Checking In: Solly and Medical Cannabis

The other day, a video popped up on my Facebook memories. It was from a year ago, capturing the first time Solly said, “no!” It may not seem like much, but we were so thrilled that, at age 5, he was finally (finally!!!!!) saying “no” appropriately and unprompted.

This video was taken roughly a month and a half before we began our trial with medical cannabis. Since then, Solly has been communicating Рboth speaking and using augmentative and alternative communication (AAC) Рso much that it seems hard for us to remember the time when we ached for him to be able to tell us what he was thinking or what he wants, so when these memories pop up on social media, it helps us to recognize how far he has come in such a short time. While he had a handful of words before medical cannabis, we still struggled to really understand his preferences, what he wanted to do, and what he wanted to eat.

In mid-March of 2020, we had our first appointment with Dr. Bonni Goldstein, which kickstarted our trial with cannabis. I wrote a bit about our experience with CBD and THCa a few months later, when we first saw an unbelievable explosion of expressive speech. Shortly after writing the blog post, keeping up with our experimentation flew off my plate as I became hyper-focused on Solly trying to get an IEP before the start of school, deciding to pull him from public school, feeling like I was thrown in the deep end of the pool without knowing how to swim as I navigated putting together and teaching a homeschooling curriculum while being the primary caregiver, home therapist, medical coordinator, Mom to both Solly and Bea, and so much more.

Once I got my feet back under me and got into the groove of homeschooling and more organized with our day-to-day, we jumped back into our trial-and-error adventure with medical cannabis.

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Augmentative and Alternative Communication

Even though one of Sol’s strokes completely wiped out his speech center, speech is one thing that I never worried about as much as I did gross and fine motor skill development. He’s always been behind in speech, especially expressive speech, but it’s one area where we continue to see gains, even if it’s just a new sound. Before Sol’s first birthday, I met with a neuro-developmental researcher who was studying speech development after stroke and much of her research found that if one area of the brain was damaged, its mirror would take over the skills typically assigned to that section of the brain. Because the right side of Solly’s brain had much more healthy brain tissue than the left, she assured me that the right side would likely rewire to house his speech.

To date, Solly has few consistent words other than “hi” “bye bye” and “dada”. He continues to experiment with new sounds, showing new control over his tongue, particularly after our recent hyperbaric oxygen therapy. Yet, because he has difficulty with motor control and has a hard time with sign language, we find it hard to know what he wants. His inability to communicate with us pushed us to want to find other means of communication, so when our developmental pediatrician suggested an Augmentative and Alternative Communication (AAC) device evaluation, we jumped at the opportunity.

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Playing on the iPad. Easiest evalation ever!

Last Friday morning, Solly and I got up bright and early for an 8am evaluation at the Vanderbilt Bill Wilkerson Center. We met with a very sweet speech therapist who sat down and asked about Solly’s schedule, how he is communicating, what he likes to do the most, and what his gross and fine motor skills look like. She also asked about the speech therapy that we’d done in the past year and learned about our foray into AAC, which has consisted of a Big Mac button, a Twin Talks device, and communication via simple pictures. We also talked about the simple signs that Solly knows (“all done” and “more”) and the words he uses consistently.

 

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The GoTalk 4+

Then, for the next hour, the speech therapist played with Solly. They played music games on an iPad, worked with simple low tech communication devices, and high tech communication devices that looked very similar to an iPad. Afterwards, she explained to me that she was looking at how he used his hands to make selections on the devices, how he organized his motor skills to make those selections, and how he made selections when the device was placed on his left side versus his right side. Based on her findings, she suggested we start with a low tech communication device similar to the GoTalk 4+ or GoTalk 9+, thinking these would be a good way to start communicating with Solly until he’s ready for a more high tech device or until he’s able to speak on his own.

Next week, we start with a new speech therapist at High Hopes in Franklin. After we meet with her and set Solly’s goals, we’ll buy or borrow a low tech device and get started communicating (better) with our kiddo. We’re excited to see where this goes!