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

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

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

Living Life in Limbo: How We’re Doing in the Time of COVID-19

One of the biggest lessons Solly has taught me is that you can’t control everything. Keeping that in mind, it’s pretty ironic that he was born to a type-A, control freak – a.k.a. me.  It took me some time to learn how to go with the flow, but five years into our parenting journey, there’s not a whole lot that ruffles my feathers anymore. That being said, when the future is in limbo, I sometimes still struggle to remain calm and unworried.

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Snuggles at home

After we moved to California, everything was very much uncertain. Other than immediately getting Solly on the waitlist for weekly therapies, I didn’t worry about anything else: I figured things would eventually fall into place. And they did – we got a coveted weekly spot at NAPA Center for Physical, Occupational, and Speech therapies, I found a very sweet and super responsive pediatrician who Solly and I love, and we were able to make a dent in setting up our medical team, having one appointment with a neurodevelopmental optometrist and scheduled appointments with a well-respected pediatric neurologist and orthopedic surgeon. We even made contact with the school district to kick-start the IEP (Individualized Educational Plan) assessment process so Solly would be set up to start kindergarten in the Fall with all appropriate supports in place.

Then the COVID-19 pandemic hit. And, while we are all healthy and safe at home, a life in limbo became our unforeseeable future.

Here’s how we’re doing in all aspects of Solly’s life: Continue reading

We Joined The Trexo Walking Club

img_1563I once read that in order to create new neural pathways, a movement pattern must be repeated hundreds, if not thousands, of times. In practice, this proves to be true: we spent months and months helping Solly roll over and army crawl before he was able to do it on his own and we find that as we work towards more complex milestones, more and more work is needed. Putting in this amount of effort for every single inch- and milestone sounds nice and do-able in theory, but in reality, there is not enough time in the day for this much therapy.

I often find myself up in the middle of the night, researching techniques, procedures, medications, and more to help Solly recover to his full potential, which is how I found out about stem cells, SPML, hyperbaric oxygen therapy, and all the alternative therapies we’ve tried. It was during one such research session in the wee hours of the morning in the Fall of 2018 that I came across Trexo Robotics on Instagram.

Continue reading