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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Let’s Talk About EEGs

 

This is the face of a 5 year-old stinker who, the moment his Mama finally fell asleep around 4am during his 24-hour EEG, expertly removed his gauze cap and several of his EEG leads and proceeded to whoop and holler as he twirled it above his head, lasso-style. I wasn’t sure if I should laugh at his crazy antics or cry over the fact that this likely split-second movement could result in a second night at the hospital. I chose the former, threw on my mask, and ran out into the hallway to see if the on-duty nurses could help me re-wrap his head to preserve whichever leads were still remaining. We laughed as they tried to recreate the wrap while Solly batted his eyes at me and said, “Hiiii Mama.”

Let me back up a second.

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We’ll Figure It Out

“Brave parenting is listening to the Knowing—ours and our children’s. It’s doing what’s true and beautiful for our child no matter how countercultural it seems. It’s about how when we know what our children need, we don’t pretend not to know.”

— Untamed by Glennon Doyle

One of the hardest things I’ve had to learn while raising a child like Solly is to listen to my inner voice. Some people may call that voice God, some, like author Glennon Doyle whose book I’m currently devouring, call it the Knowing, others may call it gut instinct. However you’d like to refer to it, it’s that little voice that pipes in or nudges you to say: “This doesn’t feel right. It shouldn’t be like this. Let’s do something different.” That little voice has guided me through moves, through therapy clinic changes, across the country seeking the right therapies and medical teams. My inner voice has compelled me to do things quite differently for Solly than many in the special needs world do.

Yet, that voice has led to Solly to learn and develop beyond what Mike and I dream possible. I still struggle when the little voice calls and tells me to move against the crowd and I ultimately drive Mike and my closest friends crazy with texts and phone calls looking for confirmation that my crazy ideas – SDR, medical cannabis, stem cells, moving across the country (again) – prove a better outcome.

That little voice has yet to fail me. I’m learning to listen to and trust it.

Yesterday, I withdrew Solly from our local school district for the upcoming school year. Given our environment in the United States and the continuous lack of consideration for children with disabilities, I couldn’t bear the thought of sending Solly to school – virtually – with a band-aid approach to support and services. (If you missed out on my last post about the struggles we’re facing with special education, catch up here.) To be honest, our school system has done everything they can while staying in accordance with the law and local unions: we were offered an interim IEP, built on medical records and a virtual interview with me, that would be finalized when school resumes in person. But the thing is, an interim IEP wouldn’t be able to begin to give Solly what he needs: one-on-one instruction, interpretation of his expressive speech, and a calm, slow approach to education. That combined with virtual learning would only frustrate him and cause him to fall further behind his peers than he already is. Solly needs someone to take things slowly, figure out how to teach him, and work with him to help build his confidence and mastery of the skills needed to enter elementary school.

In short, Solly needs me. Can I do this?

As we’ve been discussing how to handle this upcoming year and we started to discuss the possibility of homeschooling, I got really down on myself. My education and career have always been business-orientated, I know next to nothing about teaching a kindergarten curriculum. Not to mention adapting that curriculum to meet the needs of someone who is still technically nonverbal and who learns quite differently than the typical youngster.

After serious reflection I came to a realization: I have been teaching Solly since day 1. Most people watch in awe as their babies discover their hands and feet, learn to clap their handles or shake a rattle, learn to adjust their body and get into sitting, learn to say Mama or Dada. We didn’t get to experience any of that with Solly. We have taught Solly everything he knows that never came naturally. Had we not gotten him into therapy as early as we did, had we not learned to fight for what he needs, we wouldn’t have learned how to carry these techniques into our home and everyday interactions with Solly so he could learn how to hit those inch-stones. I’ve been working with Solly almost every single day of his life, I already know how to teach him. I can do this. I will figure it out.

Always learning at home

So. I have ordered a curriculum for him and have engaged a neuropsychologist to do a full, in-person, comprehensive assessment to develop an education plan for the upcoming school year. That will include a synopsis of how he learns, what accommodations he’ll need in the “classroom” and what therapies he’ll need to support his learning experience. It’ll be the equivalent of an IEP, but it’ll just be a plan that we’ll put into action with me as his teacher, his current therapy team as his school therapy team, the possible help of an in-home tutor, and socially distanced play dates with friends to make sure we get the social time Solly craves. We’ll also explore other possible interventions that can help him along the way. Some of the other positives with this plan include a flexible schedule with extra intensive therapies. Since this is a huge effort, I will add Bea into our homeschooling program so she can have a first year of pre-Kindergarten and get some special learning time with her Mama.

It’s daunting and I’m already exhausted just trying to think through it, but, like with everything else, we will figure it out. And I know it’s the best thing for Solly. Because my inner voice tells me that it is.

BFFs

Navigating Special Education During COVID

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This photo has nothing to do with this post, but might be a glimpse of what our Fall will look like!

There have been certain points in our experience with Solly where I sit down in tears on my couch and scream, “It shouldn’t have to be this hard!” Usually this is a statement reserved for fights with insurance companies for refusing to cover durable medical equipment or procedures, disagreements with doctors who want to stick a label on him and tell me what he can’t or won’t be able to do, or conversations with random, ignorant strangers who feel my son should be placed in an institution (for the record, this last type of conversation happens very infrequently – most conversations with strangers are kind and often uplifting – but when they do happen, man, it stings.)

Lately, I’ve been fretting and losing sleep over another topic: school.

Life is difficult for everyone these days. There’s so much uncertainty in the air, conflicting messages about how to stay safe and what you should or shouldn’t do during a global pandemic, and on top of everything else, kids are heading back to school. Continue reading

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