This past year has been the hardest yet for our family of three. No secret to the masses, this worldwide pandemic has been an intense, devastating wave. It has caused stress (like for millions of others) financially, as we rely on just one income. It has caused anxiety, and frustration and the feeling of loneliness. The feeling of being trapped and secluded. And it has caused the world death, and despair and heartache. We all know someone who has been affected, in one fashion or another.
But when you think of who has been hit the hardest, for many, special needs children are nowhere on that radar. I feel it impossible to describe the emotion behind watching your child be seemingly forgotten. Day in and day out in the last ten plus months, I have watched my child slowly regress. Autism winning, taking hold of his world, and ours, with no way to stop it. This grows apparent with every skill that has been lost and had to be relearned from previous years; things like simply staying seated, or throwing things away properly.
We have seen more compulsive behaviors like hoarding and hiding items (of no known rhyme or reason) under beds, and couches, and in drawers. We’ve witnessed it in sleep, as Beckett seems to need/get fewer and fewer hours of rest in, with each month that passes. We see this in every meltdown induced by simply having to leave our home (for any reason). Many days, Beckett does not want to be away from his safe space. His bubble. And every red light, every turn, every stop causes a tense meltdown.
And on that same token, visitors, family, they are no longer “welcomed” in our home with his sweet smile and overjoyed personality. But rather, with tears, and frustration, and hands leading them back to the front door, in an attempt to get them to leave. It’s evident in meals, as Beckett’s food list grows smaller yet, though we have tried hard to push new things. There is just too much “new” occurring for him in the day-to-day. And all the while, I still have to keep up that same previous, consistent fight, for him to be truly seen.
There are no specific protocols put in place for children like mine, on the spectrum, and with various other special needs. There is no change made just for them, to keep them excelling, or even just to keep them from backpedaling. Nothing to keep them grounded, in a world turned upside down. Where is their assistance when schools and centers close their doors? Where are they to put their trust, when instructors leave them to their devices, to attempt to learn “like everyone else”?
My son’s mind craves stability and schedules. His body needs consistency and routine. While all the world is going on to “Plan B” with online educating, and rotating schedules, children just like mine are forgotten in the shadows. Forced to magically transform, or “sit tight” and ride out the storm. How is my son to survive a world in crisis, implementing the very structures that push every “fight or flight” mode in his body?
With all my might, I will push to be the brightest beaming lighthouse he needs, to navigate this life, but I am just one light in this dark, wide ocean.
