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.
“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.
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 →
Let me let you in on a little secret: when I take a little break from Solly’s blog, it’s usually because I’m so anxious about something that I am struggling to put an experience into words. While we’re currently in the hospital with Solly recovering from SDR (spoiler!), I wanted to document our entire experience with this potentially life-changing surgery. So before I write about the actually surgery, this post, which I started writing over a month ago but never finished, picks up where the last post left off – our SDR consultation.
When Solly and I walked into Dr. Park’s office at the end of February, I was convinced that the appointment would be short, that, on the negative, we’d quick a quick “no” that would allow me to cross SDR off our list of possible interventions, and, on the positive, we’d finally – finally! – get some clarity around the type of cerebral palsy Solly has. Continue reading →
Now that Solly is settled in at school, we’ve been working on moving his therapy appointments to during school hours so his therapists can work with him in his classroom. This helps his teachers learn about some of the things he’s working on, but also teaches his peers more about Solly, like how to best communicate with him. While parents have the option to come back to the school to sit in on therapy appointments, we recently discovered that Solly can focus better during therapy if we aren’t present, so we’re starting to limit the appointments that we attend.
Today was the first day where his speech and feeding appointments fell during the school hours and where I chose not to attend. This afternoon, I got this email from Solly’s speech therapist: Continue reading →
Sol the Man 