What I Learned Advocating For My Child With Special Needs During a Pandemic
Due to school closures and our decision to withdraw from camp this summer, my son went without in-person services for over five months. That's 179 days without his full schedule of therapies. We were lucky enough to have access to some in-home support, and my husband and I stepped in as best we could to fill the gaps, but we worried. Would this result in a regression? How would we be able to help him maintain all of the progress he's made? Would we ever be able to transition him back into a school-day routine?
When we got the go-ahead to go back and to start at a new school, we were nervous, so we did our best to prepare as much as we could. Though this looked different than years before, the basic tenets remained the same — we prioritized first and foremost the safety, well-being, and respect afforded to our son, then that the appropriate educational and therapeutic opportunities were given to him. But we've learned that advocating for our child with special needs has reached a new level during a pandemic. Besides maintaining the daily regimen of emails and contact with his team, IEP progress, program plans, and invoicing, COVID-19 has added substantial layers of safety protocols, accommodations, and adaptations.
Coming from advocating at the same school for the past three years and realizing that, above all else, it was time to make a change for our son, I was nervous. All his life, I've advocated endlessly to give him the very best. Whether that came in the form of attention from specialists, therapeutic or educational opportunities, or general day-to-day quality of life, I set the bar high. Starting somewhere new, in the middle of a pandemic, left me exhausted and, in some ways, diminished. How do you advocate during an unprecedented time? What's asking too much? What's not asking enough and not doing your due diligence? While I still can't really answer these questions, I can tell you when you find the right team, you know. That's frustrating and a nonanswer at best, but speaking from my experience, if after many discussions, there are more questions than answers and more anxiety than resolutions, it may be time to make a change.
After the very first intake meeting I had with the new school, I closed the computer on the Zoom meeting and in tears turned to my husband and told him I felt more had been accomplished for my son in the last 40 minutes than in the last year, and I had barely had to advocate once. I was nervous about sending my son into the world when we've been very carefully adhering to our local government's protocols since March, and I was met with endless examples of how the school would be approaching its new school year and was actually able to solely listen rather than quickly jot down endless follow-up questions. The absolute respect and transparency provided were not only welcome and appreciated but also life-changing (and I say that earnestly and not with a dramatic flair).
My son may be 6 years old, but the decisions being made on his behalf affect him more than absolutely anyone else. That's a fact that I do my best to keep at the forefront. He may currently be nonverbal, but don't for a second believe that he doesn't understand what is being said or done around him. While including a 6-year-old in decision making and planning isn't always reasonable, I don't hide or censor the conversation from him. I was very clear that he'd be beginning school again soon. I was open about the new school, class, and team that he met. We did our best to share it all with enthusiasm and excitement, with spontaneous dance parties celebrating the amazing year ahead and cheering him on as their newest and most awesome addition. We also did some of the things we'd normally do — picking out a brand-new PAW Patrol lunch box and ending our summer with apple picking and extraspecial family outings (all safe and socially distanced, of course).
There were also activities particular to this year, like a private tour of the new school he'd be attending. I knew this was important for my son so he could see this place that will be of such importance to him, at his own pace and in a calm manner, without the added excited activity that comes along with the beginning of school. At first, he was nervous as we entered the new hallways and rooms, but his face completely lit up when we got to his new classroom. So much so that he clearly requested to go back to see it two more times!
I knew that I also needed something from this tour but was unsure exactly what. But when I saw firsthand that my son was not only respected but also a valued addition, I knew I'd found what I was looking for. I ran through a list of questions I had compiled since our most recent email exchange and was again met with understanding, transparency, and partnership. Above all, I watched the interactions with my son.
So often, people will address their questions to me as he stands next to me. "Do you think he likes this?," "How is he?," and so on. During that tour, I saw staff make eye contact with him. I watched as they addressed his excitement to be visiting the class. I watched as they gave us space when he was initially nervous. I watched their respect for him happen organically and naturally, without any request. I left that tour with my little boy who was thrilled with his new classroom and with the knowledge that he would not only be supported within its walls but truly seen and valued as well. We've shown our son the respect of including him in the conversation and, with the help of the school, done our absolute best to set him up for success.
My son has to navigate considerable challenges every single day. I am constantly inspired by his ability to do so and still be one of the happiest people I know. There is nothing in the world like his smile or hug or watching him tear down yet another obstacle that others have labeled as insurmountable. I take it upon myself to harbor whatever I can on his behalf and to provide him with a childhood that is as extraordinary as he is.
Throughout the preparations for returning to school this year, I initially focused solely on COVID-19 protocols and therapeutic opportunities for him. It took a few setbacks to realize that while this year is different, and those items on the agenda are important, they were not the most important. My son's overall well-being and the ability to truly partner with a school that encourages him to reach higher will always remain top priority to me. What made the difference for us was the ability to discuss curriculum and COVID-19 within a constant and undeniable framework of compassion, empathy, and kindness.
If you have a family like ours, you probably already know that this pandemic may have taken away plenty, but it didn't take away our voices or our ability to advocate or know what's best for our children. We need to trust our teams, and we need to trust ourselves. We aren't strangers to the fact that so much is beyond our control and doing what we can, however we can, is our reality. These traits, these experiences, leave us better suited to meet this new type of school. With due diligence, positivity, and reflecting on our children's well-being and unique, individual, and critical needs to guide our decisions, we'll be prepared to face any and all challenges that come.