Raise your hand if this pandemic has given you a greater appreciation for your child’s teachers and school staff.
I mean, I was a teacher myself, so I’ve always had a deep respect and love for the field of education and those who facilitate learning for all ages and levels. But even I have to admit I had become complacent and was taking things for granted before school closures forced me into a state of melancholy gratitude for what was, and anxious anticipation for what lay ahead.
I have two boys who are very different, and whose educational experiences and needs are as opposite as can be imagined. Ian is 16 and in the throes of his junior year of high school. His varsity baseball season, heavy college-prep course load, and robust social life came to a screeching halt overnight when the state of California shuttered its schools and it became crystal clear things were going to be very different for a while. And though sports and group gatherings are in the rearview mirror for the foreseeable future, it wasn’t long before Ian was holed up in his bedroom, his laptop open to Google Classroom as he began to navigate a new normal. His AP and honors courses quickly resumed and his days since have been filled with a steady stream of virtual class meetings, group projects, impending deadlines, and regular check-ins from teachers. We are lucky, Ian is self-motivated and has required little intervention on our part. For him, education continues relatively uninterrupted, and, academically, he will likely come out of this fairly unscathed in the long run. The potential impact on his mental health is yet to be revealed, and I imagine his generation will be closely studied in this area for years to come.
Another topic for another day.
But things are different for his older brother Andrew. Andrew just turned 18 in March and has a rare genetic disorder called SynGap1. This disorder causes autism, epilepsy, and global developmental delay to name a few. As a result, Andrew requires a school environment that by most standards would be considered the most restrictive, but which actually provides him the most freedom and opportunity to learn, grow and succeed. It took a lot of heartache, hindsight, and advocacy to finally find the perfect placement for our son, but since 2013 he has been attending a school filled with people who love and treasure him, who gently encourage him to keep going, who collectively cheer him up, and carry him over the finish line each day. Literally, if necessary.
To appropriately educate Andrew (and make no mistake, he and his peers are not just teachable, they are the hardest working students you will ever have the honor of meeting) it takes a village of knowledgeable professionals who are experts in their respective fields, and who are trained in evidence-based methodologies designed to obtain best outcomes for their students.
What I’m getting at is these guys know their shit.
So how am I, a mere mortal, supposed to replicate what they do at school each day?
And I won’t.
When I say it’s simple, I’m not trying to be smug. I know firsthand the devastation these school closures – as necessary as they have been – are for our special education student population and their families. We rely on school to not only help our children, but to give us the chance to take a deep breath and refuel so we can be the best versions of ourselves for them when they are home. There’s nothing simple about losing vital services. There’s nothing simple about the tremendous burden our most vulnerable students are forced to bear as they go without life-changing supports their parents and caregivers likely had to fight tooth and nail for.
And there’s nothing simple about the indisputable fallout from all of this. The only thing up for debate is just how great the chasm will be between skills and opportunities lost and skills and opportunities reclaimed. A debate likely to take place in IEP meetings across the country in the coming months.
What I’m saying is, it’s simply not possible for me to take on the role of Andrew’s speech therapist, his occupational therapist, his physical therapist, his special education teacher, his behavioral expert, and his behavioral interventionist. And yes, the last two are different people with different roles.
Yeah. When I said he has a village, I meant it.
Of course, I could try, but I’m 13 years sober and I’d really like to keep the streak going, you know? It seems to really work for me.
So instead of attempting to replicate school and inevitably failing, I’m taking a different approach, based on two distinct goals I have for Andrew during this pandemic:
To stay healthy – both physically and mentally.
To prevent as many self-injurious behaviors as humanly possible.
And one very important goal I have for myself:
To not burnout.
My first goal for Andrew is pretty self-explanatory. I want to keep Andrew as healthy as possible. Duh. That’s true always.
My second goal is to prevent him from hurting himself. Because of the nature of his disabilities and challenges, including the fact that Andrew is non-speaking, he will engage in heartbreaking self-injurious behaviors when frustrated, stressed, scared, hurt or ill. We’ve worked very hard over the years to create a home environment where Andrew can thrive, where he feels safe and loved and free from unnecessary demands and transitions, two top triggers for his behaviors. In fact, in 2018, after 14 years of in-home therapy, we made the decision to interrupt services and let home be home. We were tired of being Andrew’s therapists and just wanted to be his parents for a little while. We agonized over the decision for weeks, and we didn’t make it lightly. But once we did, we felt lighter than air, and the positive results, which have been monumental, speak for themselves.
Which is why trying to get Andrew to sit at a table so I can run IEP goals across all of his services (there aren’t enough hours in the day) and force him to attend daily or even weekly Zoom meetings with his giant roster of service providers will end in disaster. It’s a guaranteed fail on my part to even attempt it, and it’s unfair to Andrew to place that kind of pressure on him in the comfort of home, a place he relies on for balance, security, and familiarity.
And then there’s the part about me burning out.
No one wants that.
I cannot possibly fill the roles of the people at school. They are priceless and they are hard-working and they are irreplaceable.
But so am I.
The most important role I can possibly have.
And the one Andrew needs most right now.
That doesn’t mean I won’t try to help Andrew learn during this time. But it will be on our terms, based on natural opportunities that lend themselves to flexibility, Andrew’s interests, and as much joy as humanly possible. I love that his team at school understands him so well they absolutely agree with me.
While this approach may not work for every student, it is the right approach for our son and for our family.
And that’s actually the entire point of my long-winded post. You have to do what’s right for your kid and for your family. Do not buy into the idea there’s only one right way to do this. We are all floundering, and we are all doing our best. Even if best means finally taking a shower because you have a Zoom meeting in 30 minutes and no amount of lighting tricks is going to hide the fact you’ve given up hot water and shampoo since mid-March.
The most important job you have right now is not collecting data.
It’s keeping your sanity so you can assist the ones you love.
I’m so grateful for Andrew’s school team. We’ve received some great resources over the last several weeks and I’ve had some very meaningful virtual meetings that double as therapy sessions for me. And we just got word that every day at 3:00 the adaptive PE teacher will be holding virtual exercise classes and every Friday the art teacher will do a virtual art lesson. Maybe we’ll tune in sometimes and attempt to participate. And maybe we won’t. Andrew and I (but mostly Andrew) will decide each day what our threshold is, and we’ll go from there.
And eventually, when it’s time for school to resume, I know the road will be bumpy and reintegrating back into the classroom will come with its own challenges.
There are just some things you can count on in special needs parenting.
Which is why I’m determined to make the road we’re on right now as smooth as possible, so home continues to be where life is soft around the edges
and the kind of learning that’s taking place can’t be measured on a graph.
Because those are the lessons
that matter most anyway.