On Being Preverbal and Learning Our ABC’s

Young children with apraxia of speech who don’t talk yet are considered preverbal, not nonverbal.

Cari Ebert Seminars

The other day, I saw the above quote on a post on Instagram and my first reaction was “That’s Solly!” If you’ve followed us for awhile, you might know that, until this point, I’ve referred to Solly as nonverbal even though he has a growing vocabulary of words. This is because his speech is very delayed and in most social settings, he does not use many words other than “hi” or “bye”. Moving forward, because we are seeing his expressive speech develop more and more each day, I will only refer to his speech development as preverbal, or as the post went on to describe someone similar to Solly, “minimally verbal.” This is a very appropriate description of Solly’s developmental stage right now!

Speaking of being “preverbal”, we started to focus on the alphabet in our homeschooling curriculum last week. (Long story short: even though Solly is in “kindergarten”, I started him on a pre-Kindergarten curriculum to make sure he gets a good foundation. We’ll work our way towards a kindergarten curriculum, with a goal of starting that in the Spring.) Even though Solly’s words are really flowing right now and he tries to mimic so many other words that don’t easily come to him, I was shocked when our first go at reading the alphabet was this:

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Getting Started with Medical Cannabis

This is one of those posts that took me approximately one million years to write. It’s a post about starting Solly on medical cannabis, a subject that I’m still on the cusp of beginning to understand even though I’ve researched it for years. Before I begin the post, it’s important for me to note that, despite the stigma around marijuana, cannabis is a powerful medicine for many ailments, especially some of the challenges associated with pediatric stroke and cerebral palsy. Because each compound produced by the plant, or cannabinoid, can be used medically and in conjunction with other cannabinoids, and treatment for each person can vary widely, I highly recommend teaming with a doctor who understands how each cannabinoid can be used within a specific population. This is our story of how we’re getting started with medical cannabis under the guidance of a well-respected, very experienced doctor.  

If you follow me on Instagram or Facebook, chances are you’ve seen a few recent posts about Solly’s rapidly emerging expressive speech. After struggling to communicate with him for 5 years, I can’t even begin to put into words the impact this development has on our lives and how beyond excited we are that we’re starting to better understand Solly’s wants and needs.

Here’s one of the videos I shared earlier this year:

Most of Solly’s bilateral brain damage is in the left hemisphere where, in a typical brain, much of the speech center is located. There is quite a bit of research that indicates that if one side of the brain is impacted by stroke in childhood, the other side of the brain will rewire to take over these capabilities (here’s one publication with more details), but because Solly’s brain damage is extensive and widespread on both sides of the brain, we weren’t sure that would ever be the case.

As we’ve tried alternative therapies and procedures over the years – mainly hyperbaric oxygen therapy and stem cell therapy – in combination with traditional speech therapy, we’ve seen big gains in cognition and receptive speech and some small gains in expressive speech. While we’ve always been adamant that Solly’s cognition is right on track, his expressive speech has lagged significantly and everything we’ve done in the past has helped him in little spurts, but no huge gains. That is, not until lately. Continue reading

Word of the Day: Apraxia

Definition: Apraxia is a motor disorder caused by damage to the brain (specifically the posterior parietal cortex), in which the individual has difficulty with the motor planning to perform tasks or movements when asked. (Source)

I remember the first time I heard the word “Apraxia” mentioned as it applies to Solly. It was back in D.C. and Marie, our vision therapist, was holding a teeny tiny baby Solly. She placed him on her left side, trying to get him to move his eyes to look at her. It was difficult. When Solly was born, his eyes were stuck staring to the left side, and for the longest time, I worried this would always be the case. As she continued speaking to him, he started to dart his eyes over to the right side to check her out. It was progress. “It’s almost as if he has visual apraxia,” she said, meaning that he could see, he knew he needed to look to the right to see her, but his ocular muscles weren’t understanding what his brain was telling them to do.

Over the weeks that followed this particular appointment, we continued to work with Solly and his visual control began to improve. Today, if you were to meet Solly, you might see his eyes dance around as he focuses on you, but for the most part, he has good control over his eye movement. We know he sees (his Nana might tell you that he doesn’t miss anything!) and other than some possible peripheral visual field loss, the only thing he struggles with visually is this control over his eye muscles. In my book, since his control has gotten much, much better since those initial days, it’s not that big of a deal. He compensates quite well and it’s just something we’ll continue to watch and find ways to support as he grows up.

While the idea of difficulty with motor planning was often mentioned, especially with our new physical therapist, the term “apraxia” didn’t come up again until we were in Florida for our intensive therapy. While there, the physical therapist working with us watched Solly and suggested we have an evaluation with one of the speech therapists at Lampert’s who has years and years of experience with kids just like Sol.

She was amazing. If I could have packed her up and brought her back to Nashville with us, I would have.

She took tons of notes about Sol’s medical history, watched him eat, and asked him to move his mouth and tongue in certain ways. She explained that he has some apraxia, making it difficult for him to manipulate food in his mouth and move his mouth and hard and soft palettes to make different noises – or, to talk. She gave us a handful of exercises and stretches for Sol’s cheeks, lips, and tongue that will help bring awareness to each part of his mouth to help improve feeding and speaking. After just a couple of days, Sol was eating new textures, comfortably and easily. He’s also gained some weight since we met with her!

Difficulty with motor control affects almost everything Solly does – walk, talk, and grab for and look at objects. But that doesn’t mean that he can’t do them. We just need to teach him how and be patient with him as he figures out how to do what his brain is telling his muscles.

Years ago, I would have freaked out when I heard apraxia as a possible diagnosis. (Yes, it’s still a “possible” diagnosis as it’s not officially on his medical records, yet.) I probably would have jumped in bed, pulled the covers over my head, and cried non-stop. Now, I look at it as a blessing. It helps me understand how he’s processing – and not processing – what we’re teaching him, it tells me what types of people we need on his medical team, and it also reassures me that progress IS possible.

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Peekaboo!