Special needs parents set sail into uncharted territory

The morning started with a half-hour school introduction lesson on my laptop. Oliver’s reaction to seeing his teacher live on the screen was priceless: surprised, excited, and then confused. I helped keep him focused on the screen as much as possible and prevented him from walking away. He has never done anything like this before. Also, he does not yet know how to work a laptop on his own. I then navigated through the dozen or so emails sent by Dylan’s school: reminders, lessons, and more lessons. I read through all of the material for a while, and printed the necessary assignments for the day. The more organized I remain, the easier it is for him to understand what is being asked and expected. Using more prompts and guidance, I worked together with Dylan to complete the day’s lessons. Once finished, I photographed his work and uploaded it to the school site. Neither one of my boys asks about the different school settings; they go along with it to the best of their abilities.

As the world comes to terms with the new challenges the COVID-19 virus is spreading, some families of children with special needs — like ours — are bracing themselves for the short and long-term effects of “a new normal.” Whatever that means. The irony, to begin with, is that “normal” never existed in our vocabulary. Used to being different and continually hustling to educate ourselves, our families, and others in every way possible, the evolving societal restrictions are just another chapter in an already exhaustingly long tome.

My sons have different special needs, and abilities. Dylan, my sweet and mild-tempered 17-year-old, falls somewhere within the mid to low end of the autism spectrum, with no conversational speech and occasional SIBs (self-injurious behaviors). Happy-go-lucky Oliver, age 10, is diagnosed with hypotonia (low muscle tone), apraxia of speech, and a CHRNA7 micro-duplication. Both have significant cognitive delays and communication restrictions and impairments. What does that mean, exactly?

Imagine trying to reason with a 6-month-old baby who is crying because he wants his milk. You know it’s heating up and on its way, but nothing you say can soothe the baby. Or explaining to a toddler that he cannot go to the park when there is a snowstorm. Frustrating as a parent, and for the unreachable child. You want nothing more than to help and let him know he is loved, understood, and important. Now replace the baby and toddler with a 10 and 17-year-old.

A cognitive delay functions similarly. Making sense of simple things in our daily living routine requires creativity, repetition, and sometimes extensive planning. Failure to comprehend can trigger behaviors such as meltdowns or anxiety attacks. Sometimes it feels as if the boys think we, as parents, are choosing not to do things for them. Despite having every tool imaginable to attempt communication, the current coronavirus headline is too complicated of an adult topic to describe to my kids with their level of functioning. Even “social distancing” is tough to explain and implement. Standing and waiting in line on a regular day is near impossible. Add spacing to that? Ha! Our efforts and energy right now are better invested towards important things like making sure the boys keep their hands out of their mouths, conquering potty training, and perfecting the crayon grasp. Believe me when I say, those are tough enough to tackle already. Now, we get to add the new stress of daily homeschooling.

Overnight, teachers have learned to use online platforms to continue teaching their curriculums. Parents — regardless of background, experience, and language barrier — are expected to follow suit. What happens to families like ours when parents have to work in or out of the home or if the children must attend daycare? Obviously, the school routine plays an important role. Not having the daily social interaction other classmates can easily find online can significantly affect the special needs population. Most parents can verbally direct typical children to their computer for schoolwork, or perhaps the students can independently find their way. That simply would not work in our situation. My kids’ attention span doesn’t last very long when trying virtual lessons. We must teach hand over hand, and prompt every step of the way… times two.

The only silver lining here? Ignorance can truly be bliss in this situation. My boys live in an innocent world of happiness. The very negative things in life, violence, envy, lies, greed, and selfishness, are alien to them. Granted, it can be a double-edged sword; they assume anyone approaching them is kind, and loving. Both Dylan and Oliver wake up excited and full of energy to tackle their day. They don’t know to question why we haven’t been going out to parks, malls, movies, beaches, and restaurants. Once in a while, they do request school by pointing to their uniform shirts or on photographs.

No one knows how long this new life will last, but I do know the potential for regression (the loss of their gains) is high. To the parents and teachers out there doing their best, just keep swimming. Be kind and forgiving to yourself, and continue washing those hands to the Barney theme song. You know, business as usual.

I see you.

I am with you.

I am you.