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A Hidden Consequence: Coronavirus And Special Needs Families

COVID-19 has changed the world in more ways than we can count, in a shorter amount of time than any of us could have expected.  In a matter of just a couple of months, the world population has seen dramatic change in everyday life with an emphasis on staying home and social distancing as much as possible, not to mention the extremely tragic amount of lives lost at the hands of the unparalleled pandemic. This has meant a tremendous amount of sacrifice on the part of everyone who is looking to help solve the problem, rather than make it worse.

While many of us, have undergone changes in our education, a transition that has sometimes been difficult, most of us have found ways to adjust. However, there is another kind of change that some people are enduring, and it has the potential to leave a devastating impact– one that could last long after this pandemic is over. I’m referring to the impact of this virus on the families of the special needs community, and on the family members themselves.   If you aren’t related to someone with special needs, especially a family member who does not live at home with you, perhaps you haven’t have thought much about how COVID-19 has affected them. But for those families who have to live separately from their special needs family member, the quarantine presents a very real problem, in terms of trust and understanding. In fact, it is a problem that could alter the behavior and relationships of everyone involved for months if not years to come.

Speaking from first-hand experience, the decision to move a family member into assisted living is not an easy one. Not for a parent, a sibling, a guardian, or anyone that truly loves the person to begin with. However, for the more severe cases, it usually ends up being the right decision in terms of development, and the lives of everyone moving forward. Nearly four years ago, my older brother Daniel (who was diagnosed with autism at the age of 3) moved into an assisted living program and has seen unprecedented positive improvements in behavior and everyday living, thanks to the extremely dedicated, passionate, and loving caretakers who have truly cherished him. Ever since the move, my family has worked out a routine with my brother in which he would get picked up on Friday night, go out to dinner and then spend the weekend at home with us before returning back for his school week every Sunday evening. This has been going on for years at this point; and through all the changes that he has seen, and the different people he has been introduced to, he had actually gotten used to it.  It was only when this unfortunate, yet necessary quarantine started that his routine– as well as his trust in us– was put at risk.

Around the same time that everything else started to shut down, Daniel’s home notified my parents that they would be going into a mandatory lockdown. This presented the option of either coming to pick him up and having him stay at home until further notice, or allowing him to be taken care of there– with no visitation or leaving the house. Yet again, this decision was no easy one to make; but with three of the four people currently in my household, working essential jobs where we are very much exposed to the virus on a consistent level, the decision was made that what was best for him was to remain there where he had constant supervision and less of an exposure risk.

That being said, nothing about this decision has been easy. For my parents, not being able to see their son has been an additional punch in the gut through all of this; and the same can be said for myself and my siblings, who now are lacking the unavoidably contagious smile and laughs of their brother. Not to mention how much hard work the people at these homes are putting in, taking care of everyone there around the clock through these tough times, something we are extremely grateful for. But despite how tough it all can feel, every one of us understands that unprecedented times call for unprecedented measures, and that this is all just temporary. Well, everyone except for my brother, which is where the problem lies.

Daniel has made a lot of progress over the last few years; however, his autism exists on a level that he still has problems understanding everything going on around him. The fact that he is non-verbal does not help either, as he also has trouble communicating his own thoughts and feelings, which makes it harder for us to help him. For Daniel, the coronavirus most likely doesn’t exist, there is no quarantine, and there is no pandemic.  As he understands it, he just hasn’t been with his family in over a month; he probably doesn’t understand why: the severity of the situation and the restrictions at hand are absent in his mind. Fortunately, his assisted living caretakers have made him available to us via Skype video calls on more than one occasion, but despite the ginormous smile that comes over his now bearded face when we get to talk to him, us speaking through a webcam does nothing for his understanding of the whole thing. In fact, the last time we did it, a matter of days ago, his first instinct was to walk to the front door and check if we were outside waiting for him.

These are the types of moments that cause us to fear that his trust in us is wavering more and more the longer this goes on, which has the potential of causing him to regress back to violent or angry behaviors due to confusion and the inability to communicate– behaviors that could last for some time moving forward. I know for a fact that we are not the only family dealing with such a delicate situation, as I have personally spoken with and heard about other people that are dealing with very similar if not the same exact circumstances. I can only assume, but I would be willing to bet, that there are countless other families out there going through this as well. So while my own family is completely willing to continue our part in flattening the curve, and are extremely grateful to everyone that has taken care of Daniel, and the rest of the special needs community who needs such love during this time, I would ask that if for whatever reason, someone reading this needs yet another motivation to stay home and practice social distancing, keep in mind these people who may have trouble truly grasping the severity of the situation, as well as understanding the fact that their loved ones did not abandon them. If we all do our part, the spread of the virus can be reversed, before it is too late; and everything can finally get back to being somewhat normal once and for all. And best of all, I will be able to see my brother again.

The author’s parents, David and Donna Desmond, in celebration with their son Daniel Desmond (middle) after his graduation ceremony in August of 2019.

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