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 – both speaking and using augmentative and alternative communication (AAC) – so 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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Am I Doing Enough?

I have a confession to make.

I always feel like I could be doing more.

More therapy at a clinic. More therapy at home. More education. More appointments with new specialists. More hands-on time with both kids. More creative projects. More time spent working on speech and learning. More, more, more.

I spend so much time writing to-do lists and daily schedules so I can squeeze as much as possible into each and every day. Because I made the decision to take on Solly’s education this year, I’m working tirelessly to get him caught up with what his peers are doing, to make sure he doesn’t start his public school experience, whenever that will be, more behind than he already is. My entire life right now, every waking moment of every day, revolves around Solly’s care and education. And being a good Mama to Bea. And taking care of all the household everything. img_5573

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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