Mr. Tickle

An actual story about G

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.

Vocalizing “Tick” for tickles!!
Lunchtime and getting him used to the tablet

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.

Enjoying his favorite veggie

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.

Playing with sissy’s barbies
My beautiful boy

Slippery When Wet

Lancaster County saw it’s first significant snowfall in years, during the first week of February. I absolutely loathe the snow and don’t go out in it, unless I desperately have to. Because it’s been quite some time since it snowed enough to “play” in, Greyson had never felt snow before. About a foot of snow fell in our town, so we went out to play in it as soon as the larger flakes died down…..we meaning: Derek, Roslynn, Greyson, Duke and myself. Duke loves the snow, so it was fun seeing him interact with the kids, who were both walking through snow right above their knees. I was very impressed with Duke, who goes outside on a tether that gives him free-range to the backyard. Any time that Greyson would get close to the perimeter of the yard, he would bark or go to Greyson and redirect him back to the playhouse we have outside for the kids. Greyson lasted about ten minutes outside before he got too cold and wanted to go inside. I think he liked the snow, but didn’t like the thick winter clothing.

Definitely not feeling the layers

Roslynn ended up staying outside with Derek and Duke for about an hour, until her cheeks were bright red from the cold. We had a minor snowfall last weekend and last evening, with more projected in the upcoming week. A very active winter weather pattern for the Pennsylvania area. Yay…..not.

We began Greyson’s new seizure medication about three weeks ago now, and we have noticed he’s been doing pretty well on them. He isn’t having any of the side effects that we were warned about, except for flushed skin when he first takes an increased dose (we have to slowly increase this med to avoid blisters, which I guess is a common issue if given too much of this med, too soon.). He hasn’t been too drowsy and his sleep has been a bit more sound, which is always very welcomed. The only downside we have seen is that he has been a little more aggressive recently, but I think its Greyson testing how far he can push us until we react to the aggression. If you’ve ever had a child smack you across the face, or headbutt your nose for no apparent reason, then you know how difficult it is to keep a straight face and not react at all to random acts of violence from a toddler. I have been enjoying all of the snuggles and kisses he’s been giving as well, but once he turns into Mr. Hyde, the gig is up and I am typically protecting myself with couch pillows.

Look how sweet my Dr. Jekyll is

Greyson’s hair was getting super long, so I scheduled an appointment for him yesterday with ShearFade in Strasburg. Kim, the owner, is a former special education teacher and is absolutely excellent with Greyson. She is patient, kind and doesn’t get annoyed when Greyson frequently tries to escape her chair. Probably not the best idea to schedule it on a Wednesday, since its our busiest day of the week, but it was really the only time that Derek had available for this week. Derek took a new position within his agency, so he went from an hourly rate to a salary position, but he did lose some flexibility now that he’s tied to a desk for half of the week. After the busy day of school, therapies, virtual class, and dance, I know that taking G for a haircut was the last thing that Derek wanted to do at 6:30 at night. Luckily, the haircut went well and despite a tantrum, Greyson came home with less hair. Fast forward to about 8:30 pm (Derek was home for about 45-minutes at this point), Derek took Greyson up for a bath, part of Greyson’s nightly routine.

Now, Greyson has been experiencing some difficulties in the bath recently, jumping in and out whenever he has the chance. He thinks it is his personal pooltime, so he isn’t really concerned about anything but jumping around. We have had a few instances where he slips and slides around, but doesn’t get hurt typically because Roslynn is in the tub to catch his fall. Last night though, Roslynn was pretty beat from dance class, so I promised her that she could have a bath this morning since she wanted to go to bed. About five minutes after I heard the tub water stop running, I heard a very loud BANG coming from the upstairs guest bathroom. Immediately after the BANG, I heard screaming and crying……and this was the “I’m hurt” cry that Greyson does when something is very wrong. Next thing I know, Derek is hollering for me to hurry up the stairs and as I approach the bathroom door, there is a lot of blood in the tub and on a bath towel that Derek is holding to Greyson’s face. He managed to jump into the tub, but instead of jumping into the water directly, he hit his face on the side of the tub, right onto Derek’s left hand, clipping Derek’s wedding band on his face. After assessing the siutation, I determined that G was most likely going to need stitches. I made the necessary phone calls to the Pediatrician and had them fax the referral over to LGH Emergency Department (I would’ve taken him to an urgent care, but all were closing at 9 pm and it was 8:52 pm by the time this all happened). Due to COVID-19 and the fact that I can’t handle Greyson very well, like Derek can, so Derek elected to take G to the ER. I felt absolutely awful because Derek was going out again and had only been home for about an hour out of his then 13-hour day, but it was the only way that G was getting stitches.

Front view of the injury
Side view of the wound

Derek got to the ER around 9:15 pm and was told that the wait was going to be awhile……little did we know, awhile meant 3 hours. Exhausted from working all day, taking G for a haircut and now waiting in an emergency room lobby, he was done for the day. Luckily, I was able to call and say something regarding the wait time and the fact that our son with special needs was waiting in a COVID infested petry dish, waiting for a few stitches. RIDICULOUS! This helped Derek get put into a “fast care” room almost immediately after. The doc did a quick evaluation of the area and determined G needed stitches…….well, duh. About an hour later, four stitches were put in to close up the very wide wound and Derek was waiting for discharge paperwork. By the time he got home, it was about 2 am. A ridiculously long, busy and exhausting day. Luckily, Greyson had no school today due to the minor snow overnight, so he was able to sleep in a bit. Since waking up, he’s managed to pull one of the four stitches out. Hoping he can keep the other three in until his skin has healed enough to close the gap.

The next week or so will be just as active as the local weather forecast. Greyson is having an MRI next Friday, February 19th to assess for any progression in his PVL, or if there is any new brain damage caused by Greyson’s self-injurious behaviors. Because the procedure require sedation and fasting, we are set to arrive in Philly by 6:30 am. WOOF. He also needs to have a negative COVID-19 test resulted to CHOP before we can check in, so hopefully all goes well and smoothly with that test on Tuesday. Please continue to keep G in your thoughts, since this next week will be hard for us with his school being on a 10-day break and with these upcoming diagnostic tests.

Next time you get into the shower or tub, just remember- it definitely is slippery when wet.