have pictures instead of just words, so Greyson could associate the button with the picture, since he isn’t able to read. I set the photos to all of his commonly requested/needed items: drink, food, Mom, Dad, Roslynn, Grandparents, about 50 different Disney movies and of course, Tickles.
Neither Derek or I knew how to introduce Proloquo to a child since we have no Speech/Language training and have a limited knowledge of sign language, so we brainstormed with his ABA therapist how we were going to use the tablet in his daily sessions. We put the two main reinforcers for Greyson on the main screen, so he could request them whenever he wanted to: Gummy Bear and Tickle. I was optimistic to see Greyson taking to the tablet right away and with some help, was able to push and request to be tickled. Roslynn also got a kick out of showing Greyson how to push the button and get a tickle or gummy bear in response. Soon, this became a daily request/tickle match between the two. I was so excited to see them interact with eachother and it was great to see Roslynn respond to Greyson’s request. We are so incredibly fortunate to belong to such a wonderful congregation that truly cares about each and every person who comes into the church. We have been very blessed with a small, but mighty roster of members and they have been so supportive and amazing throughout our difficulties and our joys.
Greyson has been obsessed with corn lately. The people at the grocery store probably think that I am crazy, since I usually am buying 4 to 5 bags of frozen corn each week. He eats one bag of corn each afternoon when he gets home from school, along with his vegetable chicken nuggets. It seems like he always finds a food to become fixated on, it lasts about two or three weeks, then he never touches the food again. We are starting week 3 of the corn obsession, so I will let you know how it turns out. Earlier this year, the school psychologist told us that Greyson was functioning at about a 9 to 12 month level. I never realized how much he had regressed in some of his skills until I was watching him try to eat corn with a spoon. He was making a lot of progress with silverware when he was in early intervention, but over the past year or so, he refuses to try and use it. I was surprised when I put a bowl of corn in front of him with a spoon, and he began to use it.
I sat across from Greyson at the dining room table, teary eyed, watching him eat the corn. Here I am, watching this sweet little boy try so hard to eat with his silverware, but struggling with every scoop of the spoon. I took a short video of him to show Derek, and in hopes that I could find an older video of him using silverware to compare this one with. I wasn’t going to share the video, but I think it’s important to see how much he is struggling with these skills that he once had. I reviewed older videos of him from before he was having seizures, to this video and there truly is no comparison. A 10-month old Greyson was using utensils much easier than the now, almost five year-old Greyson sitting across from me. I figured be had regressed a good bit after the first few seizures, but flash forward 10-15 large seizures later, and he is a totally different child.
The new seizure meds he is currently taking has been helping a lot when it comes to his daytime episodes. We have noticed his “twitching” when falling asleep has gotten significantly better as well. We are hopeful that once the meds are all leveled out, we will be seeing his verbal communication efforts take off. For now, we will take what we can get, enjoy time together and push forward to the future.