Hello! I am a little overdue with this post, but I didn’t have too much to add since the last one.
The Sunday before Thanksgiving, we set off to Pittsburgh (about a 3.5 hour drive) to meet with speech evaluators at the iCanTalk clinic. They are a wonderful group of people who evaluate individuals over the course of a few days to determine if they would be good candidates for a speech assistance device.
After dropping his sisters off with their grandparents, Declan, his father and I set off on our journey. He did fairly well with the ride…only crying for a short period before he put himself to sleep. For the rest of the ride, he played with his wrestling action figures, which required me to turn around and try to get them off the floor several times. They like to fly.
We got to the hotel and settled in, nervous for our appointment at 10:30 the following Monday morning. We weren’t sure what to expect, but had been told we should leave an hour early for what is essentially a 10 mile drive. I’m glad we did! We hit almost every red light on the ride in and had to circle several blocks to check out the best parking situation.
Once we arrived, we were told that they would essentially be evaluating Declan just by playing with him and watching him. They observed his motor skills, asked him to pick items out of a line up and attempted to grasp his sense of understanding of language. For example, there were two baby dolls. The evaluator called one ‘hers’ and the other one was ‘Declan’s’. She asked him to give her the baby that was ‘hers’. They also observed the sounds he made, signs he does, and the few words he does say (at this point he says, ‘mama’, ‘dada’, ‘ball’ and ‘ray-ra’, which means Regan, his sister).
After a few hours, we were sent back to the hotel to eat and allow Declan a nap (he declined), and an evaluator met us in our room several hours later to show us some iPad apps that could be used instead of a dedicated device. There are pros and cons to using an iPad. One pro is that you don’t have to go through insurance, and if you already have one, the only cost is the language app. Also, most children are familiar with them at a young age. However, they are not loud enough, necessitating the need for special speakers, the apps are very expensive, and children are familiar with them at a young age…essentially, they already associate them with game playing, not as a tool for communication.
After the evaluator left, we were on our own for the night and decided to check out the mall across the street. They have a nice little play area for kids, so we let Declan crawl around in there for a while, then had dinner at Red Robin. The balloon he received at the end (he just called it ball) was the highlight of his trip.
The next day we returned to the mall and met the evaluator and a Doctor at the Barnes and Noble to show Declan the dedicated Augmentative and Alternative Communication (AAC) Prentke Romich Company (PRC) device. The apps we were shown on the iPad used pages and pages of words, so essentially, the child would have to continually scroll to find the word they want, and making sentences could take a substantial amount of time. The PRC device uses a system that relies more on hieroglyphics. There is a main screen with a customizable number of buttons (dependent on the child’s fine motor skills and ability to hit smaller or larger buttons). One Egyptian Hieroglyph could have many meanings, decipherable by the others around around it. So, if Declan were to hit one of the pictures on the main screen, it would open a second screen that would have buttons related in several different ways to the first one, making it easier to put sentences together.
We bought Declan a cookie and sat down for a demo of the device. Within minutes, he was able to say ‘eat cookie’ using the device. We decided to go with this device. Of course, it requires several letters to be written requesting it, letters of medical necessity and then a lengthy insurance process. He may get one in several weeks.
I find this whole process a bit infuriating to tell the truth. My child cannot tell my he loves me (with words, he does hug), and I feel communication is a basic human right and there simply shouldn’t be so much red tape and run around to afford a child the opportunity to state his needs, wants and feelings. State capital, get ready…I’m on my way.
So, that was the higher points of our trip. We made it back, picked up our girls and headed home for a nice Thanksgiving meal with friends.
Now, on to Declan’s obsession with wrestling. A few years ago, we decided to buy the Royal Rumble pay per view because I heard The Rock was coming back. From then on, we watched every Raw and Smack Down and Declan grew more and more fascinated by it. I actually credit it with helping him with some of his motor skills. He climbs his dad and tries to wrestle his sisters. It keeps him muscles loose without such a need for traditional stretching.
His main love in wrestling is a wrestler named John Cena. Declan does not give kisses. I have tried and tried to show him how to blow kisses and tried and tried to get him to give me kisses. No dice. But, you know what he does do? Every time John Cena comes on the screen, he pops up, dances a bit and waves his hand in front of his face, imitating John Cena’s ‘You Can’t See Me’ gesture. When we were in Pittsburgh, we were able to watch the Survivor Series pay per view because we have the WWE network (of course). Here is a video of Declan reacting to John Cena.
Every morning, after breakfast, he requests to watch wrestling. He does this by putting his hands in fists and raising them up in the air (like a body builder making muscles). Or, sometimes, he points a finger and puts his arm up and down over and over in the Daniel Bryan ‘Yes’ movement. I apologize to those of you who don’t watch wrestling and have no idea what I’m talking about, but this stuff gives Declan life. I think in a year or so, we will take him to a match. They come to an arena close to our home.
So, that’s what’s been going on with Declan. Hopefully we will have his speech device in a few months. In the meantime, I’m thankful for multiple televisions and netflix on my phone, because, while I love wrestling, I don’t love it as much as my son does.